I've attached a presentation I made today to the Federal AIDS Policy Partnership -- I argue that hepatitis C can't just be "added on" to HIV advocacy and programs, but necessarily will disrupt and transform how we think about core issues around injection drug users, including prevention and treatment.
The presentation is a PowerPoint file: Download hepatitis_c_and_idus_new_lens.ppt
I'm also including my handout, a recent article entitled 'Overcoming barriers to prevention, care, and treatment of HCV in illicit drug users': Download overcoming_barriers_to_prevention_care_and_treatment_of_hcv_in_illicit_drug_users_edlin_2005_cid.pdf
Finally, here's a link to our brochure, 9 Tips for Treating Hepatitis C in Current and Former Drug Users (PDF file).
I would like a to see a copy of 'out of sight, out of time:Injection drug users, hepatitis C and HIV policy', however I never seem to get linked to that exact doc, maybe its my brain fog! For what it is worth I wondered if it was similar to my take on the situation in the UK;
I have pasted it in, it is called "Hep C- it's as if AIDS never happened!". feel free to reprint;
Grant McNally, the author, is the founder and former Chair of the UK Assembly on Hepatitis C, the UK's first hep C patient group, formed in 2000. He also set up and managed the first year of the National Hepatitis C Resource Centre, before heading the National Drug Users Development Agency from 2000 to 2002. A qualified Social Worker with an MSc, Grant has taught Harm Reduction modules at the Maudsley, Imperial Collage, Kings College, and a number of other universities. As an ex user and now an ex ex user he is also a member of the National User Advisory Group at the NTA (and works occasionally as a freelance trainer and consultant).
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For injecting drug users in the UK , the introduction of HIV and AIDS resulted in a political sea change in attitude that brought with it a new more compassionate and empathic approach to the treatment of drug users than had previously been the case. Prior to HIV, drug use in the UK carried heavy legal sanctions that had overridden treatment concerns, and where there existed treatment, it mainly comprised of what could be termed punitive medicine. In addition to this you were lucky if deemed mad, which along with the drug use would be a stain on your medical character for many, many years to come.
Harm Reduction as a concept began life as a response to AIDS, a pragmatic action to avoid an epidemic, and it worked, or on the face of it, it seemed to have worked. The UK avoided the HIV epidemic that wiped out large numbers of injecting drug users in other countries. With the success of this approach came a new and enlightened group of professionals who saw a wider value in the harm reduction ethos, beyond the prevention and containment of HIV. As time has passed the HIV fear has dimmed, there is now a new more widespread virus, termed the sleeping giant, but the potential for this virus to be transmitted to non injecting drug user is minimal. Crack cocaine and the vast amount of acquisitive crime it generates, are now the driving factors of the drugs field.
The Author contends that the encroachment of AIDS into the west, via drug injectors, did not occur at the rate the then social commentators predicted and for many Harm Reduction has less relevance to the drug treatment sector now than it did 16 years ago. Because, the priorities of crime reduction are more important to government, than seeming to throw money at drug users that is not attached to initiatives to promote them stopping that drug use.
Despite the best efforts to appear to be meeting the needs of the service consumer, the consumer can only know what is needed if he/she has the right information from which to determine what those needs may be. Regarding hepatitis C there is very little in the way of harm reduction being done on any significant level. For those infected users it seems to be a matter of fact that few of the professionals they deal with know more than the basics about hepatitis C. Back in the days of HIV there were HIV/Drug workers were everywhere; some had more HIV/Drug workers yet no HIV drug using clients! Professionals and academics have demonstrated their unhappiness at the seeming lack of more than cursory action. This resulting in a (forced) amendment that saw health improvement being written in as a core aim into the UK National Drug Strategy, but in spite of this, and a National Hepatitis C strategy which now has an Action Plan to implement that strategy. The willingness to follow this through is in direct tension with the ever-increasing need to balance health against criminal justice needs. As a result of this, with the majority of drug treatment moneys being attached to CJIP, CJIT (now DIP’s) and DTTO's, for the individuals with hepatitis C, it's as if AIDS never happened.
The fact is, though, that this lack of action will only serve to increase the pool of infection. And as found in those countries with a large prevalence, the bigger the pool the wider the ripples.
The economics of Hepatitis C
It is 15/16 years since the US biotech company Chiron Corp first identified the HCV virus, through genetic copying and then engaged in certain dubious practices in an attempt to wholly own it and any spin off. In that time the virus has gone through a metamorphosis, from a being described a benign infection that was thought to have little consequence for long-term health, to the serious global health concern it is now known as today. For their efforts Chiron Corp have benefited to the tune of a hundred million dollars or so in patent royalties payments (as I said, they even tried to patent the virus itself!).
The LA times recently reported that Chiron , (a Californian firm), has introduced a new policy for companies wishing to license its HCV patents. Chiron holds over 100 patents related to the HCV genome, which won't expire until 2015. Any company that develops a new drug targeting hepatitis C (such as a protease inhibitor), or a diagnostic test to detect and measure HCV (viral load; tests for screening the blood supply), needs to license Chiron's patents, typically by negotiating a licensing fee and royalties on product sales. Chiron typically charges each company millions of dollars in licensing fees during research and development alone, and makes millions more each year in royalties from HCV tests.
This went beyond the realms of ethical science and their followed a number of litigations, before Chiron brought in their new policy which is tied to future sales, so potentially allowing them to make even more money for themselves.
This obviously annoys the companies presently at the forefront of treatment products, which have to divert large chunks of their profits. It is not only the financial gains that upset people in the HCV field, but also, scientists have complained for years that Chiron Corp has hindered the fight against hepatitis by creating a virtual commercial monopoly over drug research.
Now, federal health officials are reviewing the 14-year-old government agreement that gave Chiron so much control over research that seeks to help the millions of people afflicted with the disease. It is this that has led to Chiron introducing the new royalty payment method reported above, a sort of buy now pay later.
Chiron currently hold 100 patents in 20 countries related to hepatitis C. Competitors had complained they' had abandoned plans to enter the field because Chiron demanded too much money to access its technology. (Chiron successfully sued many companies for infringing its patents related to the virus).
Those patents credit Chiron scientists with discovering the hepatitis C virus -- despite the fact that a scientist from the Centres for Disease Control and Prevention contributed much to the original research.
But the CDC signed away to Chiron most of the commercial control of the virus for a little more than $2.2 million in 1990.
There are, however, now over 50 medications in clinical trials for potential use relating to hepatitis C.
In 15 years hepatitis C has moved from an insignificant virus, akin to Epstein Barr Virus, to being a mass cash cow for the pharmaceutical industry. For instance if the UK prevalence was low, say 200,000 with viral RNA, then based on current statistical models around 60% could be eligible for treatment, which would work out at 120,000 at £6000 per 24 wk treatment cycle, would be £720,000,000. There would obviously be drop outs, non responders, etc, however, if factoring a percentage that will require 48 weeks treatment, £720 million, would not be far of the mark. This is only considering the current available treatments of Peggylated Interferon Alfa and Ribavirin, which has less than 50% success rates! So in the UK alone this a multi million pound industry, and this is just treatment, the economic costs of lost working years, other hospital treatments for the disease and it's many associated conditions, then there is the costs of benefits, mental health care and areas in drug rehabilitation failures I will address later.
Leading financial commentators estimate that the industry could be worth in excess of 3 billion dollars!!
Meantime there is still concern and tension between the U.S. patent system and free scientific inquiry.
The CDC now, for instance, claims ownership of the SARS virus and its entire genetic content after its researchers helped map the bug's genome. Rather than try to profit from it, the CDC wants to prevent others from monopolizing the field the way Chiron does with hepatitis C .
‘The politics' of drug use
Persistent blood borne viral infections are not new phenomenon to drug users, however, their acquaintance can possibly be traced back to the start of hypodermic injections, both licit and illicit. The headline grabber towards the end of the last century, however, was obviously HIV and the potential for this to be sexually spread to the non-drug injecting population. Let’s not pretend that this heralded a new era of user friendliness to drug users, it was a public health containment measure. Prior to this it may be fair to say that infections were viewed as scare tactic to prevent users injecting, otherwise it could be argued that a Harm Reduction response to the hepatitis B outbreaks in the early to mid 70's, with needle, syringe exchange and all the other HR accruements then there is a possibility that we may never have had the HIV and HCV figures that have come to light since Hepatitis B appeared. There are also a large number of viral infections that are carried by people, which have virtually no adverse consequences (though there is currently an ongoing debate on this); these include Epstein Barr Virus and others. In the 1994 edition of the National AIDS Manual (NAM) it was stated that it was believed that up to 64% of all IDU's were infected with Cytomegalovirus (CMV) a member of the herpes family, an infection described as benign, in that it causes virtually no adverse affect, unless you have HIV, where it can cause serious retinal problems.
Over the last 30 years we have made some enormous leaps in technology and the scientific understanding of viral infections, however, conversely viral infections have evolved at a similar rate, at times faster. Prevention therefore needs to acknowledge this and be pre-emptive to the viruses to come. The centre of attraction at the moment is hepatitis C, but the issue is blood. If the drugs field had used hepatitis B as the marker to inform HIV policy and practices, would so many have died of HIV? (Many HIV+ IDU's who died were believed to be co-infected with HCV).
There still exists a political edge to the issue, in many ways this is partly due to the legacy of HIV, in that there has been a fear of a knee jerk reaction, as occurred with HIV, where large amounts of ring fenced funds were allocated to drug services that did not see any of the projected numbers of HIV+ clients (outside certain large urban centres), resulting in funding being spent on inappropriate things like training to deal with things that would never be required, or worse diverted to fund car parks, office furniture and the like.
HCV was a blood born virus, with only limited research on sexual transmission. It did not have the urgency of HIV and best of all it seemed that it would not produce an epidemic amongst non drug-using heterosexuals. The situation seemed to return to the era of hepatitis B, and the sense that if you behaved like that (injecting drugs), what did you expect?
The dragging of feet over the issue has only postponed the obvious. I still feel that it cannot been nearly 9 years since my first international hep C talk, where at the time these were still similar issues, as can be seen by the titles of the preceding speakers:
• Barbara Broers ( Switzerland ): Success of HIV prevention, failure of HCV prevention?
• Judith Byrne ( Australia ): Let them eat cake.
(Metaphor for HCV+ individuals getting the crumbs from the HIV table)
My one was:
• Grant McNally ( UK ): Hepatitis C –the failure and future of harm reduction
Despite the issue growing internationally, there was still a desire in the UK and elsewhere to dampen down discussion and debate. The cost issue was one that the UK government did not want to repeat. Fingers had been burnt over HIV, and there was a desire not to let this one run away with money in the same way.
We now know, however, a great deal more about Hepatitis C and its long-term health and economic implications than we did in 1989, but despite this, a long time has still passed with minimal corresponding action being taken.
This has been leading to an ever-increasing number of ongoing transmissions. As stated previously, we also need to be ahead of the next virus/infection, (hepatitis G has been reported as co-infecting 33% of those positive for HCV in Australia). Therefore, it is prudent if we take an overall blood borne virus prevention stance then we will be able to pre-empt /prevent future blood borne virus transmission amongst drug users.
If not, it will cost much more than £720 million.
And it will rise far above that if action to prevent secondary infection and promotion of tertiary harm reduction –in the true meaning of the word- i.e. maintaining the health of those infected and reducing the chances of disease progression as far as is possible, is not taken up soon.
The Prevalence gap
Hard as it is to believe, there is still a great amount of debate about the possible numbers of people infected by hepatitis C in the UK , with various projections pitching figures between 200,000 at the lower end to 500,000 at the higher end. With such a wide margin the need to get a much clearer estimate is crucial if we are to meet future needs.
With global predictions having leapt by 30 million in the last ten years, from 170 million in 1994 to 200 million (World Health Organisation 2004) suspected as being infected in 2004. On the bright side the UK predictions are small in the global scheme of things.
It is not often mentioned, but, the global impact of HCV will mostly affect Asia, Africa and Central Eastern Europe/ ex Soviet bloc countries (Romania estimates 2 million from a population of 22 million), it is there that the numbers of those infected, mainly through noscomonial transmission, will be highest and there also that the figures for HIV/HCV co-infection will be both highest and have the most devastating health and economic consequences.
By comparison to other nations, the UK appears to be doing better per head of population infected than countries such as France, Australia and Italy (similar population size/GDP/Health Services/Drug Using patterns, etc). Compared to all three, our projections to date indicate we have possibly half to four times fewer infections than they have. However, as we have only tested 38-40,000 as positive to date, the prevailing numbers of those infected are still unaware of their status.
Awareness raising
Raising the profile of hepatitis C is difficult. It is difficult for those working with drug users, due to so many competing priorities placed them; DTTO's, user/ carer involvement, CJIP's, implementing models of care, QUADS, DANOS etc. It is difficult for and with users themselves; the place of HCV is low within a hierarchy of risks, competing as it is with more immediate concerns. It falls below the midway point, behind overdose, arrest, HIV, or losing your ‘hit'!!.
Additionally, infected individuals do not rate hepatitis C highly amongst future health concerns. Hepatitis C makes occasional forays into the media, usually frightening people with scary Pamela Anderson “I'm going to die soon” stories. But, most other times the serious problems are underplayed, out of sight, out of mind. Yet hepatitis C is now the number one cause of Liver transplantation in the USA , and given that a large number of those infected in the US will have restricted health care access, this say's something. Not an area for poor drug users to access. What it also says is, like other alcohol and tobacco related deaths, they are largely unseen only by those closely affected. Not in the glare of publicity like HIV. In the US this translates to about 5,000 - 10,000 deaths a year (so far).
Then again, the US did not embrace Harm Reduction as we rightly did in the UK . As a leader in the promotion of Harm Reduction from the late 80's, the approach has been seen as pivotal in preventing a possible HIV epidemic. There is no doubt that harm reduction played a part in this, introducing needle exchange schemes, outreach workers, street agencies, with some espousing a user led ethos and responsiveness to users needs.
But, it is apparent when looking at the HCV prevalence amongst users of some drug services, that some of that success was also connected to the timing and the low pool of HIV that existed in the IDU' community at that time - coupled with geographic containment - that led to this success. Though some might say luck played as big a part.
Although Tom Waller, Roger Holmes and others in the UK had sounded the alarm bells to the drugs field about the potential HCV epidemic, since the early 90's, it was not until 2001 that a group was drawn together to plan and write a national strategy for hepatitis C. And that was after the DOH had been pressurised by a number of top academics, GP's, consultants from both drug and Hepatology sectors, and others, and they continually door stepped the minister
The Action Plan
After many months work
The National Hepatitis C Strategy for England was put out for consultation in October 2002, and in July 2004, some 15 years after the first anti body test for HCV was developed, the DOH released the Action Plan to implement that strategy.
The Action Plan recommended the following actions:
Action 1: Surveillance and Research;
- To get a better idea of the numbers infected, as future capacity will be informed by gaining a more precise definition of the numbers infected in the UK .
Action 2: Increasing Awareness and reducing undiagnosed infections;
This is to begin with a national professional and public awareness campaign which is targeted at past injectors, this will be focused at having those who may have been at risk to come forward for testing. The DOH have employed a PR firm to launch an awareness raising campaign commencing in October and title face up to the past.
Action 3: is High quality health and social services
This will include PCT's ensuring that specialised services are commissioned, clinical networks are developed, adequate testing is available for all relevant tests that protocols are developed between primary and secondary care centres to ensure that pathways are developed to cover a range of health and social care needs
Action 4: Prevention;
Prevention to be intensified to reduce the spread in at risk populations.
The responsibilities of drug agencies
The National Treatment Agency has a number of areas to cover within the action plan. Within their intended actions are
• A National audit of needle exchange services .
• Regional audits of BBV prevalence and incidence amongst drug users, including interventions and agency interfaces and a series of regional projects which will target under reached and/or high risk groups to provide testing.
• Prevention/ treatment.
What form these will take is difficult to guess, however that is not to say that many of the actions cannot happen in tandem. For example, while improving the numbers testing, we should be raising awareness, and there is scope in this with specific targeting to get specific messages across.
The issue is whether agencies are prepared to think outside the box and commission innovative services that are able to roll out multi focused projects. Much money can be saved, if well thought out.
Rhodes and Davis (2004) highlighted that many users still operated under knowledge of HIV and that this received wisdom informs their activities to prevent HCV. Figures for those injecting pre needle exchange who are HCV+ are around 75% and above. For those using Post HIV/Needle Exchange, the figures still range from 40% at the lowest end to 65% and above. Figures for England as whole are around 54%. London and Scotland are higher comparable to the HIV rates found there in terms of per head of drug using population.
In France the aim has been to screen 85% of its population at risk. This has been happening, France has also treated 3 times as many patients as the UK has.
Injecting initiation
When questioned about worry that they may move to injecting, most non-injecting users will state that they will never inject. The line between injecting and not, then has a moral significance, in that some users belief that only injectors become dependant. These moral lines will be set and crossed at various times in a users ‘career'.
To understand why users engage in behaviours that lead to risks, it is helpful to look at the reasons why people inject, and why they are involved in joint or multiple acquisitions of drugs.
Whether users inject, and what drives transitions to injecting behaviour, are also subject to much debate. Though there will always be a proportion of users who will be prepared to take more risks, and those who inject as an extension of self-harming behaviour. In specific areas of the UK, it will depend very much on the dominant culture in the geographic area. This will be determined by factors such as the quality and quantity of drugs which are available, and in some areas where quality is low there will be a history of injecting as first route of consumption. So there are times where it is driven by the culture, though there is less real reason for this now with such wide availability. Added to that would be how injecting was accepted within the community.
The economic imperative that precedes injecting
In the main, the reasons why most users move from smoking/chasing heroin to intravenous use are financially driven. This may be short term, due to a drought or break in supply, or conversely a change in financial circumstances. As the person becomes more physiological dependant, tolerance levels rise leading to the person having to make stark moral choices. These will differ from person to person, but on average most users are as scared at the prospect of injecting as any other member of the public. Some will have a temporary move due to circumstances. But the core reason is that the user will receive more drug if taken intravenously than by other means. It will avoid the loss of part of the drug to which goes to air and atmosphere when smoked/chased and not bodily absorption.
In the vein you get 100% or near it, but, what makes transition back to previous routes hard, is the introduction of a new dynamic, the rush or euphoria often referred to in descriptions of injecting. As this usually takes over for a period, as one of the aims of use, few people move back to previous means, except when stabilized on oral medication or off drugs completely.
People learning to inject rely on the knowledge and received wisdom of others. This is despite the fact that the vast majority of injectors will claim to refuse to participate in the initiation others to injecting. Many will state that assistance is given to prevent greater harm.
Injecting drug users are mainly self-taught on the basis of peer information, or are initiated by a member of their peer group. Both routes rely on peer information accrued from experience and knowledge provided by professional media, filtering through different generations of user. Most current injecting drug users have, primarily, been ‘taught' injecting practices by an older generation - one that was only alerted to the dangers of HIV and prevention thereof. Hepatitis C, on the other hand, is a new, more virulent, and much more robust virus. Little is understood of the transmission through injecting behaviours. It is just this ‘inherited' learning which can lull many current users into believing that their behaviour is ‘safe,' while actually leaving them vulnerable not just to single, but to multiple incidences of exposure to the HCV virus.
Much is written about ‘equipment, or ‘paraphernalia', with little explanation of what this means, especially to the user. Terms like paraphernalia may have been heard of but few can say what it means. It also appears difficult to spell out the dangers that could place individuals at risk, like environment etc. Additionally looking at the equipment alone, the - Needles, Syringes, Filters, and Spoon/ cooking implement, Acidifier, Water container, Surfaces, all need to be seen in the context of accompanying behaviour. What people do!
Hand washing is not flagged up enough (hand wipes can be provided) and now that the law has been amended to allow distribution of sterile equipment, there is no reason why these things can't be provided.
Cognitive head banging, equipment can't transmit the virus without accompanying actions. To echo T Blair mantra except it’s;
Behaviour, behaviour, behaviour!
Integrating prevention messages into injecting rituals
To incorporate safe messages into injecting behaviour and ritual will require an understanding of how individuals come to be sharing this equipment. How it connects to the behaviours.
Looking at these issues can also point people in the direction of how they were infected, when they had operated in the belief that their behaviour was safe. They can compare to what they are now being informed of. This includes looking at the mechanics of sharing, as an extension of the economic imperative. From this can be teased out the reasons for joint acquisitions, which is not too far removed from food co-operatives. In addition this also widens networks for purchasing drugs. Sharing has to be seen in the context of joint preparation and looking at situations where blood may be passed.
Other important areas include Blood spills in the injecting environment. For example; through people checking for air bubbles in their syringe. This is a big deal to injectors who will remove the syringe and needle to expel the air bubble, particularly if blood is in the syringe, as they would want to expel the air quickly before the blood congeals and the hit is lost. People sometime draw water and spray mixed water and blood into the air.
How do users avoid transmission in these environments?
Received wisdom and commonsense ideologies
Unfortunately, most of the interventions that exist in the form of needle and paraphernalia exchange have little effect on those users out of touch with services. Without the corresponding prevention information about reducing the chances of contracting HCV, these interventions will not reduce the spread of the virus to other users in their communities. Fresh syringes and ‘anti-sharing' messages are ineffective if the user understands sharing to mean only the syringe, while continuing to inject in risky environments, sharing spoons, water and filter in order to ensure an equitable share of a communal purchase of drugs. All of the anti-HIV messages traditionally passed from older users to the next generation may, in fact, allow the virus to pass more easily, as those users persist in the belief that they are following safer injecting practices.
Many agencies have the opinion that in the current situation there is not a lot that they can do? A sense of bolt, horse and stable door seems to dominate.
Many feel, understandably overwhelmed by the fact that it appears inevitable that most clients will be infected with HCV. So what more can be done than get their drug use stable? Few would appear to consider secondary prevention, and the consequences of secondary infection, therefore users unsurprisingly pay little attention to it. So it is often the case that two injecting users, both diagnosed with hepatitis C saw problem in them sharing equipment or syringes. However, we know that hepatitis C comes in many different geno types and sub geno types. We also know, more importantly, know that some geno types require double the recommended amount of treatment, and that some geno types have less success in producing a sustained virological response.
The most straightforward issue here is that this will result in treatment costing double, in addition to causing the infected individual more loss of quality of life and the possibility of disease progressing at a quicker rate.
The most important thing agencies can currently do is to lessen the potential for co-infection of different geno types.
And Finally
Though recent studies have demonstrated that needle exchange provision is not reaching all injecting users to supply a clean syringe for every injection, we have recently found that current provision supplies on average one new needle per user every two days.
This obviously points to a deficit in provision. However, even with saturation coverage, if the operation of a needle exchange is only about supply, then infections will continue. 27 million needles and syringes were distributed through the NX system last year. One recent study showed that coverage is inadequate now. If more pieces of equipment require further investment, will supply be hindered by budget problems? This will have implications for the context in which equipment and information are given out. And be all the more reason to try to introduce and ingrain messages that make any re-use episodes safer.
The peer solution
Peer interventions could, as described in part 1, be the best way of reducing the numbers of those infected with hepatitis C. Not only that, but they could also have a number of other benefits, both in relation to HCV and in other areas such as user involvement.
Despite the best intentions of many professionals in the drugs field, safer injecting practices are much more credible when taught by peer educators, who are perceived as having the ‘street cred' and experience that professionals lack. This is, of course, not always the case, but peer educators are at least familiar with the chaotic situations in which injecting drug users may find themselves, situations in which safer injecting practices seem virtually impossible, and users are often forced to choose between illness and safety, a skewed ratio of immediate need to perceived long-term risk. But the credibility and integrity of the information will inform how that risk is assessed
Peers are more likely to be trusted, and this can be crucial in promulgating blood borne virus prevention information to users who are not likely to access services, except in crisis situations, nor place much faith in information provided by services whose primary aim is treatment.
Additionally, peer educators who are themselves infected or affected by hepatitis C can provide users with the benefit of their experiences, be that of testing, treatment, discrimination, etc., as well as positive role models of users/HCV+ individuals.
The sharing messages of peer educators with experience of HCV should provide active users, particularly those unwilling to undergo testing, with the support to face the realities of past unsafe, even if unintended, behaviour. HCV infected/affected individuals are also better able to participate in group discussions, with reference to personal experience.
Other things that add to this dynamic are:
Inside information, knowledge from personal experience and (again) trust are key factors in the success of peer education initiatives. Additionally, users are described as having ‘privileged access' to other users who are within their social networks but are out of contact with traditional drug treatment/health services, and who are thus able to ‘cascade' or ‘snowball' information throughout their peer group.
Within the peer group, self-disclosure can also be a springboard to successful education, and experience suggests that the most important feature of peer education and support are the social influences on drug users' attitudes toward safer behaviour and growth in users' self-efficacy through role-modelling initiatives. More simply stated, in the peer education model, the focus is on using peer-pressure in a positive way within users' broader social networks to reinforce harm minimising/health-oriented behaviours.
Studies over the last few years have shown that most injectors are reluctant to initiate other users into injecting and will do so mainly to prevent the person from causing more damage by attempting to do so themselves. Studies that have looked at the factors that precipitate the move, or consider the economic issues previously discussed are hard to find. For this reason, looking at transitions to injecting in isolation of those other factors will have little impact, and this would appear to be borne out by the statistics.
The key then is to get simple messages, easy to understand, into the injecting community.
For instance getting peer messages about HAND WASHING and SAFE SPACES, ingrained into injecting ritual, explaining the rationale, which is to wash off , rather than to kill the virus, and preparing a safe space, for example putting a barrier like a magazine, between you the user and the environment you are injecting in. Explaining that this will prevent infection from previous blood spills in the area in which the person is injecting. These two messages alone could have a significant affect on both primary and secondary prevention.
Broadly speaking, methods where peer influence can lead to HCV prevention, such as the above simple messages, and pointing out the behaviour-equipment link, being wrapped into injecting practice, may be the one way to have an impact on the numbers currently being infected, re-infected and super-infected with multiple genotypes.
In addition, once people get a better sense of whether they have been exposed to risk they should want to be tested. Peer information could make this journey less complex and bewildering by providing more informed pre-test information than if users had tested on the basis of a current campaign, such as anonymised testing to establish future treatment capacity needs. The experience of those who gave evidence to the UK discrimination enquiry found that those who were given their test results knew little about what happened next or that further tests were needed to establish if the person even still had the virus.
The potential is out there to make a difference; the issue is whether there is the will on the part of those commissioning services. That obviously depends on priorities and, unfortunately, hepatitis C does not appear to rate as a high priority for drug agencies with more urgent targets to meet. The NTA, for example, has no manager responsible for hepatitis C, in the way that they have lead managers in User/Care Involvement, Waiting Times and Criminal Justice. It could be argued that if the NTA was around 15 years ago, they would be expected to have someone with an HIV brief, reflecting all the HIV prevention/drug posts that were around then!
This begs the question: ‘has the reluctance to act been related in any way, to the fact that the potential risk to non drug users through sexual transmission is doubtful, if at all, and therefore, HCV is less of a public health issue in the way HIV was?'
A lack of honesty would seem apparent not only in relation to prevention, but throughout all the areas that follow from testing. It is perhaps possible that this lack of honesty and sense of inaction, leads individuals to perceive hepatitis C to be less serious concern than it should be. Getting to the truth is difficult, but the impression is exacerbated by the complex journey taken after testing, where no one seems to know what to expect and often the best information comes from the patient!
Testing Times
What each test is, and what it means.
Testing for HIV is pretty straightforward, you are either positive or negative, and cases that are more complicated than that are pretty rare. However, the tests for HCV are more complicated and this is very important as they can cause a lot of confusion.
An HCV Antibody test, the most common test, only tells you that the person has been in contact with the virus. They may have responded well and cleared the virus naturally, and current thinking is that up to 20% of individuals who come into contact with HCV may clear it spontaneously; this means that they then have the antibody but, no actual virus. It can also mean that antibodies are present and indicate active hepatitis C.
It takes between 6 to 12 weeks for the antibody response to happen from the time of exposure. It is not known, though, if individuals can clear the virus more than once. This leaves the possibility that the percentage chance of clearing the virus would go down for those who are frequently at risk, meaning that it would not normally apply to frequent injectors.
Unlike hepatitis B, though, just because you have cleared the virus once, you are not then immune to it. The antibody shows that virus has been there, almost like graffiti. To know if this is the case or not, requires a further test, to establish if viral RNA is still there. There are a couple of tests, though the main one is called a PCR, or Polymerise Chain Reaction test. This tests for active virus.
It is not known how long it should take from exposure to the virus to the detection of viral RNA. What would usually happen is that the virus avoids the immune system and begins to replicate. The more viral particles there are the more replication and the virus increases to the point where it can be detected. This is known as the threshold; if the virus is not detectable, it is said to be below the threshold and recorded as PCR negative. A PCR test is also used to determine if treatment has been successful or not.
‘Could the virus be too small to be picked up?' This is not very likely, but still possible, and may be one reason why most people are not offered a PCR at the early testing stages, add to which the cost of PCR testing, which works out at around £250 -£300 per person.
PCR testing is usually offered after antibody detection mainly in those with no identifiable risk factor. Where the risk factor is known to be through injecting drug use, it is usually at the biopsy stage when viral RNA is established (among other factors). Otherwise, PCR is mainly, it would seem, restricted to during and after treatment.
Antibody tests work out at around £20 -£25 (all tests need to carried out twice for accuracy) and Liver Function tests (LFTs) around the same. Liver function is self explanatory, and covers around 5 to 6 tests which assess the current functioning of the liver. When the liver is normal and not being attacked by a virus, toxins or other causes, it produces a level of bile and other substances and these ‘leak' into the blood stream at a certain rate. If there is damage of any kind, this will show through an increase in the normal range of bile and certain enzymes.
Liver function can change from day to day and usually there would need to be a sequence of very high levels in succession to indicate something was wrong. These tests are not the best, however, in determining damage that has been ongoing, but indicate more about what is happening now. Unless there is a lot of current inflammation, LFTs are not that useful. Some clinicians/ hepatologists will require that LFTs are above normal limits for a period up to six months before commencing treatment.
Genotyping, as stated before, is also important, HCV has, as we know, a number of geno types and sub geno types. There is obviously a need to identify which geno type a person has, as this will be important in determining how long the person will need to be taking treatment.
Current NICE (National Institute of Clinical Excellence) guidance recommends 24 weeks duration for genotype 3 and 48 weeks for genotype 1. However, there still appears to be a shortage of testing facilities and usually only those who have decided to take treatment and been accepted by their consultant, will be able to get a genotype test. Some have had to start treatment first then have the genotype test done, so some individuals have to wait until then before they know how long they will be on treatment! Recently, as a cost-saving measure, PCR testing is often limited to determining either a ‘non-1, non-4' genotype or a ‘positive-1 or -4' result. This is a shortcut to determine length of testing, but does a great disservice to the statistical record of specific genotypes found in the UK.
Other tests that are available are ones that measure viral load. There is a Qualitative PCR test and a Quantiplex Assay, which is another test that measures viral load. Viral load tests are rarely used at present, as viral load does not seem a factor in determining the success or failure of treatment, and they also cost the same as the RNA PCR test.
A Liver Biopsy is the process of taking a tiny microscopic sample of the Liver. This can tell: 1) that the virus is still present (RNA); 2) whether there has been any damage; and 3) what caused the damage, as the histological evidence of HCV is different than it would be if caused by alcohol or Hepatitis B (it has been explained to me that the architecture of the damage is different!).
Most consultants will say that this is the most effective way of diagnosing damage as a result of hepatitis C and it also keeps costs down as there is less need for a PCR. However biopsy does only measure the degree of damage to the specific area from where the liver sample was taken.
A new test to do the same as a biopsy, but more accurately and through a blood test has been developed in France and is called Fibrasure. Also, European Health directives have cleared the way for treatment to be offered in most European states without the need for a biopsy. This doesn't apply in the UK, however.
Ultrasound is another tool often used, either alone or in combination with biopsy, to determine current liver inflammation; its use in determining long term benign damage is less useful though. In advanced stages, hepatitis C can cause problems with blood clotting. In these cases, ultrasound alone is helpful where a biopsy cannot be performed due to the failure of the blood to clot after the biopsy.
To be sure that there are no potential problems with blood clotting, which if serious could result in death, before the biopsy is performed the person will have blood clotting factors checked 2-3 hours before the procedure. This is also why the person who has had the biopsy is required to stay in a day room for 6 hours, to ensure there are no problems. Blood pressure is measured every 15 minutes for the first 2 hours, each half an hour for the next 2 hours and hourly for the final 2 hours. Problems with blood pressure would indicate internal bleeding. It is unusual for this to happen when all the checks before the biopsy have been carried out. (It is interesting to note that after a Liver transplant a haemophiliac will no longer have blood-clotting problems! (Ironic?)
Once an individual has decided on treatment, then lots of other tests will follow. Some will be to see if the person ‘fits' the current criteria for entry to treatment, this is usually moderate to severe disease with moderate fibrosis (not cirrhotic). Tests will then follow to see if there are any factors that may preclude treatment, such as contraindications like autoimmune diseases, which can be made worse by treatment or pregnancy. A psychiatric evaluation may be done in order to determine whether the person is psychologically capable of dealing with the emotional rollercoaster that interferon injections can cause. Once treatment is underway, testing for anaemia will also be done on a regular basis, and Ribavirin may be discontinued if the anaemia is severe enough to warrant it.
So in terms of testing and diagnosis, hepatitis C can create lots of differing possibilities and situations. From the time of an antibody test until a biopsy is done can vary greatly from person to person. There are, however, no statistics on how many people have which genotype, so we don't really know what genotype is the most prevalent. We also have no figures for how many of the 39,000 HCV antibody positives (currently reported and in the NHS system) are also PCR positive. What is clear though, is that the figure of 20%, often stated in projections of disease progression for the number who will clear virus without treatment, will be much reduced when the majority will have had multiple risk incident and exposures! This does not get included when projections are done and so the cost analysis grows again.
Pre and Post Test
With testing being a complex and uncertain area, it would follow that pre-test counselling should acknowledge this, but it appears that it does not. Both the Mainliners HCV Discrimination report in 2002 and the New South Wales report of 2001 stated that many individuals had bad experiences having tests done, with test results left on telephone answering machines or given in corridors. Many reported that discrimination usually started after the test result, from the immediate prejudice that applies to drug users in general (and the attitude that the illness is self-inflicted!).
There are at present no national counselling guidelines for hepatitis C. The first few months and possibly years after diagnosis can be the hardest psychologically, and the failure of testing centres to offer counselling as opposed to post-test advice can leave the newly diagnosed completely without support! There are plenty of testing centres popping up but very few staff are competent enough to really handle pre- and post-test advice, not to mention counselling.
The issue of where to test is also problematic. There is a clear argument for testing in drug treatment centres and through GPs. GUM clinic testing offers anonymity, but some sexual health clinic managers have questioned the appropriateness of offering solo HCV testing, (as apposed to a multi-test which tests for everything, HIV, etc), as there is a lot of debate about whether HCV was transmitted sexually or not.
The majority of studies showing a sexual link would tend to be very low. Therefore, from a budget perspective, there would appear to be a point. The problem, is if this were to be the case, then it would take away the only opportunity to choose anonymity for those who have been at risk of HCV. In fact, the choice to remain anonymous is not explicit in the same way as HIV, where the choice would be offered; with HCV, it is the individual who needs to decide to use a pseudonym.
Thus, where the choice of where to test is still available, it is possibly the first thing that should be looked at. In looking at what is best, this must obviously take into account where the person ‘is', in terms of where they may wish to be tested, if a person is in a relationship, say married with children and a mortgage then this would make a difference than if the person was bang at it, drinking all day, scripted, using on top.
So pre test advice should include informing the person of consequences that may arise if they use their GP, for instance a positive result may have implications for that person that could affect their insurance premiums, or an endowment mortgage etc. Pre test should be also to identify the individual's involvement in risk activities, checking knowledge and correcting where wrong.
At the pre-test stage with someone who is still engaged in risk-taking behaviour, it provides an opportunity to inform the person of the risks that they may have taken in the past, as well as notify the person to the risks they may be open to in future. It should act on two fronts, gathering information as well as providing it.
Harm reduction and health promotion messages would be expected to be inherent in any advice, obviously determined by the knowledge base of the person doing the advising.
What happens after a positive antibody test will depend on a number of things; there may be a requirement for further testing, the doctor may take a wait-and-see attitude. If the person being advised is still risk taking, then they may need to go back and start again.
If the person is no longer at risk then what happens will change at different times during infection. Ongoing monitoring will depend on what stage the person is at in terms of disease progression. If the disease is mild, then the person will be seen every 3 – 6 months; if disease seems far off they may wait a year for the next appointment and then be seen every 3 or 6 months. For some people, this will mean years of testing and possibly ongoing biopsy's maybe required every 3-5 years.
One of the biggest problems with hepatitis C is that symptoms often don't relate to extent of liver disease. For example, some people have few symptoms and may have extensive liver damage, or a person may have a number of symptoms and overlapping conditions but their liver is only mildly fibrotic and has suffered minimal damage.
It has been acknowledged that for each individual, hepatitis C causes different problems. Also, each individual's experience of living with hepatitis C will be different, as the course of the disease can be overtly influenced by external factors, such as alcohol, drug use to diet, stress levels, etc. In terms of advice following testing, it is extremely difficult for anyone to predict what the outcome will be, unless liver disease is quite advanced, even then it can be difficult to predict how the body will cope with disease.
Preventing onward transmission within the family is an important function of post-test advice. This should be an area to concern people with hepatitis C, none less so than to avoid passing the virus to other family members. All household implements where blood may come into contact with blood: nail scissors, nail cutters, razors, etc., should never be shared. It is important, however, that things are looked at in perspective and commonsense applied where possible. There is a high potential for misinformation to guide discriminatory behaviour or attitudes, or to lull users into thinking that they are being safe when, in fact, they are putting them at risk.
Hepatitis C can add to an existing difficult family dynamics. Whether the risk is past, present or future, HCV can be a destabilizing influence in already shaky family relationships. The UK and Australian discrimination reports both showed that, from start to finish, hepatitis C could increase family pressures. As hepatitis C is already known to affect the mental health of those affected, this could add to a difficult situation with all kinds of possibilities.
Sexual Transmission
Sexual transmission is another area that stimulates debate and disagreement. The evidence is pretty much that sexual transmission is rare if at all (in cases of standard heterosexual penetrative sex). Some critics point to the figures of around 6% quoted in the USA with the sexual politics of that country, which can be seen in the way HIV agencies are restricted from programmes that do not promote sexual abstinence. Looking at the numbers of wives of haemophiliacs, the huge majority are HCV negative, which says something. There are some things we do not yet know that may aid sexual transmission, such as increased risk when there's a history of STDs, but further research is required.
Studies that flag up the possibilities of sexual transmission mostly originate from the United States, and there is some suggestion that this has as much to do with that country's moral high ground, in terms of promoting sexual abstinence outside marriage, than solid evidence showing why transmission can occur through sex, but, in only a small number of cases.
Obviously, anal sex and sex which involves blood play carry much higher levels of risk. Blood spills during sex would be thought to be a more likely reason, though until the possibility of this is concluded, individuals with HCV will continue to worry about this every time a Pamela Anderson story goes by.
Post-test Confusion
So the period after a test may be fraught with all kinds of worries and concerns. It can possibly be argued that the need for post-test counselling then is not so much required immediately after the test, but at other important junctures during the course of the illness. Intensive post-test counselling, in the way some view it, may not be required so much as advice and much will depend on the evidence and time frames. It may mean that longer term counselling is required at different stages.
Areas that do need to be covered in the first instance are referral to a specialist consultant and support systems for ongoing monitoring: assessing the individual in relation to how long they may have had the virus; looking back to first possible risk; examining behaviour; and assessing how the virus may be affecting them now, with regard to general symptoms, should also be carried out, along with note of any indicators of liver disease.
There are behavioural change that can in some cases be induced through positive diagnosis - that could positively influence drug and alcohol intake and other lifestyle factors. However, for some individuals, it could have the opposite effect in inducing negative behavioural changes such as increased drinking, risk taking, suicidal ideation, etc. There appears to be little interest in providing those individuals the space and help to stop drinking and or stabilise prescribed drug use – such rehabs existed 15 years ago for HIV+ users (the Fountain opened 1994, closed 1996).
Reducing harm to those with chronic HCV in the Criminal Justice system
Prisons are also an area to be concerned; data is limited, however, recent studies from Australia have indicated that prevalence figures there could be as high as 67% of all prisoners. Previous data in the UK indicated a projected figure of 15%, and this may obviously need to be revised. The move in Scotland to pilot projects which provide paraphernalia within the prison system certainly seems to be a step in the right direction in terms of reducing transmission between individuals and actually facing up to the real truths of drug use in prison and admitting there's a problem.
What needs to happen is a significant piece of research, alongside efforts to tackle prevention- through raising the issues on entry/induction, raising awareness that in a population where the “pool” of infection is high, the potential for spread to occur through non-drug using means will be high/increased. Prisoners at HMP Wayland have produced great video using money from the Drugscope Millennium Fund (called Hep C: Bang 2 Rights).
It is important to recognise that those with chronic HCV in prison or elsewhere within the criminal justice system have special needs to be met. Education and advice should be available, not just through the prison staff and those employed through CARATS, but through all prison staff. In particular, the use and hepatoxicity of Largactyl needs to be reviewed in light of deaths related to HCV/Largactyl.
Peer information and advice within the prison is of particular importance with respect to the prison population. Prison is a key vector of hepatitis C infection. As many of the inmates may be at risk from HCV infection, all methods of harm reduction should be considered. Kate Dolan and others have provided evidence from Australia that Methadone maintenance treatment within a prison setting prevents hepatitis C transmission.
In Scotland, some studies have been launched looking at methadone prescribing in prison, which would indicate a potential willingness to explore that here in England. A starting point would be that a working group should be set up to review the needs of HCV positive people within the criminal justice system, to consider urgently ways in which transmission can be prevented or reduced and to make recommendations for future health care and support needs.
This should be an important part of the National strategy, however, it is not clear what the Home Office intends to do! And there is little to suggest this is an issue that is being taken seriously!
PART 3 The journey through treatment - Grant McNally
Part 2 looked at the situation and complexities in HCV testing. This part looks at the treatment journey, what should happen and what does happen. It draws attention to the fact that in the long run, although HCV will only lead to a small percentage of deaths, that total will soon overtake AIDS. Summing up, there needs to be a number of changes to current practice and a greater multi disciplinary approach. Above all there needs to be a greater equity in access anti viral therapy.
INTRODUCTION ::
HCV Disease progression
The outcome for someone diagnosed with hepatitis C can vary hugely from person to person as so many other things can influence the course of the disease. This makes it difficult to predict what could happen. For one person the virus may cause minimal damage and they will live to an old age, for another person it could mean cirrhosis and liver failure.
A flowchart of disease progression was published in GP magazine in 1996 and was put together by Professor Geoffrey Deshiako from the Royal Free hospital in Hampstead and Prof Chris Tibbs then at Kings Collage. It looks at if 100 individuals were infected with HCV, and then states that this would be the estimated outcome. It is often used to illustrate disease pathways.
A problem I have pointed out with this model is that it is based on one exposure incident, rather than by individual people. Therefore, drug users who will take more than one risk or who are constantly at risk, will presumably have less chance of clearing the virus the more exposure incidents they have?
For example, hypothetically, if you had injected once using a shared spoon to cook the' hit', and the person you shared the spoon with was hep C positive and they had drawn up first from the spoon with an un-sterilised needle, which would count as one incident. In that first incident the person would have a 1 in 20 to 1 in 25 chance of clearing the virus. As I said in part 1, we do not know what the statistical chances are of clearing it more than once! If the situation is that you lose that percentage, or it diminishes over time, then the model will be inaccurate for the majority of those infected through drug use. Additionally the model is a best-case scenario, as it does not consider statistical variations caused by non -HCV disease co-morbidities. Nor does it consider that a large number may also be engaging in behaviour that could speed up and alter progression norms.
Time is a usually good indicator of an expected outcome - or an unexpected one. As a general rule of thumb, the length of time someone has been infected (not when they were diagnosed - if unsure go from the first two/three years of injecting) plus information on lifestyle during the period from infection to the present, will possibly provide some clues to what stage you would expect the person may be at regarding Liver disease.
In the scheme of things you would not expect to see either symptoms in general or Liver disease manifestations for at least 10 years, unless there are other factors speeding up progression.
If there are serious Liver problems and the person has no other factors that would speed up progression, such as HIV or chronic alcohol abuse, then this would require looking elsewhere, beyond hepatitis C. Some people with hepatitis C have been found to have a form of autoimmune Liver disease.
Although their could be some dispute around the percentages that are thought to clear HCV viral RNA, their is no reason to dispute the other parts of the algorithm which show that in general the majority of people with hepatitis C wont die from it, although it is still early days. Though what would be evident from deconstructing how the model does not apply to users would indicate that the progression figures for users would be worse, by how much is hard to quantify at this stage. The only addition to this is the concurrent damage from other behaviours, co existing morbidities, alcohol use etc. These could hasten disease progression and as these would be on a case by case basis, it would be hard to factor them in. So in effect although technically the algorithm is possibly accurate, it can only be a ‘best case' scenario. Include the other factors with the PCR, and you have the potential for a very different calculation.
Put simply the majority of HCV+ individuals will not die, but will have significant long-term chronic ill health and disability. What is difficult to predict is when this will happen.
This is quite different to what was being said 15 years ago, when hepatitis C was viewed by a number of professionals as a benign virus that caused few long-term problems.
Now we are seeing a 259% increase in Liver disease deaths in people assessed as moderate non problematic alcohol drinkers. Professor John Henry head of A&E at St Mary’s and former head of poison unit at guys , he has attributed this as the result of undiagnosed HCV in a group who had stopped use and viewed themselves as social drinkers.
The main group who will be affected soon, however, are those with multiple exposures (with the possibility of mixed geno types), and with concurrent long-term alcohol and drug use problems. In terms of mortality the group most affected will be male in the late 30's, early 40's, with long term opiate/alcohol use. Recent research however, by Professor Howard Thomas and Prof Graham Foster has indicated that the majority of those with chronic HCV will develop cirrhosis at some point.
Symptoms - what symptoms? ::
Symptoms and indicators of Liver disease cover a huge spectrum and as I have said previously, some people will have an array of symptoms and some will have none.
Many people will fall somewhere in- between. One reason for this is that HCV appears to behave in a dormant fashion for some years, acting benignly, and then flaring up after a certain period of time. How this happens has never been made clear, possibly because those studying the virus are still unsure. Some comparison can be found in theories about viral triggers to M.E or post viral fatigue syndrome. There have been claims by respected medics that M.E can be triggered by certain viruses. The implicated viruses are known as benign and unlikely to have consequences for the majority of people, but appear to cause some type of immune malfunction leading to a syndrome of symptoms. Among the viruses cited are Epstein Barr Virus (EBV), Coxsackie's B, Glandular Fever, other gastric flu type viruses and mentions here and there within the literature of hepatitis B. Some 10 years ago I wrote to the ME Association enquiring if HCV could possibly cause ME symptoms in some, and stated that some cases of M.E. had also been found to be HCV (there is no actual test for ME, though a test they do use is a VP1 which tests for viral protein, thus confirming a chronic persistent viral infection but, not which one!).
This situation may account for many people with HCV, who suffer the same problems that those with an ME diagnosis have faced for years, i.e. disbelieved, told their symptoms are psychosomatic or imagined. Prescribed psychotropic drugs and referred for therapy. In general, ME appears to have more cache in middle class groups (once referred to as yuppie flu in the 80's) and the ME society distanced themselves from any connection with HCV at around the same time we approached the ME Association, so few users would be granted the sobriquet of PVFS sufferers, coming from a group who are regularly subject to discrimination and unfair treatment by the general medical profession.
For other people with advanced Liver disease many of the symptoms they have will correlate to the many functions of the Liver. In other words, looking at what the liver does gives some clues as to why some symptoms arise. Of these, as energy production is an important function, so chronic fatigue or TATT (tired all the time) is a symptom referred to by HCV+ individuals as the most frequent. Myalgia or muscle aches/pains can also be traced to energy production, muscles burn up energy and become tired when it is not quickly replaced. Arthralgia or arthritis and joint pains of varying degrees are often reported with hepatitis C and there seems to be a strong association to autoimmune problems.
A lot of the symptoms relate to the gastro intestinal system, such as bowel problems, nausea, gastric reflux, loss of appetite etc.
Others are gender specific, for instance increased menstrual problems in women can be related to the livers role in hormone production and blood clotting. Gynocomastia, a swelling of breasts, only occurs in men, but can be traced to the same hormone imbalance. Depression and mood changes have had a long association with liver disease; these can be seen to be caused by chemical imbalances. This may also account for memory and concentration problems as recently reported by Professor Howard Thomas and colleagues at St Mary’s hospital London. This found cognitive impairment regardless of stage of Liver disease in some individuals with HCV.
There are now many recognised health conditions that are described as post hepatitis syndromes or overlap syndromes.
Where Liver disease has become severe other physically obvious symptoms manifest, such as Oedema and Ascites, both which occur after cirrhosis has scarred the majority of the liver. Heptocellular Carcinoma or liver cancer can happen after cirrhosis and
Hepatic Encephalopathy, a confused delirious state induced by toxins not being cleared from the body crossing the blood brain barrier. At late stages such as this then treatment will not be an option. Then the person would be assessed for transplant suitability. As the transplanted liver would be re-infected the decision to transplant will no doubt involve assessment of past behaviour, alcohol use, etc.
For some individuals a transplant may only buy a small amount of time especially if cancer has spread to other areas.
There will be a greater need for available livers to transplant in a few years.
Many people will, however, go for years with chronic disabilities such as pancreaitis or diabetes, both that have been found as common amongst people with hepatitis C.
Factors that may increase disease progression include people age over 40 and male, people with high alcohol use or co-infection with HIV or HBV. Excess use of hepatoxic drugs over a period may also influence the outcome. There is a lot of debate about advice relating to hepatoxic drugs, the standard rule is where the liver is damaged then there is a need to monitor medications to ensure they are being metabolised. Some patient types will need close scrutiny, these would include people with psychiatric illnesses. In the US this used to be known as a 'brown bag medical check'.
Dual Diagnosis ::
People with mental health problems should have their medication checked, as some psychotropic drugs are toxic to the liver. Drugs such as largactyl have been known to cause liver failure. Evidence-based advice is needed for professionals about prescribing potentially hepatotoxic drugs such as these to people with HCV.
Increased drug toxicity in those with advanced liver disease.
Some drugs, which are metabolised by the liver, may be harmful if blood levels accumulate, as is the case in severe liver disease. It has been suggested that impaired liver function due to hepatitis C may be a factor leading to increased deaths from heroin overdose (Warner-Smith et al, 2001). Urgent advice is needed by professionals as to whether or not it is safe to prescribe drugs such as tricyclic antidepressants, acamprosate and disulfiram to people who have chronic HCV. These drugs are contraindicated in those with severe liver disease. Long-acting drugs, which are metabolised by the liver, such as methadone and diazepam are likely to accumulate when Liver function is impaired and evidence-based advice is urgently needed for Doctors who prescribe these drugs to people with HCV.
Non-steroidal anti-inflammatory drugs may be nephrotoxic in patients with cirrhosis. Since these drugs are available over the counter it is important that those at risk of HCV-related cirrhosis are provided with appropriate advice.
Immunisations against hepatitis B and hepatitis A.
Simultaneous infection with multiple strains of hepatitis increases the risk of Liver failure, and the prevalence of HAV and HBV infection among those Already infected with HCV is high. Recent outbreaks of hepatitis A in UK drug users have been reported. As well as superadded infection with hepatitis A and hepatitis B, repeated infections with different viral types and subtypes of HCV may also accelerate liver damage.
All people who inject illicit drugs, or who are considered to be at risk of injecting, and all those who are known to have chronic hepatitis C infection, should be immunised against hepatitis A and hepatitis B as infections with these viruses are likely to accelerate progression of HCV disease.
Treatment ::
The Treatment of Injecting Drug Users :
Over the past 8 years there have been major developments in the area of HCV anti viral therapy. From the early days when treatment was first trailed with Interferon Alfa in mono therapy, to the new peggylated IFA/Ribavirin combinations. Success rates have gone from 25-30% with mono therapy to over 44% with the PEG combination. In addition those in the latter treatment group have a far greater Sustained Viralogical Response and the latter has had better results with geno type 1.
What aren't known are how multiple infections with different sub types impact on treatment failure.
The European Association for the Study of the Liver (EASL) consensus statement (EASL, 1999), the NICE guidelines (NICE, 2000) on combined interferon-ribavirin treatment of HCV (2000), and clinical guidelines on the management of hepatitis C by the British Society of Gastroentology (BSG, 2001) have excluded ‘ in general' all current injecting drug users from treatment.
However, the NICE guidelines have allowed an exception where the onus is on the drug user to reliably assure the prescribing clinician that re-infection, compliance and drug interactions pose no problems. This exclusion, which is open to interpretation when discrimination against injecting drug users is known to be rife in the health system, is a major concern. Drug users form the greatest number of those who are infected with HCV and a denial of treatment of HCV in anyone who has reached a stage when the illness is likely to become symptomatic and life threatening is a serious matter, which infringes human rights. This ruling will considerably increase the morbidity and mortality of drug users.
There is no supporting evidence given for the exclusion of drug injectors from treatment on the grounds of presumed future lack of compliance with the treatment programme, presumed high re-infection rates for those who are still injecting, or (for the NICE guidelines only) for presumed drug interactions. Those who treat people infected with HIV do not exclude current IDU’s, although there is some evidence from an analysis of the Survey of Prevalent Diagnosed HIV Infections that drug users are significantly less able to access treatment than other groups with HIV. The reason for this is unclear.
There is now firm evidence that this exclusion of injecting drug users from treatment for chronic HCV is ill-founded. Two articles on this issue were published in the medical press in July 2001. The first by 7 authors from the University of California in San Francisco laid out the evidence why drug users should not be denied treatment for HCV. The second is a paper in Hepatology from a group in Germany showing that current IDU’s can be treated successfully for HCV.
The paper by Edlin et al at UCSF reflected the consensus of a group of 38 national and international experts on AIDS, liver disease, substance abuse and health policy, called the ‘Hepatitis C Illicit Drug User Policy Group'.
With regard to adherence to treatment this well referenced paper stated:
“Adherence to treatment regimes among illicit-drug users is often thought to be poor. Some might therefore argue that treating drug users for HCV infection is futile. Clinical data however does not support this view. …………. Studies have shown that 40 per cent to more than 80 per cent of drug users adhere to treatment regimens, depending on the treatment, the study population, and the setting.
These rates of adherence are typical of those reported for patients receiving treatment for various medical conditions (30 to 70 per cent). What is required is joint care management, as a liver specialist is not going to be able to assess if someone's drug use is stable or not, that decision should be the substitute prescribers. I see little evidence of this happening on the ground, where other specialists are involved such as psychiatry, then they should also be involved in a joint care management plan.
Possibly one of the problems is that unlike HIV, this virus did not need a new specialism, as the liver is dealt within a variety of clinical settings. Among those are Hepatology clinics, specialists here concentrate on the liver, where there is no hepatology, liver issues are dealt with as a sub discipline of Gastroentology, and sometimes HCV is dealt with by virologists in infectious disease clinics.
As such the person who will be charged with an HCV+ persons care will have little or no experience of working with drug users who have complex needs, some will have very little experience of working with liver disease as well. This means the journey for positive individuals will vary from area to area and for some it will be a difficult one.
As stated previously we also have a situation where the guidelines recommend testing for genotype to determine the length of treatment required, but as there is a shortage in labs able to do this test many people will have to wait until treatment commences before knowing what geno type they have, or how long to expect to be on treatment.
This impacts on the ability to choose, as because their are numerous side effects with the therapy, some people would maybe be prepared to go through this for 6 months, but maybe not for 12. This is a situation that requires addressing soon as it is clearly not best practice. Nor is stating current users are self-excluding themselves from treatment through their continuing to use.
To ensure that drug users have equal access to treatment, care partnerships will need to be set up between the drug services they use and the specialist HCV units they are referred to.
If the decision of the consultant is the main factor of access to treatment, then that person will need the input of those working with the person around their drug use.
However, looking back to the side effects of treatment, this is a major factor in determining whether individuals choose to go on treatment. In some respects many people are fearful about this despite the fact that the majority of people do get through the course. There have been individuals who have had an appalling time, there have been rumours that a couple of individuals committed suicide whilst on treatment. But on the whole most people have few or minor side effects, though that is not to say that treatment is a doddle, remember when Interferon was trailed for cancer it was known as lymphoblastoid interferon! Which gives some clue as to its potential toxicity, but like the disease itself the outcome will always be uncertain, and most people will not know until the start.
From collective data on side effects many have similarities to symptoms of the illness
This starts with flu type illness, poor appetite leading to weight and loss increased need for sleep/ chronic fatigue. Later side effects can include psychological – depression/ anxiety/ mood swings. Hair loss is rare but does occur but not to the extent of chemotherapy. Thrombocytopenia (problems for HIV co-infection),Myalgia Arthralgia and joint pain problems.
For some people with time on their side, for example they have not been infected long, then anti viral therapy may not be required for some years. The benefit of this is that advances in this field are moving rapidly. So for younger individuals who are looking after their health in other areas, then time would be on their side when it comes to decision- making.
New medications are emerging and now peggylated interferon is the recommended choice. The difference between interferon and peg interferon, is that the introduction of poly ethyl glycol aids the process of timed release and maintains the level of Interferon Alpha in the blood, whereas with the non peg interferon this needed to be injected 3 times a week, which meant it peaked and troughed and this is the reason that researchers felt that it's success rates were lower. If you feel you have heard poly ethyl glycol before, if you drive your right, it is something you also get in anti freeze, though I am assured this presents no adverse effect!
There are now currently 50 therapies in different phases of clinical trials, including vaccines, etc. new drugs like Protease inhibitors and Helicase inhibitors are coming through and there is a belief that they will raise the rate of “cure”. Other trials internationally are looking at Amantadine in combination -a triple therapy and also
Extra Corporeal Hyperthermia which involves taking your blood out and heating to 41` degrees, apparently it has had good results in Egypt and Holland.
Support needs:
Little attention has been paid to issues that may affect ex injecting drug users contemplating treatment. In particular support to avoid triggers to relapse. Triggers to previous using behaviour can be identified in very ordinary things ( like £10 notes) if they were associated with past use, therefore the risk to relapse should be obvious to anyone once you ask some one to inject a drug on a regular basis, there are no services that appear to take this into consideration, other than support groups, ex users would be scared to mention any fear of this, worrying it may affect their ability to access treatment. Only those users who have maintained an open link with a drug agency will be able to get help in this. In addition the side effect of treatment or the symptoms themselves in addition to reminding people of withdrawal symptoms, may result in ex users taking drugs to alleviate the bad feelings.
It may be worth considering how these issues may impact on individuals attempting to cease using or going through detoxification, what chance that symptoms are uncovered once the mask of years of opiate use is removed.
Research should look at if this may impact on detox and rehab success and failure rates.
Current users require support in a number of areas. Help to equal access to treatment through the active participation of prescribing clinician, through agreed protocols, in assessment for suitability of anti- virals is but one. Help to achieve stability and appropriate resources to facilitate that, advocacy, where appropriate to access treatment for pain and other symptoms, advocacy for benefits, care and housing needs.
Discrimination of people due to there being HCV+ has been noted as being widespread. Enquiries into this have been held in the UK and Australia. Almost all discrimination was linked, whether the case or not, to perceptions of drug use. Where this was identified as the route of infection many individuals complained of being treated badly, as though they were guilty, or deserved the consequences. This happened across all sections of the National Health Service. Many individuals had reported being removed from dentist’s lists for revealing they were HCV+. Other experienced discrimination in the way they were treated by consultants and specialist
People also described discrimination and stigma in the way they were treated by their GP's in relation to their partners. Two families had reported being told they could not get to see the body of a family member.
Discrimination hearings in the UK by the National Hepatitis C Resource Centre (Matchell & McNally, 2001) reflect similar findings in Australia (NSW Anti-discrimination Board, 2001). They have shown that hepatitis C is a highly stigmatised condition and that discrimination against people with hepatitis C is rife leading to social exclusion. Irrational fears may prevail through an inadequate understanding of HCV transmission, which may be assumed to be the same as HIV or other forms of hepatitis. A more powerful driving force to discrimination is the inextricable link with injecting drug use. Drug users already face major problems of social exclusion and stigmatisation. Discrimination in health care, dentistry, employment and even funeral settings is widespread.
Health care settings appear to be the most widely reported context for HCV related discrimination. In its most overt form, people are refused health care services and treatment on the basis of their hepatitis C status or past, current or assumed drug use.
HCV positive people may be rejected by their families and friends, ostracised or harassed in workplaces and communities, have restrictions placed on them as a result of irrational fears of transmission in the workplace, be denied life insurance or a mortgage, lose their residential status and employment, and have difficulty accessing welfare benefits. In some cases families and friends have been denied the right to view the body of someone known or assumed to be hepatitis C positive. Through these means discrimination often profoundly affects the lives of people living with hepatitis C and their local communities, leading to damaged health, financial consequences, social exclusion, depression and anxiety. Fear or previous experience of discrimination may also deter individuals from accessing the health care system.
Steps should be taken to ensure that the needs of people with hepatitis C are met in order to reduce the psycho-social harm that is associated with the disease. Protection of the human rights of people with hepatitis C, and those most at risk of infection, particularly people who inject illicit drugs, is essential.
The right to privacy and confidentiality is the first line of defence against discrimination and is of critical importance. Employment organisations, dentists and the Health Service need to provide clear HCV policies and support practices which protect a person's privacy and confidentiality.
Educational initiatives are vital to inform people about HCV transmission and the ways in which it can be reduced. The Disability Discrimination Act and Employment Discrimination laws should be reviewed and incorporate chronic viral infection as a disability. Hepatitis C discrimination, harassment and victimisation in public life should be made unlawful.
The Insurance industry should be specifically targeted for clarification of the issue of discrimination and changes must be made to legislation to ensure compliance with anti-discriminatory practices.
Current Guidance for HCV infected healthcare workers DOH 2002- These performing sub cutaneous procedures should be tested for viral RNA. If positive should not perform SC or other exposure prone procedures.
Successful response to therapy will allow worker to return to SC or similar EP procedures. The chance of being infected as an occupational risk through a Needle stick injury is 3%! To date there are no protocols on the use of Interferon or any other drug as post exposure prophylaxis!
To understand the response to HCV we need to understand the drivers behind the response to AIDS/HIV and learn from it, not merely copy it, which appears to have been what has occurred over the last 15/16 years).
In December 04, the Department of Health launched an awareness campaign, many stated that this was too little too late. Regardless, it was very low key to the point of blink and you will miss it.
The first reaction to HCV was to deal with it the same as HIV, the prevalence is greater, then we need a greater amount of NX, counselling, referrals to ever overburdened services. This is not the solution.
You would have thought that the realisation this would have a totally different impact than HIV, it was not, sex, youth, quick death,. Instead it will be a lot of people, the majority who were or are drug users, becoming disabled or living with chronic disabling illness before their time and in many cases reaching premature death in middle age. The greater the sense of inaction, the greater the sense that it appears to matter little that despite the fact that only a small percentage of those infected will suffer serious problems, the numbers will still eventually super cede HIV, for others it will kill by extra hepatic disease or leave them so incapacitated that they have little or no quality of life. Despite this happening to only a small percentage if the figures compare to all our closest comparative nations we will still be looking at possibly more deaths than from AIDS.
So how do we make some positive steps to redress this, for a start we have to put more than £2 million into an awareness campaign, this is a drop in the ocean compared to moneys used to raise awareness of AIDS and falls behind other illnesses and diseases. The 2004 campaign about fungal toenail infections was of the type that should be undertaken with HCV, it is all a question of political will.
HCV money needs ring fenced, and their need to be some accountability on how money for HCV services is spent,
People require access to treatment on a more equitable basis and at a criteria level similar or in line to that of the rest of Europe. Testing facilities need investment and their needs to be a greater effort to ensure best practice in joint care. In the latter there needs to be some effort to establish joint care pathways, as it is many users on substitute opiates find it hard to access treatment mainly on the basis of discrimination. Studies have shown that it is cost effective in the long term to treat users even if they are currently continuing to inject drugs.
Above all, their needs to be a nationwide blood borne virus programme to not only prevent further infections but to prevent any similar situation occurring in future.
In 15 years since we first had a test in the UK (We did not get one until 1991). How many people have been unnecessarily infected?, when Australians talk of 50,000 new infections over there in the last 3 years (2001 -2004) then even going to half of this could lead the potential to be over a hundred thousand infections over the years since 91. This all implies that it is ok to die before pension age, is that good enough! Not in my book and it is time to say so!
Grant McNally
Posted by: Grant McNally | October 19, 2005 at 12:40 PM
I would like a to see a copy of 'out of sight, out of time:Injection drug users, hepatitis C and HIV policy', however I never seem to get linked to that exact doc, maybe its my brain fog! For what it is worth I wondered if it was similar to my take on the situation in the UK;
I have pasted it in, it is called "Hep C- it's as if AIDS never happened!". feel free to reprint;
Grant McNally, the author, is the founder and former Chair of the UK Assembly on Hepatitis C, the UK's first hep C patient group, formed in 2000. He also set up and managed the first year of the National Hepatitis C Resource Centre, before heading the National Drug Users Development Agency from 2000 to 2002. A qualified Social Worker with an MSc, Grant has taught Harm Reduction modules at the Maudsley, Imperial Collage, Kings College, and a number of other universities. As an ex user and now an ex ex user he is also a member of the National User Advisory Group at the NTA (and works occasionally as a freelance trainer and consultant).
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For injecting drug users in the UK , the introduction of HIV and AIDS resulted in a political sea change in attitude that brought with it a new more compassionate and empathic approach to the treatment of drug users than had previously been the case. Prior to HIV, drug use in the UK carried heavy legal sanctions that had overridden treatment concerns, and where there existed treatment, it mainly comprised of what could be termed punitive medicine. In addition to this you were lucky if deemed mad, which along with the drug use would be a stain on your medical character for many, many years to come.
Harm Reduction as a concept began life as a response to AIDS, a pragmatic action to avoid an epidemic, and it worked, or on the face of it, it seemed to have worked. The UK avoided the HIV epidemic that wiped out large numbers of injecting drug users in other countries. With the success of this approach came a new and enlightened group of professionals who saw a wider value in the harm reduction ethos, beyond the prevention and containment of HIV. As time has passed the HIV fear has dimmed, there is now a new more widespread virus, termed the sleeping giant, but the potential for this virus to be transmitted to non injecting drug user is minimal. Crack cocaine and the vast amount of acquisitive crime it generates, are now the driving factors of the drugs field.
The Author contends that the encroachment of AIDS into the west, via drug injectors, did not occur at the rate the then social commentators predicted and for many Harm Reduction has less relevance to the drug treatment sector now than it did 16 years ago. Because, the priorities of crime reduction are more important to government, than seeming to throw money at drug users that is not attached to initiatives to promote them stopping that drug use.
Despite the best efforts to appear to be meeting the needs of the service consumer, the consumer can only know what is needed if he/she has the right information from which to determine what those needs may be. Regarding hepatitis C there is very little in the way of harm reduction being done on any significant level. For those infected users it seems to be a matter of fact that few of the professionals they deal with know more than the basics about hepatitis C. Back in the days of HIV there were HIV/Drug workers were everywhere; some had more HIV/Drug workers yet no HIV drug using clients! Professionals and academics have demonstrated their unhappiness at the seeming lack of more than cursory action. This resulting in a (forced) amendment that saw health improvement being written in as a core aim into the UK National Drug Strategy, but in spite of this, and a National Hepatitis C strategy which now has an Action Plan to implement that strategy. The willingness to follow this through is in direct tension with the ever-increasing need to balance health against criminal justice needs. As a result of this, with the majority of drug treatment moneys being attached to CJIP, CJIT (now DIP’s) and DTTO's, for the individuals with hepatitis C, it's as if AIDS never happened.
The fact is, though, that this lack of action will only serve to increase the pool of infection. And as found in those countries with a large prevalence, the bigger the pool the wider the ripples.
The economics of Hepatitis C
It is 15/16 years since the US biotech company Chiron Corp first identified the HCV virus, through genetic copying and then engaged in certain dubious practices in an attempt to wholly own it and any spin off. In that time the virus has gone through a metamorphosis, from a being described a benign infection that was thought to have little consequence for long-term health, to the serious global health concern it is now known as today. For their efforts Chiron Corp have benefited to the tune of a hundred million dollars or so in patent royalties payments (as I said, they even tried to patent the virus itself!).
The LA times recently reported that Chiron , (a Californian firm), has introduced a new policy for companies wishing to license its HCV patents. Chiron holds over 100 patents related to the HCV genome, which won't expire until 2015. Any company that develops a new drug targeting hepatitis C (such as a protease inhibitor), or a diagnostic test to detect and measure HCV (viral load; tests for screening the blood supply), needs to license Chiron's patents, typically by negotiating a licensing fee and royalties on product sales. Chiron typically charges each company millions of dollars in licensing fees during research and development alone, and makes millions more each year in royalties from HCV tests.
This went beyond the realms of ethical science and their followed a number of litigations, before Chiron brought in their new policy which is tied to future sales, so potentially allowing them to make even more money for themselves.
This obviously annoys the companies presently at the forefront of treatment products, which have to divert large chunks of their profits. It is not only the financial gains that upset people in the HCV field, but also, scientists have complained for years that Chiron Corp has hindered the fight against hepatitis by creating a virtual commercial monopoly over drug research.
Now, federal health officials are reviewing the 14-year-old government agreement that gave Chiron so much control over research that seeks to help the millions of people afflicted with the disease. It is this that has led to Chiron introducing the new royalty payment method reported above, a sort of buy now pay later.
Chiron currently hold 100 patents in 20 countries related to hepatitis C. Competitors had complained they' had abandoned plans to enter the field because Chiron demanded too much money to access its technology. (Chiron successfully sued many companies for infringing its patents related to the virus).
Those patents credit Chiron scientists with discovering the hepatitis C virus -- despite the fact that a scientist from the Centres for Disease Control and Prevention contributed much to the original research.
But the CDC signed away to Chiron most of the commercial control of the virus for a little more than $2.2 million in 1990.
There are, however, now over 50 medications in clinical trials for potential use relating to hepatitis C.
In 15 years hepatitis C has moved from an insignificant virus, akin to Epstein Barr Virus, to being a mass cash cow for the pharmaceutical industry. For instance if the UK prevalence was low, say 200,000 with viral RNA, then based on current statistical models around 60% could be eligible for treatment, which would work out at 120,000 at £6000 per 24 wk treatment cycle, would be £720,000,000. There would obviously be drop outs, non responders, etc, however, if factoring a percentage that will require 48 weeks treatment, £720 million, would not be far of the mark. This is only considering the current available treatments of Peggylated Interferon Alfa and Ribavirin, which has less than 50% success rates! So in the UK alone this a multi million pound industry, and this is just treatment, the economic costs of lost working years, other hospital treatments for the disease and it's many associated conditions, then there is the costs of benefits, mental health care and areas in drug rehabilitation failures I will address later.
Leading financial commentators estimate that the industry could be worth in excess of 3 billion dollars!!
Meantime there is still concern and tension between the U.S. patent system and free scientific inquiry.
The CDC now, for instance, claims ownership of the SARS virus and its entire genetic content after its researchers helped map the bug's genome. Rather than try to profit from it, the CDC wants to prevent others from monopolizing the field the way Chiron does with hepatitis C .
‘The politics' of drug use
Persistent blood borne viral infections are not new phenomenon to drug users, however, their acquaintance can possibly be traced back to the start of hypodermic injections, both licit and illicit. The headline grabber towards the end of the last century, however, was obviously HIV and the potential for this to be sexually spread to the non-drug injecting population. Let’s not pretend that this heralded a new era of user friendliness to drug users, it was a public health containment measure. Prior to this it may be fair to say that infections were viewed as scare tactic to prevent users injecting, otherwise it could be argued that a Harm Reduction response to the hepatitis B outbreaks in the early to mid 70's, with needle, syringe exchange and all the other HR accruements then there is a possibility that we may never have had the HIV and HCV figures that have come to light since Hepatitis B appeared. There are also a large number of viral infections that are carried by people, which have virtually no adverse consequences (though there is currently an ongoing debate on this); these include Epstein Barr Virus and others. In the 1994 edition of the National AIDS Manual (NAM) it was stated that it was believed that up to 64% of all IDU's were infected with Cytomegalovirus (CMV) a member of the herpes family, an infection described as benign, in that it causes virtually no adverse affect, unless you have HIV, where it can cause serious retinal problems.
Over the last 30 years we have made some enormous leaps in technology and the scientific understanding of viral infections, however, conversely viral infections have evolved at a similar rate, at times faster. Prevention therefore needs to acknowledge this and be pre-emptive to the viruses to come. The centre of attraction at the moment is hepatitis C, but the issue is blood. If the drugs field had used hepatitis B as the marker to inform HIV policy and practices, would so many have died of HIV? (Many HIV+ IDU's who died were believed to be co-infected with HCV).
There still exists a political edge to the issue, in many ways this is partly due to the legacy of HIV, in that there has been a fear of a knee jerk reaction, as occurred with HIV, where large amounts of ring fenced funds were allocated to drug services that did not see any of the projected numbers of HIV+ clients (outside certain large urban centres), resulting in funding being spent on inappropriate things like training to deal with things that would never be required, or worse diverted to fund car parks, office furniture and the like.
HCV was a blood born virus, with only limited research on sexual transmission. It did not have the urgency of HIV and best of all it seemed that it would not produce an epidemic amongst non drug-using heterosexuals. The situation seemed to return to the era of hepatitis B, and the sense that if you behaved like that (injecting drugs), what did you expect?
The dragging of feet over the issue has only postponed the obvious. I still feel that it cannot been nearly 9 years since my first international hep C talk, where at the time these were still similar issues, as can be seen by the titles of the preceding speakers:
• Barbara Broers ( Switzerland ): Success of HIV prevention, failure of HCV prevention?
• Judith Byrne ( Australia ): Let them eat cake.
(Metaphor for HCV+ individuals getting the crumbs from the HIV table)
My one was:
• Grant McNally ( UK ): Hepatitis C –the failure and future of harm reduction
Despite the issue growing internationally, there was still a desire in the UK and elsewhere to dampen down discussion and debate. The cost issue was one that the UK government did not want to repeat. Fingers had been burnt over HIV, and there was a desire not to let this one run away with money in the same way.
We now know, however, a great deal more about Hepatitis C and its long-term health and economic implications than we did in 1989, but despite this, a long time has still passed with minimal corresponding action being taken.
This has been leading to an ever-increasing number of ongoing transmissions. As stated previously, we also need to be ahead of the next virus/infection, (hepatitis G has been reported as co-infecting 33% of those positive for HCV in Australia). Therefore, it is prudent if we take an overall blood borne virus prevention stance then we will be able to pre-empt /prevent future blood borne virus transmission amongst drug users.
If not, it will cost much more than £720 million.
And it will rise far above that if action to prevent secondary infection and promotion of tertiary harm reduction –in the true meaning of the word- i.e. maintaining the health of those infected and reducing the chances of disease progression as far as is possible, is not taken up soon.
The Prevalence gap
Hard as it is to believe, there is still a great amount of debate about the possible numbers of people infected by hepatitis C in the UK , with various projections pitching figures between 200,000 at the lower end to 500,000 at the higher end. With such a wide margin the need to get a much clearer estimate is crucial if we are to meet future needs.
With global predictions having leapt by 30 million in the last ten years, from 170 million in 1994 to 200 million (World Health Organisation 2004) suspected as being infected in 2004. On the bright side the UK predictions are small in the global scheme of things.
It is not often mentioned, but, the global impact of HCV will mostly affect Asia, Africa and Central Eastern Europe/ ex Soviet bloc countries (Romania estimates 2 million from a population of 22 million), it is there that the numbers of those infected, mainly through noscomonial transmission, will be highest and there also that the figures for HIV/HCV co-infection will be both highest and have the most devastating health and economic consequences.
By comparison to other nations, the UK appears to be doing better per head of population infected than countries such as France, Australia and Italy (similar population size/GDP/Health Services/Drug Using patterns, etc). Compared to all three, our projections to date indicate we have possibly half to four times fewer infections than they have. However, as we have only tested 38-40,000 as positive to date, the prevailing numbers of those infected are still unaware of their status.
Awareness raising
Raising the profile of hepatitis C is difficult. It is difficult for those working with drug users, due to so many competing priorities placed them; DTTO's, user/ carer involvement, CJIP's, implementing models of care, QUADS, DANOS etc. It is difficult for and with users themselves; the place of HCV is low within a hierarchy of risks, competing as it is with more immediate concerns. It falls below the midway point, behind overdose, arrest, HIV, or losing your ‘hit'!!.
Additionally, infected individuals do not rate hepatitis C highly amongst future health concerns. Hepatitis C makes occasional forays into the media, usually frightening people with scary Pamela Anderson “I'm going to die soon” stories. But, most other times the serious problems are underplayed, out of sight, out of mind. Yet hepatitis C is now the number one cause of Liver transplantation in the USA , and given that a large number of those infected in the US will have restricted health care access, this say's something. Not an area for poor drug users to access. What it also says is, like other alcohol and tobacco related deaths, they are largely unseen only by those closely affected. Not in the glare of publicity like HIV. In the US this translates to about 5,000 - 10,000 deaths a year (so far).
Then again, the US did not embrace Harm Reduction as we rightly did in the UK . As a leader in the promotion of Harm Reduction from the late 80's, the approach has been seen as pivotal in preventing a possible HIV epidemic. There is no doubt that harm reduction played a part in this, introducing needle exchange schemes, outreach workers, street agencies, with some espousing a user led ethos and responsiveness to users needs.
But, it is apparent when looking at the HCV prevalence amongst users of some drug services, that some of that success was also connected to the timing and the low pool of HIV that existed in the IDU' community at that time - coupled with geographic containment - that led to this success. Though some might say luck played as big a part.
Although Tom Waller, Roger Holmes and others in the UK had sounded the alarm bells to the drugs field about the potential HCV epidemic, since the early 90's, it was not until 2001 that a group was drawn together to plan and write a national strategy for hepatitis C. And that was after the DOH had been pressurised by a number of top academics, GP's, consultants from both drug and Hepatology sectors, and others, and they continually door stepped the minister
The Action Plan
After many months work
The National Hepatitis C Strategy for England was put out for consultation in October 2002, and in July 2004, some 15 years after the first anti body test for HCV was developed, the DOH released the Action Plan to implement that strategy.
The Action Plan recommended the following actions:
Action 1: Surveillance and Research;
- To get a better idea of the numbers infected, as future capacity will be informed by gaining a more precise definition of the numbers infected in the UK .
Action 2: Increasing Awareness and reducing undiagnosed infections;
This is to begin with a national professional and public awareness campaign which is targeted at past injectors, this will be focused at having those who may have been at risk to come forward for testing. The DOH have employed a PR firm to launch an awareness raising campaign commencing in October and title face up to the past.
Action 3: is High quality health and social services
This will include PCT's ensuring that specialised services are commissioned, clinical networks are developed, adequate testing is available for all relevant tests that protocols are developed between primary and secondary care centres to ensure that pathways are developed to cover a range of health and social care needs
Action 4: Prevention;
Prevention to be intensified to reduce the spread in at risk populations.
The responsibilities of drug agencies
The National Treatment Agency has a number of areas to cover within the action plan. Within their intended actions are
• A National audit of needle exchange services .
• Regional audits of BBV prevalence and incidence amongst drug users, including interventions and agency interfaces and a series of regional projects which will target under reached and/or high risk groups to provide testing.
• Prevention/ treatment.
What form these will take is difficult to guess, however that is not to say that many of the actions cannot happen in tandem. For example, while improving the numbers testing, we should be raising awareness, and there is scope in this with specific targeting to get specific messages across.
The issue is whether agencies are prepared to think outside the box and commission innovative services that are able to roll out multi focused projects. Much money can be saved, if well thought out.
Rhodes and Davis (2004) highlighted that many users still operated under knowledge of HIV and that this received wisdom informs their activities to prevent HCV. Figures for those injecting pre needle exchange who are HCV+ are around 75% and above. For those using Post HIV/Needle Exchange, the figures still range from 40% at the lowest end to 65% and above. Figures for England as whole are around 54%. London and Scotland are higher comparable to the HIV rates found there in terms of per head of drug using population.
In France the aim has been to screen 85% of its population at risk. This has been happening, France has also treated 3 times as many patients as the UK has.
Injecting initiation
When questioned about worry that they may move to injecting, most non-injecting users will state that they will never inject. The line between injecting and not, then has a moral significance, in that some users belief that only injectors become dependant. These moral lines will be set and crossed at various times in a users ‘career'.
To understand why users engage in behaviours that lead to risks, it is helpful to look at the reasons why people inject, and why they are involved in joint or multiple acquisitions of drugs.
Whether users inject, and what drives transitions to injecting behaviour, are also subject to much debate. Though there will always be a proportion of users who will be prepared to take more risks, and those who inject as an extension of self-harming behaviour. In specific areas of the UK, it will depend very much on the dominant culture in the geographic area. This will be determined by factors such as the quality and quantity of drugs which are available, and in some areas where quality is low there will be a history of injecting as first route of consumption. So there are times where it is driven by the culture, though there is less real reason for this now with such wide availability. Added to that would be how injecting was accepted within the community.
The economic imperative that precedes injecting
In the main, the reasons why most users move from smoking/chasing heroin to intravenous use are financially driven. This may be short term, due to a drought or break in supply, or conversely a change in financial circumstances. As the person becomes more physiological dependant, tolerance levels rise leading to the person having to make stark moral choices. These will differ from person to person, but on average most users are as scared at the prospect of injecting as any other member of the public. Some will have a temporary move due to circumstances. But the core reason is that the user will receive more drug if taken intravenously than by other means. It will avoid the loss of part of the drug to which goes to air and atmosphere when smoked/chased and not bodily absorption.
In the vein you get 100% or near it, but, what makes transition back to previous routes hard, is the introduction of a new dynamic, the rush or euphoria often referred to in descriptions of injecting. As this usually takes over for a period, as one of the aims of use, few people move back to previous means, except when stabilized on oral medication or off drugs completely.
People learning to inject rely on the knowledge and received wisdom of others. This is despite the fact that the vast majority of injectors will claim to refuse to participate in the initiation others to injecting. Many will state that assistance is given to prevent greater harm.
Injecting drug users are mainly self-taught on the basis of peer information, or are initiated by a member of their peer group. Both routes rely on peer information accrued from experience and knowledge provided by professional media, filtering through different generations of user. Most current injecting drug users have, primarily, been ‘taught' injecting practices by an older generation - one that was only alerted to the dangers of HIV and prevention thereof. Hepatitis C, on the other hand, is a new, more virulent, and much more robust virus. Little is understood of the transmission through injecting behaviours. It is just this ‘inherited' learning which can lull many current users into believing that their behaviour is ‘safe,' while actually leaving them vulnerable not just to single, but to multiple incidences of exposure to the HCV virus.
Much is written about ‘equipment, or ‘paraphernalia', with little explanation of what this means, especially to the user. Terms like paraphernalia may have been heard of but few can say what it means. It also appears difficult to spell out the dangers that could place individuals at risk, like environment etc. Additionally looking at the equipment alone, the - Needles, Syringes, Filters, and Spoon/ cooking implement, Acidifier, Water container, Surfaces, all need to be seen in the context of accompanying behaviour. What people do!
Hand washing is not flagged up enough (hand wipes can be provided) and now that the law has been amended to allow distribution of sterile equipment, there is no reason why these things can't be provided.
Cognitive head banging, equipment can't transmit the virus without accompanying actions. To echo T Blair mantra except it’s;
Behaviour, behaviour, behaviour!
Integrating prevention messages into injecting rituals
To incorporate safe messages into injecting behaviour and ritual will require an understanding of how individuals come to be sharing this equipment. How it connects to the behaviours.
Looking at these issues can also point people in the direction of how they were infected, when they had operated in the belief that their behaviour was safe. They can compare to what they are now being informed of. This includes looking at the mechanics of sharing, as an extension of the economic imperative. From this can be teased out the reasons for joint acquisitions, which is not too far removed from food co-operatives. In addition this also widens networks for purchasing drugs. Sharing has to be seen in the context of joint preparation and looking at situations where blood may be passed.
Other important areas include Blood spills in the injecting environment. For example; through people checking for air bubbles in their syringe. This is a big deal to injectors who will remove the syringe and needle to expel the air bubble, particularly if blood is in the syringe, as they would want to expel the air quickly before the blood congeals and the hit is lost. People sometime draw water and spray mixed water and blood into the air.
How do users avoid transmission in these environments?
Received wisdom and commonsense ideologies
Unfortunately, most of the interventions that exist in the form of needle and paraphernalia exchange have little effect on those users out of touch with services. Without the corresponding prevention information about reducing the chances of contracting HCV, these interventions will not reduce the spread of the virus to other users in their communities. Fresh syringes and ‘anti-sharing' messages are ineffective if the user understands sharing to mean only the syringe, while continuing to inject in risky environments, sharing spoons, water and filter in order to ensure an equitable share of a communal purchase of drugs. All of the anti-HIV messages traditionally passed from older users to the next generation may, in fact, allow the virus to pass more easily, as those users persist in the belief that they are following safer injecting practices.
Many agencies have the opinion that in the current situation there is not a lot that they can do? A sense of bolt, horse and stable door seems to dominate.
Many feel, understandably overwhelmed by the fact that it appears inevitable that most clients will be infected with HCV. So what more can be done than get their drug use stable? Few would appear to consider secondary prevention, and the consequences of secondary infection, therefore users unsurprisingly pay little attention to it. So it is often the case that two injecting users, both diagnosed with hepatitis C saw problem in them sharing equipment or syringes. However, we know that hepatitis C comes in many different geno types and sub geno types. We also know, more importantly, know that some geno types require double the recommended amount of treatment, and that some geno types have less success in producing a sustained virological response.
The most straightforward issue here is that this will result in treatment costing double, in addition to causing the infected individual more loss of quality of life and the possibility of disease progressing at a quicker rate.
The most important thing agencies can currently do is to lessen the potential for co-infection of different geno types.
And Finally
Though recent studies have demonstrated that needle exchange provision is not reaching all injecting users to supply a clean syringe for every injection, we have recently found that current provision supplies on average one new needle per user every two days.
This obviously points to a deficit in provision. However, even with saturation coverage, if the operation of a needle exchange is only about supply, then infections will continue. 27 million needles and syringes were distributed through the NX system last year. One recent study showed that coverage is inadequate now. If more pieces of equipment require further investment, will supply be hindered by budget problems? This will have implications for the context in which equipment and information are given out. And be all the more reason to try to introduce and ingrain messages that make any re-use episodes safer.
The peer solution
Peer interventions could, as described in part 1, be the best way of reducing the numbers of those infected with hepatitis C. Not only that, but they could also have a number of other benefits, both in relation to HCV and in other areas such as user involvement.
Despite the best intentions of many professionals in the drugs field, safer injecting practices are much more credible when taught by peer educators, who are perceived as having the ‘street cred' and experience that professionals lack. This is, of course, not always the case, but peer educators are at least familiar with the chaotic situations in which injecting drug users may find themselves, situations in which safer injecting practices seem virtually impossible, and users are often forced to choose between illness and safety, a skewed ratio of immediate need to perceived long-term risk. But the credibility and integrity of the information will inform how that risk is assessed
Peers are more likely to be trusted, and this can be crucial in promulgating blood borne virus prevention information to users who are not likely to access services, except in crisis situations, nor place much faith in information provided by services whose primary aim is treatment.
Additionally, peer educators who are themselves infected or affected by hepatitis C can provide users with the benefit of their experiences, be that of testing, treatment, discrimination, etc., as well as positive role models of users/HCV+ individuals.
The sharing messages of peer educators with experience of HCV should provide active users, particularly those unwilling to undergo testing, with the support to face the realities of past unsafe, even if unintended, behaviour. HCV infected/affected individuals are also better able to participate in group discussions, with reference to personal experience.
Other things that add to this dynamic are:
Inside information, knowledge from personal experience and (again) trust are key factors in the success of peer education initiatives. Additionally, users are described as having ‘privileged access' to other users who are within their social networks but are out of contact with traditional drug treatment/health services, and who are thus able to ‘cascade' or ‘snowball' information throughout their peer group.
Within the peer group, self-disclosure can also be a springboard to successful education, and experience suggests that the most important feature of peer education and support are the social influences on drug users' attitudes toward safer behaviour and growth in users' self-efficacy through role-modelling initiatives. More simply stated, in the peer education model, the focus is on using peer-pressure in a positive way within users' broader social networks to reinforce harm minimising/health-oriented behaviours.
Studies over the last few years have shown that most injectors are reluctant to initiate other users into injecting and will do so mainly to prevent the person from causing more damage by attempting to do so themselves. Studies that have looked at the factors that precipitate the move, or consider the economic issues previously discussed are hard to find. For this reason, looking at transitions to injecting in isolation of those other factors will have little impact, and this would appear to be borne out by the statistics.
The key then is to get simple messages, easy to understand, into the injecting community.
For instance getting peer messages about HAND WASHING and SAFE SPACES, ingrained into injecting ritual, explaining the rationale, which is to wash off , rather than to kill the virus, and preparing a safe space, for example putting a barrier like a magazine, between you the user and the environment you are injecting in. Explaining that this will prevent infection from previous blood spills in the area in which the person is injecting. These two messages alone could have a significant affect on both primary and secondary prevention.
Broadly speaking, methods where peer influence can lead to HCV prevention, such as the above simple messages, and pointing out the behaviour-equipment link, being wrapped into injecting practice, may be the one way to have an impact on the numbers currently being infected, re-infected and super-infected with multiple genotypes.
In addition, once people get a better sense of whether they have been exposed to risk they should want to be tested. Peer information could make this journey less complex and bewildering by providing more informed pre-test information than if users had tested on the basis of a current campaign, such as anonymised testing to establish future treatment capacity needs. The experience of those who gave evidence to the UK discrimination enquiry found that those who were given their test results knew little about what happened next or that further tests were needed to establish if the person even still had the virus.
The potential is out there to make a difference; the issue is whether there is the will on the part of those commissioning services. That obviously depends on priorities and, unfortunately, hepatitis C does not appear to rate as a high priority for drug agencies with more urgent targets to meet. The NTA, for example, has no manager responsible for hepatitis C, in the way that they have lead managers in User/Care Involvement, Waiting Times and Criminal Justice. It could be argued that if the NTA was around 15 years ago, they would be expected to have someone with an HIV brief, reflecting all the HIV prevention/drug posts that were around then!
This begs the question: ‘has the reluctance to act been related in any way, to the fact that the potential risk to non drug users through sexual transmission is doubtful, if at all, and therefore, HCV is less of a public health issue in the way HIV was?'
A lack of honesty would seem apparent not only in relation to prevention, but throughout all the areas that follow from testing. It is perhaps possible that this lack of honesty and sense of inaction, leads individuals to perceive hepatitis C to be less serious concern than it should be. Getting to the truth is difficult, but the impression is exacerbated by the complex journey taken after testing, where no one seems to know what to expect and often the best information comes from the patient!
Testing Times
What each test is, and what it means.
Testing for HIV is pretty straightforward, you are either positive or negative, and cases that are more complicated than that are pretty rare. However, the tests for HCV are more complicated and this is very important as they can cause a lot of confusion.
An HCV Antibody test, the most common test, only tells you that the person has been in contact with the virus. They may have responded well and cleared the virus naturally, and current thinking is that up to 20% of individuals who come into contact with HCV may clear it spontaneously; this means that they then have the antibody but, no actual virus. It can also mean that antibodies are present and indicate active hepatitis C.
It takes between 6 to 12 weeks for the antibody response to happen from the time of exposure. It is not known, though, if individuals can clear the virus more than once. This leaves the possibility that the percentage chance of clearing the virus would go down for those who are frequently at risk, meaning that it would not normally apply to frequent injectors.
Unlike hepatitis B, though, just because you have cleared the virus once, you are not then immune to it. The antibody shows that virus has been there, almost like graffiti. To know if this is the case or not, requires a further test, to establish if viral RNA is still there. There are a couple of tests, though the main one is called a PCR, or Polymerise Chain Reaction test. This tests for active virus.
It is not known how long it should take from exposure to the virus to the detection of viral RNA. What would usually happen is that the virus avoids the immune system and begins to replicate. The more viral particles there are the more replication and the virus increases to the point where it can be detected. This is known as the threshold; if the virus is not detectable, it is said to be below the threshold and recorded as PCR negative. A PCR test is also used to determine if treatment has been successful or not.
‘Could the virus be too small to be picked up?' This is not very likely, but still possible, and may be one reason why most people are not offered a PCR at the early testing stages, add to which the cost of PCR testing, which works out at around £250 -£300 per person.
PCR testing is usually offered after antibody detection mainly in those with no identifiable risk factor. Where the risk factor is known to be through injecting drug use, it is usually at the biopsy stage when viral RNA is established (among other factors). Otherwise, PCR is mainly, it would seem, restricted to during and after treatment.
Antibody tests work out at around £20 -£25 (all tests need to carried out twice for accuracy) and Liver Function tests (LFTs) around the same. Liver function is self explanatory, and covers around 5 to 6 tests which assess the current functioning of the liver. When the liver is normal and not being attacked by a virus, toxins or other causes, it produces a level of bile and other substances and these ‘leak' into the blood stream at a certain rate. If there is damage of any kind, this will show through an increase in the normal range of bile and certain enzymes.
Liver function can change from day to day and usually there would need to be a sequence of very high levels in succession to indicate something was wrong. These tests are not the best, however, in determining damage that has been ongoing, but indicate more about what is happening now. Unless there is a lot of current inflammation, LFTs are not that useful. Some clinicians/ hepatologists will require that LFTs are above normal limits for a period up to six months before commencing treatment.
Genotyping, as stated before, is also important, HCV has, as we know, a number of geno types and sub geno types. There is obviously a need to identify which geno type a person has, as this will be important in determining how long the person will need to be taking treatment.
Current NICE (National Institute of Clinical Excellence) guidance recommends 24 weeks duration for genotype 3 and 48 weeks for genotype 1. However, there still appears to be a shortage of testing facilities and usually only those who have decided to take treatment and been accepted by their consultant, will be able to get a genotype test. Some have had to start treatment first then have the genotype test done, so some individuals have to wait until then before they know how long they will be on treatment! Recently, as a cost-saving measure, PCR testing is often limited to determining either a ‘non-1, non-4' genotype or a ‘positive-1 or -4' result. This is a shortcut to determine length of testing, but does a great disservice to the statistical record of specific genotypes found in the UK.
Other tests that are available are ones that measure viral load. There is a Qualitative PCR test and a Quantiplex Assay, which is another test that measures viral load. Viral load tests are rarely used at present, as viral load does not seem a factor in determining the success or failure of treatment, and they also cost the same as the RNA PCR test.
A Liver Biopsy is the process of taking a tiny microscopic sample of the Liver. This can tell: 1) that the virus is still present (RNA); 2) whether there has been any damage; and 3) what caused the damage, as the histological evidence of HCV is different than it would be if caused by alcohol or Hepatitis B (it has been explained to me that the architecture of the damage is different!).
Most consultants will say that this is the most effective way of diagnosing damage as a result of hepatitis C and it also keeps costs down as there is less need for a PCR. However biopsy does only measure the degree of damage to the specific area from where the liver sample was taken.
A new test to do the same as a biopsy, but more accurately and through a blood test has been developed in France and is called Fibrasure. Also, European Health directives have cleared the way for treatment to be offered in most European states without the need for a biopsy. This doesn't apply in the UK, however.
Ultrasound is another tool often used, either alone or in combination with biopsy, to determine current liver inflammation; its use in determining long term benign damage is less useful though. In advanced stages, hepatitis C can cause problems with blood clotting. In these cases, ultrasound alone is helpful where a biopsy cannot be performed due to the failure of the blood to clot after the biopsy.
To be sure that there are no potential problems with blood clotting, which if serious could result in death, before the biopsy is performed the person will have blood clotting factors checked 2-3 hours before the procedure. This is also why the person who has had the biopsy is required to stay in a day room for 6 hours, to ensure there are no problems. Blood pressure is measured every 15 minutes for the first 2 hours, each half an hour for the next 2 hours and hourly for the final 2 hours. Problems with blood pressure would indicate internal bleeding. It is unusual for this to happen when all the checks before the biopsy have been carried out. (It is interesting to note that after a Liver transplant a haemophiliac will no longer have blood-clotting problems! (Ironic?)
Once an individual has decided on treatment, then lots of other tests will follow. Some will be to see if the person ‘fits' the current criteria for entry to treatment, this is usually moderate to severe disease with moderate fibrosis (not cirrhotic). Tests will then follow to see if there are any factors that may preclude treatment, such as contraindications like autoimmune diseases, which can be made worse by treatment or pregnancy. A psychiatric evaluation may be done in order to determine whether the person is psychologically capable of dealing with the emotional rollercoaster that interferon injections can cause. Once treatment is underway, testing for anaemia will also be done on a regular basis, and Ribavirin may be discontinued if the anaemia is severe enough to warrant it.
So in terms of testing and diagnosis, hepatitis C can create lots of differing possibilities and situations. From the time of an antibody test until a biopsy is done can vary greatly from person to person. There are, however, no statistics on how many people have which genotype, so we don't really know what genotype is the most prevalent. We also have no figures for how many of the 39,000 HCV antibody positives (currently reported and in the NHS system) are also PCR positive. What is clear though, is that the figure of 20%, often stated in projections of disease progression for the number who will clear virus without treatment, will be much reduced when the majority will have had multiple risk incident and exposures! This does not get included when projections are done and so the cost analysis grows again.
Pre and Post Test
With testing being a complex and uncertain area, it would follow that pre-test counselling should acknowledge this, but it appears that it does not. Both the Mainliners HCV Discrimination report in 2002 and the New South Wales report of 2001 stated that many individuals had bad experiences having tests done, with test results left on telephone answering machines or given in corridors. Many reported that discrimination usually started after the test result, from the immediate prejudice that applies to drug users in general (and the attitude that the illness is self-inflicted!).
There are at present no national counselling guidelines for hepatitis C. The first few months and possibly years after diagnosis can be the hardest psychologically, and the failure of testing centres to offer counselling as opposed to post-test advice can leave the newly diagnosed completely without support! There are plenty of testing centres popping up but very few staff are competent enough to really handle pre- and post-test advice, not to mention counselling.
The issue of where to test is also problematic. There is a clear argument for testing in drug treatment centres and through GPs. GUM clinic testing offers anonymity, but some sexual health clinic managers have questioned the appropriateness of offering solo HCV testing, (as apposed to a multi-test which tests for everything, HIV, etc), as there is a lot of debate about whether HCV was transmitted sexually or not.
The majority of studies showing a sexual link would tend to be very low. Therefore, from a budget perspective, there would appear to be a point. The problem, is if this were to be the case, then it would take away the only opportunity to choose anonymity for those who have been at risk of HCV. In fact, the choice to remain anonymous is not explicit in the same way as HIV, where the choice would be offered; with HCV, it is the individual who needs to decide to use a pseudonym.
Thus, where the choice of where to test is still available, it is possibly the first thing that should be looked at. In looking at what is best, this must obviously take into account where the person ‘is', in terms of where they may wish to be tested, if a person is in a relationship, say married with children and a mortgage then this would make a difference than if the person was bang at it, drinking all day, scripted, using on top.
So pre test advice should include informing the person of consequences that may arise if they use their GP, for instance a positive result may have implications for that person that could affect their insurance premiums, or an endowment mortgage etc. Pre test should be also to identify the individual's involvement in risk activities, checking knowledge and correcting where wrong.
At the pre-test stage with someone who is still engaged in risk-taking behaviour, it provides an opportunity to inform the person of the risks that they may have taken in the past, as well as notify the person to the risks they may be open to in future. It should act on two fronts, gathering information as well as providing it.
Harm reduction and health promotion messages would be expected to be inherent in any advice, obviously determined by the knowledge base of the person doing the advising.
What happens after a positive antibody test will depend on a number of things; there may be a requirement for further testing, the doctor may take a wait-and-see attitude. If the person being advised is still risk taking, then they may need to go back and start again.
If the person is no longer at risk then what happens will change at different times during infection. Ongoing monitoring will depend on what stage the person is at in terms of disease progression. If the disease is mild, then the person will be seen every 3 – 6 months; if disease seems far off they may wait a year for the next appointment and then be seen every 3 or 6 months. For some people, this will mean years of testing and possibly ongoing biopsy's maybe required every 3-5 years.
One of the biggest problems with hepatitis C is that symptoms often don't relate to extent of liver disease. For example, some people have few symptoms and may have extensive liver damage, or a person may have a number of symptoms and overlapping conditions but their liver is only mildly fibrotic and has suffered minimal damage.
It has been acknowledged that for each individual, hepatitis C causes different problems. Also, each individual's experience of living with hepatitis C will be different, as the course of the disease can be overtly influenced by external factors, such as alcohol, drug use to diet, stress levels, etc. In terms of advice following testing, it is extremely difficult for anyone to predict what the outcome will be, unless liver disease is quite advanced, even then it can be difficult to predict how the body will cope with disease.
Preventing onward transmission within the family is an important function of post-test advice. This should be an area to concern people with hepatitis C, none less so than to avoid passing the virus to other family members. All household implements where blood may come into contact with blood: nail scissors, nail cutters, razors, etc., should never be shared. It is important, however, that things are looked at in perspective and commonsense applied where possible. There is a high potential for misinformation to guide discriminatory behaviour or attitudes, or to lull users into thinking that they are being safe when, in fact, they are putting them at risk.
Hepatitis C can add to an existing difficult family dynamics. Whether the risk is past, present or future, HCV can be a destabilizing influence in already shaky family relationships. The UK and Australian discrimination reports both showed that, from start to finish, hepatitis C could increase family pressures. As hepatitis C is already known to affect the mental health of those affected, this could add to a difficult situation with all kinds of possibilities.
Sexual Transmission
Sexual transmission is another area that stimulates debate and disagreement. The evidence is pretty much that sexual transmission is rare if at all (in cases of standard heterosexual penetrative sex). Some critics point to the figures of around 6% quoted in the USA with the sexual politics of that country, which can be seen in the way HIV agencies are restricted from programmes that do not promote sexual abstinence. Looking at the numbers of wives of haemophiliacs, the huge majority are HCV negative, which says something. There are some things we do not yet know that may aid sexual transmission, such as increased risk when there's a history of STDs, but further research is required.
Studies that flag up the possibilities of sexual transmission mostly originate from the United States, and there is some suggestion that this has as much to do with that country's moral high ground, in terms of promoting sexual abstinence outside marriage, than solid evidence showing why transmission can occur through sex, but, in only a small number of cases.
Obviously, anal sex and sex which involves blood play carry much higher levels of risk. Blood spills during sex would be thought to be a more likely reason, though until the possibility of this is concluded, individuals with HCV will continue to worry about this every time a Pamela Anderson story goes by.
Post-test Confusion
So the period after a test may be fraught with all kinds of worries and concerns. It can possibly be argued that the need for post-test counselling then is not so much required immediately after the test, but at other important junctures during the course of the illness. Intensive post-test counselling, in the way some view it, may not be required so much as advice and much will depend on the evidence and time frames. It may mean that longer term counselling is required at different stages.
Areas that do need to be covered in the first instance are referral to a specialist consultant and support systems for ongoing monitoring: assessing the individual in relation to how long they may have had the virus; looking back to first possible risk; examining behaviour; and assessing how the virus may be affecting them now, with regard to general symptoms, should also be carried out, along with note of any indicators of liver disease.
There are behavioural change that can in some cases be induced through positive diagnosis - that could positively influence drug and alcohol intake and other lifestyle factors. However, for some individuals, it could have the opposite effect in inducing negative behavioural changes such as increased drinking, risk taking, suicidal ideation, etc. There appears to be little interest in providing those individuals the space and help to stop drinking and or stabilise prescribed drug use – such rehabs existed 15 years ago for HIV+ users (the Fountain opened 1994, closed 1996).
Reducing harm to those with chronic HCV in the Criminal Justice system
Prisons are also an area to be concerned; data is limited, however, recent studies from Australia have indicated that prevalence figures there could be as high as 67% of all prisoners. Previous data in the UK indicated a projected figure of 15%, and this may obviously need to be revised. The move in Scotland to pilot projects which provide paraphernalia within the prison system certainly seems to be a step in the right direction in terms of reducing transmission between individuals and actually facing up to the real truths of drug use in prison and admitting there's a problem.
What needs to happen is a significant piece of research, alongside efforts to tackle prevention- through raising the issues on entry/induction, raising awareness that in a population where the “pool” of infection is high, the potential for spread to occur through non-drug using means will be high/increased. Prisoners at HMP Wayland have produced great video using money from the Drugscope Millennium Fund (called Hep C: Bang 2 Rights).
It is important to recognise that those with chronic HCV in prison or elsewhere within the criminal justice system have special needs to be met. Education and advice should be available, not just through the prison staff and those employed through CARATS, but through all prison staff. In particular, the use and hepatoxicity of Largactyl needs to be reviewed in light of deaths related to HCV/Largactyl.
Peer information and advice within the prison is of particular importance with respect to the prison population. Prison is a key vector of hepatitis C infection. As many of the inmates may be at risk from HCV infection, all methods of harm reduction should be considered. Kate Dolan and others have provided evidence from Australia that Methadone maintenance treatment within a prison setting prevents hepatitis C transmission.
In Scotland, some studies have been launched looking at methadone prescribing in prison, which would indicate a potential willingness to explore that here in England. A starting point would be that a working group should be set up to review the needs of HCV positive people within the criminal justice system, to consider urgently ways in which transmission can be prevented or reduced and to make recommendations for future health care and support needs.
This should be an important part of the National strategy, however, it is not clear what the Home Office intends to do! And there is little to suggest this is an issue that is being taken seriously!
PART 3 The journey through treatment - Grant McNally
Part 2 looked at the situation and complexities in HCV testing. This part looks at the treatment journey, what should happen and what does happen. It draws attention to the fact that in the long run, although HCV will only lead to a small percentage of deaths, that total will soon overtake AIDS. Summing up, there needs to be a number of changes to current practice and a greater multi disciplinary approach. Above all there needs to be a greater equity in access anti viral therapy.
INTRODUCTION ::
HCV Disease progression
The outcome for someone diagnosed with hepatitis C can vary hugely from person to person as so many other things can influence the course of the disease. This makes it difficult to predict what could happen. For one person the virus may cause minimal damage and they will live to an old age, for another person it could mean cirrhosis and liver failure.
A flowchart of disease progression was published in GP magazine in 1996 and was put together by Professor Geoffrey Deshiako from the Royal Free hospital in Hampstead and Prof Chris Tibbs then at Kings Collage. It looks at if 100 individuals were infected with HCV, and then states that this would be the estimated outcome. It is often used to illustrate disease pathways.
A problem I have pointed out with this model is that it is based on one exposure incident, rather than by individual people. Therefore, drug users who will take more than one risk or who are constantly at risk, will presumably have less chance of clearing the virus the more exposure incidents they have?
For example, hypothetically, if you had injected once using a shared spoon to cook the' hit', and the person you shared the spoon with was hep C positive and they had drawn up first from the spoon with an un-sterilised needle, which would count as one incident. In that first incident the person would have a 1 in 20 to 1 in 25 chance of clearing the virus. As I said in part 1, we do not know what the statistical chances are of clearing it more than once! If the situation is that you lose that percentage, or it diminishes over time, then the model will be inaccurate for the majority of those infected through drug use. Additionally the model is a best-case scenario, as it does not consider statistical variations caused by non -HCV disease co-morbidities. Nor does it consider that a large number may also be engaging in behaviour that could speed up and alter progression norms.
Time is a usually good indicator of an expected outcome - or an unexpected one. As a general rule of thumb, the length of time someone has been infected (not when they were diagnosed - if unsure go from the first two/three years of injecting) plus information on lifestyle during the period from infection to the present, will possibly provide some clues to what stage you would expect the person may be at regarding Liver disease.
In the scheme of things you would not expect to see either symptoms in general or Liver disease manifestations for at least 10 years, unless there are other factors speeding up progression.
If there are serious Liver problems and the person has no other factors that would speed up progression, such as HIV or chronic alcohol abuse, then this would require looking elsewhere, beyond hepatitis C. Some people with hepatitis C have been found to have a form of autoimmune Liver disease.
Although their could be some dispute around the percentages that are thought to clear HCV viral RNA, their is no reason to dispute the other parts of the algorithm which show that in general the majority of people with hepatitis C wont die from it, although it is still early days. Though what would be evident from deconstructing how the model does not apply to users would indicate that the progression figures for users would be worse, by how much is hard to quantify at this stage. The only addition to this is the concurrent damage from other behaviours, co existing morbidities, alcohol use etc. These could hasten disease progression and as these would be on a case by case basis, it would be hard to factor them in. So in effect although technically the algorithm is possibly accurate, it can only be a ‘best case' scenario. Include the other factors with the PCR, and you have the potential for a very different calculation.
Put simply the majority of HCV+ individuals will not die, but will have significant long-term chronic ill health and disability. What is difficult to predict is when this will happen.
This is quite different to what was being said 15 years ago, when hepatitis C was viewed by a number of professionals as a benign virus that caused few long-term problems.
Now we are seeing a 259% increase in Liver disease deaths in people assessed as moderate non problematic alcohol drinkers. Professor John Henry head of A&E at St Mary’s and former head of poison unit at guys , he has attributed this as the result of undiagnosed HCV in a group who had stopped use and viewed themselves as social drinkers.
The main group who will be affected soon, however, are those with multiple exposures (with the possibility of mixed geno types), and with concurrent long-term alcohol and drug use problems. In terms of mortality the group most affected will be male in the late 30's, early 40's, with long term opiate/alcohol use. Recent research however, by Professor Howard Thomas and Prof Graham Foster has indicated that the majority of those with chronic HCV will develop cirrhosis at some point.
Symptoms - what symptoms? ::
Symptoms and indicators of Liver disease cover a huge spectrum and as I have said previously, some people will have an array of symptoms and some will have none.
Many people will fall somewhere in- between. One reason for this is that HCV appears to behave in a dormant fashion for some years, acting benignly, and then flaring up after a certain period of time. How this happens has never been made clear, possibly because those studying the virus are still unsure. Some comparison can be found in theories about viral triggers to M.E or post viral fatigue syndrome. There have been claims by respected medics that M.E can be triggered by certain viruses. The implicated viruses are known as benign and unlikely to have consequences for the majority of people, but appear to cause some type of immune malfunction leading to a syndrome of symptoms. Among the viruses cited are Epstein Barr Virus (EBV), Coxsackie's B, Glandular Fever, other gastric flu type viruses and mentions here and there within the literature of hepatitis B. Some 10 years ago I wrote to the ME Association enquiring if HCV could possibly cause ME symptoms in some, and stated that some cases of M.E. had also been found to be HCV (there is no actual test for ME, though a test they do use is a VP1 which tests for viral protein, thus confirming a chronic persistent viral infection but, not which one!).
This situation may account for many people with HCV, who suffer the same problems that those with an ME diagnosis have faced for years, i.e. disbelieved, told their symptoms are psychosomatic or imagined. Prescribed psychotropic drugs and referred for therapy. In general, ME appears to have more cache in middle class groups (once referred to as yuppie flu in the 80's) and the ME society distanced themselves from any connection with HCV at around the same time we approached the ME Association, so few users would be granted the sobriquet of PVFS sufferers, coming from a group who are regularly subject to discrimination and unfair treatment by the general medical profession.
For other people with advanced Liver disease many of the symptoms they have will correlate to the many functions of the Liver. In other words, looking at what the liver does gives some clues as to why some symptoms arise. Of these, as energy production is an important function, so chronic fatigue or TATT (tired all the time) is a symptom referred to by HCV+ individuals as the most frequent. Myalgia or muscle aches/pains can also be traced to energy production, muscles burn up energy and become tired when it is not quickly replaced. Arthralgia or arthritis and joint pains of varying degrees are often reported with hepatitis C and there seems to be a strong association to autoimmune problems.
A lot of the symptoms relate to the gastro intestinal system, such as bowel problems, nausea, gastric reflux, loss of appetite etc.
Others are gender specific, for instance increased menstrual problems in women can be related to the livers role in hormone production and blood clotting. Gynocomastia, a swelling of breasts, only occurs in men, but can be traced to the same hormone imbalance. Depression and mood changes have had a long association with liver disease; these can be seen to be caused by chemical imbalances. This may also account for memory and concentration problems as recently reported by Professor Howard Thomas and colleagues at St Mary’s hospital London. This found cognitive impairment regardless of stage of Liver disease in some individuals with HCV.
There are now many recognised health conditions that are described as post hepatitis syndromes or overlap syndromes.
Where Liver disease has become severe other physically obvious symptoms manifest, such as Oedema and Ascites, both which occur after cirrhosis has scarred the majority of the liver. Heptocellular Carcinoma or liver cancer can happen after cirrhosis and
Hepatic Encephalopathy, a confused delirious state induced by toxins not being cleared from the body crossing the blood brain barrier. At late stages such as this then treatment will not be an option. Then the person would be assessed for transplant suitability. As the transplanted liver would be re-infected the decision to transplant will no doubt involve assessment of past behaviour, alcohol use, etc.
For some individuals a transplant may only buy a small amount of time especially if cancer has spread to other areas.
There will be a greater need for available livers to transplant in a few years.
Many people will, however, go for years with chronic disabilities such as pancreaitis or diabetes, both that have been found as common amongst people with hepatitis C.
Factors that may increase disease progression include people age over 40 and male, people with high alcohol use or co-infection with HIV or HBV. Excess use of hepatoxic drugs over a period may also influence the outcome. There is a lot of debate about advice relating to hepatoxic drugs, the standard rule is where the liver is damaged then there is a need to monitor medications to ensure they are being metabolised. Some patient types will need close scrutiny, these would include people with psychiatric illnesses. In the US this used to be known as a 'brown bag medical check'.
Dual Diagnosis ::
People with mental health problems should have their medication checked, as some psychotropic drugs are toxic to the liver. Drugs such as largactyl have been known to cause liver failure. Evidence-based advice is needed for professionals about prescribing potentially hepatotoxic drugs such as these to people with HCV.
Increased drug toxicity in those with advanced liver disease.
Some drugs, which are metabolised by the liver, may be harmful if blood levels accumulate, as is the case in severe liver disease. It has been suggested that impaired liver function due to hepatitis C may be a factor leading to increased deaths from heroin overdose (Warner-Smith et al, 2001). Urgent advice is needed by professionals as to whether or not it is safe to prescribe drugs such as tricyclic antidepressants, acamprosate and disulfiram to people who have chronic HCV. These drugs are contraindicated in those with severe liver disease. Long-acting drugs, which are metabolised by the liver, such as methadone and diazepam are likely to accumulate when Liver function is impaired and evidence-based advice is urgently needed for Doctors who prescribe these drugs to people with HCV.
Non-steroidal anti-inflammatory drugs may be nephrotoxic in patients with cirrhosis. Since these drugs are available over the counter it is important that those at risk of HCV-related cirrhosis are provided with appropriate advice.
Immunisations against hepatitis B and hepatitis A.
Simultaneous infection with multiple strains of hepatitis increases the risk of Liver failure, and the prevalence of HAV and HBV infection among those Already infected with HCV is high. Recent outbreaks of hepatitis A in UK drug users have been reported. As well as superadded infection with hepatitis A and hepatitis B, repeated infections with different viral types and subtypes of HCV may also accelerate liver damage.
All people who inject illicit drugs, or who are considered to be at risk of injecting, and all those who are known to have chronic hepatitis C infection, should be immunised against hepatitis A and hepatitis B as infections with these viruses are likely to accelerate progression of HCV disease.
Treatment ::
The Treatment of Injecting Drug Users :
Over the past 8 years there have been major developments in the area of HCV anti viral therapy. From the early days when treatment was first trailed with Interferon Alfa in mono therapy, to the new peggylated IFA/Ribavirin combinations. Success rates have gone from 25-30% with mono therapy to over 44% with the PEG combination. In addition those in the latter treatment group have a far greater Sustained Viralogical Response and the latter has had better results with geno type 1.
What aren't known are how multiple infections with different sub types impact on treatment failure.
The European Association for the Study of the Liver (EASL) consensus statement (EASL, 1999), the NICE guidelines (NICE, 2000) on combined interferon-ribavirin treatment of HCV (2000), and clinical guidelines on the management of hepatitis C by the British Society of Gastroentology (BSG, 2001) have excluded ‘ in general' all current injecting drug users from treatment.
However, the NICE guidelines have allowed an exception where the onus is on the drug user to reliably assure the prescribing clinician that re-infection, compliance and drug interactions pose no problems. This exclusion, which is open to interpretation when discrimination against injecting drug users is known to be rife in the health system, is a major concern. Drug users form the greatest number of those who are infected with HCV and a denial of treatment of HCV in anyone who has reached a stage when the illness is likely to become symptomatic and life threatening is a serious matter, which infringes human rights. This ruling will considerably increase the morbidity and mortality of drug users.
There is no supporting evidence given for the exclusion of drug injectors from treatment on the grounds of presumed future lack of compliance with the treatment programme, presumed high re-infection rates for those who are still injecting, or (for the NICE guidelines only) for presumed drug interactions. Those who treat people infected with HIV do not exclude current IDU’s, although there is some evidence from an analysis of the Survey of Prevalent Diagnosed HIV Infections that drug users are significantly less able to access treatment than other groups with HIV. The reason for this is unclear.
There is now firm evidence that this exclusion of injecting drug users from treatment for chronic HCV is ill-founded. Two articles on this issue were published in the medical press in July 2001. The first by 7 authors from the University of California in San Francisco laid out the evidence why drug users should not be denied treatment for HCV. The second is a paper in Hepatology from a group in Germany showing that current IDU’s can be treated successfully for HCV.
The paper by Edlin et al at UCSF reflected the consensus of a group of 38 national and international experts on AIDS, liver disease, substance abuse and health policy, called the ‘Hepatitis C Illicit Drug User Policy Group'.
With regard to adherence to treatment this well referenced paper stated:
“Adherence to treatment regimes among illicit-drug users is often thought to be poor. Some might therefore argue that treating drug users for HCV infection is futile. Clinical data however does not support this view. …………. Studies have shown that 40 per cent to more than 80 per cent of drug users adhere to treatment regimens, depending on the treatment, the study population, and the setting.
These rates of adherence are typical of those reported for patients receiving treatment for various medical conditions (30 to 70 per cent). What is required is joint care management, as a liver specialist is not going to be able to assess if someone's drug use is stable or not, that decision should be the substitute prescribers. I see little evidence of this happening on the ground, where other specialists are involved such as psychiatry, then they should also be involved in a joint care management plan.
Possibly one of the problems is that unlike HIV, this virus did not need a new specialism, as the liver is dealt within a variety of clinical settings. Among those are Hepatology clinics, specialists here concentrate on the liver, where there is no hepatology, liver issues are dealt with as a sub discipline of Gastroentology, and sometimes HCV is dealt with by virologists in infectious disease clinics.
As such the person who will be charged with an HCV+ persons care will have little or no experience of working with drug users who have complex needs, some will have very little experience of working with liver disease as well. This means the journey for positive individuals will vary from area to area and for some it will be a difficult one.
As stated previously we also have a situation where the guidelines recommend testing for genotype to determine the length of treatment required, but as there is a shortage in labs able to do this test many people will have to wait until treatment commences before knowing what geno type they have, or how long to expect to be on treatment.
This impacts on the ability to choose, as because their are numerous side effects with the therapy, some people would maybe be prepared to go through this for 6 months, but maybe not for 12. This is a situation that requires addressing soon as it is clearly not best practice. Nor is stating current users are self-excluding themselves from treatment through their continuing to use.
To ensure that drug users have equal access to treatment, care partnerships will need to be set up between the drug services they use and the specialist HCV units they are referred to.
If the decision of the consultant is the main factor of access to treatment, then that person will need the input of those working with the person around their drug use.
However, looking back to the side effects of treatment, this is a major factor in determining whether individuals choose to go on treatment. In some respects many people are fearful about this despite the fact that the majority of people do get through the course. There have been individuals who have had an appalling time, there have been rumours that a couple of individuals committed suicide whilst on treatment. But on the whole most people have few or minor side effects, though that is not to say that treatment is a doddle, remember when Interferon was trailed for cancer it was known as lymphoblastoid interferon! Which gives some clue as to its potential toxicity, but like the disease itself the outcome will always be uncertain, and most people will not know until the start.
From collective data on side effects many have similarities to symptoms of the illness
This starts with flu type illness, poor appetite leading to weight and loss increased need for sleep/ chronic fatigue. Later side effects can include psychological – depression/ anxiety/ mood swings. Hair loss is rare but does occur but not to the extent of chemotherapy. Thrombocytopenia (problems for HIV co-infection),Myalgia Arthralgia and joint pain problems.
For some people with time on their side, for example they have not been infected long, then anti viral therapy may not be required for some years. The benefit of this is that advances in this field are moving rapidly. So for younger individuals who are looking after their health in other areas, then time would be on their side when it comes to decision- making.
New medications are emerging and now peggylated interferon is the recommended choice. The difference between interferon and peg interferon, is that the introduction of poly ethyl glycol aids the process of timed release and maintains the level of Interferon Alpha in the blood, whereas with the non peg interferon this needed to be injected 3 times a week, which meant it peaked and troughed and this is the reason that researchers felt that it's success rates were lower. If you feel you have heard poly ethyl glycol before, if you drive your right, it is something you also get in anti freeze, though I am assured this presents no adverse effect!
There are now currently 50 therapies in different phases of clinical trials, including vaccines, etc. new drugs like Protease inhibitors and Helicase inhibitors are coming through and there is a belief that they will raise the rate of “cure”. Other trials internationally are looking at Amantadine in combination -a triple therapy and also
Extra Corporeal Hyperthermia which involves taking your blood out and heating to 41` degrees, apparently it has had good results in Egypt and Holland.
Support needs:
Little attention has been paid to issues that may affect ex injecting drug users contemplating treatment. In particular support to avoid triggers to relapse. Triggers to previous using behaviour can be identified in very ordinary things ( like £10 notes) if they were associated with past use, therefore the risk to relapse should be obvious to anyone once you ask some one to inject a drug on a regular basis, there are no services that appear to take this into consideration, other than support groups, ex users would be scared to mention any fear of this, worrying it may affect their ability to access treatment. Only those users who have maintained an open link with a drug agency will be able to get help in this. In addition the side effect of treatment or the symptoms themselves in addition to reminding people of withdrawal symptoms, may result in ex users taking drugs to alleviate the bad feelings.
It may be worth considering how these issues may impact on individuals attempting to cease using or going through detoxification, what chance that symptoms are uncovered once the mask of years of opiate use is removed.
Research should look at if this may impact on detox and rehab success and failure rates.
Current users require support in a number of areas. Help to equal access to treatment through the active participation of prescribing clinician, through agreed protocols, in assessment for suitability of anti- virals is but one. Help to achieve stability and appropriate resources to facilitate that, advocacy, where appropriate to access treatment for pain and other symptoms, advocacy for benefits, care and housing needs.
Discrimination of people due to there being HCV+ has been noted as being widespread. Enquiries into this have been held in the UK and Australia. Almost all discrimination was linked, whether the case or not, to perceptions of drug use. Where this was identified as the route of infection many individuals complained of being treated badly, as though they were guilty, or deserved the consequences. This happened across all sections of the National Health Service. Many individuals had reported being removed from dentist’s lists for revealing they were HCV+. Other experienced discrimination in the way they were treated by consultants and specialist
People also described discrimination and stigma in the way they were treated by their GP's in relation to their partners. Two families had reported being told they could not get to see the body of a family member.
Discrimination hearings in the UK by the National Hepatitis C Resource Centre (Matchell & McNally, 2001) reflect similar findings in Australia (NSW Anti-discrimination Board, 2001). They have shown that hepatitis C is a highly stigmatised condition and that discrimination against people with hepatitis C is rife leading to social exclusion. Irrational fears may prevail through an inadequate understanding of HCV transmission, which may be assumed to be the same as HIV or other forms of hepatitis. A more powerful driving force to discrimination is the inextricable link with injecting drug use. Drug users already face major problems of social exclusion and stigmatisation. Discrimination in health care, dentistry, employment and even funeral settings is widespread.
Health care settings appear to be the most widely reported context for HCV related discrimination. In its most overt form, people are refused health care services and treatment on the basis of their hepatitis C status or past, current or assumed drug use.
HCV positive people may be rejected by their families and friends, ostracised or harassed in workplaces and communities, have restrictions placed on them as a result of irrational fears of transmission in the workplace, be denied life insurance or a mortgage, lose their residential status and employment, and have difficulty accessing welfare benefits. In some cases families and friends have been denied the right to view the body of someone known or assumed to be hepatitis C positive. Through these means discrimination often profoundly affects the lives of people living with hepatitis C and their local communities, leading to damaged health, financial consequences, social exclusion, depression and anxiety. Fear or previous experience of discrimination may also deter individuals from accessing the health care system.
Steps should be taken to ensure that the needs of people with hepatitis C are met in order to reduce the psycho-social harm that is associated with the disease. Protection of the human rights of people with hepatitis C, and those most at risk of infection, particularly people who inject illicit drugs, is essential.
The right to privacy and confidentiality is the first line of defence against discrimination and is of critical importance. Employment organisations, dentists and the Health Service need to provide clear HCV policies and support practices which protect a person's privacy and confidentiality.
Educational initiatives are vital to inform people about HCV transmission and the ways in which it can be reduced. The Disability Discrimination Act and Employment Discrimination laws should be reviewed and incorporate chronic viral infection as a disability. Hepatitis C discrimination, harassment and victimisation in public life should be made unlawful.
The Insurance industry should be specifically targeted for clarification of the issue of discrimination and changes must be made to legislation to ensure compliance with anti-discriminatory practices.
Current Guidance for HCV infected healthcare workers DOH 2002- These performing sub cutaneous procedures should be tested for viral RNA. If positive should not perform SC or other exposure prone procedures.
Successful response to therapy will allow worker to return to SC or similar EP procedures. The chance of being infected as an occupational risk through a Needle stick injury is 3%! To date there are no protocols on the use of Interferon or any other drug as post exposure prophylaxis!
To understand the response to HCV we need to understand the drivers behind the response to AIDS/HIV and learn from it, not merely copy it, which appears to have been what has occurred over the last 15/16 years).
In December 04, the Department of Health launched an awareness campaign, many stated that this was too little too late. Regardless, it was very low key to the point of blink and you will miss it.
The first reaction to HCV was to deal with it the same as HIV, the prevalence is greater, then we need a greater amount of NX, counselling, referrals to ever overburdened services. This is not the solution.
You would have thought that the realisation this would have a totally different impact than HIV, it was not, sex, youth, quick death,. Instead it will be a lot of people, the majority who were or are drug users, becoming disabled or living with chronic disabling illness before their time and in many cases reaching premature death in middle age. The greater the sense of inaction, the greater the sense that it appears to matter little that despite the fact that only a small percentage of those infected will suffer serious problems, the numbers will still eventually super cede HIV, for others it will kill by extra hepatic disease or leave them so incapacitated that they have little or no quality of life. Despite this happening to only a small percentage if the figures compare to all our closest comparative nations we will still be looking at possibly more deaths than from AIDS.
So how do we make some positive steps to redress this, for a start we have to put more than £2 million into an awareness campaign, this is a drop in the ocean compared to moneys used to raise awareness of AIDS and falls behind other illnesses and diseases. The 2004 campaign about fungal toenail infections was of the type that should be undertaken with HCV, it is all a question of political will.
HCV money needs ring fenced, and their need to be some accountability on how money for HCV services is spent,
People require access to treatment on a more equitable basis and at a criteria level similar or in line to that of the rest of Europe. Testing facilities need investment and their needs to be a greater effort to ensure best practice in joint care. In the latter there needs to be some effort to establish joint care pathways, as it is many users on substitute opiates find it hard to access treatment mainly on the basis of discrimination. Studies have shown that it is cost effective in the long term to treat users even if they are currently continuing to inject drugs.
Above all, their needs to be a nationwide blood borne virus programme to not only prevent further infections but to prevent any similar situation occurring in future.
In 15 years since we first had a test in the UK (We did not get one until 1991). How many people have been unnecessarily infected?, when Australians talk of 50,000 new infections over there in the last 3 years (2001 -2004) then even going to half of this could lead the potential to be over a hundred thousand infections over the years since 91. This all implies that it is ok to die before pension age, is that good enough! Not in my book and it is time to say so!
Grant McNally
Posted by: Grant McNally | October 19, 2005 at 12:47 PM