Take the Screening Controversy to Congress

The National Hepatitis C Advocacy Council (NHCAC) has issued a call for Congressional hearings to reconcile conflicting recommendations from the CDC, NIH, and USPSTF on hepatitis C screening for high-risk adults. This call comes in response to the recent USPSTF screening recommendations, commissioned by the Agency for Healthcare Research and Quality (AHRQ), which fail to endorse hepatitis C testing of high-risk adults (see previous posts on the USPSTF recommendations here and here).

The NHCAC outlines three areas of concern:

1) NHCAC members fear that existing CDC and NIH recommendations to screen high-risk adults will be undermined by this report, leaving the country's most vulnerable patients without proper care and counseling.

2) There is potential for widespread support for the new guidelines, especially among those who want to (continue) do little in response to the hepatitis C epidemic.

3) Finally, AHRQ guidelines have been used in courts and by insurers, as well as others, as de-facto medical community standards-of-care.

The NHCAC alert concludes: ”These guidelines, if unopposed, will likely result in a reduction in the quality and availability of preventive services for people affected by hepatitis C.”

NHCAC members are urging people to contact their senators to request a hearing on hepatitis C screening recommendations (see full call to action [Word document]). To get the names and contact information of your senators, go here.

More background:

CDC recommendations: The Centers for Disease Control and Prevention (CDC) issued recommendations [PDF version] in 1998 for routine hepatitis C screening for all “persons who ever injected illegal drugs” and other groups.

NIH consensus statement: The National Institutes of Health (NIH) released a consensus statement [PDF version] on the management of hepatitis C in 2002 recommended the promotion of “the establishment of screening tests for all groups at high risk of HCV infection, including IDUs and incarcerated individuals.”

USPSTF recommendations: The U.S. Prevention Services Task Force (USPSTF) conducted an evidence-based review that assessed the impact of hepatitis C screening on long-term health outcomes. The USPSTF found insufficient evidence to recommend for or against screening in high-risk adults.

The USPSTF used strict criteria to examine published data on the benefits and risks of screening (see table). They concluded that while screening high-risk adults was effective in identifying people with hepatitis C, there was little evidence that diagnosis led to reductions in the rates of disease and death from hepatitis C. They acknowledge that treatment results in a sustained virologic response (undetectable hepatitis C viral load six months after treatment) in half of people treated. However, they found almost no data indicating whether people receiving treatment were less likely to experience liver failure, develop liver cancer, or die from hepatitis C-related liver damage.

This last finding is not surprising; with hepatitis C, disease progression typically takes decades, and effective treatment has only been available for a few years. While there’s every reason to believe that a sustained virologic response to treatment will halt (or in some cases reverse) disease progression—and some reason to believe that progression can be slowed even without a sustained virologic response—actual data supporting this hypothesis will require long-term follow-up.

The USPSTF found little research demonstrating that knowledge of hepatitis C status results in better health outcomes (i.e., through minimizing alcohol consumption or receiving hepatitis A & B vaccinations) or reductions in transmission (i.e., through reductions in needle-sharing among drug injectors). The USPSTF also identified potential harms of screening—stigma and labeling, complications from liver biopsy, side effects of hepatitis C treatment.

The USPSTF review correctly points to gaps in research that could help inform policies and programs addressing hepatitis C. But the value of promoting hepatitis C testing in injection drug users and other high-risk groups must be recognized and reasserted. The CDC produced a 'Questions and Answers' document responding to the USPSTF recommendations (PDF here).

Contact your Senators and tell them you want a hearing on hepatitis C screening guidelines. The NHCAC offers the following talking points:

- Screening high-risk adults for hepatitis C is vital to delivering patients the highest standard of care, as well as preventing future transmission.

- Physicians and patients should be able to rely on a consistent message from the federal government. It should be made clear by Health and Human Services that the existing CDC and NIH recommendations have not been replaced.

- Patients should be able to decide whether the “side effects, inconvenience, and costs of treatment” are worthwhile based on their consultation with a physician after diagnosis.

- There are no outcomes data available because this type of research has not been funded to date. The absence of study data does not equate to a lack of benefit from screening. It simply means that direct funding is needed to study these crucial issues.

- There is an abundance of data available for similar diseases that strongly support the benefits of early detection.

- TELL YOUR STORY! What would/may have happened to you had you NOT been screened for hepatitis C and received information on how to prevent progressive liver disease?