Jose Lopez, a New Jersey inmate living with hepatitis C, filed a federal lawsuit against the New Jersey Corrections Department and its medical contractor, Correctional Medical Services Inc (CMS). According to the lawsuit, Mr. Lopez tested positive for hepatitis C in prison in 1992, but was only informed of his status in 2002. He subsequently received hepatitis C treatment but did not respond to therapy. Medical records show that he now has signs of cirrhosis. According to his attorney, Mark B. Frost, "His health is deteriorating, and medical treatment has not been helpful," Frost said in the interview. "There's no way for him to get better." Frost alleges that “[t]he conduct of prison officials and medical providers was outrageous. Not to inform Mr. Lopez of a life-threatening disease is tantamount to watching a person having a heart attack and sit idly by." (Quoted in an article in the Philadelphia Inquirer, “State inmate files U.S. suit over lack of hepatitis care,” Mark Fazlollah, 5/13/04)
This case is not unusual. The prison system has historically refused or restricted access to hepatitis C treatment to incarcerated persons, due primarily to its expense. The cost of treatment comes out of limited prison health budgets. Prison health care is increasingly contracted out to private, for-profit companies, increasing the incentive to save money by refusing to provide treatment (see Prison HMOs and Inmate Health Care by Liz Highleyman in the Nov/Dec 2003 issue [PDF file] of Hepatitis C Awareness News, the newsletter of the National Hepatitis C Prison Coalition). In turn, prisons have been reluctant to provide testing for hepatitis C, since that would spark further demand for treatment.
Surveys show that between 16% and 41% of people incarcerated in state and federal prisons have hepatitis C. Rates are higher among incarcerated women. In any given year, one-third of all people with hepatitis C in the United States spend time in a correctional facility. These statistics are a direct result of the war on drugs and high rates of incarceration of drug users.
As with HIV, change in prison health care policies for hepatitis C frequently result from lawsuits and various forms of external pressure and activism. The problems with hepatitis C care in New Jersey prisons were exposed in a special report by the Philadelphia Inquirer in 2002, resulting in the mass notification to 421 inmates that they had tested positive for hepatitis C but never been informed. The report also forced CMS to expand access to hepatitis C treatment.
The number of prisoners treated for hepatitis C has increased over the last several years, but most systems place a range of constraints and restrictions on eligibility for treatment. Many restrictions are based on remaining length of sentences and how soon an inmate is eligible for parole, regardless of the likelihood of actually receiving parole. In theory, prisons want to ensure that prisoners will be in the system long enough to complete treatment. In reality, that means a lot of people otherwise eligible for treatment won’t receive it.
On-going state budget crises have placed further pressure on prison health budgets and in some cases resulted in cuts to funding allocated for hepatitis C treatment. And few resources exist to link people leaving the correctional system to services in the community. For many incarcerated persons, prisons are their best chance for effective hepatitis C treatment.
In January 2003, the Centers for Disease Control (CDC) issued recommendations for the “Prevention and Control of Infections with Hepatitis Viruses in Correctional Settings” (PDF here). The CDC recommends offering hepatitis C testing to all inmates reporting a risk factor (e.g., history of drug injection). Regarding treatment, the recommendations state:
“All anti-HCV–positive inmates should be evaluated for evidence of chronic HCV infection, including the presence and extent of chronic liver disease and candidacy for antiviral therapy. Treatment of patients with chronic hepatitis C should be conducted in consultation with a specialist familiar with these treatment regimens…. Correctional facilities or systems should establish criteria based on the latest treatment guidelines for the identification of prisoners who might benefit from antiviral treatment.”
The Federal Bureau of Prisons released their “Clinical Practice Guidelines for the Prevention and Control of Viral Hepatitis” in February 2003 [PDF file]. They recommend hepatitis C screening for all sentenced inmates with a known risk factor or clinical indications (e.g., jaundice). Furthermore, they state:
“Antiviral therapy is recommended for patients with chronic hepatitis C and a liver biopsy with portal or bridging fibrosis and at least moderate inflammation and necrosis. Persons with severe liver disease, including compensated cirrhosis, are at higher risk of developing liver complications and should therefore be priority candidates for treatment. Inmates with normal liver histology or minimal fibrosis should be rebiopsied every one to five years. The timing of followup should be made on a case-by-case basis. Inmates with minimal fibrosis and marked hepatocellular necrosis and inflammation should be rebiopsied in one year or considered for treatment on a case by case basis, since these inmates are at greater risk of developing progressive fibrosis.”
The National Hepatitis C Prison Coalition maintains a list of links to hepatitis C treatment guidelines for state prisons.
There's a clear need for advocacy to increase the availability and quality of hepatitis C care for prisoners. Check out the links below to learn more and get involved.
In New York, the Legislative Action Coalition on Prison Health has been working to support bills in the state legislature to improve the quality of HIV and hepatitis C care in state prisons -- see February 2004 coalition memo [PDF file], bill status [PDF file], summary and text of Assembly bill 4204, introduced by Assemblymember Richard Gottfried (companion Senate bill 1840 introduced by Senator Olga Mendez).
The Latino Organization for Liver Awareness (LOLA) provides hepatitis C education to prisoners in New York. The Fortune Society and the Osborne Association provide services to former prisoners in New York. The Fortune Society devoted the June 2003 issue [PDF file] of their newsletter, Fortune News, to hepatitis C.
The National Hepatitis C Prison Coalition is the home of the Hepatitis C Awareness Project and includes a broad range of information and resources for prisoners and advocates, including the HCV forum with Dr. Ben Cecil.
Rachel Maddow maintains the prisonpoz listserve supporting activism on HIV and hepatitis in prisons.
Access to Health Care for the Incarcerated Working Group of the AIDS Treatment Activists Coalition (ATAC)
HIV & Hepatitis Education in Prison Project (HEPP) from Brown University
Treatment of Chronic Hepatitis C in a State Correctional Facility, Allen et al., Annals of Internal Medicine, February 4 2003 -- full text, PDF; accompanying editorial by Theodore Hammett (PDF version)
Philadelphia FIGHT publishes Prison Health News, focusing on HIV, hepatitis, and other major illnesses in prison. To subscribe, send a request to: Laura McTighe, Philadelphia FIGHT, 1233 Locust St., 5th floor, Philadelphia PA 19107. As part of their AIDS Education Month programming, Philadelphia FIGHT is sponsoring "Beyond the Walls: 2nd Annual Prison Forum" on June 8.
Summary report from No Lost Causes, a national action meeting on HIV and hepatitis in prisons held in 2000 and sponsored by the National Prison Project of the American Civil Liberties Union (ACLU). See also the ACLU 2002 position paper Hepatitis C Infection in Prisons and Jails (PDF file).
Hepatitis C: A Silent Epidemic Strikes U.S. Prisons from LiP Magazine, May 2001
Understanding Prison Health Care, a well-designed web resource
Position Statement on the Management of Hepatitis C in Correctional Institutions adopted in 1999 by the National Commission on Correctional Health Care (NCCHC)