Community Leaders Call For End To Hepatitis C Treatment Access Crisis

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Community Leaders Call For End To Hepatitis C Treatment Access Crisis

Urge HHS Secretary Burwell to ensure lifesaving treatment is available for everyone living with the chronic, infectious, life-threatening disease.


FOR IMMEDIATE RELEASE | September 10, 2014



 Ryan Clary, National Viral Hepatitis Roundtable,, (415) 235-8593

Emalie Huriaux, Project Inform,, (510) 469-7941


A coalition of leading hepatitis C advocacy organizations and medical experts today called on Health and Human Services Secretary Sylvia Mathews Burwell to take leadership in eliminating harmful and discriminatory barriers to hepatitis C treatment access. The coalition sent a letter expressing alarm over restrictions placed by many public and private payers on access to new effective hepatitis C treatments that have high cure rates and minimal side effects. The coalition also sent a statement signed by over 700 organizations, individuals, and medical providers demanding availability of treatment for everyone living with hepatitis C and calling on all stakeholders, including government, the pharmaceutical industry, and public and private payers to work together on solutions.


“The recent FDA approval of highly effective new treatments brought tremendous hope to the millions of Americans estimated to have chronic hepatitis C,” said Ryan Clary, Executive Director of the National Viral Hepatitis Roundtable (NVHR).  “However, that hope quickly diminished when public and private payers, including many state Medicaid programs, implemented restrictions that provide access only to the sickest patients and deny access to those with active or recent substance use issues. These barriers undermine the purpose of the Affordable Care Act both to provide quality affordable health care to people regardless of pre-existing conditions and also to eliminate health disparities.”


Advocates are particularly alarmed by restricted treatment access in many state Medicaids, the safety net health program for low-income Americans. The Center for Health Law and Policy Innovation at Harvard Law School is currently researching state Medicaid polices with respect to accessing these new treatments.  Looking specifically at fee for service programs, preliminary analysis indicates that many states are now limiting treatment to individuals with severe liver damage (those with a metavir score of F3 or F4) and are also requiring significant periods of sobriety, usually between 3-6 months, in order to be treatment eligible.


These restrictions contradict recommendations in a recent article published in Antiviral Research by Dr. Brian Edlin and colleague Emily Winkelstein of Weill Cornell Medical College and the National Development and Research Institutes, in which they make the case for achieving hepatitis C eradication in the United States– an achievable goal, but one facing serious challenges.  Care and treatment is a critical piece of the six-part strategy outlined by Dr. Edlin, which stresses the need to also enhance and scale up surveillance and epidemiology, prevention, testing, social policy, and research.  Such a comprehensive plan can only be realized with solid political will, adequate investment, and robust advocacy. 


“At this watershed moment in the epidemic, just at the moment that we have the tools to eradicate this scourge, it would be a perverse and shameful indictment of our healthcare system if the structure of medication financing in our country were to foil our ability to use them, said Dr. Edlin. “Affordable pricing will assure the largest possible market for the drugs, a win-win arrangement. Government, industry, and payers must work together to reach agreements to assure full access to antiviral drugs for all who need them.”


Advocates will continue to call on all stakeholders to develop collaborative solutions to end the hepatitis C treatment access crisis. “Everyone living with hepatitis C deserves lifesaving treatment,” said Emalie Huriaux, Director of Federal and State Affairs at Project Inform. “Treatment decisions should be made by people with hepatitis C and their doctors, not by insurance companies. The only way we will end the hepatitis C epidemic in the United States is by assuring access to the cure to everyone.”


The letter to Secretary Burwell was signed by the following organizations and medical providers:


Caring Ambassadors Program, Inc.

Global Liver Institute

Harm Reduction Coalition

Hepatitis Education Project

Hepatitis C Mentor & Support Group, Inc.

National Alliance of State and Territorial AIDS Directors

National Viral Hepatitis Roundtable

Project Inform

Treatment Access Expansion Project


Brian R, Edlin, MD, FACP, FIDSA

Associate Professor of Medicine, Weill Cornell Medical Center, New York, NY


Camilla Graham, MD

Beth Israel Deaconess Medical Center


Robert Gish, MD

Vice Chair

National Viral Hepatitis Roundtable