I traveled to Boston last weekend for the annual meeting of the American Association for the Study of Liver Diseases. This meeting is personal for me — it was where 11 years ago I decided to begin treatment for hepatitis C, which I had been diagnosed with nearly 20 years earlier.
Hepatitis C is the nation’s deadliest infectious disease and a leading cause of liver cancer. Although recent advances in treatment represent lifesaving progress, more must be done to deliver on the promise of these advances and eliminate viral hepatitis in the United States.
I was initially diagnosed with hepatitis C in 1990, but, like many people with it, I deferred treatment — the options available had low success rates, significant side effects, and were time-consuming. For a while the complications were minimal, but by the early 2000s my tests began to show signs of liver disease. By 2008, I had signs of cirrhosis, which is scarring of the liver, a sign of late-stage liver disease and a precursor to liver failure.
At the 2008 liver diseases meeting in San Francisco, which I was attending as a longtime viral hepatitis advocate, Dr. Nezam Afdhal, who is now the chief of the division of gastroenterology, hepatology, and nutrition at Beth Israel Deaconess Medical Center in Boston, convinced me to enroll in a clinical trial for a promising new hepatitis C drug.
The 48 weeks of treatment included weekly injections of pegylated interferon, twice daily doses of ribavirin, an antiviral medication, and 12 weeks of an experimental drug called telaprevir, a direct-acting antiviral. When the treatment ended in December 2009, my blood tests showed no signs of the hepatitis C virus. Six months later, I was told I was cured. Even better, scans show that my liver has started to heal itself and reverse the decades of damage from hepatitis C.
My story — and my health — are a testament to the lifesaving potential of new treatments. Yet even though we now have cures for hepatitis C, and a vaccine to prevent hepatitis B, steps must be taken to reach the populations who are disproportionately affected by this disease, including certain racial and ethnic minorities, baby boomers, people who inject drugs, and some recipients of blood transfusions and organ transplants, in order to eliminate viral hepatitis in the U.S.
To start, the U.S. needs a national elimination strategy with dedicated funding. In 2016, the World Health Organization drafted the global viral hepatitis strategy to eliminate viral hepatitis as a public health threat by 2030. It was signed by all WHO members, including the U.S. The U.S. Department of Health and Human Services also has a National Viral Hepatitis Action Plan, but it’s not enough. We need dedicated funding from Congress for national awareness and testing efforts. We also need funding to support the CDC’s draft recommendation for all adults to receive a one-time hepatitis C antibody test.
The comprehensive approach and resources dedicated to eliminating HIV in the U.S. should be a model for eliminating viral hepatitis. For fiscal year 2020, HHS currently allocates $929 million for HIV/AIDS surveillance and prevention, including $140 million for a dedicated initiative to end HIV in the U.S. By contrast, a paltry $39 million is allotted for the prevention and control of viral hepatitis.
In addition, we must successfully enlist civil society — including the full network of service organizations, patients, practitioners, case workers, nonprofit service organizations, and the business community — in our advocacy for additional resources, testing, and treatment. Countries that do that are more likely to have a dedicated elimination strategy and funding to support it. When all sectors of society advocate for change, policymakers listen.
Finally, elimination will not be possible unless people living with viral hepatitis are tested, diagnosed, and given access to treatment. Globally, 290 million men, women, and children are living with viral hepatitis but don’t know it. In the U.S., as many as 4.7 million people may be living with hepatitis C, with half of them unaware they are infected. Beyond screening for hepatitis, we need to make sure that everyone with viral hepatitis has access to care and treatment.
While cost has been used as an excuse to ration these lifesaving treatments, it should not be a barrier to curing the disease. Early detection and treatment are more cost-effective in the long run than treating ongoing complications from hepatitis and progressive liver disease. Further, competition among pharmaceutical manufacturers has lowered the cost of treatment, and payers are implementing innovative contracting strategies to make treatment more accessible.
The National Viral Hepatitis Roundtable and Harvard Law School’s Center for Health Law and Policy Innovation launched “Hepatitis C: State of Medicaid Access” to analyze barriers to curative hepatitis C treatments in all 50 states. These organizations found that 38 states restrict who can access curative treatments for hepatitis based on three primary factors: fibrosis (liver damage or disease progression), sobriety (requiring patients to have periods of drug or alcohol abstinence before receiving treatment), and prescriber restrictions (limiting prescribing eligibility to specialist practitioners). States must remove these illegal restrictions immediately, as required by federal Medicaid law, so those living with the disease can access cures.
I am encouraged by the progress made in combating viral hepatitis, and the conversations that advocates, health care providers, and researchers continue to have at influential medical conferences and beyond. However, conversation isn’t enough — we must translate words into actions to ensure that everyone has the opportunity to be cured of viral hepatitis.
Michael Ninburg is the president of the World Hepatitis Alliance and executive director of the Hepatitis Education Project.