While the treatment and detection of hepatitis C have become significantly less difficult in recent years, the state of Illinois Medicaid system won't cover treatment for the disease until patients reach Stage 4, when their liver becomes cirrhotic, according to advocates and healthcare providers.
"It's heartbreaking, and it's not why I signed up to be at County," said Oluwatoyin Adeyemi, MD, an infectious diseases physician at Cook County Health and Hospital System.
Adeyami was among several speakers July 21 at the daylong forum The Silent Epidemic: Increasing Access to Hepatitis C Treatment Care, held in observance of the National African American Hepatitis C Action Day and as part of an ongoing #BlackLivesMatter discussion series.
The medication Harvoni, which has greatly eased treatment of hepatitis C, was first marketed in 2014, and yet another medication, Epclusa, was just approved in June of this year. Prior to Harvoni, the standard treatment was highly toxic and promised a much lower rate of success. Harvoni and Epclusa both have had a success rate of well-over 90 percent in curing patients of Hepatitis C in a matter of weeks.
"These two therapies leveled the entire scene of hepatitis C," said Bashar Attar, MD, gastroenterology and hepatology chair at Cook County Health and Hospital System.
But Harvoni and Epclusa, both manufactured by by Foster City, California-based Gilead Sciences, are extremely expensive. A full regimen of Harvoni, for example, costs about $94,500. Various providers and insurers have negotiated lower prices for Harvoni, but all too often, according to Jill Wolf, hepatitis C program director for Caring Ambassadors, Inc., agencies and other stakeholders use those price tags to shut down conversation about the drug's availability. She said that treatment for hepatitis C is at "exactly the same place" HIV/AIDS was in the early '80s in terms of awareness.
"We're the poster child of the state not to live in if you have Hep C and Medicaid," said Wolf. "…There obviously are a lot of issues going on in our state. But hep C is very different than HIV, and mobilizing a community that is extremely diverse is really hard."
She added that patients with the financial resources can now be cured, but poorer patients must do without. Those patients without the means are told they're not sick enough to warrant treatment.
"Literally, the question to [physicians like] Dr. Adeyemi is, 'Is this because I'm Black? Is this because I'm poor?'" Wolf said. "The answer is, 'Yeah, that's why.'"
Illinois' law is in violation of federal Medicaid laws, according to Ruth Edwards, managing attorney for Legal Council for Health Justice. Her organization is looking for specific instances wherein Ilinoisans have been denied coverage because their hepatitis C was not advanced enough; legal and service organizations in other states have filed suit against their state governments to get similarly onerous rules lifted. But medical providers frequently refrain from writing the prescriptions for Medicaid patients since they know the coverage will be denied, but advocates say they should write them anyway, to build up a history of denials within the state.
Ramon Gardenhire, vice president of policy for AIDS Foundation of Chicago ( AFC ), said that, while those state rules are obviously cause for concern, advocates need to address the medication prices, too.
"We have to make sure that we are holding pharmaceutical companies accountable, so they putting out these drugs priced in such a way that it allows a state to access it as much as they can, particularly a state like Illinois where we still face a huge fiscal crisis," he said. "We applaud the amount of work that goes into these drugs but we have an ethical responsibility to make sure there is access to themunilateral access, not just people with commercial insurance."
Advocates are also pressing for increased hepatitis C testing, which is also sometimes eschewed by government agencies and service providers for being too expensive. But Adeyemi said those concerns about cost are misguided. A negative result incurs a testing cost of about $7. A positive result will indeed yield more medical expenses for the patient, but not as many as allowing hepatitis C to go undiagnosed and untreated for longer. According to Adeyemi, increased testing would save about 120,000 lives and about $2.5 billion.
"Other countries have a plan for hepatitis C," she said. "It's really not that complicated."
Deaths from hepatitis C overtook the number of deaths from HIV/AIDS in 2007. There are about 5.2 million individuals around the world with the disease; for most people who are infected, it becomes a chronic disease, according to the Centers for Disease Control and Prevention.
Among those also speaking at the July 21 panel were Dr. Jim Lando of U.S. Department of Health and Human Services ( DHS ); Clelita Mathole of Gilead Sciences; Peter McCloyd of Ruth M. Rothstein CORE Center; Edwin Ervin of Broadway Youth Center; Augustine Sharp of National Black Leadership Commission on AIDS, Inc.; and Cynthia Tucker of AIDS Foundation of Chicago. Sanford Gaylord of DHS' HIV/AIDS Regional Resource Network Program was the emcee. The forum was sponsored by Chicago Department of Public Health ( CDPH ); Chicago Area HIV/AIDS Integrated Service Council ( CAHISC ); the Primary Prevention Early Identification Committee ( PPEI ); HHS Regional Resource Network Program, Region V; Caring Ambassadors; and the Black Treatment Advocates Network ( BTAN Chicago ) as well as AFC and Gilead Sciences.