As a liver disease doctor in Chicago, Illinois, Nancy Reau treats patients with hepatitis C, a viral infection that kills more people in the United States than 60 other infectious diseases combined, including HIV. Her practice has changed dramatically since 2013, when a flurry of miracle “cures” for hepatitis C were approved. Since then, Reau has successfully treated a majority of her hepatitis C-positive patients.
However, Reau still has about 30 patients who are waiting for treatment. These patients have one trait in common—they’re covered by Medicaid. Across the country, Medicaid programs continue to triage curative treatment, even as most other insurance providers have adopted a treat-all approach. Some Medicaid restrictions include sobriety tests and proof of extensive liver damage, which run counter to medical consensus.
Treatment denial “is a hard message for patients to stomach, especially a patient who has finally invested in taking care of themselves,” Raeu says. Often, she adds, “they fall out of the system.” For many state Medicaid programs, restricting access softens the financial blow of expensive hepatitis C cures. But for doctors, these restrictions are a nightmare, as they block access for their most vulnerable patients.
In recent years, the price of hepatitis C medications has dropped dramatically, yet more than half of state Medicaid programs were given a “D” or an “F” in recent report card compiled by Harvard’s Center for Health Law and Policy Innovation (CHLPI). With this report card in hand, lawyers at CHLPI and other advocacy groups have a new weapon in their legal battle on behalf of low-income people seeking a cure for hepatitis C.
The fracas over hepatitis C medication began in 2013 when the first curative treatment, Sovaldi, was priced at a headline-grabbing $1,000 per pill, prompting outcry from public and private insurance programs alike. Over time, however, market competition slashed wholesale prices and behind-closed-door negotiations between pharmaceutical companies and insurance providers lowered the real cost even further.
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Today, treatment restrictions have been lifted by most insurance providers, and even by Medicare, a federally-funded program for the elderly. In part, that’s because number crunching revealed that treatment is cost-effective in the long run.
But Medicaid, a program designed for the poor, is different. Medicaid programs rely on budget allotments from policy makers in Washington DC, making them highly sensitive to short-term expenses. One analysis found that two hepatitis C drugs—Sovaldi and Harvoni—comprised nearly 5 percent of the total budget for drug expenditures in 2015.
However, since 2015, six new drugs have been approved at dramatic discounts. One such drug, Mavyret, was priced at $26,400, a 72 percent discount to Harvoni’s wholesale price. In theory, that means the net cost of treating a Medicaid patient with HCV would go down, according to Anna Kaltenboeck, program director at the Center for Health Policy and Outcomes, Memorial Sloan Kettering Cancer Center, and member of the Drug Pricing Lab team.
For Reau, the dramatic price drop, but relatively unchanged policies means ongoing treatment restrictions have “nothing to do with price.” Instead, she says, they’re about stigma, as hepatitis C is associated with injection drug use. That’s part of the argument lawyers are making in a growing number of lawsuits levied against state Medicaid programs across the country.
“I think states are hiding behind cost at this point,” says Phil Waters, clinical fellow at Harvard’s CHLPI. Regardless of budget considerations, Medicaid’s restrictions are illegal, Waters argues. In 2015, the Centers for Medicare & Medicaid Services warned states that treatment restrictions violated federal rules. A spokesperson for the National Association of Medicaid Directors did not respond to request for comment.
Over the past several years, litigation has been initiated in Indiana, Washington, Colorado, and Missouri specifically on the Medicaid issue, Waters says. In Washington and Colorado, judges sided with patients, forcing Medicaid programs to drop treatment restrictions. Facing public pressure and mounting lawsuits, some states have voluntarily eased restrictions, he says.
Today, the people being infected with hepatitis C are young, injection drug users. With a cure in hand, countries like Australia and Georgia are well on their way to eradicating hepatitis C by targeting high-risk populations.
Meanwhile, the booming opioid addiction crisis has contributed to a three-fold increase in the number of new infections in the United States. Although most of the 3.5 million Americans with hepatitis C are members of so-called “Baby Boomer Birth Cohort”—a generation of people who were infected before the virus was discovered in 1989—hepatitis C is spreading rapidly among 20-29-year-olds.
With current treatment restrictions in place, “you are just building your next birth cohort,” Reau says.
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