The Staggering Price Tag of the New Hepatitis C Cure Is Costing Lives
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The following first appeared on Substance.com:
“I was addicted to heroin and cocaine for 30 years—they caused me a mountain of trouble,” says Paul Yabor, 52, cofounder of Hepatitis C Allies of Philadelphia, a support/advocacy group. Part of that trouble is “a record 16 pages long”—a string of drug-related property crimes that led to seven off-and-on years in prison. It was there in 1990 that Yabor was diagnosed with both HIV and hepatitis C virus (HCV). In those days, there was only one partially effective treatment for hep C, alpha-interferon, but the side effects of its standard yearlong course—harsh flu-like symptoms and depression among others—were so debilitating that many chose to wait for better treatment options. ( HCV does not progress to liver damage in an estimated 30% to 40% of those infected.) Last released from prison in 2009 and drug free since then, Yabor became an activist on HIV and HCV (“the forgotten little brother”).
Meanwhile, his own hep C infection progressed—several years ago he was diagnosed with fatty liver, and this spring a “Fiberscan” (sophisticated ultrasound) measured his liver damage as “compensated cirrhosis.” He knew he had to act. Just in time, he learned that doctors were reporting excellent results from a combination of two new antivirals: Olysio (simeprevir) and Sovaldi (sofosbuvir) taken for just three months. Both were approved by the Food and Drug Administration (FDA) last fall and have been widely hailed as breakthrough treatments. Although each was approved for separate use along with the older drugs peg-interferon and ribavirin, many doctors have pointed to small trials showing 90+% cure rates using the two new drugs together in people with the most common HCV form, genotype 1, thus avoiding the troublesome side effects of the older meds.
This May, Yabor’s doc prescribed the duo of new drugs. But his HMO—he’s privately insured through Medicare due to disability from HIV infection—rejected the prescription, demanding evidence of liver damage. His doctor then submitted the Fiberscan results and within two weeks the drug combo was approved. Yabor later learned that “they routinely refuse to authorize these [new HCV] drugs, but then after the doctor resubmits the request, showing evidence of scarring, they [generally] approve them.”
But there was a condition: Yabor must report to his clinic every week to get the next week’s supply of pills, allegedly to ensure that he faithfully takes the drugs. “I’ve been HIV-positive for decades and deal daily with adherence, I get it,” Yabor says. “If I missed an appointment, my treatment would have been ruined—you have to take it every day.” At press time, Yabor had been on treatment for eight of the recommended 12 weeks. He initially experienced night sweats and continues to have insomnia and resulting fatigue—“a small price to pay for hep C treatment,” he says. By the second week, his HCV viral load had dropped from 3 million to a mere 15, virtually undetectable.
The restriction faced by Yabor is one of many treatment barriers faced by former users. Many people who were infected with HCV through sex or other non-drug routes run into similar initial blockages. What’s behind them? The unprecedented, exorbitant price of both drugs—$84,000 for the full course of Gilead Sciences’ Sovaldi and $66,000 for Janssen Pharmaceuticals’ Olysio— among the highest drug prices in US history.
Yabor must report to his clinic every week to get the next week’s supply of pills, allegedly to ensure that he faithfully takes the drugs. “I’ve been HIV-positive for decades and deal daily with adherence, I get it,” Yabor says. “If I missed an appointment, my treatment would have been ruined—you have to take it every day.”