Howard Josepher lived with hepatitis C, a virus that can lead to chronic liver problems, for at least two decades before he was able to access the 90-day, $90,000 drug regimen that cured him in 2015. Josepher, 78, received his diagnosis in the 1990s but said he believes he contracted the virus from shared needles sometime around 1964, shortly before he stopped using heroin for good.
"In those days, we did not know or ever hear of or use a term called hepatitis," said Josepher, co-founder and executive director of Exponents, a lower Manhattan community center serving people with substance abuse issues. He said at least one of his friends died from liver complications.
Now epidemiologists say the virus is spreading among a new generation of New Yorkers, driven by an increase in heroin use. An estimated 200,000 residents are living with hepatitis C—more than the number with HIV—and about half are unaware of their diagnosis, according to the epidemiologists.
A group of 94 advocates, clinicians and health officials are calling on Gov. Andrew Cuomo to appoint a task force and approve funding for coordinated statewide efforts to eradicate hepatitis C, the way he did with the campaign to end the AIDS epidemic in 2014. State Health Commissioner Howard Zucker and other city and state officials expressed enthusiastic support for the goal during a hepatitis C summit in Albany last week.
But before Cuomo will throw his support behind a plan, advocates said, pharmaceutical companies will have to come to the negotiating table.
"There's a bit of a dance," said Charles King, president and chief executive of Housing Works, who helped organize the Albany summit. "We're following the pattern that we developed for ending the AIDS epidemic."
Putting New York on course to end the hepatitis C epidemic in the near future would require an investment of $10.8 million in fiscal year 2018, a fraction of what the state has spent on HIV in recent years, according to a budget proposal advocates submitted to the state Legislature. But that annual investment doesn't include the cost to the state Medicaid program of putting thousands more people on drugs to cure hepatitis C—which can cost more than $1,000 per pill.
Part of the summit's goal was to demonstrate that there is political will in New York to increase treatment for hepatitis C, King said.
He and other advocates have begun conversations with drug manufacturers to spark interest in negotiations with the state, he said. One proposal involves amortizing the cost, so that it doesn't disturb the global cap on annual Medicaid spending. King would not name the companies, but the most high-profile manufacturer is Gilead, which charges Medicaid $1,120 per pill for its hepatitis C cure, Harvoni, according to the state formulary.
"We have consistently engaged in access discussions with the New York State Medicaid and Department of Health leadership since our products were approved, and we are engaged in discussions regarding this initiative," a Gilead spokeswoman said in an email.
Critics say pharmaceutical companies have a moral imperative to charge fairer prices, especially because taxpayers are often the ones paying. In Josepher's case, the federal insurer Medicare paid $75,000 for his treatment, he said, and a charitable foundation covered his $15,000 copay.
Despite the costs, advocates aren't letting insurers off the hook.
"We oppose and will aggressively protest any restrictions set up by public or private health insurers," said Jeremy Saunders, co-executive director of Vocal NY, an advocacy group.
King said he hopes the governor will announce his commitment to create a task force by June. Cuomo did not respond to a request for comment.
"Gov. Cuomo must appoint a task force to end hep C epidemic, advocates say" originally appeared in Crain's New York Business.