By Suzy Subways
From PHN Issue 35, Winter 2018
As many as four out of every ten people incarcerated in state prisons are living with hepatitis C, the US Department of Health and Human Services reports. But fewer than one out of every hundred people in prison living with chronic hepatitis C are getting treatment, according to Mandy Altman of the Hepatitis Education Project. Prisons are refusing to provide treatment even though there is now a cure. Drug companies have been allowed to set extremely high prices, because we live under a free-market economic system, and states lack the money to pay.
“The direct-acting antiviral drugs that cure hepatitis C make elimination feasible in the United States,” according to the National Academies of Sciences, Engineering and Medicine (NASEM). The government founded NASEM to provide expert advice so Congress and the President can make better decisions. NASEM is putting together a National Strategy for the Elimination of Hepatitis B and C, but it’s unclear whether the government will take its advice.
A win-win ignored
“Unrestricted hepatitis C treatment could reduce new cases of hepatitis C by 90% by 2030,” NASEM reports. In order to keep hepatitis C from spreading, prisons must offer testing to everyone and provide treatment to anyone who has chronic hepatitis C, the report states. NASEM recommends that the federal government get a license from a drug company to provide treatment to neglected populations. The federal government would pay about $2 billion for the licensing rights to a patented drug. States would then pay about $140 million to provide treatment to 700,000 people in prison or on Medicaid. Without the license, it would cost about $10 billion to treat only 240,000 patients.
Under the license, the drug company would be paid, and the cure would only be given to people who are not already buying the drug—so the company would not be losing any high-priced business. The company’s profits under the license “would exceed what the company could expect without the license,” Altman says.
But drug companies refuse to hear it. “Based on my colleagues’ conversations with pharma companies, they are not open to negotiating any such licensing agreement,” says Elizabeth Paukstis, Public Policy Director of the National Viral Hepatitis Roundtable.
And Altman doesn’t know of any action being taken to implement NASEM’s strategy. “I think it’s unlikely that the federal government—especially under this [Trump] administration—will pursue a licensing agreement with a drug company to treat people living with hepatitis C in prison,” Paukstis says. “It’s up to us advocates to figure out how to make it happen.”
Building political will
Three things are needed to put pressure on the government and drug companies: increased competition in the market, advocacy, and grievances and litigation filed by people in prison. Competition in the hepatitis C drug market is already increasing, with several companies offering slightly less expensive new drugs, but it’s not enough. Advocacy will have to step up to the plate.
“We need to start by educating policymakers and raising awareness about the egregious lack of hepatitis C treatment provided in prisons,” Paukstis says. She explains that anyone who cares about this issue needs to tell elected officials that hepatitis C is a public health crisis that is increasing because of the opioid epidemic, providing treatment in prisons is necessary to stop the disease spreading, treatment in prison is a moral and constitutional obligation, and pharmaceutical companies must provide deeper discounts.
States might be more likely to successfully negotiate lower prices than the federal government. Officials in Louisiana and New York are talking about increasing their commitment to fight hepatitis C. This commitment needs to include treatment for people in prison.
“I have spoken to medical directors of state correctional departments who have said their DOCs would be open to lifting restrictions to hepatitis C treatment if they could get lower prices from the drug companies,” Paukstis says. “Unfortunately, drug companies have shown no willingness to negotiate as of yet. But if more pressure to do so mounts, and more influential and public figures apply that pressure, maybe the companies will start to budge.” If the public demands it, laws could be changed so states have more power to negotiate discounts.
In the meantime…
If you have made a written request for hepatitis C treatment and received a denial of the request on paper, you can file a grievance. Try to prove that the decision was based on the high cost. Your grievance can say, “Because there’s no medical reason for refusing the care, I request that this be remedied. Failure to do so would be deliberate indifference to a serious medical need.”
The prison may respond by saying you are being treated already because medical staff are monitoring your condition with blood tests. This is still deliberate indifference. Providing treatment known to be less effective still exposes you to unacceptable risk of injury. Try to establish that the prison was aware of the risks to your health and didn’t take reasonable measures to prevent them.