Good News Comes Slowly on Access to Hepatitis C Medications

By Suzy Subways

From PHN Issue 39, Winter/Spring 2019

Very few people in prison who are living with hepatitis C are getting medication to treat and cure it — only 3%, according to a Columbia University survey released last year. But this is changing, slowly. California passed a budget to treat 22,000 people living with hep C in prison. People in Indiana, Massachusetts, Colorado and Pennsylvania prisons won class-action lawsuit settlements requiring the states to provide treatment in prison for everyone with chronic hepatitis C. And lawsuits in many other states are ongoing.

Where lawsuits have won, there will still be a wait. Under the settlement in Pennsylvania, for example, about 5,000 people in the state’s prisons will get direct-acting antivirals (the hepatitis C cure) by June 2022. In some other states, individuals have filed lawsuits to get hep C treatment, and in some of these cases, as in Florida, a judge issued an injunction that will require prisons to treat everyone with chronic hepatitis C, not just those who filed the lawsuit.

The main barrier to treatment has been the high cost demanded by drug companies for direct-acting antivirals. As states negotiate with drug companies for lower prices, and drug companies compete with each other, the cost of hep C treatment has dropped to about $20,000 per patient — still quite expensive.

One idea to reduce costs is for states to pay a fee to a drug manufacturer for unlimited access to its hepatitis C medication for five years. This way, everyone in the state’s prisons who needs it can be treated, but without spending more money than the state currently does, because it won’t be paying per patient. Louisiana has accepted bids from three drug companies to set up this model, and the state will select one of the three to start this summer. Health Secretary Rebekah Gee told Hep magazine that several other states have expressed interest in creating their own such programs if Louisiana is successful.

Another barrier to treatment is that many people living with hepatitis C do not know they have it. Only 13 states routinely test people in prison for hepatitis C. In most states, you must request to be tested and then follow up to make sure you get your test results. So it’s unclear how many people are actually living with hep C in prisons. The American Association for the Study of Liver Diseases and the Infectious Diseases Society of America report that 17% to 23% of incarcerated people have hep C. But the exact percentage will only be known — and everyone can only be treated — when everyone in prison can get tested for the hepatitis C virus.

Most prisons still deny hepatitis C treatment to people who are not already very sick from the disease. The federal Bureau of Prisons guidance only sets a high priority for treatment for people who have cirrhosis, liver cancer, serious hep C-related medical conditions, had a liver transplant or are taking certain immunosuppressant medications. Most states either follow this guidance or have their own restrictions for access to treatment. For example, in New Mexico, prison officials will not allow treatment unless the patient has not had major disciplinary infractions for at least 12 months.

So it’s important to keep up the advocacy for everyone with chronic hep C to get direct-acting antivirals. Fortunately, the recent court victories in various states can be cited as a legal precedent, no matter where you are imprisoned in the United States. When the standard treatment is denied to a patient only because of the cost of the medication, this is deliberate indifference to a medical need. Decades of legal precedent have ruled that deliberate indifference to a serious medical need is cruel and unusual punishment and therefore violates the Eighth Amendment of the U.S. Constitution.

Before filing a grievance, you‘ll need to put the request on paper and get a denial of the request on paper. For a strong case, you have to prove that the decision to deny medication was based on the high cost. The prison may respond to your grievance by saying you are being treated already because medical staff are monitoring your condition with blood tests. This is still deliberate indifference, because with hep C, there‘s only one way to treat it.

It can be very hard to find a lawyer when you‘re in prison. The American Civil Liberties Union (ACLU) has an office in every state and Puerto Rico, and you can write to the ACLU office closest to your facility. If they can‘t represent you, ask them to recommend a lawyer. If you‘re in a state with a class action lawsuit, you may want to write to the attorneys on that case to ask if they’ll consider representing you or referring you to another lawyer, especially if you are very sick with advanced cirrhosis. If there is no class action lawsuit in your state yet, you can reach out to lawyers in other states who have filed class action suits. They might be willing to send you the paperwork they filed in those cases, which can help lawyers in your state pursue a class action.

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