Getting Treatment for Hepatitis C

by Suzy Subways

From PHN Issue 30, Fall 2016

Hepatitis C attacks the liver and can be deadly, but new medications can cure it in almost all cases. Hep C is common in prison. But most prisons don’t even test people to find out if they have the disease, let alone provide medication to cure it. Drug companies have been allowed to set an extremely high price for the new drugs (also called “the cure”), because we live under a free-market economic system. Prisons are not willing to pay up.

What the new meds are:

These are some of the most highly recommended new drugs:

  • Harvoni (ledipasvir-sofosbuvir)
  • Epclusa (sofosbuvir-velpatasvir)
  • Viekira Pak (dasabuvir, ombitasvir, paritaprevir, and ritonavir)
  • Zepatier (elbasvir/grazoprevir)

These are also highly recommended new drugs, but none of them should be taken by itself—they are used in combinations:

  • Daklinza (daclatasvir)
  • Sovaldi (sofosbuvir)
  • Olysio (simeprevir)
  • Technivie (paritaprevir/ritonavir and ombitasvir)

Even newer medications will be available soon. Prison Health News will keep you informed. You can also write to HCV Advocate or Hepatitis Education Project and ask for info on hep C treatment. See pages 14 & 15 for their addresses.

How the new meds are used:

Here are some things healthcare providers think about when deciding what to prescribe:

  • What genotype of hep C you have
  • Whether or not you’ve taken hep C medication before
  • Whether or not you have cirrhosis (severe liver damage)
  • Other conditions you may have, like kidney disease
  • Other medications you are taking, especially certain HIV meds

The new drug Epclusa cures all genotypes of hep C. Some drugs work well against hep C in people with cirrhosis, while others do not.

Drug regimens with interferon are not recommended by medical experts anymore, because they are not as effective as the new regimens (“the cure”). Interferon has high rates of serious side effects like anemia and depression. The old drug ribavirin may still be used, but only in combination with new drugs.

In 25-30% of people who become infected with hep C, they are able to spontaneously clear the infection without medication. This spontaneous “cure” would happen within the first 6 months of someone becoming infected. If it does happen, very little or no damage is done to the liver, and no medications are needed. When tested with the screening test (antibody), these people will always be positive, but when a confirmatory viral load test is done, it will be negative. It is important for anyone who has tested antibody positive in the past to ask their medical provider to run a confirmatory viral load test.

Protecting your liver health:

If you have chronic hep C, here are some other ways to stay as healthy as you can:

  • Avoid alcohol, because it can damage your liver
  • Make sure you are monitored regularly by an experienced healthcare provider
  • Check with a health professional before taking any medications or nutritional supplements that are prescribed to you or from commissary
  • Drink plenty of water
  • Eat more low-fat foods
  • Exercise
  • Get vaccinated for hepatitis A and B
  • Avoid cigarettes and recreational drugs, including other people’s meds

Your legal right to hep C treatment:

In prison, a person must have enough time left on their sentence to complete the treatment. The new meds usually take 8 to 24 weeks. So a full year is no longer needed for treatment.

Some states have rules that say people in prison can only get treatment for hep C if they are close to dying of it. But all people in prison have a constitutional right to health care.

Case law, also called legal precedent, is made up of decisions judges have made on lawsuits in the past that are used to decide cases now. Attorney Bret Grote of the Abolitionist Law Center says, “There’s a lot of authority in the case law that standard of care in prisons is supposed to be consistent with the standard of care in the community.” This means people in prison should be getting the same medical care as people outside.

The standard of care guidelines for hepatitis C are set by the American Association for the Study for Liver Diseases (AASLD) and the Infectious Diseases Society of America (IDSA). In October 2015, these organizations updated the guidelines. They now say everyone with chronic hep C should be cured, even those with mild liver disease. (Chronic hep C means the virus has been detectable for at least six months.)

The only people the guidelines don’t recommend the cure for are those who have a short life expectancy for reasons not related to hep C.

Grote says that some legal precedents mean that for prisons, the cost of medications can be a factor in the decision to deny treatment. But it can’t be the only factor. And there is no clear way to draw a line between those who urgently need treatment and those who don’t. Hep C is complex, and it doesn’t progress in a predictable way. It’s also hard to know whether hep C is causing other health conditions or not.

In a lawsuit Grote is working on to get the hep C cure for political prisoner Mumia Abu-Jamal, the Pennsylvania Department of Corrections (DOC) responded that it doesn’t have the money to treat everyone. “If the DOC doesn’t have the money to properly treat people with hepatitis C, it should release them,” Grote says.

On August 31, a federal judge in that case ruled that the way the DOC decides who gets hep C treatment violates the U.S. Constitution. “This is the first legal decision by a court in the United States establishing that prisoners with chronic hep C have a right to the cure,” Grote says. The ruling should influence judges in other states and the federal system. (The case is Abu-Jamal v. Kerestes 3:15-CV-00967 in U.S. District Court, Middle District of PA.)

Class action lawsuits:

Lawyers in Pennsylvania (PA Institutional Law Project), Massachusetts (Prisoners’ Legal Services and National Lawyers Guild), Minnesota (International Humanitarian Law Institute), and Illinois have filed class action lawsuits. They argue that denying the hep C cure in prison because of the cost is deliberate indifference to a medical need, which is cruel and unusual punishment and therefore violates the Eighth Amendment of the Constitution. Lawyers and activists in Tennessee (ACLU-TN, Disability Rights Tennessee, and No Exceptions Prison Collective) have filed a similar lawsuit seeking class action status.

A class action lawsuit affects everyone in the “class,” whether or not you are named in the lawsuit. So if these lawsuits win, everyone in prison with hep C in those states could be eligible to receive treatment in the future. Grote explains, “If the class action is successful, people can expect that the DOC will be forced to treat more people. But how many people, and how fast?”

Even if you are in a state with a class action lawsuit, you may want to advocate for yourself to get the cure if you are sick. It could be years before the class action is resolved, after the judge has made a decision and the DOC appeals.

Advocating for yourself:

Before going into court, you’ll need to exhaust all administrative remedies, Grote says. You may need help from medical staff to find out what your hep C viral load and fibrosis level are. Ask about your platelet count and whether there has been anything abnormal in your blood tests.

If you have loved ones outside who can call the medical staff and ask them to cure your hep C, that might help. You may need to sign a release form to let your loved one have your medical information.

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. 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.”

Proper procedures can be different at every facility. It’s important to meet all deadlines and comply with all rules, so they consider the grievance on merits. You may be required to name the people involved. Sometimes you don’t know who the defendants are until you have a lawsuit in the discovery phase. In some places, you must request money damages in the initial grievance if you might be asking for them in a lawsuit later. It can depend on how the judge reads the law.

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, Grote says. Simply monitoring the progression of hep C is a less effective means of addressing it than providing the cure.

“In prison, proving cruel and unusual punishment requires a higher standard than medical neglect,” Grote says. “The prison often says, ‘The plaintiff wants x treatment, but we gave him y treatment.’ But with hep C, there’s only one way to treat it. Other case law says providing treatment known to be less effective still exposes the person to unacceptable risk of injury. The key is to establish that the defendants were aware of risk to health and didn’t take reasonable measures to stop that.”

Finding a lawyer:

It can be very hard to find a lawyer when you’re in prison. It can help to ask jailhouse lawyers or old timers at your facility who to contact on the outside. Grote recommends asking around for a criminal defense attorney with a good reputation, or a lawyer who’s not afraid to go against the DOC. If a lawyer says they’re not available, ask if they can refer you to another lawyer. “Attorneys are more likely to return calls referred from other attorneys they trust,” Grote says.

The American Civil Liberties Union (ACLU) has an office in every state and Puerto Rico. It’s best if you write to the ACLU office closest to your facility. If they can’t represent you, ask them for the addresses of civil rights lawyers, attorneys who do prison litigation, and activist legal projects near you.  

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. If you are very sick with advanced cirrhosis, ask the class action attorneys to consider seeking an injunction to get you treatment.

If there is no class action lawsuit in your state yet, Grote advises people to try to get one started. “People should reach out to lawyers in other states who have filed class action suits or those on the outside who can obtain filings from those lawsuits. Get the complaints, get the briefings, and present them to attorneys in your state,” he says. “Lawyers will be more likely to be persuaded if they have these materials.”

If you can’t find a lawyer:

It’s important to try to find an attorney, Grote says. “If a pro se litigant goes into court against the state, and the state calls its doctors and medical witnesses, it’s unlikely the litigant will get far, unless they have a lot of data on their health and understanding of hepatitis C.” An experienced lawyer can find doctors to serve as expert witnesses for you.

If you can’t find an attorney, representing yourself (pro se) can be a good idea. It can even build the case law, setting good precedent, and help others.

It’s important to stay informed about the progress of cases like yours. One good way is to subscribe to Prison Legal News (see page 15).

Grote believes that it’s only a matter of time before people in prison will get the cure for hep C. “We need to put up a more aggressive fight to make sure it happens more quickly,” he says. “Incarcerated people have a right to the cure for hepatitis C, and they should seek to enforce that right.”

Hepatitis C Legal Resources:

For the address of the ACLU office near you, ask a librarian, counselor, or loved one on the outside.

If you’re in Massachusetts, or to ask for a copy of the class action complaint, write to:

National Lawyers’ Guild, Massachusetts Chapter

14 Beacon St., Suite 407

Boston, MA 02108

ONLY if you’re in Pennsylvania, for info and referrals, write to:

Abolitionist Law Center

P.O. Box 8654

Pittsburgh, PA 15221

ONLY if you’re incarcerated in Tennessee AND have hep C or another disability, for info and referrals, write to:

Disability Rights Tennessee, Attn: Intake Unit

2 International Plaza, Suite 825

Nashville, TN 37217

For copies of the class action complaints, you may be able to find them using the law library or if a loved one outside can print and mail them to you:

Or, for the PA class action complaint, write to:

PA Institutional Law Project

718 Arch St #304S

Philadelphia, PA 19106

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