By Frankie Snow and Suzy Subways
From PHN Issue 46, Spring/Summer 2021
Getting access to hepatitis C testing and treatment continues to be an unfair fight for those in prison. About one-third of people living with hep C in the U.S. are incarcerated, but most states don’t offer testing in prison to let people know if they have the hep C virus. You may need to ask for a hep C test—and then ask again to make sure you get your test results. Most people who have hep C don’t know it, so testing is very important. Sometimes the symptoms don’t show up until a person’s liver is badly damaged, which may be many years after they got the virus. Prison health officials often don’t want to test for hep C because they might have to pay for treatment if the test comes back positive. Everyone who has chronic hep C, meaning they’ve had it for more than six months, must be given medication.
Before COVID-19 came along, hep C was the No. 1 killer out of all the infectious diseases. But drug companies are allowed to set whatever price they want to charge for the medications to cure it, because we live in a society that values profit over people. The cost of treatment and money-minded politicians have meant that many corrections departments across the U.S. have refused to pay for the treatment to save people’s lives. The medications, which cure almost all cases of hep C, are called direct-acting antivirals (DAAs). The cost of DAAs is different from state to state, ranging from $10,000 to $30,000, according to Mandy Altman of the National Hepatitis Corrections Network.
Epclusa (its generic name is sofosbuvir/ velpatasvir) and Mavyret (glecaprevir/pibrentasvir) are two different treatment regimens that can cure all the different types of hep C. Medical providers may prescribe one of these, or other drugs, based on what is best for your care.
Altman says that prison systems have a lot of ways they can make DAAs affordable. We need to pressure more states to do these things:
- Some state prisons are getting special discount prices offered by a national drug program called 340B.
- Other states have negotiated together for a “group” purchasing rate with drug companies.
- Some individual states have made agreements with drug companies directly.
- Louisiana and Washington have negotiated with drug companies for an unlimited supply of medication for a flat fee.
If we make sure everyone who has chronic hep C gets the medication to treat it, this will save lives—and this can also make hep C less common by taking it out of circulation.
How to Advocate for Hepatitis C Treatment
The COVID-19 pandemic has caused medical care in prisons to slow down, but it’s still very important to get testing and treatment for hep C. Many people with hep C in prison are taking steps to advocate for their health care and sharing the strategies that have worked.
The National Hepatitis Corrections Network recommends reaching out to health organizations like theirs to get more information about hep C symptoms, treatment, and prevention so you can learn how best to take care of yourself while waiting for treatment. It’s also important to learn your right to treatment and what policies already exist in your state. Since 2016, lawsuits filed by people in prison have won major victories in getting the hep C cure to more people inside. “State-run prisons systems are at the mercy of the state legislature when it comes to the healthcare budgets,” Altman says. “Patients who have a family member or friend who can do research for them on litigation and cases can be helpful, or patients can write to the NHCN [1621 South Jackson Street, Suite 201, Seattle, WA 98144] for more information and resources. We suggest that patients who are interested in litigation request information about hepatitis C litigation in their state from the local American Civil Liberties Union or from their law library.”
Before seeking out an attorney or joining a lawsuit in your state, it is important to have documented denials for treatment and to file a grievance once this occurs. Before filing a grievance, you’ll need to put the request on paper and get a denial of the request on paper. If they deny you the medication based on cost, the stage of severity your disease is in, or the amount of damage your liver has, this is deliberate indifference to a serious medical need, which is a violation of the 8th Amendment of the U.S. Constitution. 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 chronic hep C, there’s only one way to treat it—with direct-acting antivirals.
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 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. A class-action lawsuit is more powerful than an individual lawsuit, because any policy change ordered by a court applies to everyone in that state’s prison system.
Updates on Litigation for Hep C Treatment
It can help your case to include examples of court victories in other states. This is called a legal precedent. So it’s important to keep up on what’s going on in the courts.
First, the bad news. Courts do not care about medical neglect, and they make it hard to prove deliberate indifference. The U.S. Supreme Court is very conservative now, with three justices appointed by Donald Trump. In April, it decided that the Tennessee Department of Corrections is allowed to refuse hep C treatment to anyone who doesn’t have severe, irreversible liver scarring [see Atkins v. Parker, No. 19-6243 (6th Cir. 2020)]. This echoes a decision in Florida, where an appeals court ruled that refusing treatment to the majority of people with hep C counts as “minimally adequate medical care” under the 8th Amendment [see Hoffer v. Secretary, Florida Department of Corrections, 973 F.3d 1263 (11th Cir. 2020)]
But in other states, lawsuits have won and saved many lives. Here are some examples:
- In 2018 in Indiana, a federal court found “no medical reason to divide individuals by ‘priority’ or to ration the use of DAAs,” and that prison officials had acted with deliberate indifference [see Stafford v. Carter No. 1:17-cv-00289-JMS-MJD]
- In October 2020, Missouri settled a class-action lawsuit by agreeing to give the hep C cure to thousands of people in its prisons instead of just five people as it had before. The settlement also requires prison officials to educate incarcerated people about hep C and give them their test results and free access to their medical records [see Postawko v. Missouri DOC, No. 17-3029 (8th Cir. 2018)]
- In a class-action lawsuit settlement in October 2020, the Nevada Department of Corrections agreed to give the hep C cure to 2,400 people in prison by October 2023 [see 3:19-cv-00577-MMD-CLB]
- In Connecticut, a class-action lawsuit won a settlement that resulted in 475 people getting the hep C cure in prison as of January 2021, with more to come [see Barfield v. Cook 3:2018-cv-01198 (ctd)]
- The Maine Department of Corrections agreed to a settlement in which all people in prison with chronic hep C will be treated
- In March 2021, North Carolina settled a class-action lawsuit, agreeing to give the hep C cure to 2,100 people in its prisons over the next five years, starting after the COVID-19 pandemic shutdown ends [see Buffkin v. Hooks 1:18-cv-00502]
In addition to the 8th Amendment, the North Carolina lawsuit argued that the state’s policy of denying treatment until the disease progressed violated the Americans With Disabilities Act. The complaint stated, “DPS 4 discriminates against Plaintiffs and the Plaintiff Class in violation of the ADA by withholding medically necessary treatment that will likely cure their disability, while not withholding medically necessary treatment from individuals with different disabilities.” Other lawsuits by incarcerated people have used the ADA this way, with hepatitis C as the disability. An article by Greenwald et al published in Public Health Reports last year suggests that people in prison can also use the ADA with substance use disorder as the relevant disability, if the prison requires a period of sobriety before providing hep C treatment. “A categorical refusal to treat persons until they reach a minimum length of sobriety is an example of disparate treatment,” Greenwald et al write.
Showing deliberate indifference can be difficult, because defendants will argue that the hep C cure isn’t necessary for people who aren’t terribly ill already. But there are precedents for showing that officials knew about dangers to your health and still put you at risk for future harm. Denial of medication in early hep C can lead to liver damage that cannot be reversed and a lifelong risk of liver cancer. In Helling v. McKinney, 509 US 25 (1993), the Supreme Court ruled that unsafe conditions that pose a risk of injury in the future violate the 8th Amendment.
We at Prison Health News are not lawyers and cannot give legal advice, but we hope to offer food for thought.