Sarah Jackson had quit abusing drugs and was sober for six months before finding out she has hepatitis C. The Fort Wayne, Indiana mom says she was newly focused on starting her career and on raising her six kids. The diagnosis came as a shock.
“That was weeks of not sleeping and just constant tears,” she says. “I had already put a lot of that behind me and had been moving forward with my life and this was just a major setback.”
To get rid of the infection, her doctor prescribed Harvoni, one of the newer hepatitis C drugs. But Jackson never started the treatment, because Medicaid wouldn’t pay for it.
“There's nowhere else to go,” says Jackson. “The doctor tried and now I have no other place to turn.”
More than 3 million people in United States are infected with hepatitis C, a virus that can destroy the liver and cause liver cancer. The number of cases is increasing, according to the CDC, and most new cases are attributed to injection drug abuse.
In the last few years, new medications have come on the market that can cure hepatitis C with a more than 90 percent success rate, but for some people on Medicaid, actually getting that cure can be difficult.
New hepatitis C medications are famously expensive. A full course of Harvoni costs almost $100,000. (Another popular hepatitis C drug Sovaldi, costs about $84,000.) Because of that, a lot of state Medicaid programs put restrictions on the medication. Indiana was one of them.
Currently, in many states, the drugs aren’t covered when the disease is in its early stages. They’re only allowed when you already have advanced liver damage, if you’ve gotten a liver transplant, or if you have HIV. Though symptoms can take years to become noticeable, chronic hepatitis C gradually attacks the liver.
This means people like Sarah Jackson have to wait and worry while things get worse. But in her case, there was another option: Take the issue to court.
Jackson’s doctor put her in touch with Gavin Rose, an attorney for the ACLU of Indiana. In late November, he filed a class action lawsuit with Jackson against the Indiana Family and Social Services Administration, which administers Medicaid payments, to try to get the restrictions lifted.
“If something is medically necessary, it’s medically necessary and must be covered by Medicaid,” says Rose. He argues that if a doctor says you need a drug, state and federal laws require Medicaid to pay for it.
And treating early would keep the virus from spreading to other people, and actually save money in the long run, Rose says. “We are talking about drugs that might prevent Medicaid from having to deal sometime in the future with treatment for liver cancer, with treatment for liver transplants,” he says.
The Family and Social Services Administration declined to comment for this story.
State Medicaid programs for their part are in a tight spot, according to Matt Salo, director of the National Association of Medicaid Directors. With the price of hepatitis C drugs, “it is just not feasible to provide it to everyone,” he says.
He says state Medicaid programs can negotiate with manufacturers to get lower prices on medications. But even if they could cut prices in half, Salo says treating everyone with hepatitis C would still cost too much.
“States have to make sure that we are going to prioritize and that those who need it the most get priority treatment,” says Salo. “That’s what you’re seeing.”
The Centers for Medicare and Medicaid Services recently advised state Medicaid programs that by denying coverage for hepatitis C drugs they are not in compliance with federal statutes.
Advocates on both sides of the fight over Medicaid reimbursement restrictions agree that the new drugs for hepatitis C are too expensive. But Gilead Sciences, the company that makes Harvoni and Solvadi is not likely to lower prices voluntarily. The company recorded over $12 billion in revenue last year thanks to sales of these drugs.
But outside forces could change things. A recent Senate investigation into Gilead brought negative attention to how the company set its prices. And a new drug from a rival pharmaceutical company is set to come to market next year, and there’s hope that the competition will bring prices down.
In the meantime, Sarah Jackson will wait for her lawsuit to get resolved. She says being involved in the lawsuit is an unpleasant reminder of the time she spent addicted to drugs. “This is weighing over me every day; I have to worry about it all the time,” she says.
But despite the anxiety, she’s willing to go through it in order to help others like her who need the treatment.