When Gilead decided this week to curtail access to lifesaving Hepatitis C drugs through its Support Path program, those living with the disease – and itching for a cure – had mixed reactions.
“I’m so glad I live in New Zealand and don’t have to go through all the bullshit some of you do!” said the member of one patient community.
“Insurance companies need to be covering these drugs,” said another. “Gilead is offering the patient assistant program on its dime. There is no obligation on it to maintain this program. We need to push insurers to start covering the treatments. We pay for insurance for a reason.”
In an interview with HCV Advocate, Priti Radhakrishnan of I-MAK (Initiative for Medicines, Access & Knowledge) took issue with the latter statement.
“I disagree with that point of view very strongly,” she said. “I don’t think the Gilead price point is anywhere near what the market can bear.”
I-MAK’s work centers around how and why Gilead has received a patent on sofosbuvir. Some countries were able to jockey in such a way that they have not had to pay outrageous sums based on a patent, like insurers in the United States must. Radhakrishnan explains this process very clearly in this opinion piece she wrote for CNN.
“In many countries across the world, they don’t have an insurance system,” she explained during the interview Sunday evening with HCV Advocate daily. “We need to look for companies to set more equitable pricing. But even here in the U.S., I disagree with that statement. Even as insurance companies take on exorbitant and overpriced drugs, the more the system has to bear that cost. And the cost ultimately is passed along to the consumer.”
You can read Gilead’s letter about curtailing the Support Path program here. Gilead did not respond to a telephone call and e-mail this morning by HCV Advocate.
In explaining its decision, Gilead makes the case that insurers need to begin paying for these drugs. It says it no longer will help patients whose insurers make restrictions based on low fibrosis scores.
So, to answer the questions so many ask: Correct, you can’t get these drugs unless you’re sick enough. And now it’s going to be even harder.
And if you’ve got mental or substance abuse problems and your insurer denies you? Gilead no longer will help in those cases either.
Carrie Yohe Johnson is a person with Hepatitis C in State College, Penn. She can’t get the drugs because her fibrosis score is 0. But her viral load is high.
She got the disease from her mother. Yohe has two children, both HCV-negative. She didn’t know she had the disease when she had the first child; she had a very low viral load when she had the second.
But she’d like to have a third child. Even though only 5 to 6 percent of mothers pass along Hepatitis C during childbirth, it’s still a risk most don’t care to take.
I'm a healthy person. I've never done drugs. I haven't drank alcohol since discovering my illness (not that I really ever was a drinker). I live a healthy life,” Yohe explained. “I've had one partner my whole life (my husband). I have young children and I teach preschool. I constantly worry about accidentally infecting others or whether or not my liver and body will last. Or if this disease will begin to attack my kidneys and heart as it has shown to do…before my insurance finally gives the meds. I don't think it's fair that I have to wait for a cure.”
So what can people like Yohe do? Lobby their members of Congress.
“Citizens can advocate by saying that we want to see transparence in the cost of drug development, and to mandate disclosures,” Radhakrishnan said. “The patient system is really broken, and the companies are way too powerful in terms of reforming laws in their favor. Their needs to be more citizen participation in the process to safeguard patient rights.”
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