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It took years for Dara Dundon to realize that something was off with her health.
She felt lethargic, almost like she was getting the flu. But it wasn’t until she had hip replacement surgery in 2005 that a doctor discovered the cause: hepatitis C.
Untreated, hepatitis C can lead to liver disease, which is often deadly. So Dundon asked her doctor about a new drug, Harvoni, with cure rates above 90 percent in three months or less of treatment.
The only problem: She wasn't considered sick enough to be eligible for the breakthrough medication.
This fall she applied to get treatment for the fourth time. The response each time has been the same. She says her Medicaid provider couldn’t pay for the drug — which can cost nearly $100,000 for the full treatment — until her condition got worse.
Dundon’s story isn’t unusual. An estimated 3 million Americans have hepatitis C, a blood-borne illness that is often spread through dirty needles, though many patients, including Dundon, have no history of intravenous drug use. Hospital care and other medical procedures have also led to outbreaks; in Dundon’s case, she says the infection was traced back to a tattoo she got years ago.
Most of those that are infected don’t know it. When they do find out, it’s becoming harder to get treatment, particularly for low-income patients like Dundon who are covered by state-funded Medicaid, which turns to taxpayers and cash-strapped reserves to foot the bill.
New research from the University of Pennsylvania’s Perelman School of Medicine found both private and state-run providers frequently reject hepatitis C patients who aren’t deemed sick enough. Common reasons given for denial are insufficient information to assess medical need, lack of medical necessity and failure to pass an alcohol or drug screening.
Doctors like Jay Kostman, who treats Dundon, say states across the country have quietly thrown up roadblocks that delay or make it more difficult to get the treatment they need. Most states have added restrictions that delay or make it difficult for hep C Medicaid patients to get the drugs: 31 states require patients to reach advanced levels of fibrosis in order to qualify for treatment.
Hepatitis C often leads to cirrhosis, liver failure and liver cancer; it’s the leading cause of liver transplant in the United States. Dundon has so far avoided those conditions, which, to her insurance company, meant she still was not a good candidate for treatment, compared with patients with a more advanced form of liver fibrosis.
Kostman, whose patients at the John Bell Health Center are mostly low-income Medicaid recipients, says this system is discriminatory.
“Do we withhold cardiac surgery for people because they have high cholesterol, because they’re overweight? No, we don’t do that,” he said. “And we shouldn’t withhold … lifesaving therapies for people who have another underlying condition.”
But for Medicaid programs, it’s a matter of pragmatism. The rising cost of miracle drugs has forced public insurance providers to make some tough decisions.
“If we were to simply open up the doors and say yes, everyone gets it, we would be spending as much on that one drug as we would on every other single drug in the program combined,” said Matt Salo, executive director of the National Association of Medicaid Directors.
Medicaid covers 70 million Americans “under very, very constrained budgetary parameters,” Salo said.
Paying for so many patients with hepatitis C would bankrupt the system, he said. But the system doesn’t deserve all the blame, he says: Though pharmaceutical companies are required by law to negotiate with Medicaid programs, the maker of the breakthrough hep C treatment resisted giving the states much of a deal, Salo said.
Gilead, which makes two of the new breakthrough hep C drugs, denied a request for an interview from America Tonight. But the company responded by email, defending the price and their innovative treatments, saying that the one-time cost of Harvoni or Sovaldi pales in comparison with the lifetime costs associated with treating hepatitis C.
But with drug costs already as much as 15 percent of state Medicaid budgets, and more miracle drugs being invented, analysts say hep C drugs could be the next major test of how far America’s health care budget can be stretched.
“[Insurance companies] want you to get discouraged and just give up,” she said.
But she didn’t give up. After more than a year of applications and four denial letters, she tried again. This time, she was finally approved to get the hepatitis C treatment she says she desperately needs.
“I’m worth having this drug. My life is worth saving,” Dundon said. “Even if it’s $100,000.”