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Wanda Bamberg Tia is clearly in good shape.
The 62-year-old dance instructor and fitness coach is obsessive about her health, eating carefully, drinking in moderation and staying away from drugs or smoking. Her kitchen cabinets are loaded with vitamin supplements, health drinks and herbal remedies.
So she was stunned when in early 2017 she was diagnosed with hepatitis C — and probably had been infected for decades.
“I had been feeling a little tired and stressed, but that was not what I expected,” Tia said.
And she was even more distressed to learn that, while there are more than a half-dozen drugs that cure hepatitis, getting health insurance to pay for them can be a challenge.
Hepatitis treatment pits patients against insurance companies and lawmakers against drugmakers. States, which cover a huge number of hepatitis sufferers like Tia, are stuck with some of the biggest bills.
“There are probably a million people who have hepatitis C in the Medicaid world,” said Matt Salo, director of the National Association of Medicaid Directors. “When it costs $64,000 to cure hepatitis C, that’s a great deal. Multiply that by a million people? That’s what made people freak out.”
Tia, covered by Washington, D.C.’s relatively generous Medicaid program, is in the middle of that big budget freak-out. Fighting for her cure has been a months-long battle.
Cure at a gigantic price
As a baby boomer, Tia was at risk. The Centers for Disease Control and Prevention recommends that everyone born between 1945 and 1965 get tested for the virus, which can be spread by poorly sterilized medical and dental tools, needles, blood products, tattoos, shared razors and, rarely, through sex.
Half of the 3.5 million people who have hepatitis C don’t even know they have it, the American Association for the Study of Liver Diseases estimates.
The virus causes cirrhosis and liver cancer. Hepatitis C once was incurable and it killed or contributed to the deaths of more than 19,000 people in 2015, the CDC says. Antivirals helped, but not a whole lot.
Newly developed direct-acting antiviral drugs can cure up to 95 percent of patients. But the cure comes at a gigantic price. These drugs are notoriously expensive.
Gilead priced its first new hepatitis C drug, sofosbuvir, at $1,000 per pill, or $84,000 for a three-month course of treatment. Its first combination pill, Harvoni, cost $94,500.
But doctors, the CDC and other organizations said the price tag was worth it — and cheaper in the end than providing liver transplants and other treatments for people dying of cirrhosis or liver cancer.
While it sounds like a simple choice, Tia has found things are much more complicated in real life. Right away, the private insurance company that provides Tia’s Medicaid coverage balked at paying for the priciest drugs.
“We went for Harvoni,” Tia said. “They said no.”
Her physician, infectious disease specialist Dr. Jose Bordon of Providence Hospital in Washington, ran test after test and Tia’s Medicaid provider demanded proof about which strain of hepatitis C Tia was infected with.
“They ask for more tests and they ask for specific tests,” Bordon said.
At tens of thousands of dollars per patient, insurance providers want to make as sure as possible that each patient will be cured quickly.
“We asked for Zepatier next,” Tia said. Another no. Finally, Bordon and Tia’s provider settled on Epclusa, one of the newer of the new hepatitis C drugs.
Tia started taking Epclusa last year. She followed directions carefully.
“I had to stop drinking wine,” she said. “I had to go cold turkey — no wine for three months. That’s a long time.”
But even so, after a few weeks, it became clear it wasn’t working.
Tia wasn’t despondent, but she was disappointed and a little fearful.
More tests followed. Was it resistance? Had the virus in her body somehow evolved to defy the drug’s effects? Was it a supplement she took?
Often, patients don’t take hepatitis drugs as they should. Drug users may sell the valuable pills, or patients may forget a few doses, allowing the virus to mutate. Tia did not fall into either category.
Bordon now thinks it was likely one of the many “natural” supplements that Tia had been taking interfered with the drug’s action, making it less effective and allowing virus to survive in her body.
“Supplements can screw up hepatitis C treatments,” said Dr. Douglas Dieterich, director of the Institute of Liver Medicine at the Icahn School of Medicine at Mount Sinai in New York.
“They can cause drug toxicity. They can interfere with liver enzymes which can reduce the levels of the drugs. The most common one is St. John’s wort.” St. John’s wort is a plant that many people use to treat depression symptoms, but it’s metabolized in the liver in a way that can interfere with many pharmaceutical drugs.
Tia had no idea that herbal or “natural” supplements could do this.
“It was part of her normal life to take all these supplements,” Bordon said.
Barriers to treatment
Now, Tia would have to try a different hepatitis C drug. There are several on the market, but that was where she ran into policy wars. Many insurers are reluctant to pay for a second round of treatment.
“They don’t want to pay for it unless you fight,” Tia said.
Salo said there are some reasons for this reluctance, not the least the cost. If every Medicaid patient in a state showed up at once asking for treatment, “it would bust the budget,” he said.
Medicaid is a state-federal health insurance plan for people with low incomes and no other source of health insurance. Some states, such as New York and California, put a lot into their plans while others have smaller budgets.
“A lot of states put restrictions in place and said let’s try to prioritize the sickest first,” Salo said. “States were trying to buy themselves time to give time for the price to come down.”
The prices of the hepatitis C drugs are coming down as more companies develop their own versions and competition kicks in. AbbVie’s Mavyret is priced at $26,400 for a treatment round, a price that has pressured other companies to lower their prices.
“Now that there are multiple drugs on the market, prices have obviously been driven down,” Dieterich said. “The insurance companies have contracted with pharma and they have their preferred products,” he added.
But still, he said, insurance companies and state Medicaid programs often put up barriers if they can.
“There are always plans that are trying to get out of it…by having alcohol tests or marijuana tests. Even if you are smoking marijuana, they’ll exclude them,” Dieterich said.
Last October, the AIDS Institute, which also represents patients with hepatitis, said 31 states and Washington, D.C. decline to treat patients until they have moderate or worse liver damage.
Or they balk at treating patients, like Tia, whose first course of treatment fails.
People can be cured of hepatitis C but they are not immune from getting it again. Some states fear that people who had been infected through risky behavior, such as injecting drugs, might get re-infected, and they’d end up treating the same patients over and over.
That is a shortsighted policy, argued Alyson Harty, clinical nurse manager for Mt. Sinai’s liver institute.
“Even if a patient doesn’t need a transplant, the cost of cirrhosis care for a patient that’s in and out of the hospital over even a year is way more than the cost of treatment,” she said.
And the cure rate is high. “In my office, more than 93 percent of patients treated for hepatitis are cured,” Bordon said.
'We are going to beat this'
In Tia’s case, Bordon ran the requested tests. He filed an appeal with the insurance company providing Tia’s Medicaid coverage.
“This is crazy,” Tia said as she waited to hear if she would be covered. “I called back again and again. How can an insurance company say they’ll only cover one treatment in a patient’s lifetime?”
Because she had developed some cirrhosis, a board finally determined she was eligible to receive a second round of treatment. She was sick enough to qualify for Vosevi, a combination of three hepatitis C drugs that’s approved for cases like hers.
She started taking it in April and is feeling optimistic. “I am hoping my liver will regenerate,” she said.
Bordon said indications are that Tia’s will, and the medication is knocking down the virus, he said. She’ll be taking the pills for three months.
Two weeks in, Tia had good news. "The virus is almost undetectable," she said.
“I feel good,” she added. “I have a plan. We are going to beat this.”
Update: As of July 20, after six weeks of treatment, a blood test could not detect any hepatitis virus in Tia's blood.