Adam Rabb waited years for effective medication to battle hepatitis C. Washington state restrictions for some Medicaid patients almost barred him from getting it.
OLYMPIA — Adam Rabb holds the bottle of Harvoni pills in his hands, and it feels like a fistful of gold.
Except gold might have been easier for him to get.
Rabb, diagnosed with hepatitis C in 2010, needed a court order to get these pills. With one move from a federal judge, the 47-year-old Lakewood, Pierce County, resident is one of the first of potentially thousands of Washingtonians on Medicaid whose lives could improve with access to the so-called blockbuster drug.
A 12-week treatment of Harvoni has a 90 percent success rate for curing the blood-borne disease known for how it can scar the liver. It also carries a market price as high as $94,500 for a course of treatment.
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As new drugs came on the market, Washington joined other states in restricting their use to only the sickest Medicaid patients. In early 2015, the Washington Health Care Authority (HCA) approved guidelines restricting access to hepatitis C drugs like Harvoni. It’s a move many states made out of concern over costs.
HCA approved a policy allowing Medicaid patients only with more advanced scarring of their livers to get treatments like Harvoni.
Based on that, the agency in 2015 denied Rabb’s request for treatment. He said he was surprised to learn he was one of the few patients who tried to appeal the decision.
“I kept thinking about people who are older, don’t have life skills,” Rabb said. “That fired me up, really.”
So Rabb became one of the lead plaintiffs in a class-action lawsuit filed in February against HCA, which administers the state’s Medicaid program.
A federal judge in late May ruled the agency’s policy was inconsistent with state and federal Medicaid requirements that treatments be given based on medical need.
It’s a ruling that could greatly expand access to the 28,000 Washington Medicaid patients with hepatitis C. And the ruling could have a ripple effect.
The case marks the first time a federal judge has sided with advocates in saying that such restrictions are inappropriate under federal law, according to Kevin Costello, co-counsel on the class-action lawsuit.
Rabb’s case could be a precursor to another in Washington state. Members of the state’s public-employee benefits group have also brought a lawsuit against HCA over restrictions on hepatitis C medications. That case is being heard in King County Superior Court.
HCA is complying with the judge’s decision, according to agency spokeswoman Amy Blondin. In an email, Blondin wrote that the state doesn’t yet have a finalized estimate for what it will cost to provide the treatments.
Without the restrictions, HCA expects to treat about 350 additional patients a month, according to Blondin, for a total of 500 per month.
Rabb attributes years of battling the disease and what he describes as its secondary effects as having taken a toll on his life. He hopes Harvoni can cure him and help restore his career as a tattoo artist.
“There’s days he can’t get out of the bed, do dishes, can’t use his hands, has to use a cane to get out of his car,” said Liz Farrell, Rabb’s fiancée.
“Waiting and waiting”
Ever since he was old enough to pick up a pencil, Rabb wanted to be an artist. Growing up in Marin County, Calif., he migrated to the South and became a tattoo artist in places such as Louisiana and Florida.
In Panama City, Fla., he tattooed the spring-break crowd, the young ones who stroll in, look at a stock wall display and pick out a design. It was good money, if not creatively exciting.
All those years, it never occurred to Rabb that when he would mistakenly poke himself with a tattoo needle, he could be putting himself at risk for hepatitis C.
Rabb yearned to do more challenging work, custom tattoo art, and he missed the big trees of the Pacific Northwest. So he moved out to Western Washington and found work in Tacoma and Lakewood tattoo shops.
Rabb helped Doug Stern, a younger tattoo artist, learn how to properly pack color into skin and fade colors from dark to light.
“He’s got really clean work, when he was here he never screwed anybody over,” said Stern, 41, and co-owner of Ink Spot Tattoos in Lakewood.
But then Rabb says he began feeling sick. He was fatigued, had some trouble remembering things, and just wasn’t as into his work. The memory problems hurt — working with a needle gun, Rabb had to have a precise sense of what parts to ink, and when to ink them.
Along with some back problems, “I ended up losing my career because I couldn’t keep up,” he said.
Before the past couple of years, hepatitis C drugs weren’t as effective. Considered by some as akin to low-grade chemo, they came with side effects as serious as aggravating mental illnesses and giving trouble with blood counts.
Because of issues like that, Rabb’s doctor recommended against his using those treatments.
“I’ve been waiting and waiting for new treatment to come out,” he said.
So when a doctor pre-authorized him for Harvoni — which the federal government approved in October 2014 — Rabb was eager to sign up.
But in June 2015, HCA denied authorization, according to court documents. Rabb’s liver wasn’t sufficiently scarred.
He appealed, but an administrative-law judge upheld HCA’s decision after a September hearing.
Instead of Harvoni, the “plan was to just monitor my liver,” he said.
In late May, U.S. District Court Judge John Coughenour granted the preliminary injunction stopping the HCA’s policy of restricting the drugs.
Within weeks, Harvoni had been mailed to Rabb’s house.
“For it to happen that fast was just bizarre,” he said.
With the treatment under way, Rabb says he’s starting to feel a little better, more creative again. Farrell says she hopes they can get him back to work, at least part-time.
But Rabb worries about hepatitis C patients who haven’t heard about the court injunction and may not know they can now get medicine.
“It’s still not over,” he said. “There’s still people that aren’t being treated.”