The state of Illinois has backed off a 2-year-old policy that allowed only its sickest residents with hepatitis C who rely on the traditional Medicaid program to get disease-curing drugs.
The policy change, announced Friday evening, means Illinois residents on Medicaid with stage 3 liver scarring — not just the sickest patients with stage 4 liver scarring — will be able to access the drugs. If left untreated, hepatitis C can lead to liver failure, cancer and even death.
At least 12,000 Illinoisans covered by Medicaid had been diagnosed with hepatitis C as of last year, according to the state.
The disease is transmitted primarily through blood contact, meaning drug users who share needles are at risk, as are those who get tattoos in nonsterile conditions and anyone who got a blood transfusion before 1992, when screening of the blood supply began.
A number of other states already relaxed their rules in response to pressure from the federal government, lawsuits and the declining cost of some of the medications.
The announcement followed questions posed to the state by the Chicago Tribune about its policy restrictions, which patient advocates and lawmakers had asked the state to loosen.
John Hoffman, a spokesman for the Illinois Department of Healthcare and Family Services, said in an Aug. 31 email to the Tribune that the state’s policies “were designed to provide care within the state’s fiscal restraints for those facing the most need.”
In a subsequent email two days later, Hoffman wrote, “While there are no specific proposed changes formally under consideration after the 2014 policy implementation, as circumstances evolve we continually work with medical professionals on the most effective approaches.”
The department said in its news release Friday that the changes followed a “thorough review of policy.”
Friday’s policy change prompted cheering by some advocates for those living with the disease, but they said it doesn’t go far enough.
“I think it’s a step in the right direction,” said Dr. Andrew Aronsohn, a hepatologist at the University of Chicago Medical Center. “It still doesn’t offer access to everybody that has hepatitis C. I still think that everyone that has chronic hepatitis C … should have access to treatment because of all the benefits.”
Doctors often don’t request the drugs for Medicaid patients in the early stages because they know they’ll be turned away, Aronsohn said.
Hoffman said he could not provide specifics Friday evening about how many more people might be helped or when the new policy would take effect.
Medications that started coming on the market several years ago cure the vast majority of those with hepatitis C, and without the debilitating side effects of earlier drugs. But many state Medicaid programs, including Illinois’, limited who could get the drugs in response to their price tags: as much as $94,500 for one 12-week treatment regimen.
Increased competition among pharmaceutical companies has helped give states better negotiating power to lower costs. Medicaid is funded by state and federal dollars.
Last year, 623 people in traditional Medicaid were denied hepatitis C drugs, while 228 were granted access to the medication, according to the state.
The state said 753 people in Illinois’ Medicaid managed care programs got the drugs last year, but it doesn’t keep data on how many denials were issued to people in those programs. In Medicaid managed care, private insurers administer Medicaid benefits — in contrast to traditional Medicaid, for which the state administers benefits. Different insurers in the Medicaid managed care program have different rules on who can get the medications. About two-thirds of the 3.2 million people on Medicaid in Illinois are in managed care programs.
Jill Wolf, hepatitis C program director of the Caring Ambassadors Program, a patient advocacy nonprofit, said she’d like to see the state go even further. Some states have broadened access to all hepatitis C patients regardless of what stage they are in.
In 2015, the federal Centers for Medicare and Medicaid Services issued guidance to all states saying it was concerned that some states were breaking federal law by restricting access to the drugs.
Earlier this summer, a judge in Washington granted a preliminary injunction forcing the state to change its policy pending the outcome of a lawsuit there. Massachusetts, Delaware and Florida are also among the states that have recently expanded or announced plans to broaden access to the drugs. Indiana faces a lawsuit filed by the American Civil Liberties Union of Indiana over the issue, and settlement talks in that case are underway.
But Matt Salo, executive director of the National Association of Medicaid Directors, said access to the drugs is not just a state Medicaid problem.
“There’s a lot of blame to go around,” Salo said. “The manufacturers priced this too high, but I also think there’s been a total and utter lack of leadership at the federal level to say, ‘What should we as a people and a nation be doing about this?'”
Andy Slavitt, acting administrator for the federal Centers for Medicare and Medicaid Services, in June called on drugmakers and pharmacy benefit managers to make the drugs more affordable to state Medicaid programs.
Meanwhile, Gilead Sciences, which sells some of the drugs, continues to defend its prices, saying the medications still cost considerably less than the lifetime price of otherwise treating hepatitis C. Gilead believes the medications’ prices “reflect the innovation of the medicines and the value they bring to patients,” Mark Snyder, a Gilead spokesman, said in an email.
Gilead continues to work with Illinois Medicaid to offer rebates “above and beyond those mandated by law,” Snyder said. Illinois, for example, gets more than half off the $94,500 wholesale cost of one 12-week regimen of hepatitis C drug Harvoni, he said.
State Rep. Michael McAuliffe, R-Chicago, was elated to hear of the new policy Friday. McAuliffe is chairman of the state’s task force on hepatitis C, which he created after losing his father-in-law, brother-in-law and uncle to complications of hepatitis C. The task force had been pushing for changes to the policy.
“I think it’s going to save a lot of lives,” McAuliffe said.
Larry Holmes, of Chicago, who is in an early stage of the condition and is on Medicaid, said he’s happy to hear of the policy change, even though it won’t give him access to the medications.
“It can’t help me, but somebody can get help,” said Holmes, 62.
He continues to worry about his own future. He’s concerned about how sick he’ll have to get before the state will cover the medication for him.
“Anytime you’re sick and you can’t get the medicine, that’s a problem,” Holmes said.
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