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For Some Vermonters Suffering From Hepatitis C, Life-Saving Cure Is Out Of Reach

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In 2014, a treatment for Hepatitis C was announce offering hope to those suffering from the disease. But the drug is costly, and in Vermont Medicaid policy sets a high bar for patients looking to get access to the treatment.

Health advocates are challenging a Vermont Medicaid policy that has restricted curative treatment for hepatitis C only to patients with advanced liver problems. And while state officials say they’re open to changing the policy, they say offering treatment to all low-income Vermonters could cost taxpayers as much as $25 million over two years.

It’s been about two years since medical science delivered a cure for hepatitis C. The breakthrough has been a true lifesaver for patients who would have gone on to suffer severe liver disease, cancer, or other conditions caused by the virus.

But not everyone infected by hepatitis C has been lucky enough to get the expensive treatment. And patients like the one interviewed for this story have been left in a sort of medical limbo.

“I have grandchildren. I want to be around for my grandchildren. I don’t know. I don’t want it to be the disease that kills me,” says the patient.

We’re going to refer to this Medicaid beneficiary only as "the Patient"; she doesn’t want the world to know about her medical status. The Patient does want people to know her story.

“I have grandchildren. I want to be around for my grandchildren,” the Patient says. “I don’t know. I don’t want it to be the disease that kills me.”

The disease the Patient is referring to is hepatitis C, a virus that infects an estimated 8,000 people in Vermont alone. The Patient – she’s 50, and she lives in a campground in Newfane – discovered she’d contracted the virus after some blood tests in 2010.

“I was like, ‘wow.’ I was thinking about what I did in the past. Was it something I did, do you know what I mean? Did I catch it from somebody? I wasn’t sure how I got it,” she says.

So it was with considerable excitement that the Patient learned of news of a hepatitis C cure – a drug that would purge her body of the virus that might otherwise inflict potentially deadly scarring on her liver.

"I have grandchildren. I want to be around for my grandchildren. I don't know. I don't want it to be the disease that kills me." — The Patient

That excitement was soon tempered by reality. The Patient, in the eyes of Vermont’s Medicaid program at least, isn’t sick enough yet to qualify for treatment.

“It makes me mad, because I’ve been fighting since April,” she says.

That fight has come in the form of an appeal of the state’s decision to deny her the medication. Vermont Legal Aid, a nonprofit law firm represents low-income clients, has taken up her cause.

Julia Shaw is the health care policy analyst in the Office of the Health Care Advocate, which is administered by Vermont Legal Aid. Shaw says the policy is tragically misguided.

“Because hepatitis C is such a serious illness and because our Medicaid program is systematically denying a large portion of the population access to a curative treatment for something so serious,” Shaw says.

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Julia Shaw is the health care policy analyst in the Office of the Health Care Advocate. Shaw is among the advocates working to change a Vermont Medicaid policy that is preventing potentially hundreds of hepatitis C patients from getting curative treatments.

Here’s the issue for the potentially hundreds of Medicaid beneficiaries like the Patient in this story: Doctors assess liver damage using what’s known as a Metavir fibrosis score. It basically measures the amount of scarring on the liver. And under Vermont Medicaid’s prior-authorization policy, beneficiaries don’t get the cure until they have a score of F3 or higher, which, according to Shaw, “basically requires a patient with Hepatitis C to have significant liver damage before they’re able to be treated.”

Shaw isn’t alone in this assessment. The American Association of for the Study of Liver Diseases and the Infectious Disease Society of America have both recommended curative treatment for nearly all hepatitis C infected patients.

Dr. Raymond Chung is a hepatologist at Massachusetts General Hospital, where he directs the hepatology division and the liver center. He’s also a chairman on the guidance panel at the American Association of Liver Diseases. Chung says it isn’t only liver damage that hepatitis C patients need to worry about.

“There is evidence that hepatitis C can contribute to the risk of kidney disease, as well as the development of diabetes,” Chung says.

"Denying patients access to something with such clear benefits is immoral, it's illegal, and it shouldn't be happening." — Julia Shaw, health care policy analyst in the Office of the Health Care Advocate

And Chung says leaving hepatitis C to linger in the body, for any period of time, allows the inflammation and scarring caused by the virus to inflict potentially irreversible liver damage.

“And that is the enemy, perhaps the relentless progression of that scar tissue that ultimately chokes off blood flow into the liver, and starts limiting the ability of the liver to regenerate itself properly,” Chung says.

With the abundance of medical evidence pointing to the benefits of early treatment, Shaw says the Vermont Medicaid policy is indefensible.

“Denying patients access to something with such clear benefits is immoral, it’s illegal, and it shouldn’t be happening,” Shaw says.

The man in charge of Vermont’s Medicaid program doesn’t entirely disagree.

The Vermont Medicaid program is one of only 16 states now that requires patients to advance to such a late stage of liver damage before signing off on treatment. Steven Costantino, the commissioner of the department that oversees Medicaid, wasn’t this position when the policy came into being. But he remembers when the hepatitis C drugs came on the market.

“It’s an expensive treatment, so with the excitement there was also, ‘oh my God, this is going to cost a lot of money.’” Costantino says. “It put a lot of medical directors across the country in an ethical dilemma.”

How much is too much to treat vulnerable populations with potentially life-saving medicine?

By reserving treatment only to patients with more severe liver damage, Costantino says states were able to direct limited resources to where they were needed most. Vermont Medicaid, for instance, has spent about $22 million since the beginning of 2015 to treat 220 patients. Costs for treatment can hit $150,000 per individual.

“And that’s the moral dilemma or the ethical dilemma that we’re all in,” Costantino says.

The dilemma is an excruciating one: How much is too much to treat vulnerable populations with potentially life-saving medicine?

Costantino says there are broader societal benefits of treatment – people cured of the diseases, for instance, can’t pass it on to others. And he says now that the state has treated most of the Medicaid beneficiaries with scores of F3 or higher, it’s probably time to change policy, and open up treatment for everyone.

“I truly believe morally it’s the right thing to do,” Costantino says. “I think if you have hepatitis C, you really should have the opportunity to be cured of hepatitis C.”

That doesn’t mean a policy change is necessarily in the offing. Costantino’s department estimates new costs of as much as $25 million over two years if the state does change the policy. And he says it’ll ultimately be an executive decision – made by the incoming administration of Governor-elect Phil Scott – as to whether or not patients like the one in this story will gain access to treatment.

"I truly believe morally it's the right thing to do. I think if you have hepatitis C, you really should have the opportunity to be cured of hepatitis C." — Steven Costantino, the commissioner of the Department of Vermont Health Access

Vermont Legal Aid is also trying to get the state to change other elements of its hepatitis C treatment policy. Existing policy requires patients to see a specialist, a requirement Shaw says creates a too-high hurdle for patients in rural areas of the state.

The state also requires patients to remain drug- and alcohol-free for six months before they begin treatment.

Shaw says people using drugs or alcohol are statistically as likely to benefit from the treatment as people who abstain. And she says the requirement might allow the virus to remain in populations at highest risk of passing it on to others.

The Vermont Drug Utilization Review Board is meeting next week to consider changes to hepatitis C treatment guidelines. Costantino says he’ll consider its recommendations, and then consult with people ultimately in charge of making the call.

“I don’t know the opinion of the incoming administration on this issue yet,” Costantino says. “Hopefully I will bring it to their attention.”

The state’s Drug Utilization Review Board is meeting next week to consider a rule change.

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