Ky. leads nation in rate of hepatitis C infections but new drugs to treat the disease are so expensive they’re out of reach for most

Kentucky’s rate of hepatitis C infections is seven times the national average, but expensive new drugs to treat the disease remain largely out of reach for residents of the state, Andrew Joseph reports for Stat, a health publication of The Boston Globe.

“It’s very hard to see the patient and just tell them, ‘I can’t treat you’,” Dr. Fares Khater, an infectious-disease doctor in Whitesburg, told Joseph.

The story is an in-depth look at hepatitis C and access to treatment in Kentucky. “Over the past year, only 3 percent of the state’s Medicaid beneficiaries with the disease received treatment,” Joseph reports, primarily because the list price of some 12-week hepatitis C treatments can approach $100,000.

Joseph writes from Hazard: “The patients here ask about the treatment by name. They’ve seen the crisp, alluring ads on TV and heard the soothing spots on the radio: Harvoni, they know, could cure their hepatitis C. But in this town . . . Harvoni and other new hepatitis C drugs remain largely out of reach.”

Laura Combs, a Knott County nurse
practitioner, has diagnosed hepatitis
C in many recovering drug users.
(Stat photo by Sam Owens)

Joseph suggests that Kentucky could be a case study on the effects of hepatitis C and what happens when demand for specialists, surveillance and treatment exceeds the ability for the health system to handle. Kentucky’s high infection rate, No. 1 in the nation, is driven by intravenous drug abuse.

“In fiscal 2016, hepatitis C treatments — delivered to fewer than 900 of the 29,000 hepatitis C patients covered by Kentucky’s Medicaid program — ate up 5 percent of the program’s pharmacy budget,” Joseph writes. He quotes Doug Thoroughman, Kentucky’s acting state epidemiologist: “We don’t have the capability to deal with this because we don’t have the resources.”

Hepatitis C is a viral disease that attacks the liver, It can cause liver cancer, cirrhosis and scarring called fibrosis. It is the nation’s leading cause of liver transplants, and an estimated 19,000 people die from hepatitis C-related complications each year. Symptoms typically occur only after the liver is damaged, which can take years after getting the virus. As a result, an estimated 2.7 million to 3.9 million Americans are infected with hepatitis C and don’t know it.

Many who are infected are Medicaid recipients. Gov. Matt Bevin has asked the federal government to approve changes in Medicaid, including a rule that would require many beneficiaries to pay premiums. Advocates for underserved populations warn that even small fees would be too expensive for many to keep their insurance.

Most new hepatitis C cases are spread through the sharing of needles and other injection tools, and this patient base “is demanding hard choices be made about who gets treatment first,” Joseph writes.

“To qualify for treatment, some beneficiaries in Kentucky, for example, must have stage 3 or 4 liver fibrosis (on a four-stage scale) and show they have not used alcohol or drugs for six months, in part to reduce the chances that someone treated gets reinfected,” he writes.

But Dr. Uday Shankar, a Hazard gastroenterologist, told Joseph that everyone who is infected should be treated.

“You need everybody to be cured,” Shankar, who estimated that only 10 percent to 20 percent of his patients have been approved for treatment, said. “If you don’t cure them today, one person will transmit to five people. Especially youngsters — they have a long way to go.”

Jennifer Havens, an epidemiologist at the University of Kentucky, has been tracking hundreds of drug users in Perry County since 2008, detailing what drugs they use, with whom they use drugs, and if they can get substance abuse and medical treatment. “Their research, as well as work done in Austin, Ind., suggests it is possible to track how diseases like HIV and hepatitis C spread through close networks of drug users and to pinpoint the people most likely to infect others,” Joseph writes.

The research suggests that it might be possible to treat the patients with hepatitis C who are most at risk of infecting others as a form of prevention, Joseph writes. That may not be realistic at this point, Havens said, but “there’s got to be a way to come up with a formula in the future to find out who would be best to treat in a limited-resource setting.”

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