COSTLY TO TREAT, HEPATITIS C GAINS QUIETLY IN U.S.

Original Story: nytimes.com

EDGEWOOD, Ky. — Zach Wayman says he first contracted hepatitis C several years ago by sharing needles with other heroin addicts. He went into rehab and was successfully treated for the virus. But he relapsed into addiction and reinfected himself, testing positive for hepatitis C again this spring.

“Pretty much everybody in my rehab has it,” said Mr. Wayman, 25, who started abusing pain pills at 18 and switched to heroin a few years later.

Mr. Wayman is part of an epidemic affecting young intravenous drug users across the country, particularly in Appalachia, where opiate abuse exploded in the late 1990s and never subsided. And that has health officials concerned, not just because the hepatitis C virus can lead to liver failure, cancer and sometimes death, but also because its spread can foretell another deadly disease: H.I.V., which can also be transmitted by shared needles.

Earlier this year, in Scott County, just 90 miles from here in rural southern Indiana, more than 160 people tested positive for H.I.V., and 86 percent of those people were also found to have hepatitis C. Most of those infected had shared needles to inject a prescription opiate called Opana.

In May, the Centers for Disease Control and Prevention reported a sharp increase in reported cases of hepatitis C among young adults in Kentucky, Tennessee, Virginia and West Virginia. While rates of acute hepatitis C, which is very costly to treat, have risen around the country, Kentucky’s rate was more than seven times the national average.

And the numbers most likely do not even begin to capture the problem, according to the C.D.C., which estimates that only one in every 10 cases is reported, partly because people with hepatitis often have no symptoms.

“It’s definitely the tip of a much larger iceberg,” said John Ward, director of the division of viral hepatitis at the C.D.C.

The agency estimates that more than three million people nationally have hepatitis C, which caused more than 15,000 deaths in 2013. Left untreated, the virus inflames and may eventually scar the liver, making it less effective at filtering toxins and other crucial functions. It sometimes leads to liver failure and liver cancer, and is the most common reason for liver transplants.

Reminded of the H.I.V. dangers that an hepatitis C epidemic can portend, counties and cities across this region are scrambling to contain the spread of both viruses, including by establishing programs where addicts can exchange dirty needles for clean ones.

Here in northern Kentucky, St. Elizabeth Healthcare, a regional hospital system, confirms up to 10 new cases of hepatitis C daily, said Deborah Henson, an infection control practitioner. Each positive test result starts a chain of events now all too familiar: St. Elizabeth reports it to the Northern Kentucky Health Department, which tracks down infected individuals to investigate how they contracted the virus and to try to keep them from spreading it. Some continue sharing needles and abusing drugs, while others make their way to hepatitis specialists whose caseloads are exploding.

They often learn that their insurance, if they have any, will not cover the treatment — highly effective new drugs cost at least $84,000 for a typical 12-week course. The cost of the new hepatitis drugs is so high that state Medicaid programs and many private insurers say that even treating a fraction of the infected population is breaking the bank.

Last year, Kentucky spent more than $50 million, about 7 percent of its total Medicaid budget, providing two of the new hepatitis C drugs, Sovaldi and Harvoni, to just 861 people, said Dr. John Langefeld, chief medical officer at the state’s Department for Medicaid Services. Sovaldi has a list price of $84,000 for a typical 12-week course of treatment; Harvoni, made by the same company, Gilead Sciences, has a list price closer to $100,000. Gilead offers discounts to Medicaid programs, but “it doesn’t do much to offset the significant cost factor,” Dr. Langefeld said.

In all, about 16,000 Kentucky Medicaid beneficiaries had a diagnosis of hepatitis C last year, up from 8,000 in 2013. That partly reflects the expansion of Medicaid under the Affordable Care Act to include more low-income adults, Dr. Langefeld said. But the state’s opiate problem, and increased testing of people who have injected drugs, are also factors, he and other health officials said. Kentucky will soon start providing hepatitis C tests at all its county health departments, just as it does for H.I.V.

Medicaid beneficiaries here are covered by private managed-care plans, each with its own rules for who can get the new hepatitis drugs. But patients generally need proof of Stage 3 or 4 fibrosis, or scarring of the liver, and cannot have used illicit drugs for at least six months, Dr. Langefeld said.

Karen Ruschman, a nurse practitioner at a private gastroenterology practice here, said many young adults with hepatitis C have not been able to quit heroin because treatment programs, especially those using Suboxone, a medication that suppresses opiate cravings, are expensive and hard to get into. Addicts typically “can buy heroin cheaper than they can get into a Suboxone clinic,” Ms. Ruschman said.

The vast majority of those infected with hepatitis C are baby boomers, according to the C.D.C. Most were infected decades ago, and many got it from blood transfusions that they received before 1992 when donated blood was not screened for the virus.

But most new cases are among young people, data has shown, and that raises a potential treatment problem: Those younger people tend not to qualify for the expensive new drugs, health care providers said, because the disease can take decades to progress to the point of severe liver damage.

Kentucky is not alone in rationing the drugs. A new study by researchers at Harvard found that about three-quarters of state Medicaid programs allow sofosbuvir, the main ingredient in Sovaldi, to be used only when hepatitis C has caused Stage 3 or 4 fibrosis. The study pointed out that such restrictions are at odds with the position of medical groups like the Infectious Diseases Society of America, which recommend the new treatments for all diagnosed cases.

In addition, the study’s authors wrote, “Current restrictions may violate federal Medicaid law, which requires states to cover drugs consistent with their F.D.A. labels.”

Many with hepatitis C are still in the throes of addiction, or are not far along enough in their recovery to focus on anything else. Others remain unaware of the new treatment options. Jerry Searp, who stopped injecting heroin in November 2011 and tested positive for hepatitis C a few months later, said he knew only about treatment with interferon and ribavirin, older drugs that often caused depression, fatigue, nausea and other debilitating side effects.

“They said my levels were real low,” he said, recalling a doctor’s appointment last year, “so I just keep praying about it.”

Mr. Searp, 34, of Crescent Spring, believes he knows exactly when he contracted the virus: while shooting up with a friend in a house frequented by addicts.

“I asked to use his needle and he said, ‘Hey, I’ve got hep B and C,’ ” Mr. Searp said. “And at the time it didn’t really matter to me. The desire to get high was just so great.”

Mr. Wayman, a warehouse worker, said his doctor was trying to persuade his insurer to pay for one of the new drugs, which were not yet available the first time he sought treatment. He hopes to qualify for the new treatment before December, when he will turn 26 and no longer be covered by his parents’ health insurance.

“It’s in my past and I don’t want my past to haunt me,” he said. “I’m just waiting on that phone call.”

In Crestview Hills, outside Cincinnati, Dr. Thomas Schussler has 25 patients receiving treatment for hepatitis C and another 140 patients waiting for it, typically because their insurer has not yet approved it or because they are still using drugs. Dr. Schussler said private insurance is more likely to cover the cost, but only about 20 percent of his patients have it. The success rate with the new drugs is remarkable, he said, but he added, “The problem is we’re not getting anywhere. You could eradicate this if the drugs were ubiquitous and cheap.”

Lynne Saddler, who leads the Northern Kentucky Health Department, is pursuing another avenue for getting a handle on the epidemic: starting a needle exchange so that addicts in the region might stop infecting each other. This year, the Kentucky General Assembly passed a law aimed at combating the state’s growing heroin problem, with a provision that allows local jurisdictions to open exchanges.

Louisville became the first city in Kentucky to take advantage of the new law last month. Needle exchanges are also in the works in several counties in Indiana, Ohio and West Virginia. The Northern Kentucky District Board of Health voted last month to move forward with an exchange, but it still must win approval from any city or county in which the exchange has a location. Ms. Saddler is trying to build support for it, including among opponents who believe needle exchanges only encourage drug use.

“This really is our window of opportunity,” she said. “When you lay that out for people — look, we have a statutory responsibility to prevent the spread of diseases like this and here is a very effective tool — they start getting it.”