John Tortelli recently received some good news: The virus that has lurked in his body for nearly four decades, threatening to destroy his liver, can no longer be detected in his blood.
Tortelli, a 64-year-old retiree who lives in Arlington, contracted hepatitis C as a young man, from a blood transfusion during heart surgery. Over the years, the virus has led to fatigue, joint aches, mental fogginess — and continual worry that the infection might progress to cirrhosis, as happens to 5 to 20 percent of infected people.
So Tortelli was delighted when a new class of drugs, with a high cure rate and minimal side effects, came on the market. But his insurer, Tufts Health Plan, balked at paying for the expensive treatment, saying it would cover the drugs only for people with severe liver damage. Tortelli’s liver was only slightly damaged.
After an article detailing his plight appeared in the Globe, Tufts revealed that it had changed its policy, and in late April, Tortelli began treatment with the drug his doctor recommended, Harvoni.
“Great news,” Tortelli wrote in an e-mail to the Globe last week. “I have almost completed six weeks of my twelve-week Harvoni treatment and my viral load is now at zero. I can’t wait to finish and be disease-free for the first time in 38 years.”
Although he’s still under treatment, Tortelli said his hepatitis symptoms are already much improved. The drug, however, causes occasional, slight headaches; muscle soreness; and tiredness right after he takes it. “Overall,” he said, “I would say I feel better.”
Tortelli was originally on an eight-week treatment plan, but when tiny amounts of the virus could still be detected after four weeks, he was switched to a 12-week regimen. The list price for 12 weeks of Harvoni is $94,500, but health insurers negotiate significant discounts.
Tortelli has private health insurance. But most people with hepatitis C are covered by state Medicaid programs for low-income people — and most states require patients to have severe liver damage before paying for treatment.
Medicaid programs say their budgets can’t cover the drugs, so they need to treat the sickest first. But advocates point out that refusing treatment until people become severely ill violates federal Medicaid law and the guidelines of medical specialists.
The advocates’ position got a big boost last month when a federal District Court judge in Seattle ordered Medicaid in Washington state to start covering the drugs regardless of the condition of the patient’s liver. A few days later, Florida — also facing a suit — adopted a similar policy change.
Massachusetts, however, has yet to move. The state’s Medicaid program, MassHealth, covers the new hepatitis C drugs without limitations for one-third of its members. But the other two-thirds, who get their MassHealth coverage through private insurance companies, still must have severe liver damage before they can get the medications.
MassHealth spokeswoman Michelle Hillman said in a statement the agency is amid negotiations to wrest bigger discounts from drug manufacturers.
The state expects that process “will reduce the cost of treatment for MassHealth members with hepatitis C,” she said, and once the talks are complete, the agency will announce changes to coverage for the hepatitis C drugs.
Robert Greenwald, the Harvard Law School professor who sued Washington state, said he sent an e-mail to MassHealth director Daniel Tsai on Thursday, advising that Medicaid rules clearly require coverage.
Asked whether he planned to sue Massachusetts, Greenwald said, “I’m not there yet. I have been assured they are working as quickly as they can.” But Greenwald, who directs Harvard Law School’s Center for Health Law and Policy Innovation, said if the state’s process “does not result in access mandated under law,” he will reconsider taking legal action.