Hepatitis C patients often have to get sicker before insurance will pay for drugs

Tufts Health Plan would not pay for a drug that could cure John Tortelli’s hepatitis C, even though the virus causes him frequent pain. The reason: His liver is only slightly damaged.Dina Rudick/Globe Staff/Globe Staff

Patients infected with hepatitis C are finding that having private health insurance doesn’t always mean they can get the drugs likely to cure them.

Many insurers in Massachusetts, worried about the high cost of those medications, allow their use only for patients whose livers already show signs of severe damage, despite guidelines from major medical societies recommending treatment for nearly everyone infected with hepatitis C.

As the debate rages over the high prices of drugs such as Sovaldi and Harvoni, the focus has often been on the obstacles to care in state Medicaid programs, which cover a high proportion of people with hepatitis C.

But as John Tortelli of Arlington can attest, patients with private health plans can also be blocked from getting those drugs. His insurer is Tufts Health Plan, which his doctor says has some of the most restrictive policies on hepatitis C drugs.

Tufts would not pay for a drug that could cure Tortelli, a 64-year-old retiree, even though the virus causes him frequent pain. The reason: His liver is only slightly damaged.

Tufts spokeswoman Sonya Hagopian said in an e-mail that the company has been “doing everything we can to provide access to specialty drugs in the face of extraordinarily high prices” and that it continually reviews coverage criteria.

Many health plans in Massachusetts have similar policies for an ailment estimated to affect 1 to 1.5 percent of the state’s population — 67,000 to 100,000 people — although most who are infected don’t know it.

In addition to Tufts, Harvard Pilgrim Health Care, Neighborhood Health Plan, Boston Medical Center HealthNet Plan, Health New England, and Fallon Health will pay for the new class of hepatitis C medications only for patients whose livers are already severely damaged.

The plans vary in their approach to patients’ use of drugs and alcohol. Some require six or 12 months of abstinence; others only mandate ongoing counseling for addiction. All require that the prescribing physician be a specialist.

These practices are not unique to Massachusetts. Last week, New York’s attorney general sued an insurer for allegedly refusing to cover hepatitis C drugs unless the patient has advanced liver disease.

Eric Linzer, spokesman for the Massachusetts Association of Health Plans, said the hepatitis C drugs are “so excessively priced that it does create significant challenges.” To add to the challenge, he said, when the first of the new class of drugs, Sovaldi, came on the market in late 2013, clinical guidelines had not been developed and since then have kept changing. Insurers’ advisory committees meet quarterly to update policies based on new evidence and guidelines, he said.

Blue Cross Blue Shield of Massachusetts, whose 2.8 million members represent roughly half the state’s commercial market, has a more liberal policy than the smaller plans: It pays for hepatitis C treatment regardless of whether a patient’s liver is damaged or whether the patient is using drugs or alcohol.

“These drugs, although very expensive, are really revolutionary in their ability to cure the virus,” said Dr. Tony Dodek, Blue Cross’ vice president for medical quality and strategy. But the added costs “show up in premiums,” he said.

Blue Cross, Dodek added, is unlikely to see the savings from illness avoided: Most patients it paid to treat will be on Medicare by the time they would have developed cirrhosis or cancer.

The list prices for the hepatitis C antivirals range from $54,600 to $94,500 for a three-month course of treatment. But insurers negotiate discounts — and don’t reveal what price they arrived at. Dodek said Blue Cross, because of its size, is able to negotiate bigger discounts.

So far, Blue Cross has paid for the new hepatitis C drugs for about 1,400 people. In the state’s Medicaid program, more than three times as many people have received the treatment.

Getting approval for the coverage is often only the first hurdle. Many health plans have high deductibles requiring a hefty out-of-pocket payment or co-pays that can be prohibitive.

The Center for Health Law and Policy Innovation of Harvard Law School analyzed plans sold on the Massachusetts Health Connector, the state agency for people who buy insurance on their own, most of whom have moderate to low incomes. The center found that in nearly half the plans, patients had to pay a higher percentage of the cost for hepatitis C drugs than for most other drugs. Some insurers require patients to pay half the cost.

People who are on Medicare can obtain the drugs if they purchase a Part D prescription-drug policy, but those policies typically require deductibles, copayments, and sometimes prior authorization — all of which can limit access.

For the majority of people infected with hepatitis C, the virus lingers in the liver for decades. About 5 to 20 percent of those infected eventually develop cirrhosis, and 1 to 5 percent die from liver cancer or cirrhosis. But these illnesses occur 30 years or more after infection.

The virus’s slow progress has provided a rationale for some of the restrictions: Insurers and Medicaid plans with limited resources say they need to prioritize the sickest people, because the others are not at immediate risk of severe illness.

That is cold comfort for Tortelli, who became infected through a blood transfusion during heart surgery in the years before a screening test existed for donated blood. (Hepatitis C is spread through blood, most commonly when intravenous drug users share needles.)

When he learned of his infection, Tortelli considered the treatment then available, interferon, and decided against it. That drug would have made him feel like he had the flu for a year, and in the end, he would have only a 40 percent to 45 percent chance of a cure. His doctor, Nezam H. Afdhal, said a heart condition also made Tortelli a poor candidate for interferon.

Tortelli was thrilled when more effective drugs, requiring only eight to 12 weeks of treatment with minimal side effects, came on the market. Afdhal, chief of hepatology and director of the Liver Center at Beth Israel Deaconess Medical Center, said Tortelli was a candidate for Harvoni, a drug approved in 2014.

But Tufts Health Plan refused to cover it because Tortelli’s liver wasn’t damaged enough. Now, Tortelli has applied to get Zepatier, a drug made by Merck and approved in January. He awaits an answer.

“It drives me nuts,” said Afdhal, who led the clinical trial of Harvoni and holds a paid position on the scientific advisory board of its manufacturer, Gilead Sciences (as well as that of Merck and other companies involved with liver diseases). “It’s very frustrating to have been involved in the development of such treatments and then to have trouble getting access to those treatments for our patients.”

Even patients with minimal liver damage often have other health problems resulting from the chronic inflammation the virus causes, Afdhal said. Tortelli, for example, suffers from joint pain, fatigue, and difficulty making decisions.

“It makes me feel angry at the insurance companies,” Tortelli said. “I’ve worked all my life, had health insurance all my life. I’ve been waiting for this cure to come along — and now I can’t get it.”