About 3.5 million people in the U.S. are living with hepatitis C. New, blockbuster drugs have transformed the treatment and prognosis for the deadly disease. But there’s a catch — they’re expensive.
A single course of treatment, which lasts about three months, can cost as much as $90,000. The sheer volume of patients combined with the price tag for treatment limits access.
When pharmacist Katherine Patstone of Katahdin Valley Health Center tries to get insurance approval to cover a prescription for hepatitis C treatment, she consistently hits roadblocks.
“In my experience, it’s normally been two to three times of going back and getting more information before they’ll approve it,” she says.
Patstone says every insurance company has different requirements, ranging from how far the disease has progressed to whether the patient is an active injection drug user.
There’s a reason for the strict criteria. The three-month course of treatment can rack up as much as a $90,000 tab, and even some of the less expensive options cost tens of thousands of dollars.
Patstone looks one up on her computer.
“Let’s see, so, if you were a cash-paying patient and you didn’t have any insurance, Epclusa, for 28 days, would cost you $43,360.80,” she says.
“Basically it’s an arm wrestling match between the insurance companies and the drug companies who are gouging us, because the medicine costs about $1,000 a pill,” says Dr. Peter Millard of the Seaport Community Health Center in Belfast.
Millard says he also encounters insurance companies that don’t want to pay for the drugs.
“It only shows the importance of persistence and having a good pharmacist who’s willing to spend the time to appeal,” he says.
In response to these criticisms, several insurance companies told Maine Public Radio that once they receive correct information, they do grant swift approval. Michael Sherman of Harvard Pilgrim Health Care says covering hepatitis C treatment is the right thing to do, but the cost has created budget challenges for insurers, especially nonprofits like Harvard Pilgrim.
“No one, I think, ever imagined — for a condition that treats it’s estimated 4 million-5 million Americans — that a drug would be priced close to $100,000 for a course of treatment,” he says.
The U.S. Centers for Disease Control’s estimate is slightly lower, at about 3.5 million. Still, the cost for treatment is also a challenge for state Medicaid programs.
“As far as an individual drug cost, it is probably one of the higher or highest cost drivers within the pharmaceutical budgetary section of Medicaid,” says Stephanie Nadeau, director of MaineCare Services, the state version of Medicaid.
According to federal drug spending data, Maine has spent between $18 million and $24 million a year on hepatitis C treatment since 2015. And that’s why Nadeau says MaineCare has imposed certain requirements for treatment. For example, patients are only given an initial 7-day supply to make sure they can tolerate it.
“Then we will go into the longer supply if necessary. Because what we don’t want to do is have the cost of the drug paid for by Medicaid and then somebody stop taking it within the first few days because they can’t tolerate it,” she says.
While several state Medicaid programs have been sued for restricting access to treatment, MaineCare receives high marks from primary care providers interviewed for this story as the easiest insurer to work with. They say MaineCare’s criteria is clear and, if met, approval is granted within 24 hours.
But a recent report from the National Viral Hepatitis Roundtable and Center for Health Law and Policy Innovation at Harvard reached a different conclusion about access to treatment in Maine.
“Unfortunately, we’ve given Maine a D+,” says Phil Waters, a clinical fellow with the Center for Health Law and Policy Innovation.
The reason for that grade, he says, is that Maine requires patients to maintain six months of sobriety before they can begin treatment.
“It’s contributing to the spread of the virus itself. Because as we know, the main driver of this virus is injection drug use. So not treating individuals who are actively using only serves to promote new infections and doesn’t get us to where we need to be toward eliminating the virus,” he says.
Maine isn’t alone in its low score. The report awarded Ds and Fs to more than half of all states.
“I get the criticism. I mean, who wouldn’t want to treat everybody?” says Matt Salo, executive director of the National Association of Medicaid Directors.
Salo says the cost of treating hepatitis C is one of the biggest pharmaceutical issues facing Medicaid.
“The fact of the matter is, if this drug were priced in a reasonable way at the forefront, we’d put it in the drinking water. We would give it to everybody. But it wasn’t, and Medicaid doesn’t live in an ivory tower. Medicaid lives in the real world, with real world budgets,” he says.
Salo says states initially negotiated lower costs. But the math still didn’t work out.
“If we covered everybody who’s got it, we would be spending as much on this one drug as we would on every other single drug combined in the entire program. And everybody said we can’t do that. That just blows a hole in the budget,” he says.
The leading maker of hepatitis C drugs, Gilead, defends its prices. In an email, the company says it discounts its therapies to insurers by an average of 50 percent.
In addition, the company points out that the average price per bottle for its drug Harvoni is now less than $15,000. A full course of treatment is usually two to three bottles.
New drugs are bringing the price down even more. Recently, the FDA approved Mavyret, which costs about $26,000 for a full course of treatment. Market competition helps, Salo says, but what’s really needed is federal intervention.
“The federal government has been doing us a big disservice by not treating this issue with the level of respect it deserves. What did we do as a county when we were facing a similar scenario with, let’s say, smallpox, or polio? We were able to come out with vaccines or cures or treatments for those. I guarantee you we did not do what we’re doing now, which is to say, ‘Well, we’ve got this great treatment. Well, let’s let people figure out how to pay for it,’” he says.
The need to pay for it won’t be going away. Because of the heroin epidemic and sharing of needles, a new wave of hepatitis C infections is sweeping the country.
According to the U.S. CDC, even though it’s a curable disease, hepatitis C kills more people than all other infectious diseases combined. In 2015, nearly 20,000 Americans died from hepatitis C-related causes.