Drug Has A ‘Practically 100 Percent’ Cure Rate For Hepatitis C. So Why Do Any Mainers Live With It?
Treatment for hepatitis C was at one time complicated, requiring weekly visits to specialists and harsh drugs that often came with severe side effects. And the cure rate was less than 50 percent.
A few years ago, the arrival of blockbuster antiviral drugs improved a patient’s chances of curing the infection to nearly 100 percent, and with just one pill a day. The success of these new drugs now makes treatment possible in a primary care setting, and in Maine, that opens access for rural patients in particular. But some patients are still missing out, increasing their risk of developing liver cancer.
This is part two in a three-part series. To read part one, click here.
On a warm August afternoon, Brian Lamkins waits in a primary care exam room at the Katahdin Valley Health Center in Houlton. He’s about to start treatment for hepatitis C.
“Once I talked to these people here, it was such a relief,” he says, because he has lived with hepatitis C for more than 30 years, about half of his entire life. “I mean, how much life do I have at 60, who knows? But at this point, you can feel it periodically more than when you were younger. So if that clears it up, you won’t get cancer of the liver, which is almost guaranteed, from what I understand.”
Hep C is a viral infection that’s transmitted through blood, and, most commonly, through intravenous drug use. If it isn’t treated, it can lead to liver failure, cancer and even death.
Lamkins says he tried to get treatment several years ago, but at the time it required a weekly six-hour round trip to Portland to see a specialist, and he faced a regimen of medication with chemotherapylike side effects.
“It used to be that treatment was very very difficult to do,” says Dr. Alan Kilby, a gastroenterologist in Portland who specializes in liver disease.
Kilby says early treatment for hepatitis C was not only harsh, it had mediocre results.
“The cure rate was only about 40 percent overall,” he says.
That all changed when a drug called Sovaldi hit the market in 2014. It treated hepatitis C with one pill a day for two to three months, with few side-effects. Kilby says it was a miracle drug.
“The cure rate is practically 100 percent. It’s above 90 percent, certainly,” he says.
But many insurance companies still require that specialists provide treatment. And in Maine, most specialists are based in Portland and Bangor. That presented a problem for Dr. Rose Fuchs, the medical director of Katahdin Valley Health Center, which has six clinics north of Bangor.
“For our patients, because they lack transportation, it seemed like the majority of them were actually going without treatment. And the consequence of that, which we did see with one patient, was the progression to liver cancer,” she says.
Fuchs says she decided to take action. After some research, she started contacting specialists to see if they’d collaborate with Katahdin Valley so local providers could dispense treatment under their guidance.
“There were a lot of obstacles to overcome. We first had to find specialists that were willing to join in with us,” she says.
Specialists, she says, had legal considerations such as opening themselves up to malpractice claims. They also had to agree to donate their time because there isn’t a good model to bill for remote consults in telemedicine.
Maine Medical Center’s Virology Treatment Center in Portland, and Dr. Alan Kilby, agreed to collaborate with Katadhin Valley, because Kilby says primary care physicians have to be part of the solution.
“I think there’s no way that the specialists are going to be able to treat everybody,” he says.
Kilby says there aren’t enough specialists in the entire state, let alone in rural areas. He now collaborates with three remote health centers: Kathadin Valley, Penobscot and Seaport in Belfast, where Dr. Peter Millard says hepatitis C is on the rise.
“We have a substance use disorder clinic where we treat a lot of young people with drug issues, and among this population, a fair number are hepatitis C positive,” he says.
Physicians at Seaport have treated about 20 patients for hepatitis C in the past two years, and they’ve all been cured. Katahdin Valley has also seen a 100 percent success rate in the 30 patients it’s treated.
But Fuchs says more physicians need to offer treatment to meet the demand. Especially in northern Maine.
“We were hoping with this project that we could be a resource for private community physicians who don’t have access to telemedicine and the organizational resources that we have at Katahdin Valley Health Center,” she says.
That hasn’t happened yet, Fuchs says. She understands why primary care providers, who are already stretched thin, aren’t necessarily jumping at the chance to add hepatitis C treatment to their practice, but she’s seen firsthand the dramatic impact it has on patients’ lives.
“It’s life-changing. It’s life saving. It literally has turned people from being at death’s door with cirrhosis or cancer to having a life that would be quite normal,” she says.
“It’s just a weight off your shoulders,” says Lamkins, who recently completed his hepatitis C regimen and says he’s now cured.