On most Thursdays, a small group of patients assembles at the VA hospital in West Haven because they share a common disease — hepatitis C – and a common treatment — a protocol of new antiviral drugs.
West Haven has been one of several veterans’ hospitals nationwide leading efforts to better treat – and hopefully cure — hepatitis C, a virus that is four times more common among veterans than in the general population.
Nationally about 4,000 veterans have taken the new antiviral drugs since they went on the market in 2011 costing an estimated $100 million in prescriptions.
“People have kind of gulped when they see this [the cost],” said David Ross, the director of the national VA’s HIV, Hepatitis and Public Health Pathogens Program. “But these drugs make a difference.’’
Most of the patients in West Haven are still completing the full year of triple-drug therapy, but early results are promising, VA staff says.
The work being done in West Haven has received renewed attention since the new antiviral medications were approved for use by the Food and Drug Administration.
These drugs offer hepatitis C patients greater hope, but they’ve also added layers of complexity and risk to an already grueling treatment — challenges the West Haven staff hopes to mitigate. The VA’s goal is to develop new techniques — including group appointments — that could eventually help doctors, both military and civilian, manage an epidemic that kills more Americans each year than AIDS.
“We’ve had some guys say, ‘if it wasn’t for this group, I wouldn’t have made it through,’” said Catherine Moore, one of several nurses who work with the veterans in the West Haven clinic. “This is a treatment that isn’t done to or for a patient. It’s done with a patient.”
Treating hepatitis C has never been easy. First identified in 1989, the virus has long stumped researchers. In the early 1990s, a small segment of infected patients were successfully treated with injections of interferon. Cure rates rose to 50 percent a few years later when an oral drug called ribavirin was combined with the injections.
The two new oral medications are telaprevir and and boceprevir. When one of the drugs is combined with interferon and ribavirin, the three-drug cocktail has the potential to cure more than 70 percent of patients.
An estimated 1.3 percent of Americans are infected with hepatitis C.
About 4 percent of all veterans treated at VAs – or roughly 165,000 – have the virus. In the region that includes Connecticut there are about 5,000 vets with hepatitis C, according to 2008 numbers, the most recent available.
Public health officials suspect the high prevalence among veterans has to do with the way the virus is transmitted through blood-to-blood contact. Battlefield transfusions, barracks tattoos and, in some cases, IV drug use are common sources of infection.
No matter how a veteran contracts the virus, the chances that he or she will face serious health consequences are the same. Roughly one third will develop cirrhosis, often a precursor to liver failure, according to a report published last year in the American Journal of Gastroenterology.
Infected veterans are also prone to cancer as they age; that same report found that hepatocellular carcinoma is eight times higher in veterans with hepatitis C than it was in 2000.
The situation, though, is better than it could have been, at least for veterans seeking treatment. Nearly 15 years ago, when most health care providers knew nothing about hepatitis C, the VA did something unprecedented: It tested every patient for the virus.
Treatment options at the time were limited, so the VA did what it could, monitoring infected patients and searching for the most efficient ways to manage the epidemic. Part of that plan involved opening hepatitis C resource centers at veterans’ hospitals around the country.
More than two dozen veterans hospitals applied to host the centers; four were chosen, including West Haven. Since then, these four hospitals have created training materials for doctors and patients and tested different treatment protocols.
Online training manuals developed by the centers are particularly popular — so popular that the VA recently received a request to translate some for use in Kazakhstan.
That success has not been cheap. Each center costs about $725,000 a year to operate. The new drugs, while promising, have added to those costs.
The expense and complexity of the three-drug cocktail is why the staff at West Haven says it’s so important to find ways to make treatment more tolerable for patients and more efficient for doctors.
It often takes a year to permanently clear hepatitis C, and the side effects are brutal. Weekly interferon shots bring flu-like symptoms that last for days; one kind of pill can causes serious rashes; another carries risks for heart trouble. Anemia, nausea and depression are also common.
The Thursday afternoon meetings give doctors and nurses a chance to educate patients about how to take the drugs properly and alleviate some of their discomfort.
The meetings have also become a source of moral support. One patient recently taught the others how to meditate; another gave a lecture about eating healthy on a budget.
“Once the shyness goes away and the personalities come out, that’s where the magic is,” Moore said. “They’re supporting each other with a little bit of guidance from us.”
Group settings aren’t for everyone, though. Some patients prefer to see a nurse privately; others live in areas where group appointments might not make sense. That’s one reason why the center is testing a telemedicine program that coaches patients through common side effects and monitors them for rare but dangerous complications.
Technology is also helping health care workers from rural areas learn about the virus. The staff hosts regular teleconferences where doctors can compare experiences and consult with liver specialists. Some doctors also visit the center in person to spend a few days observing in the clinic and learning about the new drugs.
“The civilian population should be taking a lesson from what’s going on,” said JoAnn Thompson, executive director of the Connecticut chapter of the American Liver Foundation. “How they’re tracking their patients and treating their patients in a more interdisciplinary fashion.”
The foundation is planning training seminars for local doctors similar to the ones organized at West Haven. The civilians will meet in person, not over a virtual network, but the goal is the same.
Group medical appointments might also be appealing to patients facing treatment, said Tamar Taddei, a hepatologist who splits her time between the West Haven VA and Yale Medical Center.
“People with the same problems like to flock together,” she said. “Any time you have a frightening, chronic illness or illness that requires some sort of long term care, people want to commiserate with each other.”
The veterans’ administration’s biggest advantage, though, may be foresight.
“It’s important to start strategizing early,” Taddei said. “This is one instance where you can really see the benefit pay off.”