The way Dr. Thomas Mahl sees it, Mary Hood is a fortunate one when it comes to his Hepatitis C patients.
Hood was diagnosed with the Hep C virus in the early 1990s, when treatments were ineffective and results often heartbreaking.
Until this decade, doctors had little to offer when they had to break the news that the virus had quietly ravaged a patient’s liver for years, raising the specter of cirrhosis, liver cancer and death.
“I’ve filled cemeteries with people who had Hepatitis C,” said Mahl, a gastroenterologist who has treated patients for 28 years at Veterans Affairs medical centers in Buffalo and Batavia.
“Now,” he said, “we really have hope.”
Mahl and his team at the Buffalo VA have treated more than 800 patients with Hepatitis C during the last four years. More than 90 percent have been cured with a new group of drugs that attack the virus at the cellular level and can be taken orally. Similar results have played out across the globe.
Still troubling, however, is that most people who carry the virus that causes Hepatitis C don’t know it, including a growing number of those who have used illegal injectable drugs in recent years.
“We’re not only seeing the fact that the older generation is dying of cirrhosis and increased liver cancer in larger numbers, but just when we thought we were going to get rid of this disease because we have these new therapies, now we’ve got all these young people coming in with Hepatitis C,” said Dr. Andrew Talal, a University at Buffalo medical professor and hepatologist who treats patients at Buffalo General Medical Center. He also leads liver disease research at the Buffalo Clinical and Translational Research Center.
Mahl, Talal and others on the Hepatitis C frontlines talked about who should get tested, what can happen to those who have the virus if they don’t, and how new medications have unlocked a new lease on life for Hood and millions like her.
A STUBBORN VIRUS
Hood, 58, of Cheektowaga, is among the group at greatest risk for Hepatitis C: baby boomers who joined the military.
About 3.5 million Americans are living with a chronic Hepatitis C infection – and boomers account for three of every four of those cases, according to the federal Centers for Disease Control and Prevention. Those born between 1945 and 1965 are six times more likely than the general population to carry the Hep C virus, and veterans born during that era have a rate higher still. Nearly one in five vets born in 1954 is infected, the federal Veterans Health Administration’s Office of Patient Services estimates.
Hood, a recovering alcoholic, served from 1979 to 1984 as a U.S. Army fuel and electrical mechanic with the 513th Maintenance Co., based in El Paso, Texas. She returned home afterward, working as a factory laborer, nursing home aide and child care provider. By the time she tested positive for Hepatitis C, doctors already tried unsuccessfully to treat her chronic fatigue, tremors and depression – symptoms common in many conditions.
“For years, I pretty much thought I was crazy and I had the flu,” Hood said. “At times, I couldn’t pick up a cup of coffee.”
Mahl diagnosed her with Hepatitis C in 1992 and prescribed Interferon, the only medication indicated for the disease at the time. Hood injected herself daily, for a year, with little relief. She eventually needed a cane, then a walker, to get around. She quit an animal grooming job that she loved and went on disability benefits.
“Dr. Mahl kept giving me hope,” Hood said, “and telling me there was something they were looking for.”
Hepatitis C causes inflammation in the liver. Over time, it activates cells that cause scarring. As its symptoms surface, jaundice can develop. Fluid can build up in the body. Fatigue, malaise and internal bleeding can become more pronounced. Left untreated, it can morph into to cirrhosis (end-stage liver disease), liver cancer or liver failure.
“Some people experience cirrhosis and death without being tested,” Mahl said. “Unfortunately, I’ve discovered hundreds of cases after it was too late.”
Talal said the push for testing has increased because – despite effective new drugs – liver cancer rates are increasing faster than other cancers. The American Cancer Society and leading researchers estimate the disease will strike more than 40,000 Americans this year and account for 29,000 deaths.
Mahl, Talal and other specialists were encouraged that drugs developed to treat the AIDS virus had taught researchers important lessons as they worked on Hepatitis medications.
“It’s tough to design drugs to combat the virus,” Mahl said. “There’s some molecular reasons. It’s a flat molecule and you need grooves for the drug to get in. Finally, they did it.”
Hepatitis C is caused by human blood-to-blood contact. Boomers, including veterans, tended to contract the virus through tainted needle sharing – a common practice during drug experimentation in the 1970s and ’80s – as well as blood transfusions before the blood supply was better safeguarded in 1992, Mahl said. Vietnam veterans also were at risk because of blood-to-blood contact on the battlefield. Inhaling cocaine and getting a tattoo in a non-licensed, non-commercial setting also has been tied to the virus, Mahl said.
[BELOW: Read a list on who should get tested]
Talal encouraged those who fall into a risk category to talk with their primary care doctor, who can order a blood test and refer those who test positive to a liver specialist, gastroenterologist or infectious disease physician.
Testing – especially in recent years – has become vital for health professionals now armed with medications to fight the virus. The VA has made it a priority to treat every veteran who has contracted it.
An 8- to 12-week course of treatment can cost up to $100,000, which the VA covers. Most of the cost for non-veterans generally is covered through health insurance.
“If you’re a baby boomer and come into an emergency room in New York State, or most other states around the country, and there’s no record of a Hepatitis C test, you have to be tested for Hep C unless you specifically decline,” said Patrick Goeller, a nurse practitioner at the Buffalo VA.
Talal also treats Hep C and other liver diseases at Erie County Medical Center and Strong Memorial Hospital in Rochester. He spends most of his time on research, including a five-year, $7 million project funded by the Patient Centered Outcomes Research Institute (PCORI) to find out if telemedicine can improve Hepatitis C treatment for patients who take methadone.
"The basic problem is that patients in methadone treatment go to pick up their medications once daily to once weekly," but don't always attend other medical appointments "for a variety of reasons," Talal said. "They're going to the methadone clinic anyway and many of them already have a diagnosis of Hepatitis C."
Talal and his fellow researchers are studying the effectiveness of providing more than one service through a telemedical consult during those clinic visits.
NEW TREATMENT REGIMEN
Interferon is a nonspecific drug introduced into the bloodstream and designed to rev up the immune system to attack invading cells. In different forms, it also has been used to fight multiple sclerosis and some cancers.
“We’re now using direct-acting antivirals, drugs that attack the virus itself,” Talal said. The drugs – in groups called protease inhibitors, polymerase inhibitors and direct acting antivirals – attack Hepatitis C virus particles so they can’t replicate.
Once a course of the drugs is taken, “the liver has tremendous regenerative capacity,” Talal said.
Mahl estimated the cure rate using Interferon injections was as low at 11 percent at the Buffalo VA. Side effects – including fatigue, fever, nausea, vomiting, anemia and serious depression – were common.
All the new drugs can be taken orally, for a much shorter period of time, and have far fewer side effects, Talal said.
The Hepatitis C virus comes in six forms, called genotypes. Only three are common in the U.S.
Drugs that have gone to market during the last five years have become increasingly efficient in attacking genotypes 1, 2 and 3 – often by combining more than one agent in the same pill. Harvoni (ledipasvir and sofosbuvir), Epclusa (sofosbuvir/velpatasvir) and Zepatier (elbasvir/grazoprevir) are most commonly used at the Buffalo VA, Mahl said.
Hood took a combination of two drugs, simeprevir and sofosbuvir, in 2014.
“I started feeling healthier,” she said. She resumed walking, and running. She took up bicycling for the first time since her teen years, as well as swimming and kayaking. She became more interactive with her three dogs dogs – a Shih Tzu named Molly; Faith, a Rottweiler-Australian shepherd; and a beagle-lab mix, Jolie.
“I’m a walking miracle,” Hood said. “I thought I was going to start feeling better, to where I wouldn’t wake up every day feeling, ‘This is it,’ but I never expect to feel this good.”
WHO SHOULD GET TESTED?
The Centers for Disease Control and Prevention recommends the following people should get a Hepatitis C test:
– Everyone born from 1945 through 1965
– Anyone who has ever injected illegal drugs
– Those who got blood transfusions or solid organ transplants before July 1992 or clotting factor concentrates made before 1987
– Patients who have ever received long-term hemodialysis treatment
– People living with HIV
– People with signs or symptoms of liver disease, including those with abnormal liver enzyme tests
– Children born to mothers with Hepatitis C
About 80 percent of those infected with Hepatitis C go on to develop a chronic infection. “It’s critical that everyone at risk for Hepatitis C get screened,” CDC officials say. “Once diagnosed, most cases can be cured in just a few months, and successful treatment reduces liver cancer risk by 75 percent.”
Twitter: @BNrefresh, @ScottBScanlon