Alan Oberman still remembers the call.
“We have a liver for you,” the nurse said.
The news came sooner than expected — the waiting list for transplants is long. But there was the nurse saying a match had been found. The day was Sept. 29, 2011.
He had just been diagnosed with liver cancer that January, a result of Oberman’s exposure to hepatitis C decades earlier.
“But I haven’t told my mother yet,” were the first words out of his mouth.
“That sounds like a personal problem,” the nurse deadpanned.
Today, Oberman is on the front lines of the war on hepatitis C in more ways than one, as both a carrier and as executive director of the John Brooks Recovery Center in Atlantic City.
Between 65 percent and 80 percent of those the center tests each year are positive for the blood-borne virus that attacks the liver, leading to cirrhosis and cancer in some. That compares with about 5 percent who test positive for HIV, perhaps because of the disparity in awareness of the two conditions.
“Hepatitis C is reaching epidemic proportions now because it’s going unseen and unfunded,” said Donna Thornton, who supervises the Early Intervention Program at the Brooks center.
Like the disease itself, which victims can carry for decades without experiencing symptoms, the epidemic is largely unrecognized by the public at large. Health campaigns have been launched only recently.
And it’s not just intravenous drug users who suffer from the disease.
Earlier this year, the federal Centers for Disease Control and Prevention recommended for the first time that all baby boomers — those born between 1945 and 1965 — get tested. Statistics show that age group accounts for 75 percent of hepatitis C cases despite making up only 27 percent of the U.S. population.
In the overall U.S. population, the CDC estimates, there are about 17,000 new infections each year. Between 2.7 million and 3.9 million people live with the chronic form of the condition, with about 12,000 dying each year from liver disease associated with the virus.
It’s also the most common reason for liver transplants nationwide, according to the National Institutes of Health.
“People don’t know or think about themselves being at risk for hepatitis C because they don’t associate with what’s traditionally been the risk factors,” said State Epidemiologist Christina Tan, the New Jersey Department of Health’s assistant commissioner of epidemiology.
The disease is most commonly associated with injection-drug use, specifically the sharing of needles, because it’s spread through blood-to-blood contact. Some research has indicated a connection to certain high-risk sexual behaviors and exposure to nonsterile piercing, tattooing and personal care items.
Another factor, particularly among baby boomers, is that blood supplies and organ transplants were not widely tested for hepatitis C until 1992, when testing methods improved.
Oberman, 64, said he likely was exposed through an addiction to heroin and other opiates, which he sought treatment for three decades ago.
While he was diagnosed in the early 1980s, Oberman didn’t seek treatment until a decade later, when he began to feel symptoms.
“I was beginning to feel very tired,” he said. “I wasn’t sure if it was just because I was in graduate school and overdoing it.”
In addition to fatigue, the CDC reports, symptoms can include abdominal pain, dark urine, joint pain, loss of appetite, nausea, and yellowing of the skin and eyes.
Oberman said the disease may have gone undetected in many from his generation. And even then, he said, there’s a certain stigma attached to getting tested due to the causes of the disease.
“It might be relevant because it’s commonly associated with high-risk sex and needle use, which was more prevalent back then,” he said. “Both of those things no one likes to admit to.”
In 2005, New Jersey commissioned a study into the disease and response strategies. It set out six goals:
n To expand education efforts
n To improve prevention and harm-reduction activities
n To improve disease monitoring
n To improve access to testing and care for the uninsured and underinsured
n To build partnerships between health care providers
n To develop funding mechanisms to carry out recommendations
Tan said many of the study’s recommendations have been carried out, from educational campaigns to funding needle-exchange programs. A task force formed at the time of the study is also still around, she said, although it’s less active.
“The message has been distributed out there,” she said. “It’s just a matter of making sure providers are aware of these new recommendations that we do disseminate.”
A report issued in October by state Health Commissioner Mary E. O’Dowd found that 9,912 people have enrolled in the state’s five needle-exchange programs since 2007. About 48 percent of the needles distributed in Atlantic City — the first location to open — are returned, compared with an average of 54 percent statewide.
Gemma Downham, an epidemiologist for AtlantiCare Regional Medical Center, said its Department of Infection Prevention has distributed new screening guidelines that were issued in August in response to the CDC’s recommendations.
“Having a primary care provider and appropriate screenings ... if you are at risk, is important,” she said.
Roseanne Scotti, director of the New Jersey Drug Policy Alliance, said resources for hepatitis C still lag HIV. Even those who have access to free testing often do not have either the resources or inclination to continue with treatment, she said.
She said that even in a place such as Philadelphia, where needle exchanges and other programs have been in place decades longer than in New Jersey, procuring funding can be difficult. Scotti is a member of a hepatitis C task force there and said progress has been slow.
“Philadelphia is a fairly affluent city,” she said. “So even someplace like that, there’s a constant struggle to raise awareness, to get people tested and — when you test them — to get them treatment.”
Bellone Fabien, who counsels Brooks center clients on hepatitis C and HIV, said there’s a great deal of misinformation and fear associated with the disease. Some fear the side effects of treatment, and others are still battling with substance abuse. She often makes appointments for clients to get treatment, only to have them not show up.
“A lot of people are homeless, or they have no job or some other issue,” she said. “Putting food on the table is primary.”
While the effect of treatment can be different for each person, many experience fatigue or nausea.
That, Fabien said, is difficult to take for someone already struggling to get by, even if they’re on a weekend regimen that would allow them to work Monday through Friday.
“Most people cannot work while getting treatment because it hurts the body like chemo,” she said. “If you’re looking for jobs and told to get treatment, you’re not going to do it.”
Fabien said she tries to encourage her clients to stick with it, as the long-term risks are great.
Oberman can attest to that.
In the past month, he has undergone another round of treatment as the disease has aggressively attacked his new liver. For several weeks, Oberman went for blood work almost every day as the medicines did their work.
“No one ever thinks the bad things will happen to them,” he said. “You fight to live, and that’s it — it’s humbling.”
After two weeks of treatment with three different medicines, the level of virus in his blood came back undetectable, he said. But not everyone is so lucky. Indeed, not everyone knows there’s a problem.
“How many of those people are we going to find out over the next five years need a liver transplant or find out too late that they need a liver transplant?” Oberman said.
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