Health and Wellness

Lean on me: Hepatitis C support group provides hope and education

February 4, 2014 Heather Chin
BROOKLYN MEDIA GROUP/Photo by Heather J. Chin
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The men and women mill around the table of fruit, sushi, chocolate and juice, chatting and catching up on their lives over the past month. Some look tired, some mildly cheerful, but overall don’t appear to be anything more than any other small group gathering for a social event.

But this is not so much a social event as it is a lifeline.

These dozen or so people, most of them middle-aged, many of them Russian, and all of them Brooklynites, are gathered in a public meeting room at the Kings Highway Library for the January meeting of the “Hepatitis C: A Silent Killer” support group—a free monthly event where survivors, patients, family and friends can have the freedom and time to ask doctor(s) and one another questions about how this often overlooked, fatal disease will affect them.

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“Sometimes a person’s doctor doesn’t give info. In the support group, you can ask 10 to 20 questions,” said group organizer Gregori Romenski, who successfully underwent treatment for Hepatitis C several years ago and started the group in response to what he says is a huge need, especially in Brooklyn’s immigrant communities, where existing stigma is often magnified by a sense of isolation and lack of understanding about the disease.

“Last year, there were 29 people. This year, it’s around 22 to 25,” Romenski said. “A man once told me that if not for this support group, he would have killed himself. Therapy is very hard [to go through alone].”

For two years, the support group has welcomed a rotating list of guest doctors to explain diagnosis, treatment, symptoms and even the challenges of caregiving to group members. This month, gastroenterologist Dr. Sabina Berezovskaya had the honor. It was her second visit.

“The last time I was here, people asked many personal questions. I think a lot of times, people are reserved, but one someone begins speaking, more speak up,” explained Berezovskaya. “It is important for us as doctors to know why they are hesitant. There is often memory loss and other symptoms [that they are afraid or ashamed to mention]. I would recommend other doctors come [and] see the patient population because it is educational for us as well. We don’t get to spend time talking things over at length.”

Hepatitis C is a liver infection caused by a virus that has infected nearly four million people in the United States alone. It can be transmitted through infected needles, blood transfusions, organ or tissue transplants before 1992, kidney dialysis, contact with blood products, birth to a Hep C-infected mother, and sex with an infected person.

Many people recover quickly, but those who get chronic Hep C carry the disease for the rest of their lives, and can develop severe liver disease, liver-scarring and liver failure.

Berezovskaya says that, in Brooklyn, “Patients from the USSR/Soviet Union have fairly high incidence rate compared to the general population, [having often] contracted it via poor health facilities.”

Symptoms typically don’t manifest until years—even decades—after infection and can include jaundice (yellowing of the skin) and flu-like symptoms such as fatigue, poor appetite and muscle pain.

Treatment for chronic Hep C usually includes a long-term drug therapy regimen. The most commonly available drugs, Interferon and Ribavirin, often result in side effects of flu-like symptoms, fatigue, skin rash, depression, nausea, diarrhea and even anemia.

Treatment is expensive and may only get even more expensive, with two newly-FDA-approved drugs, Sovaldi and Olysio, having less severe side effects, but costing upwards of $1,000 a pill for a 12-week regimen. Some insurers cover part of the cost, and Romenski and others hope that more awareness of Hep C’s dangers and impact will lead to more insurers following suit.

As pharmacy student Emanuel Simhayev said at the January meeting, “Our job is to show insurance and other people that people are fighting for their lives. It’s serious. We have to show people and get them to consider covering it.”

The Hepatitis C Monthly Support Group meets on the last Tuesday of every month at 6 p.m. at 2115 Ocean Avenue. For more information, call 718-510-2103.


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