Local Woman Leads Charge Against Hepatitis C
To fight a highly prevalent yet low profile blood-borne disease, Betty Vega of Windsor Terrace wants to see her picture on the cover of the New York Times magazine with the caption: Faces of Hepatitis C.
By Emily Keller
Comment
To fight a highly prevalent yet low profile blood-borne disease, Betty Vega of Windsor Terrace wants to see her picture on the cover of the New York Times magazine with the caption: Faces of Hepatitis C.
Vega – a Hep C survivor who was told for years by doctors that her elevated liver enzymes were nothing to worry about prior to being diagnosed with the disease – has made Hep C awareness her mission.
When she found out she had contracted the virus, Vega said, “I cried like crazy because I didn’t have a clue what this was about.”
Now, as a founding member of the Brooklyn Hepatitis C Task Force – an agency of the city’s Health Department that is an offshoot of one in the South Bronx – Vega is working to modify the popular belief that the virus she recently cleared is transmitted primarily through intravenous drug use.
“This is not just about people who shot heroin or shot drugs,” Vega said at a recent task force leadership breakfast at Borough Hall, 209 Joralemon Street. “It’s a huge part of it, but there’s a whole bunch of us out there who don’t have a clue how we ever got it.”
Jason G., who was diagnosed with Hep C in 1994 after he applied for a paid medical study in college and was unexpectedly turned down, is one of them.
Gondo, who has never used intravenous drugs, surmises that he contracted the virus through a small blood transfusion he received as a baby. He has since cleared the virus through treatment, and is also working to spread the word about it.
“Since I’ve become more comfortable with it, and more comfortable with telling people I have it, I’m surprised with how many people I meet who tell me, ‘I have it,’ or ‘My friend has it,’” said Gondo. “I’m surprised that there isn’t more testing done about it. All my friends that I’ve told...they don’t know much about it. They’ve never been tested for it, and these are people who frequently get tested for HIV.”
The low rate of testing makes it difficult for the Health Department to accurately assess the number of Brooklynites who have the virus, which is largely unfamiliar even to doctors, and spread only through blood-to-blood contact.
The virus, which attacks the liver and causes jaundice and fatigue, was recognized by scientists so recently that it had no name until the early 1990s. Many of those who are infected have no symptoms for years, and sometimes decades. There is no vaccine, although a difficult treatment that takes several months is often successful in clearing it.
In 2004, more than 3,000 Hep C cases were confirmed in Brooklyn – more than in any other borough. The highest rates are in Williamsburg and Bushwick, where the virus is two-and-a-half times more prevalent than in the rest of the borough.
Eric Rude, the Hepatitis Coordinator for the Health Department, called that estimate an under-report, and said he expects the number of Americans who die each year from the virus – which is currently between 8 and 10,000 – to rise.
“We expect that to go up,” he said. “We haven’t seen the worst of the disease yet. It’s going to get worse before it gets better.”
However, Julie Stewart, Director of Clinical Services for the PATH Center at Brooklyn Hospital, said rises in the number of recorded Hep C cases may be due in part to increased screening and testing, which many say remains far too low.
The Health Department requires doctors and hospitals to report all positive Hep C cases, but many do not comply, or do not even know their patients have the virus.
Hep C is the second most common cause of HIV-related deaths – after AIDS – according to Jules Levin, Executive Director of the National AIDS Treatment Advocacy Project. However, Hep C is often missing from death certificates, sometimes because the deceased have never been diagnosed with it.
Some advocates surmise that Hep C testing is unpopular because the populations most heavily impacted by the virus are intravenous drug users, incarcerated people, individuals with HIV/ AIDS, and people with low-incomes who are under-served by the medical establishment and have limited access to medical information.
The Health Department estimates that Hep C affects 60 to 90% of injection drug users, 16 to 41% of incarcerated people, and 42% of homeless people. Twenty-five to thirty percent of people with HIV/ AIDs are also infected with Hep C.
“That’s why it gets little attention,” said Levin, a survivor of both viruses.
The Brooklyn Hepatitis C Task Force is organizing a series of support group meetings to bring more attention to the virus, beginning at 6 p.m. November 7 at New York Methodist Hospital, 506 Sixth Street. For more information (718) 780-5367 or email Betty Vega at BettyV444@aol.com.
Vega – a Hep C survivor who was told for years by doctors that her elevated liver enzymes were nothing to worry about prior to being diagnosed with the disease – has made Hep C awareness her mission.
When she found out she had contracted the virus, Vega said, “I cried like crazy because I didn’t have a clue what this was about.”
Now, as a founding member of the Brooklyn Hepatitis C Task Force – an agency of the city’s Health Department that is an offshoot of one in the South Bronx – Vega is working to modify the popular belief that the virus she recently cleared is transmitted primarily through intravenous drug use.
“This is not just about people who shot heroin or shot drugs,” Vega said at a recent task force leadership breakfast at Borough Hall, 209 Joralemon Street. “It’s a huge part of it, but there’s a whole bunch of us out there who don’t have a clue how we ever got it.”
Jason G., who was diagnosed with Hep C in 1994 after he applied for a paid medical study in college and was unexpectedly turned down, is one of them.
Gondo, who has never used intravenous drugs, surmises that he contracted the virus through a small blood transfusion he received as a baby. He has since cleared the virus through treatment, and is also working to spread the word about it.
“Since I’ve become more comfortable with it, and more comfortable with telling people I have it, I’m surprised with how many people I meet who tell me, ‘I have it,’ or ‘My friend has it,’” said Gondo. “I’m surprised that there isn’t more testing done about it. All my friends that I’ve told...they don’t know much about it. They’ve never been tested for it, and these are people who frequently get tested for HIV.”
The low rate of testing makes it difficult for the Health Department to accurately assess the number of Brooklynites who have the virus, which is largely unfamiliar even to doctors, and spread only through blood-to-blood contact.
The virus, which attacks the liver and causes jaundice and fatigue, was recognized by scientists so recently that it had no name until the early 1990s. Many of those who are infected have no symptoms for years, and sometimes decades. There is no vaccine, although a difficult treatment that takes several months is often successful in clearing it.
In 2004, more than 3,000 Hep C cases were confirmed in Brooklyn – more than in any other borough. The highest rates are in Williamsburg and Bushwick, where the virus is two-and-a-half times more prevalent than in the rest of the borough.
Eric Rude, the Hepatitis Coordinator for the Health Department, called that estimate an under-report, and said he expects the number of Americans who die each year from the virus – which is currently between 8 and 10,000 – to rise.
“We expect that to go up,” he said. “We haven’t seen the worst of the disease yet. It’s going to get worse before it gets better.”
However, Julie Stewart, Director of Clinical Services for the PATH Center at Brooklyn Hospital, said rises in the number of recorded Hep C cases may be due in part to increased screening and testing, which many say remains far too low.
The Health Department requires doctors and hospitals to report all positive Hep C cases, but many do not comply, or do not even know their patients have the virus.
Hep C is the second most common cause of HIV-related deaths – after AIDS – according to Jules Levin, Executive Director of the National AIDS Treatment Advocacy Project. However, Hep C is often missing from death certificates, sometimes because the deceased have never been diagnosed with it.
Some advocates surmise that Hep C testing is unpopular because the populations most heavily impacted by the virus are intravenous drug users, incarcerated people, individuals with HIV/ AIDS, and people with low-incomes who are under-served by the medical establishment and have limited access to medical information.
The Health Department estimates that Hep C affects 60 to 90% of injection drug users, 16 to 41% of incarcerated people, and 42% of homeless people. Twenty-five to thirty percent of people with HIV/ AIDs are also infected with Hep C.
“That’s why it gets little attention,” said Levin, a survivor of both viruses.
The Brooklyn Hepatitis C Task Force is organizing a series of support group meetings to bring more attention to the virus, beginning at 6 p.m. November 7 at New York Methodist Hospital, 506 Sixth Street. For more information (718) 780-5367 or email Betty Vega at BettyV444@aol.com.
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