When Betty Vega first learned that she had Hepatitis C eight years ago, she remembers being stunned. Vega, 58, had been aware of having elevated liver enzymes in her blood, but doctors had assured her they came from benign sources. After all, says Vega – a music promoter in Park Slope – there was no apparent cause, with more than 20 years past since any college-era sampling of drugs, a primary risk factor that doctors often say necessitate a test for the disease.
Upon learning of her positive diagnosis after a perceptive doctor suggested she get additional testing, Vega was fearful and confused. “From what I had read [about hepatitis C], I was convinced I was going to die. I thought it was something that had to be much worse than HIV,” she recalls. In fact, a subsequent liver function test would show that Vega was in the second stage of hepatitis C infection, a point at which the liver has become inflamed and mild scarring, or fibrosis, had begun to form.

Vega began to educate herself and after finding a doctor who specializes in hepatitis C treatment, she was able to clear the virus from her body in 2007, six years after first being diagnosed. That positive outcome is “on the rarer side,” she says. According to the Centers for Disease Control, up to 70 percent of people with the virus will contract chronic liver disease, and up to 20 percent will develop cirrhosis.

Today Vega considers herself lucky that the disease was caught at a treatable stage, but her work as a patient advocate and support group facilitator for chronic hepatitis C victims has prompted her to get involved in both the politics and policy surrounding the disease. And, even as she’s getting a new support group going at Long Island College Hospital in downtown Brooklyn, she believes not nearly enough is being done to educate people about the disease. Vega does not appear to be alone in that – this past July, the state’s health department announced the launch of a $270,000 public awareness campaign that will use billboards, subway and bus shelter advertisements to promote early testing and treatment for the disease. “Over 200,000 New Yorkers have hepatitis C. Are you one of them?” the campaign asks.

The campaign is a continuation of an earlier educational effort for viral hepatitis diseases that was first started in 2004 after many health care providers and hepatitis C advocacy groups called for the addition of a toll-free hotline in both Spanish and English. So far, more than 400 people have called in from throughout the state to get basic information on the disease since the campaign was re-launched in mid-July.

Under the radar

A health bulletin from the Department of Health and Mental Hygiene (DOHMH) released several years ago says that 200,000 to 300,000 New York City residents are infected with the virus and most are currently unaware of their status. The most conservative estimate labels 2.2 percent of the city’s [non-homeless, outside-prison] adults infected, higher than the nationwide average of 1.8 percent.

Yet, some advocates say, the amount of funding currently available for hepatitis C education and awareness is not nearly proportional to the number of people at risk of contracting the disease.

Part of the reason that advocates for hepatitis C say education about the disease is needed is because of hepatitis C’s elusive nature. Unlike other viral hepatitis strains, there is no vaccine against the disease and it has to be tested for specifically: victims often exhibit no visible symptoms for decades after infection. As a result, there is no way to tell exactly when a person may have become infected or even pinpoint the exact number of infections that exist throughout the city.

And although the sharing of needles with an infected person, most often through intravenous drug use, is thought to be the most common way the disease is contracted in New York City, someone can become infected in any circumstance where they come in contact with an infected person’s blood. In fact, among the many task force committees that provide resources for sufferers is one that targets how to control infection among the city’s many tattoo and piercing parlors, nail salons and barber shops as well.

According to the latest data on newly reported people in New York City living with chronic hepatitis C, the most common age for new diagnoses is between 50 and 59, which adds another challenge to the city’s effort to get people to properly screen themselves for the disease.

“A lot of people who may have done drugs [in the past] have stopped,” says Eric Rude, director of the Office of Viral Hepatitis Coordination at DOHMH. “So they’re probably not going to be perceived to be at-risk…a general [education] campaign would be appropriate.”

Rude says a significant portion of the money the department receives through the state’s health budget goes towards public awareness efforts around the need for early screening, in addition to helping to fund several comprehensive hepatitis C treatment centers throughout the city.

In order to reach populations most at risk for contracting and spreading the disease, DOHMH has worked to better coordinate testing and treatment resources through its support of several interconnected task forces made up of providers, local health clinics and support groups that meet several times a year. Rude adds that free testing for hepatitis C is done in many of the city’s STD clinics, as well as through community-based organizations that are part of the city’s task forces.

Although the $1.19 million in state funding that went towards hepatitis C programs in New York State for the 2009-10 fiscal year is a reduction from the $1.58 million allocated the year before, Shari Newman-Foster of the statewide hepatitis C advocacy group, Status C Unknown, says the inclusion of funding is still a hard-won gain for hepatitis C advocates in the state.

“Governor Paterson cut funding for all new programs by 50 percent,” explains Newman-Foster. “But [the state] kept the line item for hepatitis C [programs].” That’s one of several signs she sees of the state taking more action around the disease.

Grassroots efforts

Mireya Delgado, a senior patient care manager with the Latino Organization for Liver Awareness (LOLA), a Bronx-based nonprofit that works primarily with Spanish-speaking clients dealing with chronic hepatitis C, also points to the toll-free hotline in both Spanish and English as an improvement in the state’s efforts.

Delgado says that prior to her nonprofit’s founding in 1994, there was little information on severe liver disease and the effects of chronic hepatitis C in Spanish. The organization also operates its own bilingual hotline.

When City Council restored $480,000 to a hepatitis C public education campaign, it noted that of the 200,000 to 300,000 New York residents estimated to be infected with hepatitis C, approximately 40 percent are Latino.

Through the grant from the city council, along with matching funds from the state, LOLA was able to use $750,000 in funding for hepatitis C education for fiscal years 2006-2008.

“Media is very costly,” explains Delgado. “We do a lot of community outreach, presentations at rehab centers, clinics, comprehensive medical centers and health fairs. With the grant we were able to conduct trainings and at one point we were able to train more than 200 trainers who were in turn able to go back to their agencies.”

But while Delgado acknowledges that the type of support needed to do community education for hepatitis C programs can be expensive, she says it pales in comparison to the cost of doing nothing for the largely Latino population she works with, which she says is often unable to access health insurance due to their immigration status.

“We’re seeing cases that are often diagnosed too late and they’re not a candidate for treatment … much more awareness is needed [for people] who are still not aware and who are walking around with it.”

– Nekoro Gomes