STORY4

What We Need Now

Identifying Hot Spots and Community Education Needs

Debbie Delgado- Vega, founder and CEO of Latino Organization for Liver Awareness, provided insight from her own experience as a liver transplant recipient and community health activist about community needs and the extent of the hepatitis C problem in the prison community.

During the past three years Latino Organization for Liver Awareness (LOLA) has led a major grassroots public education campaign targeting Latinos with hepatitis C. The group provides bilingual information, educational groups, support groups, referral services and a toll-free number. They have put the message across in newspapers and television, through public service announcements, and through bilingual educational materials such as a simple brochure written at the fifth-grade reading level.

But Delgado-Vega reports that many who call LOLA say their doctors have told them that treatment isn’t needed yet. “We find the response of these physicians frustrating,” she said. “All hepatitis C virus medical information available indicates that early treatment of hepatitis C produces the best response.” Current combination therapy offers a more than 50 percent response rate, controlling and potentially eradicating the virus.

For those who lack health insurance or access to Medicaid the prognosis is poor: “Our support groups are filled with a large proportion of poor and or working-class Latino Americans, who were either diagnosed far too late or too close to the end stage of this disease,” Delgado-Vega said. The organization provides these people with clinical trial information and refers them to transplant centers.Blocked Access to Transplants

“It is bad enough to have to face the rapid growth of this threat among Hispanics, if it were not for the fact that the nation is experiencing a huge deficit of organs,” Delgado-Vega said. “I personally waited two and a half years for my liver transplant. Minorities, particularly Latinos, have the lowest percentage of those who receive organs. Serious issues, such as poverty, lack of information, early treatment and insurance, make this a matter of economics and access.”

LOLA data show that an average of one or two of the people it assists die each month as a result of complications from hepatitis C while waiting for a transplant.In the Prison System

The prevalence of hepatitis C in the prison system is believed to be about 20 percent, but Delgado-Vega said her organization suspects it is much higher. Hepatitis C is “exploding” in the New York state prison system, one of the areas LOLA has targeted for information about the disease, Delgado-Vega reports. “We receive hundreds of letters from inmates indicating that they are hepatitis C positive, and these letters continue to increase. Despite the Department of Correction’s hepatitis C guidelines, many have also stated that they are unable to receive testing and treatment and/or information.” Information often is unavailable in Spanish.

Our support groups are filled with a large proportion of poor and working class Latino Americans, who were diagnosed far too late.

Delgado-Vega related that her brother is incarcerated. He has told her information isn’t available in Spanish, that testing is available only to some new inmates, and that inmates participate in high-risk behavior, including sharing toothbrushes and tattooing. He has tested positive for the disease.California State Senator Richard G. Polanco added that 40 percent of the women in California’s correctional system have hepatitis C, calling it a “silent killer” and calling for appropriations to the budgets of departments of correction. The danger of transmission to correctional officers was also raised. Several legislators, including Senator Polanco, suggested using prison HIV programs as a model to handle the problems.After release from the prison system, hepatitis C sufferers often join the pool of those without medical insurance or access to good healthcare. There is also the danger of transmission, and the human and economic costs of continued liver damage. LOLA tries to reach out to prisoners with hepatitis C before their release, to refer them to doctors and other services.Other Special Populations

Other legislators shared their experiences with special populations and their ideas for solutions to the hepatitis C problem. State Reperesentative Evelyn Mantilla of Connecticut, which has recently established an office of multicultural health, conveyed that the office has lacked resources to do the outreach it would like. She also spoke about reaching out to the lesbian, gay and transgender community, citing the work of the Latino Lesbian Gay Bisexual Organization (LLEGO).

Texas State Representative Miguel D. Wise asked about hepatitis C within the veteran population. Ms. Jo Anne Hargraves, Government Affairs Executive with Schering-Plough External Affairs Inc., responded that there was a move to classify the disease as service-related. Delgado-Vega cited the work of Veterans Aimed Toward Awareness, a group for which LOLA provided educational material in Spanish.