Gearing Up for the Second Annual African American Hepatitis C Awareness Action Day, C. Virginia Fields, President and CEO of the National Black Leadership Commission on AIDS, Helps Mobilize Communities Around HCV, HIV & Other Health Disparities
by Chael Needle
Photographed Exclusively for A&U by Alina Oswald
We know that 3.2 million Americans are living with chronic hepatitis C but are unaware that they are infected. We know that an overwhelming majority (over seventy-five percent) are baby boomers. What you might not know is that hepatitis C has hit hard across communities of African descent. It is estimated that twenty-two percent of those 3.2 million are African-American.
Among African Americans who are baby boomers, chronic liver disease is a leading cause of death—and this condition is often related to hep C. Additionally, hep C (HCV) infection among African Americans occurs at a higher rate than other ethnic groups. Among baby boomers, for instance, African Americans have one of the highest rates of infection, up to twenty to twenty-five percent. In fact, when it comes to HCV-related deaths, the mortality rate for African Americans is almost double that of non-Hispanic white Americans.
Even though new treatments for hepatitis C are available and have rendered the disease curable, a vaccine does not exist and infection may persist for decades without symptoms. Prevention and early treatment are key, yet stigma, a lack of access to care, and expense often create barriers to often lifesaving testing and care.
There’s no doubt that hep C is a deadly health disparity in the African-American community, and the National Black Leadership Commission on AIDS (NBLCA) knows it doesn’t need to be this way.
NBLCA has taken action in response to the hep C epidemic, which often hews closely to the HIV epidemic. On July 25, the NBLCA is co-sponsoring, along with Coalition on Positive Health Empowerment (C.O.P.E.) and Harm Reduction Coalition, the Second Annual National African American Hepatitis C Awareness Action Day. The NBLCA is encouraging organizations around the country to mobilize their communities around HCV harm reduction, testing, and treatment on or leading up to the day.
“In our ongoing work we have affiliates in eleven cities across the country, all chaired by members of the clergy. We reach out broadly in each one of those communities to develop partnerships and identify other community stakeholders to get the message out, through workshops, through public forums, through advocacy around specific issues,” explains C. Virginia Fields, MSW, president and CEO of NBLCA, about how the network helps to lead the response on issues like hepatitis C. Founded in 1987, NBLCA has affiliates in New York City, Nassau County, Albany, Syracuse, Rochester, Buffalo, Baltimore, Atlanta, Detroit, Tampa, and Washington, D.C., places where African-American communities have been severely impacted by HIV/AIDS.
So far, over fifty organizations have heeded the call. Activities include one-day summits, which target a spectrum of healthcare professionals; public policy town hall meetings, designed to educate community stakeholders and policy makers about the impact of hep C within the African-American community; community-based workshops and trainings around HCV health literacy; outreach and testing events to increase linkages to care and treatment; as well as the Action Day itself.
Already, HCV-related activities have sprung up or have been planned. A leadership forum on hep C took place at Howard University in D.C. in May. The Father to Father Support Group in North Charleston, South Carolina, offered HCV education and testing in the month of June. A community health fair in Tampa, Florida, on June 28 offered free and confidential HIV and HCV testing. On July 22, the Viral Hepatitis Summit at SUNY Downstate Medical Center in Brooklyn will raise awareness about the latest in HCV-related research and treatment, as well as the impact of HCV among African Americans.
And on the Action Day itself, in Washington, D.C., the NBLCA is partnering with HCV Linkage to Care Navigation at MedStar Washington Hospital Center for a day-long event that offers education and access to services for those living with and at risk for HCV infection.
The campaign’s goals are clear: increase hep C awareness, testing, access to treatment for those who are HCV-positive, and, in the long run, decrease the number of people infected.
“Two years ago, we were a part of a coalition to amend the New York State public health law around routine HIV testing, which now requires public health facilities and doctors to offer everyone between the ages of thirteen and sixty-four routine HIV testing because here, in this country today, we have over 50,000 new cases and African Americans are predominantly impacted,” says Fields, about the need for advocacy. “[This year] we have recently advocated, along with other organizations, for the State of New York to have the first hepatitis C legislation in the country.”
That bill, which requires medical practitioners to offer HCV testing to all patients born between 1945 and 1965, was signed into law last October. While New York was the first state to adopt HCV testing legislation, NBLCA hopes it won’t be the last. The non-profit is supporting similar bills in other states, including Maryland, Pennsylvania, Connecticut, Michigan, and Florida.
NBLCA also works to encourage the passage of federal legislation. The organization initiated The National Black Clergy for the Elimination of HIV/AIDS Act of 2009. The comprehensive proposal to address HIV/AIDS in African-American communities head-on resulted from a gathering of leaders—clergy, mayors, Congresspeople, health professionals, and state legislators, among others—that NBLCA brought together in 2007. The bill has yet to pass, though it has been introduced more than once.
Part of the work of NBLCA, the oldest and largest non-profit organization of its kind in the U.S., includes persuading policymakers to appreciate how legislation can help reduce health disparities and how funding on all levels of government can improve health outcomes across communities. But it also works with organizations to provide technical assistance, help shape public policy, and lend expertise to community development.
“So, through these various means the National Black Leadership Commission on AIDS’s ongoing work provides capacity building to institutions and organizations so they can better improve their work, with the broad groups that they work with in getting the message out, through training, advocacy, development of resources at the community level to make sure that organizations that provide treatment and care have the resources in order for them to do their job,” says Fields.
The need is urgent. According to CDC statistics reported in the February 7, 2014 edition of Morbidity and Mortality Weekly Report, African Americans make up forty-four percent of new HIV infections and also forty-four percent of people in the U.S. living with the infection. Considering that African Americans only compose twelve percent of the U.S. population, the numbers are alarming.
When it comes to how members of this community fare within the continuum of care—knowledge of status, linked to care, retained in care, adhering to antiretrovirals, and achieving viral suppression—the news is not good. The percentage of African Americans who have been diagnosed HIV-positive and making headway toward viral suppression are lower than for other racial/ethnic groups. In particular, African-American men were reported to have lower levels of care and viral suppression than African-American women. When we look at the numbers through the lens of transmission category, African-American men with HIV infection attributed to male-to-male sexual contact had the lowest percentage of linkage to care—71.6 percent.
Not surprisingly, the Commission’s top priorities this year are focusing on awareness, counseling and testing, and linking to care. “When there is early diagnosis and a person moves into treatment and gets care—and remains in care—the likelihood of having a better quality of life increases. So we’ve been focused a lot on encouraging people to become aware, get tested, get treated if needed. If one is negative, simply practicing ways to remain negative.”
The Commission is also currently working to enforce comprehensive sex education in public schools as a way to step up prevention efforts. “We must do more there because we have increased rates of sexually transmitted infections among young kids, as young as twelve years-old….” She adds: “The group with the highest rate of HIV infection is now our young Black gay men between the ages of thirteen to twenty-four. I can’t help but think that at age thirteen awareness education is important as they struggle with other issues, psychological and otherwise.”
NBLCA may focus on singular issues, like hep C, but it understands them within the complex matrix of multiple factors that impact HIV. It’s an approach that always keeps the whole person in mind along the continuum of care.
That’s why education needs to be paired with addressing stigma and discrimination, she says. And the NBLCA has mounted a national campaign to address these pernicious barriers. Says Fields: “We recognize that hepatitis C and HIV continue because of stigma and discrimination. Sometimes people don’t want to get tested because they don’t want to be stigmatized or ostracized and, if they don’t get tested, that of course is going to prevent them from seeking treatment.”
Asked what she thinks accounts for stigma and discrimination, she is quick to answer: “Racism. Homophobia.…And ignorance, too! The fact that people really still don’t have a full understanding about the transmission of HIV and how you can’t get it just by touching someone who is living with the virus. We still find to this day a lot of misinformation, and misinformation leads to stigma. It’s alarming.
“We’ve also focused a lot on healthier communities in general, trying to promote how to live, and [in turn] sustain healthy communities,” says Fields about NBLCA’s embrace not only of HIV and hep C, but cancer, high blood pressure, diabetes, and lifestyle changes that protect oneself, one’s family, and ultimately one’s community. But it is also about making large-scale social changes that benefit communities feeling the burden of years of racism, exploitation, and disenfranchisement. “Healthier” is achieved “through education, through awareness, and understanding the factors that impact a healthier community, like poverty. We recognize that poverty is a major driver as it relates to HIV/AIDS and other health disparities, so we’ve been doing a lot focused on: what must we do to address poverty as it impacts HIV/AIDS?”
She explains that poverty becomes a driver of disease because of the environment of risk it creates when it comes to relationships and sex. Practices such as trading sex for money or having sex with individuals whom you do not know often increase risk. Additionally, individuals often cannot negotiate safe sex with their intimate partners, face violence in relationships, and stay in situations because they are financially trapped—all may lead to situations where risk is heightened.
Access to housing is also important in the fight to eliminate health disparities. “Housing helps sustain their lives, as, number one, [individuals who are living with HIV and linked to care] are in a better position to stay on their medications because they have a stable living situation,” notes Fields, who tirelessly advocated for those experiencing homelessness as Manhattan Borough President in the eighties. “If you are out on the street, and you’re homeless and you’re living with HIV, you’re not thinking about taking your medications.
“Those are some of the key factors that we must consider and continue to work on.”
NBLCA is laying the groundwork to move into advocacy around decriminalizing HIV. “We do support it but we haven’t become a leader on that yet. We’re working with Catherine Hansenns at the Center for HIV Law and Policy and they’ve been doing phenomenal work. [As always] we partner with the leaders [on any particular issue] and use a lot of their research and data that they provide, especially around those states where we have various rights initiatives, where they have some of the Draconian laws when it comes to criminalization.”
NBLCA is committed to helping African Americans become more empowered when it comes to their own health and well-being. Says Fields: “I think education is the most powerful tool for people to become more responsible for their own health. There’s a lot of information out there, but it’s not getting to people who need it. So I think we need to do more on-the-ground work, more staff-intensive, more resource-intensive [work]. We have to so that we can help people understand what the risks are, whether it’s related to HIV, various forms of cancer, heart disease, or hepatitis C.”
To learn more about the Second Annual African American Hepatitis-C Awareness Action Day and how to participate, or NBLCA in general, log on to: www.nblca.org.
Chael Needle writes A&U’s monthly Treatment Horizons column.