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NORA Addresses “the Changing Face of AIDS” at Capitol Hill Briefing
The National Organizations Responding to AIDS (NORA) coalition, which represents labor, religious, professional, and advocacy groups, held a briefing entitled The Changing Face of AIDS. The briefing was held in collaboration with the Congressional Black Caucus Health Braintrust and the Congressional Hispanic Caucus. AIDS Action, NORA’s convening organization, was represented at the event by its full staff.
The purpose of The Changing Face of AIDS briefing was to update Congressional staff about HIV’s impact on African Americans, Latinos, Native Americans, and Asian Pacific Islanders. Though these populations have always been affected by the HIV epidemic, the number of HIV and AIDS cases in recent years has risen at alarming rates for these minority communities. In fact, minority populations now account for the majority of new HIV infections and AIDS cases in the United States. The briefing was opened by Representative Hilda Solis, (D-CA), chair of the Congressional Hispanic Caucus Health Braintrust. She discussed the importance of groups like NORA in the Congressional process. For they help the Congress to advance its thinking in positive ways and move forward in efforts to eradicate HIV infection. She also revealed that it is difficult to talk about and work on HIV related issues with either Democratic or Republican colleagues in the House; however, she reminded the audience, it is important that we all continue to stay the course. These challenges notwithstanding, Representative Solis volunteered that HIV is a high priority issue for the 20-member Congressional Hispanic Caucus, since the Latino community has seen significant increases in HIV and AIDS cases. She asserted that HIV prevention literature should be written in a language that is clearly understood by all in the Latino community. Before concluding her remarks, Representative Solis shared her concern about the closing of some health organizations and the merging of Latino-operated, community-based AIDS organizations that serve HIV positive Latino clients in her district with other organizations. These decisions, which are often due to budgetary constraints, result in the loss of vital services within her Latino constituencies’ “barrios”—or neighborhoods. Following Representative Solis’ presentation, Senior Legislative Assistant for Health Policy Aranthan Jones spoke on behalf of Delegate Donna Christian-Christensen (D-VI), the Chair of the Congressional Black Caucus Health Braintrust. He started his remarks with a quotation from the Ralph Emerson classic, Invisible Man. “I am invisible because no one wants to see us.” Fiscally tight times, Mr. Jones continued, should not make people in need of HIV services invisible. To this end, he added that NORA members and other health organizations must continue to advocate on behalf of those most in need of federal HIV/AIDS funding.
The moderator for the briefing, Dr. Georges Benajmin, MD, FACP, who serves as executive director of the American Public Health Association (APHA), delivered remarks on health disparities and how they contribute to The Changing Face of AIDS. Dr. Benjamin stressed that the elimination of racial and ethnic disparities in health is an important national goal, a quality of life issue, and an equity issue. He shared data on comparisons of health service use, insurance coverage, and reasons for postponing care among different racial and ethnic groups. He explained that African Americans, Latinos, Native Americans, and Asian Pacific Islanders are being treated for HIV and often AIDS far later than is advisable. Further, he charged, their doctors are often culturally insensitive and sometimes they are not even unaware of the best practices in HIV and AIDS care. The next speaker was Jennifer Kates, MA, MPA, director of HIV Policy at the Kaiser Family Foundation. Ms. Kates presented data on the trends of AIDS cases by racand ethnicity from 1993 to 2001. While this data show a dramatic decline in AIDS cases in the white community, from 48,090 cases in 1993 to 13,204 in 2001, the decline in AIDS cases for the African American and Latino communities was less profound. For African Americans, AIDS cases dropped from 38,012 in 1993 to 20,918 in 2002, and in the Latino community, AIDS case rates for the same years fell from 18,625 to 8,183.
Ms. Kates then cited alarming statistics from the Centers for Disease Control and Prevention (CDC) that revealed the disproportionately high number of HIV cases within minority communities. According to this 2002 data, the estimated trends in new HIV infections among women were 82 percent minority and 18 percent white. The estimated trends for new HIV infections among men were 70 percent minority and 30 percent white. Ms. Kates also discussed the major six-city study of young men (aged 23 to 29) who have sex with men. The study found the prevalence of HIV for African Americans and Latinos to be 46 percent; whereas, HIV prevalence for whites was only 7 percent. According to Ms. Kates, these numbers rival the rates in areas of sub-Saharan Africa. Gem Daus, policy director of the Asian and Pacific Islander American Health Forum, followed Ms. Kates’ remarks by informing attendees of the briefing that the Asian Pacific Islander (API) community is 4.5% of the United States population. Despite its relatively small size, the U.S. API community represents a diverse population from 40 different countries, speaking hundreds of languages.
According to national data on HIV, one percent of the nation’s AIDS cases is among API. However, Mr. Daus believes that Asian Pacific Islanders could account for a far greater number than the data suggest. He attributes the low estimate to several factors. First, there is a very low rate of testing within this community, which means that an indeterminate number of Asian Pacific Islanders could be HIV positive and not know it. Second, many API territories comprise multiple islands, so it is often necessary to travel from one island to another for medical care, which is not always possible. Third, HIV care is generally sought very late by Asian Pacific Islanders. By the time they seek care, they often have AIDS-defining conditions like PCP (pneumocystis pneumonia). In closing, Mr. Daus noted that “less than two percent of one percent” of federal grants go to HIV programs exclusively for the Asian Pacific Islander community—a level that is not sufficient to cover the true needs of this community. The three speakers who followed Ms. Kates all openly identify as being HIV positive. Each shared with briefing attendees, his or her greatest concerns with the federal government’s response to HIV.
Michael Martarano, a peer educator for Advocates for Youth assessed the sex education he received in high school which, he stated, was not different than the sex education in schools today. According to Mr. Martarano, the standard curricula for sex education does not adequately prepare young people for the realities of sex, nor the responsibilities that go along with it, because their scope is too narrow, excluding many common forms of sexual expression that can expose people to sexually transmitted diseases (STD), including HIV. He took the opportunity to challenge the Congress to “care for its people.” The federal government must continue its role in providing health care for those who are in need of HIV services, but it must also adequately prepare young people for the complex nature of sexual behavior. Ms. Yvonne Green, a caseworker for the HIV Community Coalition in Washington, D.C. and an advocate for communities living with HIV, shared that she has been HIV positive for 11 years when she had no understanding of the disease—“Where it came from, what it was, and how I got it.” She continued by mentioning some of the changes she has seen in the “face of HIV.”
“We are people of all races: women, men, adolescents, and children,” she began. “We are professionals and, with the help of the current HIV treatment therapies, more of us are returning to work.” The other change in the epidemic that Ms. Green discussed is the fact that heterosexual contact is the greatest risk factor for women today. She continued, “Often women are not aware of their partner’s risk factors, and we must take responsibility for our own health by always using protection.” Jorge Zepeda, an advocate for communities living with HIV recounted his experience living with HIV. He was diagnosed with HIV last year when he got very sick. He had no idea he was HIV positive, so he was shocked by the diagnosis. To this day, he does not know how he contracted the virus. Since receiving his diagnosis, Mr. Zepeda has become very depressed and it is difficult for him to take all the antiretroviral medications he has been prescribed. Mr. Zepeda described his reality of living with HIV, saying the depression he experiences discourages him from leaving the house. He concluded his remarks with, “It is hard; it is very hard.”
Dr. Benjamin then closed the briefing by moderating the lengthy question-and-answer period that followed the speakers’ remarks. This lively exchange with the panel and Congressional staff covered a number of topics, including additional funding and resources, the HIV rapid test, data collection, HIV in prison, the immigrant population and HIV testing, abstinence only sex education, the Minority AIDS Initiative, and community health centers.
The final question of the day was posed by AIDS Action’s Executive Director Marsha Martin. She asked the panelists, “If you had one wish to be granted by Congress that didn’t call for increased funding, what would you wish for?” The panelists’ wish list included: truthful communication with children and youth about HIV; new ideas on ways to teach young people about sex and HIV; and universal health coverage (in this case, the panelist defended the choice by saying it would not call for additional spending because the U.S. is already spending the funds on late-stage medical care). On a lighter note, one panelist wished that certain Members of Congress not run for re-election, while another wished that Congress would help parents to be “the real anti-AIDS messenger.” Briefing Presenters Speakers |
