HIV Specialists Meet to Identify, Help Those Who Are Falling Through the Cracks
WASHINGTON, May 31, 2012 /PRNewswire-USNewswire/ — With mounting evidence that many Americans remain the invisible people with HIV/AIDS who live in poverty, have limited health literacy, are diagnosed late in the course of their disease, and therefore, are the most likely to die of AIDS, leading members of the HIV/AIDS community called for a new mobilization to find, test and treat those people with HIV who are falling through the cracks of the healthcare system.
Meeting in San Francisco at a conference convened by the Forum for Collaborative HIV Research, HIV experts and advocates mapped a pathway to reduce disparities in HIV/AIDS, applying the lessons learned from the Bay Area where disparities exist across the spectrum of care. In San Francisco alone, it is estimated that as many as a third (33%) of the African American men who have sex with men (MSM) live with HIV. Moreover, across the Bay Area, almost a third (32%) of those infected with HIV and especially low-income African Americans and Hispanics, older residents, and immigrants are “late testers” who develop AIDS within a year of diagnosis and enter the healthcare system when treatment outcomes are poor.
“If there was ever a time when we need to confront disparities in HIV/AIDS, it is now,” said Veronica Miller, Ph.D., Director of the Forum. “We now know that effective interventions are changing the standard of care for populations at risk in the Bay Area. Now, the goal is to apply these lessons learned so more communities will have the tools to address disparities in HIV that are keeping too many vulnerable people from receiving quality care at all points in the process — from screenings and diagnosis to access to state-of-the-art therapies and ongoing treatment.”
With the Bay Area as a model for how communities are responding to reduce HIV transmission and better support people living with HIV, the conference attendees agreed that confronting disparities in HIV requires a multi-level approach where state and community-supported programs combine proven HIV prevention methods – such as condom availability, HIV testing, and antiretroviral therapy for diagnosed positives and high risk negatives – with novel interventions that deal directly with the root causes of HIV disparities. The most significant factors contributing to disparities in HIV infection are race/ethnicity, poverty and neighborhood conditions, STD prevalence, incarceration, homelessness, and access to quality healthcare services.
Disparities: The Real HIV/AIDS Epidemic
Providing the most up-to-date information on the extent of HIV/AIDS in the U.S., Grant Colfax, M.D., President Obama’s new Director of the Office of National AIDS Policy, termed growing disparities in HIV infection rates the “real” HIV/AIDS epidemic today. Of the estimated 50,000 new cases of HIV that occur each year in the U.S., infection rates in Latinos are nearly three times as high as for whites and seven-fold the rate in African Americans as in whites. Of added significance, black women are especially hard-hit by the HIV/AIDS epidemic, accounting for 30% of the estimated new HIV infections among all blacks in 2009.
But what Dr. Colfax says keeps him awake at night is the 48 percent rise in new HIV infections among young black MSM ages 13 to 29 years. Reporting that sexual behaviors alone do not account for this increase, Dr. Colfax cited three factors that are directly linked to HIV disparities, especially in the black community: not knowing one’s HIV status; stigma of HIV and homosexuality, which can impede the use of prevention services; and limited access to health care services like testing and treatment.
Dr. Colfax also called attention to the many Americans with HIV who remain undiagnosed – an estimated 200,000 people – where stigma, discrimination and distrust of the healthcare system are significant factors contributing to the unequal burden of HIV/AIDS among communities of color, sexual minorities and the poor. Noting that discrimination still occurs within today’s medical setting and affects the personal attitudes and perceptions of some healthcare providers, the Director of the Office of National AIDS Policy said one of the ongoing challenges is educating clinicians about HIV prevention and treatment, especially at a time when there are not enough qualified providers to increase HIV testing and ensure availability of quality medical care. The National AIDS Policy Director further called for an increased focus on educating minority populations to dispel the expectation of inadequate care that has kept many underserved people with undiagnosed HIV from getting tested and linked to care.
Assessing the Impact of Same-Sex Marriage and the Affordable Care Act
Although disparities in HIV are now at epidemic levels, two Administration policies have significant potential to improve disease outcomes – President Obama’s support for same-sex marriage and the changes in healthcare coverage that either have or will be taking place under the Affordable Care Act (ACA). Among the “meaningful” changes now taking place under ACA, Dr. Colfax pointed to an additional 54 million Americans who are now eligible for preventive care. And by 2014 when ACA is fully implemented, Dr. Colfax said that as many as 30% of the HIV/AIDS population now without health insurance will be enrolled in the Medicaid program and have access to the package of Essential Health Benefits (EHB) all the state health exchanges must offer their beneficiaries. Among the benefits available under EHB are preventive and wellness services, chronic disease management, laboratory services and prescription drug coverage.
Despite this great promise, implementing the Affordable Care Act will not be easy, and not just because of lingering questions about whether the Supreme Court will uphold the law, strike it down entirely or overturn the individual mandate that citizens must carry health insurance. Using California as an example of how states are transitioning HIV care to new systems, Anne Donnelly, Director of Public Policy for Project Inform, one of the most influential community-based HIV treatment information and advocacy organizations, reported that a range of immediate challenges face the public health community, including:
- Moving state Medicaid programs to managed care models
- Providing care to immigrants and especially undocumented individuals who will not be eligible for coverage under Medicaid and the health insurance exchanges
- Communicating the many new changes in low income health programs, eligibility requirements and new provider rates to healthcare professionals and individuals
But of greatest concern to the HIV community, stressed Ms. Donnelly, are addressing two important needs of those individuals with HIV who are at highest risk for HIV disparities – providing a safe transition to new systems of care for vulnerable populations and ensuring that the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act continues to fill the gaps between what is covered by the Essential Health Benefits package and what is needed to keep people with HIV in treatment. Accordingly, Ms. Donnelly urged HIV advocates to press for continued Ryan White funding so people with HIV will have ongoing access to such needed services as case management, nutrition counseling, help with transportation to clinical care settings and peer support services.
“Implementing the Affordable Care Act requires tremendous systems change, which always involves unintended consequences,” said Ms. Donnelly. “It’s clear that there will be a critical ongoing need for Ryan White services that support health but are not completely medical in nature, such as dental care and social support programs.”
Lives Cut Short in the Bay Area; What Is Working to Reduce Disparities in HIV
While documenting the extent of and causes of persistent disparities in HIV nationally, the conference focused specifically on the real-life impact of disparities in poor neighborhoods of San Francisco, Oakland and San Jose where new data from the Health Equity Institute reveal major differences in life expectancy between more affluent and poorer communities. Specifically, the Institute compared the life spans of people residing in the prosperous areas of Russian Hill in San Francisco and the Oakland Hills in Alameda County with those living in the underserved communities of Bayview/Hunter’s Point in San Francisco an in West Oakland, finding that residents of the poorer neighborhoods died an average of 14 years earlier.
Calculating the cost of poverty in the Bay Area alone, the Health Equity Institute estimates that every additional $12,500 in household income buys an extra year of life expectancy. Reinforcing these findings, Wendy Leyden, a researcher with Kaiser Permanente Northern California, presented the results of a study of 10,518 HIV-infected adults followed between 1996 and 2006, which found no differences in mortality between white and minority individuals with HIV when they are insured and have equal access to care.
Using these findings as a call-to-action, the conference emphasized the role of community- based organizations in confronting the barriers that prevent vulnerable populations from receiving quality care, highlighting a range of innovative programs that are working to increase HIV testing and treatment adherence among high-risk youth, HIV-positive women, injecting drug users and crack smokers, those with mental illness, and men and women with HIV who are over age 50. Among the programs featured were:
- Cultural Odyssey Troupe in San Francisco – that developed The Medea Project: Theater for Incarcerated Women in conjunction with the Women’s HIV Program (WHP) at University of California, San Francisco to encourage HIV-positive women to write out their personal stories and make known their HIV status in a public theatrical performance called Dancing with the Clown of Love
- The Downtown Youth Clinic at the East Bay AIDS Center in Oakland – which conducts a social network HIV testing program where high-risk African American and Latino youth ages 13-24 refer acquaintances for testing
- Glide Foundation in San Francisco – where a research team distributes crack pipes and materials on safer smoking techniques to crack smokers in the Tenderloin District, creating the opportunity to educate this underserved population about their risk for HIV
- Positive Care Center at UCSF – that developed the Urban Telemedicine Program as a new way to provide nutrition counseling, pharmacy advice and other HIV management services to underserved people with HIV via real-time, secure broadband video connections in urban settings
- Health Equity Institute, San Francisco State University – that is studying Peer Navigation as a strategy for overcoming distrust and stigma in African American men so they can be tested for HIV and linked to care.
Held in association with the University of California, San Francisco Center for AIDS Research and San Francisco Department of Public Health, the conference – Overcoming Health Disparities in the Bay Area: Using HIV/AIDS as a Model – took place May 23-24 and drew nearly 150 scientists, clinicians, public health leaders and advocates, including many from the Bay Area.
About the Forum for Collaborative HIV Research
Part of the University of California (UC), Berkeley School of Public Health and based in Washington, DC, the Forum was founded in 1997 as the outgrowth of a White House initiative. Representing government, industry, patient advocates, healthcare providers, foundations and academia, the Forum is a public/private partnership that organizes roundtables and issues reports on a range of global HIV/AIDS issues. Forum recommendations have changed the ways that clinical trials are conducted, accelerated the delivery of new classes of drugs, heightened awareness of TB/HIV co-infection, and helped to spur national momentum toward universal testing for HIV. http://www.hivforum.org.