This year, the two most important things to recognize on National Black HIV/AIDS Awareness Day are that African-Americans continue to bear a disproportionate burden of HIV and that new tools are now available to respond to this disparity.
According to the U.S. Centers for Disease Control and Prevention, African-Americans account for 47 percent of all new HIV infections in the United States—despite representing only 12 percent of the total population. Black gay men, transgender individuals, and other men who have sex with men (MSM) continue to experience alarming increases in HIV incidence each year, particularly among those aged 13–24 (up nearly 21 percent since 2008). Encouragingly, new HIV infections among black women have declined in recent years, yet more than half (64 percent) of all women diagnosed with HIV in 2011 were African-American. We do not need an epidemiologist to tell us that these numbers represent a troubling and dangerous situation for the black community. Without a rigorous and sustained effort to prevent HIV transmission in African-American men, especially young MSM, while at the same time maintaining our successful efforts and investment among black women, the African-American population in the U.S. will continue to shoulder the most severe burden of HIV.
More must be done to scale up core evidence-based interventions in geographic areas and among key populations that have historically been left behind and stand to benefit from them the most. Public health scientists have convincingly demonstrated that African-Americans are tested for HIV just as frequently as other racial groups and do not engage in any more high-risk behaviors than others, but are still more likely to be diagnosed with HIV with CD4 counts below 350 cells/mm3 (an indication of advanced disease progression), receive an AIDS diagnosis, and/or die from the disease.
That is why the Affordable Care Act (ACA), President Obama’s signature legislative achievement, is such an important policy development for black people in the United States, particularly for those of us who are living with HIV. Since the beginning of 2014, health insurance programs expanded under the ACA are prohibited from denying coverage on the basis of pre-existing conditions, and certain preventive services must now be provided at no cost to the beneficiary, including routine HIV screening. Historically, many people with HIV have been prevented from accessing healthcare services that we now know remain vital for those with HIV and beneficial overall to public health. Studies have shown initiating HIV treatment as early as possible is in the best interest of those living with HIV, but it also has the added public health benefit of reducing transmission rates if viral suppression can be achieved and sustained. This is why it is so important that, under the ACA, all plans must provide treatment to people who are HIV positive.
In spite of its merits, due to a Supreme Court decision the expansion of Medicaid under the ACA is only available to uninsured people living in states that choose to implement it. As of December 2013, 23 states are not moving forward with expansion—including may with large black communities, such as Texas, Alabama, Florida, Louisiana, and the Carolinas. In fact, four in ten uninsured African-Americans with incomes below 138% of the federal poverty level (the threshold of eligibility under expansion) live in anti-expansion states. Equally troubling is that many of the states not moving forward with Medicaid expansion are those with the highest rates of HIV (e.g., Florida, Louisiana, and Georgia).
But even with total coverage, expanded access to healthcare made possible by the ACA cannot by itself result in earlier treatment adoption. Future research investments must be directed to areas where the epidemic remains severe and where clinicians can partner closely with researchers to practice effective implementation science. Immediate attention is urgently needed to scale up and expedite core evidence-based interventions for most-at-risk populations. Otherwise, current health disparities will persist and worsen.
Fourth-generation HIV testing technology must become the standard of care for targeting acute HIV infection and early diagnosis. Universal and accountable adoption of point-of-decision prompts has shown promise in encouraging provider movement toward routine HIV screening and re-engaging those who have become displaced from their HIV medical home. Comprehensive health coverage provided by Medicaid and plans acquired through federal or local marketplaces must respect and further develop the ability of people living with HIV and their partners to self-manage their health maintenance responsibilities. Improving individual and community HIV health literacy is an urgent priority. This can be achieved by strategically placing representative providers that can establish trust with those they serve and also build the capacity among community members to educate each other about the current state of HIV, including how antiretroviral therapy can help people live better lives and prevent further viral transmission. Treatment-based prevention alternatives such as pre- and post-exposure prophylaxis are not appropriate for everyone, but providers must feel more comfortable connecting these promising interventions to those who will benefit from them the most.
Getting the job done will mean that more black Americans living with HIV are here for the cure. Exciting new research has produced some promising therapeutics including longer-acting treatment, as well as advances toward sustaining remission of the virus. Our participation in research must also become more reflective of the current HIV epidemiology, and more can be done to remove barriers to effectively engaging the black community in HIV research. We can get this done right now while availing the community of the best possible care to optimize health outcomes.
National Black HIV/AIDS Awareness Day is a time to reflect on both our short- and long-term goals. In 2014, an intensified focus is needed to connect evidence-based policy and funding to programs that reduce HIV transmission, curtail late diagnosis, and effectively bring expanded healthcare access to all key populations throughout the country. Simultaneously, we must continue our collective work toward achieving Medicaid expansion in every state, making affordable products available in every marketplace, and providing access to inexpensive, comprehensive healthcare services to everyone at risk of, or living with, HIV; in doing so we’ll take one step closer to an AIDS-free generation in the United States.
Kali Lindsey is the deputy director of public policy for amfAR, The Foundation for AIDS Research.