Commentary: Ending the HIV epidemic in black communities
Feb. 7 is National Black HIV/AIDS Awareness Day. To mark the occasion, Melanie A. Thompson, MD, chair of the HIV Medicine Association, discusses the disproportionate burden of HIV that black communities bear, and the role health leaders must take to end the epidemic.
The slogan of this year’s National Black HIV/AIDS Awareness Day is “Stay the course, the fight is not over!” Yet for health professionals and people living with HIV, or PLWH, “staying the course” is simply not good enough. The “blackening” of the HIV epidemic in America has been going on for decades, and now blacks account for 43% of PLWH and 45% of deaths among PLWH, while making up only 12% of the U.S. population. Georgia, where I practice, has the highest rate of new HIV diagnoses among states, and blacks there account for nearly three-quarters of new diagnoses. Although new diagnoses have decreased nationally overall, those in black gay and bisexual men have continued at a steady pace, starkly illustrating that our progress in both treatment and prevention is not sufficiently reaching those who need it most. Transgender populations, especially those of color, are largely not counted but they experience especially severe disparities.
We have tools that could reverse this epidemic, but we need to substantially improve their deployment. Testing is the gateway to both treatment and prevention, and we have rapid diagnostic tests that take only minutes and can be taken to the streets. But they must be taken to the heart of communities that need testing the most. Since 2006, CDC has recommended routine “opt out” HIV testing in medical settings, but we as care providers do not follow this guidance. In Atlanta, rates of undiagnosed HIV among black gay and bisexual men remain as high as 20%. As many as one-third of people diagnosed with HIV in our area already have AIDS by the time they are diagnosed with HIV.
And although 90% of new HIV infections are acquired from people who have been diagnosed but are not receiving the care they need, getting into care often requires multiple visits — a luxury that people depending on hourly wages and limited transportation options cannot afford. New CDC data show that blacks are less likely than whites or Hispanic/Latinos to be prescribed HIV medications and less likely to have sustained viral suppression, especially in those aged 13 to 24 years. We must improve linkage to care and rapid access to HIV therapies, as well as strategies for retention and re-engagement, because effective and continuous treatment not only protects health but also prevents transmission. Staying in care and on HIV treatment requires access to transportation, ability to attend clinic hours that largely overlap with work hours, the ability to submit necessary paperwork at regular intervals to enter and remain enrolled in clinics, and, for those on private insurance, the ability to afford copays, deductibles and high coinsurance costs for medications. Pre-exposure prophylaxis also prevents new HIV infections, but it is not reaching populations in greatest need for reasons ranging from lack of awareness and lack of provider access to structural barriers enforced by insurers, placing costs out of reach.
That blacks bear the disproportionate burden of HIV is not surprising, given the structural racism that is still with us today, tracing its roots to slavery, continuing through Jim Crow and the economic redlining of the 1930s, and manifesting now in the racial profiling and mass incarceration of black men, also called “the new slavery.” To end the HIV epidemic, we must address social determinants of health, including access to housing and transportation, reforms to criminal justice and education, and ending stigma and discrimination in all forms. All of us can play a role in the latter by ensuring our clinics are client centered and have ongoing cultural awareness training.
In this hostile funding environment, we must advocate for institutions and policies serving vulnerable populations. The Ryan White HIV/AIDS Program serves over 500,000 PLWH and offers essential supportive services such as housing and transportation that are indispensable for care engagement, especially in communities with limited resources. These services are part of the reason that the Ryan White program achieves higher viral suppression rates than the national average. Threatened cuts to HHS would cripple public health departments as well as the Ryan White program. With the number of uninsured Americans once again rising, especially among young adults, black, Hispanic and low-income Americans, we also must defend the Affordable Care Act, which has allowed many PLWH to benefit from health insurance for the first time. We also must oppose attempts to scale back or layer requirements to work or be drug tested onto Medicaid, which provides care to more than 40% of PLWH in care.
In this policy environment that bypasses evidence in favor of political expediency, the proven public health value of comprehensive and scientifically accurate sexual education is ignored in favor of damaging and disproven messages of “abstinence only” and sexual risk avoidance. Meanwhile, the country has seen the largest rise in STIs in decades. The White House Office of National AIDS Policy has no staff and the National HIV/AIDS Strategy has no champion in the White House. This White House and its Department of Justice support legislation and policies that foster intolerance of LGBTQ persons, strengthen stigma, and facilitate discrimination within our health care system. The DOJ argues that LGBTQ persons are not entitled to job protection under federal anti-discrimination statutes, and regulations upholding the rights of transgender persons have been rolled back. The recent creation of the ironically named “Conscience and Religious Freedom” division of HHS, and numerous state and federal “religious refusal” bills espousing discrimination in the name of “religious freedom” serve to delegitimize civil rights for LGBTQ persons but also leave the door open to discrimination based on race, ethnicity, gender or even religion. Blacks who are also LGBTQ are subjected to intersecting stigmas that are doubly damaging. Stigma and discrimination, as we know so well in the South, are killers as deadly and infectious as HIV itself.
The National Black HIV/AIDS Awareness Day slogan urges us “Stay the course, the fight is not over!” Although our resolve must be steadfast, staying on our current course will leave to disastrous outcomes. As medical providers, we are in a unique position to end AIDS in this country, and particularly in black communities. But to do so will require a renewal of advocacy and reclaiming of our voices as health leaders. It will take all of us together to safeguard the amazing progress we have made and to ensure it benefits all Americans equally without exception. The fight is not over, but we must reverse our trajectory now if we truly want to end the epidemic.
Disclosure: Thompson reports no relevant financial disclosures.