Pre-exposure prophylaxis (PrEP) has the opportunity to be a game changer in the fight against HIV/AIDS. It has been included in President Obama’s National HIV/AIDS Strategy, as well as endorsed by Center For Disease Control (CDC) and The World Health Organization (WHO) for men and women at risk of acquiring HIV. It is one of the essential “pillars” in New York Governor Cuomo’s plan to “End The AIDS Epidemic” by 2020. Yet startling data released on June 20th shows PrEP is not effectively being accessed by populations in most need.
According to the CDC, African-American gay and bisexual men in the United States are at significantly high risk for acquiring HIV in their lifetime than their Caucasian counterparts. At current rates, 1 in 6 men who have sex with men (MSM) will be diagnosed with HIV in their lifetime, including 1 in 2 black MSM, 1 in 4 Latino MSM, and 1 in 11 white MSM.
Truvada is an FDA approved medication that is covered by all insurances, including Medicaid, can be paid for by the manufacturer if someone has no insurance, and has 99% efficacy when used on a daily basis. It is so far the only FDA approved HIV strategy. (Condoms have never been FDA approved for HIV prevention.)
Data from Gilead Sciences, the manufacturer of Truvada, shows that despite these HIV risk disparities, PrEP is not being utilized in correlation with risk.
- Whites make up 27% of new U.S. HIV cases but 75% of current PrEP consumers.
- African-Americans make of 44/% of new U.S. HIV cases but only 10% of current PrEP consumers.
- Hispanics make up of 23% new U.S. HIV cases but only 12% of PrEP consumers.
- Women make up 19% of new U.S. HIV cases but only 11.4% of current PrEP consumers.
Numbers regarding risk and PrEP utilization among transgender populations were not included in the report.
So what happened on the way to the finish line? How can we have such a powerful method for ending HIV, yet so little uptake?
There are many explanations to these questions that are interwoven into a complex medical system that often fails to educate and respect consumers, nor offers sex-affirmative information about pleasure and prevention.
Additionally, many of people of color report being stigmatized and judged by their providers. Out of 544 African-American gay/bisexual men surveyed in a study published in the February 2015 edition of the American Journal of Public Health, 29 percent reported experiencing racial and sexual orientation stigma from healthcare providers, and 48 percent reported mistrust of medical establishments.
“This data is disappointing, but unfortunately it is not surprising,” said Devin Barrington-Ward, an advisor to the Georgia Legislative Black Caucus on HIV.
“First, there still remains a historic mistrust between black people and the medical community. Examples like the Tuskegee experiences, where blacks unknowingly were used as test subjects by the U.S. government to study syphilis and barred access to treatment until 1972, still remain in the minds of many black people,” he said. “Couple this mistrust with the higher rates of uninsured black and Hispanic people, particularly in the Southeast where many states with the highest rates of HIV infection have not expanded Medicaid, you have the perfect scenario where communities of color do not have access to the latest advancements in medicine, including PrEP.”
“If we want to get serious about scaling up PrEP usage in black and Hispanic communities we should first start by putting pressure on the medical community to rebuild trust with communities of color by increased cultural competency and developing a pipeline of more black and brown medical professionals. We should continue to uplift the narrative in states throughout the south that Medicaid expansion is one of the best forms of HIV prevention. We should also look at legislation that is moving through the California legislature, which requires that doctors provide patients with information about PrEP and PEP upon giving an HIV negative test result, as models for other states.”
Given the new data, it is clear now more than ever that PrEP and HIV prevention is a social justice issue. It is vital that all of us concerned about ending HIV re-examine our role within a context of structural inequities, institutional disparities, and historical travesties. Discouraging or silencing discussions about race and gender is irresponsible and destructive.
The end of this epidemic lies within our grasp but only if each of us are willing to honestly and frankly examine our role in perpetuating, and changing, these imbalances.
Damon L. Jacobs is a New York-based marriage and family therapist and HIV prevention specialist who focuses his work on health, social justice, and pleasure. He is best known for championing education around pre-exposure prophylaxis (PrEP) in the media, and creating, “PrEP Facts: Rethinking HIV Prevention and Sex.“
