As published on HIVPlusMag.com
Rabin Martin’s Terri Jackson has spent the better part of her career as both an advocate and HIV public health expert and, in an op-ed for HIV Plus Magazine, she reflects on the decades-long fight for gay rights that has been inextricably linked with the AIDS response. We’ve come a long way since the epidemic first raged across the country in the 1980’s, but progress has stalled, and we still have a long way to go. Making progress requires looking outside of the health sector for allies and partners and focusing prevention and treatment efforts on groups most impacted by HIV.
Earlier this year, President Trump committed to eliminating HIV transmission by 2030 by reducing new infections. Thereafter, the administration announced a partnership with Gilead to donate up to 200,000 bottles of the HIV prevention drug Truvada for up to 11 years. These commitments are a good start to help keep the epidemic at the forefront of the policy agenda, but are they part of a solution that addresses the wrong problem?
How do we reduce rates concentrated among black and Latino men who have sex with men? Or meet the needs of HIV-positive patients caught between insurance plans or places to live? To end the epidemic, we must start where we began — by focusing on those most affected, uniting advocacy efforts, pushing for a cross-sector response and focusing on the social determinants of health.
As someone who has spent the better part of my professional career as both an advocate and HIV public health expert, I’ve been reflecting on the decades-long fight for gay rights sparked by people who gathered together at Stonewall in 1969 to demand change for the LGBTQ+ community and put an end to years of discrimination. Not long after, the AIDS epidemic swept across the country, closely intertwining the movement for increased LGBTQ+ rights with the AIDS response. Gay rights groups were relentless in pushing for increased government attention and funding as thousands died from the disease. Activists organized “buyers clubs,” lobbied for faster FDA approval of promising drugs and countered the fear and discrimination people living with AIDS faced.
In the years since, the fight against the global burden of HIV has seen remarkable achievements.
Nearly 60 percent of people living with HIV now have access to critical antiretroviral therapy, compared to 2 percent in 2000, and treatments now have fewer side effects, are more accessible, and are cost-effective. Since the height of the epidemic in 2004, AIDS-related deaths have decreased by more than 51 percent, and the widespread adoption of pre-exposure prophylaxis (or PrEP) in HIV prevention efforts has helped significantly reduce the number of new infections.
Despite this substantial progress, though, currently more than 15 million people living with HIV are not on treatment, and around 9.4 million are unaware of their HIV status.
In the evolution of the epidemic in the United States, HIV has unfortunately turned into a “pandemic of the poor” and one that disproportionately affects people of color. Black women are 20 times more likely than white women to get HIV, and 50 percent of black gay men will have HIV by the time they are 35. These groups are stigmatized, disenfranchised, and not being reached by standard HIV care. Yet, few are leading with race.
Solutions to ending the HIV epidemic are not as simple as linking folks to healthcare and giving them a prescription for meds,” says Paul Kawata, executive director at the National Minority AIDS Council. “If it was that simple, we could have done it a long time ago. Solutions … require us to reach communities that have eluded previous efforts. To speak to people who daily face discrimination and even hatred for being themselves… Sometimes, we need to listen and leave the leadership to the communities we need to reach.
To reach the administration’s goal of eliminating transmission rates by 2030, we need to focus prevention and treatment efforts on the most vulnerable, marginalized populations, who to-date have slipped through the cracks of our current screening and treatment programs.
It is imperative to expand wraparound services that provide additional, non-medical support that can increase the availability and effectiveness of HIV/AIDS treatments. Local, state and national government groups will need to partner with patient advocacy groups, health systems, pharmaceutical companies, insurers, NGOs and funders to create and scale programs that are tailored to those most in need. And, most importantly, those living with or at risk of HIV must have a seat at the table and be brought into the conversation. We must look for critical insights from the LGBTQ+ community, communities of color and those with lived experience to complement scientific findings as we look for solutions to bring an end to this epidemic.
Before founding Rabin Martin, Steve Rabin, a gay man who lived through the worst of the AIDS epidemic in the 1980’s, spent a decade working with patient advocacy groups to advocate for faster regulatory approval of life-saving HIV medicine to get people on treatment before the disease was able to progress. Thereafter, Rabin Martin operated with a vision to improve access to quality healthcare services for the most vulnerable, with the belief that bringing unlikely partners together and finding common goals had the power to disrupt the status quo and improve the lives of the underserved.
That idea continues today as we work towards ending this epidemic. Making progress requires looking outside of the health sector for allies and partners. It is also critical to focus prevention and treatment efforts on groups most impacted by HIV, including people of color, those living in poverty and sexual minorities.
We’ve come a long way since the HIV crisis first raged across the U.S. in the 1980’s, but to reach President Trump’s ambitious goal of ending HIV transmission by 2030, we must end the way we began — with bi-partisanship, collaboration and a tenacious fervor to work together toward a shared goal of providing holistic and accessible care for those that need it most.