Does ending the epidemic still matter for our communities?
One in two black gay and bisexual men and one in four Latino gay and bisexual men in the United States may become HIV positive in their lifetime.[i] As many as 50% of black transgender women may be living with HIV in America.[ii] People living with HIV remain at increased risk of homelessness, poverty, depression, anxiety, imprisonment, and death. New infections lead to unnecessary and burdensome systemic medical costs.[iii] Our communities remain divided by a virus and the stigma that comes with it.
Ending HIV/AIDS matters just as much as ever. With greatly improved treatments and prevention tools at our disposal, we share a responsibly as a society to end this burden for all disproportionately affected communities. Until we do, every new infection is a failure; every HIV-related death is a tragedy.
Essential Community Leadership in the EtE Process
“The participation and leadership of people living with, vulnerable to, and affected by HIV has been a hallmark feature of the response since the start of the epidemic. Beginning with the earliest report of AIDS, community leaders demanded that the voices of people living with the disease and their communities be heard by decision makers and fully considered in all areas of funding, research, public policy, and prevention and care service delivery. Indeed, community members—most of whom lack formal medical, legal, public health, or healthcare systems training—have continually proved to be critical partners in all efforts to sensitively and effectively address disparities, improve outcomes, and control the spread of HIV.”
Over the past several years, we’ve seen EtE plans accelerate progress in diverse jurisdictions and in different political contexts. An essential element of EtE planning is a network of passionate advocates who have the time, the resources, and the drive to mobilize communities, lead and participate in strategy development processes, and advocate for all stakeholders—notably city, county, and/or state health departments—to fully support these efforts.
Countless documents exist to address HIV/AIDS treatment and prevention. Civil society, national governments, and public health departments/agencies frequently draft their own plans outlining goals and objectives; yet they often lack a commitment to community leadership and engagement in every step of the planning process.
How an EtE plan is made is just as important as the recommendations it contains. Unlike other plans drafted primarily by and for public health officials, EtE plans are initiated, created, and implemented with leadership from all disproportionately affected populations. Community ownership of the planning meetings, the writing process, and the final recommendations ensures buy-in during the implementation phase; and deviates from the typical top-down approach to public health.
[i] Hess KL, Hu X, Lansky A, Mermin J, Hall HI. Lifetime risk of a diagnosis of HIV infection in the United States. Ann Epidemiol. 2017 Apr;27(4):238-243. doi: 10.1016/j.annepidem.2017.02.003. Epub 2017 Feb 21.
[ii] Baral SD, Poteat T, Strömdahl S, Wirtz AL, Guadamuz TE, Beyrer C. Worldwide burden of HIV in transgender women: a systematic review and meta-analysis. Lancet Infect Dis. 2013 Mar;13(3):214-22. doi: 10.1016/S1473-3099(12)70315-8. Epub 2012 Dec 21. Review.
[iii] Schackman BR, Fleishman JA, Su AE, Berkowitz BK, Moore RD, Walensky RP, et al. The lifetime medical cost savings from preventing HIV in the United States. Med Care. 2015 Apr;53(4):293-301. doi: 10.1097/MLR.0000000000000308.