Successful AIDS advocates study the epidemic and the many developments and approaches designed to interrupt its cycles. To make a difference, AIDS advocates need curiosity, passion, knowledge, and tenacity to effect meaningful change.
Keeping up-to-date on a constellation of AIDS-related news and topics is admittedly difficult. Thankfully, advocacy organizations produce a steady stream of thought-provoking recommendations and analysis to fuel advocacy work.
That’s why I’ve compiled my summer reading list. Below are just some of the wonky reports I plan to peruse or re-read between my growing pile of magazines and books for leisure this summer. Like any good list, this one is certainly incomplete and hardly representative of all there is to learn and know about the AIDS fight. Use mine or make your own. Between picnics and pool parties, broaden your horizons this season for the hard work ahead!
1. New York State’s Blueprint to End AIDS: Tenacious advocacy persuaded New York Governor Andrew Cuomo to commission a planning process and report to “get to zero” new AIDS cases.
“The end of the AIDS epidemic in New York State will occur when the total number of new HIV infections has fallen below the number of HIV-related deaths,” Gov. Cuomo says in the report. Members of the governor’s End AIDS Task Force advanced several recommendations, including new financial investments, to go even further than the blueprint in truly striving for zero new infections and HIV-related deaths by 2020. The Blueprint articulates three driving goals: (1) provide testing and linkage to care for people with unknown HIV infection; (2) Link and retain in care those who do know their HIV-positive diagnosis; and (3) facilitate access to PrEP and PEP (pre-exposure prophylaxis and non-occupational post-exposure prophylaxis) to prevent HIV acquisition. Treatment Access Group and Housing Works have modelled the new financial investments needed, and offsetting cost-savings produced, to launch the plan with massive scale-up of testing, linkage, and delivery of care, prevention, and other vital services. Learn more about this exciting statewide effort here: health.ny.gov/diseases/aids/ending_the_epidemic/#blueprint. Projected Fiscal Impact: treatmentactiongroup.org/sites/g/files/g450272/f/201504/NYS%20ETE%20Fiscal%20Impact%20v4.pdf.
2. UNAIDS’s 90-90-90 Plan. The New York plan might be considered a municipal version of a similar strategy initiated by UNAIDS to marshal global progress against the epidemic. The plan aims to achieve the following targets:
By 2020, 90% of all people living with HIV will know their HIV status
By 2020, 90% of all people with diagnosed HIV infection will receive sustained antiretroviral therapy
By 2020, 90% of all people receiving antiretroviral therapy will have viral suppression
Elegant and persuasive, the plan nonetheless underscores the challenges ahead to meet the defined target. For example, UNAIDS estimates that only 37% of people living with HIV were receiving HIV treatment as of December 2013, leaving more than 22 million people with HIV without treatment. 90-90-90 articulates not only a path forward but the economic and societal benefits of doing so. Download it at unaids.org/sites/default/files/media_asset/90-90-90_en_0.pdf.
3. The just-released CDC Prevention Strategic Plan Through 2020 (cdc.gov/nchhstp/docs/NCHHSTP-Strategic-Plan-through-2020-508.pdf), which describes CDC’s high-impact prevention framework, pledges CDC resources to better document dynamics fueling health disparities among men who have sex with men, transgender people, injection drug users, youth, and heterosexuals. CDC further agrees to expand communications with stakeholders on progress toward established goals, better utilize surveillance and program data for planning and decision making, and strengthen collaborations with Medicaid and Medicare.
The new CDC plan defers to the National HIV/AIDS Strategy, which merits a re-reading (aids.gov/federal-resources/national-hiv-aids-strategy/overview). Unveiled by President Obama in 2010, the plan established meager and yet unrealized goals through 2015. As the White House assesses progress and entertains a possible extension, readers should review recommendations to embolden the nation’s HIV/AIDS response plan (see: treatmentactiongroup.org/sites/tagone.drupalgardens.com/files/201304/RevitalizeNHASMeetingReport.pdf).
4. Back of the Line: The State of AIDS Among Black Gay Men in America (blackaids.org/images/reports/back.pdf) by the Black AIDS Institute documents the devastating HIV disparities experienced by black gay men in the U.S. At rates rivaling the most affected quarters of the world, the report calls on all sectors to prioritize anti-HIV work with Black gay men; large-scale, targeted awareness, testing, and link-to-care initiatives to reach the population; greater promotion of antiretroviral therapy and adherence; intensive national efforts to reduce other sexually transmitted infections; and scale-up of proven-effective HIV prevention strategies, including PrEP, capacity development for Black gay men’s institutions, and policy to mitigate stigma and discrimination suffered by Black gay men.
NMAC’s report entitled RISE Proud: Combating HIV Among Black Gay and Bisexual Men (nmac.org/wp-content/uploads/2013/06/Action-Plan_6.4.13.pdf) delves into similar topics such as the role of mass incarceration, trauma, sex work for survival, and HIV criminalization statutes that must be reformed in order to mitigate the HIV crisis within this community.
5. Transgender Health and HIV (sfaf.org/hiv-info/hot-topics/beta/beta_2009_sumfall_transgender2.pdf), a 2009 article by the San Francisco AIDS Foundation, provides a comprehensive and user-friendly guide to transgender healthcare topics important to people living with HIV/AIDS.
Taking a global perspective, amfAR’s issue brief on the Trans Population and HIV: Time to End the Neglect (amfar.org/End-the-Neglect) recommends greater leadership, funding, research, healthcare capacity, and structural interventions to mitigate the stigma, discrimination, and HIV-related health disparities suffered by transgender people.
6. From Treatment to Healing: The Promise of Trauma-Informed Primary Care (whijournal.com/article/S1049-3867%2815%2900033-X/fulltext) advocates for the adoption of strategies designed to address the effects of trauma on health outcomes among women and other patient populations harmed by current or past traumatic events. As stated in the article, the authors “reviewed patient deaths at the Women’s HIV Program (WHP) at the University of California, San Francisco, and revealed that most were not from HIV, but rather from trauma—directly through murders and indirectly through depression, suicide, and addiction. These deaths occurred in a clinic that already had integrated medical, mental health, and social services. Positive Women’s Network—USA (PWN-USA) had also noted the pervasive impact of trauma among its national network of women living with HIV. Together, we looked for ways to address trauma in a clinic setting and found that, despite national calls to action, there was a lack of guidance about the core components of a practical approach to addressing recent and past traumatic experiences within adult primary health care settings.”
7. Prevention on the Line (avac.org/report2014-15), AVAC’s 2014-15 Report, analyzes how national and international target-setting on HIV prevention has led to new investments and achievements reducing new HIV infections in diverse settings around the world. AVAC Executive Director Mitchell Warren summarizes the report in this YouTube video: youtube.com/watch?v=gVsZUrEq_Rg&feature=youtu.be.
A series of multilingual educational videos by the International Rectal Microbicide Advocates (youtube.com/user/IRMAadvocacy/videos) describe the urgent need for continued scientific focus toward development of a safe and effective gel, lubricant, or suppository formulated with HIV prevention properties. To bolster outcomes, the Black AIDS Institute shines a light on the persistent knowledge gap in HIV sciences and treatment literacy among the HIV/AIDS workforce in the U.S. The report, When We Know Better, We Do Better (blackaids.org/images/reports/15-know.pdf), calls for greater education and training for those on the frontlines of the fight against HIV/AIDS.
8. 15 Ways HIV Criminalization Laws Harm Us All by Lambda Legal (lambdalegal.org/sites/default/files/publications/downloads/15-ways-hiv-criminalization-laws-harm-us-all.pdf) makes a compelling argument for reform of state-based laws that unjustly incarcerate people with HIV for alleged HIV non-disclosure and/or intimate contact with consenting adults, including contact not capable of transmitting HIV.
Equally powerful is the video HIV is Not a Crime by the Sero Project (youtube.com/watch?v=iB-6blJjbjc), which also hosted the first national conference on criminalization advocacy and reform initiatives last year. See the conference report here: seroproject.com/wp-content/uploads/2014/07/Conference_Report_Final_forwebsite.pdf.
Finally, the Center for HIV Law & Policy’s Positive Justice Project published this helpful Guiding Principles for Eliminating Disease-Specific Criminal Laws (hivlawandpolicy.org/resources/guiding-principles-eliminating-disease-specific-criminal-laws-positive-justice-project).
9. The Southern HIV/AIDS Strategy Initiative (SASI)’s 2015 report called One Size Does Not Fit All: What Does High Impact Prevention Funding Mean for Community-Based Organizations in the Deep South? (southernaids.files.wordpress.com/2015/04/cdc-cbo-funding-paper-one-size-does-not-fit-all-3-final.pdf) makes a cogent argument for additional resources for rural and suburban areas in the southeastern U.S., which bears the brunt of the country’s HIV/AIDS crisis.
Supplementing SASI’s analysis, the Latino Commission on AIDS published The State of Latinos in The Deep South: Being Visible by Piercing the Stigma Veil (latinoaids.org/publications/DeepSouthReport2015.pdf). As the Latino population grows in the region, the infrastructure and cultural competency needed to meet an array of health, wellness, and psychosocial needs is not in place, which is exacerbating rates of HIV/AIDS among Latino men and women across the region.
10. How healthcare services are financed and delivered for people with and at risk of HIV/AIDS is quickly shifting thanks to the reforms established by the Affordable Care Act (ACA). Mapping changes and helping advocates navigate health policy and law in the new ACA landscape is the focus of HIVHealthReform.org, which offers free monthly webinars, an active blog, and collaborative advocacy opportunities.
The Kaiser Family Foundation has an HIV specific portal on the ACA and resources such as this article on payer reform: iasusa.org/sites/default/files/tam/21-4-138.pdf.
The Ryan White safety-net is being deployed in unique ways across the country to fill gaps around the ACA. Kaiser and Georgetown University wrote about ways Ryan White services may be repositioned to drive better care outcomes (kff.org/hivaids/report/updating-the-ryan-white-hivaids-program-for-a-new-era-key-issues-and-questions-for-the-future). Fact sheets on the ACA and Ryan White are also available from AIDS United (ACA: aidsunited.org/data/files/Site_18/AW2015-ACA_Web.pdf and Ryan White: aidsunited.org/data/files/Site_18/AW2015-RWP_Web.pdf).
Yes, learning can be fun—I promise! Becoming an informed AIDS advocate serves the greater good, and what could be more rewarding. Whatever resources you review, these reports demonstrate that better outcomes are not only possible but also achievable, heightening the tragedy of persistent HIV health disparities.
Keep reading, keep learning, and keep contributing to the discourse. As RuPaul reminds us, reading is fundamental.
DAVID ERNESTO MUNAR is the President and CEO of the Howard Brown Health Center (HBHC), Chicago’s LGBTQ community health center. He joined HBHC in 2014 after a 23-year career at the AIDS Foundation of Chicago, where he served as President and CEO from 2011 to 2014. Munar devoted his entire professional career to building comprehensive systems of care and prevention that meet the needs of vulnerable populations. He is Colombian-American, a gay man, and a person living with HIV.