The first community-based organizations (CBOs) and AIDS service organizations (ASOs) opened their doors in the late 1980s, near the beginning of the HIV/AIDS epidemic. For over 30 years, these organizations have worked diligently to end the virus, inclusive of protests by groups such as ACT UP, by offering holistic cares services prior to the existence of treatment options and then pushing for the funding of antiretroviral treatment. Now, in the era of "treatment as prevention" and the Affordable Care Act, these same organizations are struggling financially and organizationally.
In September 2013, the Capacity for Health Project issued the HIV/AIDS ASO and CBO Stability and Sustainability Assessment Report, a multi-component national assessment of 150 different organizations doing HIV work that sought to "better understand the impact of changes in HIV/AIDS prevention, funding shifts, and treatment advances on CBOs' organizational stability and sustainability." The report confirmed that "many, though not all, HIV/AIDS-serving CBOs have struggled and continue to struggle financially," finding that nearly 75% of these agencies had reported an operating loss in one of the three years under review.
Regarding the services being provided by these organizations and their capacity to deliver them, nearly all the organizations surveyed agreed that "community-based HIV/AIDS services should be better integrated with medical services, either through linkages or the creation of new in-house services." As a former director of counseling and testing, as well a director of finance for an HIV CBO, I share this sentiment. We as an organization did most of the legwork, working within communities and pockets of society to find people who slip through the health care cracks. For every HIV-positive client we found, we received $2,000, and that client was linked to medical care. According to the Centers for Disease Control and Prevention, in 2010 the lifetime cost for an HIV patient approached $400,000, meaning that the money goes to medical treatment facilities through billing, although the front-end work of locating the client is done by the CBO.
Leadership and governance were also addressed by the report, and CBOs didn't fare much better. Most organizations expressed frustration with their boards of directors, which were given an average score of 3.9 out of 10 for being "knowledgeable about HIV/AIDS care, services, and prevention"; 3.7 for being "knowledgeable about HIV/AIDS policy and financing"; and 4.4 for being "knowledgeable about overall nonprofit management."
These three major capacity areas are serious concerns under a presidency that has no HIV strategy, exemplified by the removal of the Office of National AIDS Policy website in January. In June, six members of the Presidential Advisory Council on HIV/AIDS (PACHA) resigned, citing a lack of interest from President Trump and his administration. The validity of this concern is shown by the first proposed budget from the White House, which called for over a billion dollars in domestic and global HIV funding cuts and sought to gut President Bush's PEPFAR program, which has saved millions of lives in developing countries.
For more insight, I spoke with PACHA member Gabe Maldonado, who also serves as executive director of TruEvolution in Riverside, California. Addressing these concerns about boards and their disconnect from the populations being served, Maldonado said:
As a young Afro-Latino gay man, I have experienced organizational spaces that do not fully reflect the people they are actively serving. Most often, youth of color are not aided with robust leadership development, empowered with opportunities to display leadership talents or provided the resources needed to maintain the leadership continuum with future generations. With regards to any "disconnect" that a board may have from its population served, I have witnessed boards whose sheer size, range of responsibilities and volume of client-diversity pose challenges for a volunteer board to keep the pulse of an ever-evolving community. This proves a challenge for any expanding ASO or CBO serving most jurisdictions.
Maldonado also spoke to the importance of bringing in new leadership with specific expertise as an organization grows. He stated:
As the organization evolves, your preferred qualities in a board member must evolve, as well. You must factor in any expansion of specialty services (mental health, substance abuse, biomedical interventions), increases in the budget, the diversity of grants versus federal or county contract and the range of influence needed to take an organization from local to regional to statewide to national. Each of these considerations will require a new level of insight and expertise for a board to fully execute its fiduciary responsibility.
The report's final recommendations agreed with many of Maldonado's points. The evolution of the epidemic is changing the landscape of HIV work, and it is vital that organizations make the shift to be recognized as Federally Qualified Health Care Centers rather than continuing to follow the CBO/ASO model. The report recognized that this option will not be viable for every organization, but is something all should consider. The most important recommendation was that CBOs utilize the technical assistance offered free of charge through grant funding. This assistance can help create board governance, financial controls and strategic planning to help prevent agencies from closing.
George M. Johnson is a writer based in the Washington, D.C., area. He has written for Huffpost, Ebony.com, Pride.com and Diverseeducation.com, and has a monthly column in A&U magazine. He is a loyal member of the Beyhive and you can follow him on Twitter @iamgmjohnson.