The New Role of HIV Community-Based Organizations
This is a brief guide to understanding how HIV community-based organizations can take steps to best position themselves to continue and further their missions within the new context of HIV prevention and care service provision – largely shaped by the advent of the Affordable Care Act, the National HIV/AIDS Strategy and other important national policies.
The Affordable Care Act Era: A New Context for HIV Service Delivery
Over the last few years, a number of significant events have dramatically changed the field of HIV. These events include the signing of the Patient Protection and Affordable Care Act (ACA) in 2010[i] and the release of the first ever National HIV/AIDS Strategy[ii] later that same year. Also of great significance were the results of a groundbreaking scientific study in 2011, HIV Prevention Trials Network 052 [iii], demonstrating that HIV treatment could not only improve health outcomes for people living with HIV, but that it could also prevent the transmission of HIV, thus ushering in a new paradigm of treatment as prevention.
When the Affordable Care Act (ACA) is implemented in 2014, Medicaid coverage will be expanded to non-disabled adults with incomes of up to 133% of the federal poverty level (FPL) in states that accept Medicaid expansion. Subsidies to purchase private insurance – via exchanges –will be provided for people with incomes between 100% and 400% of the FPL in all states. Many people living with HIV who currently don’t have insurance, and who get their HIV medical care paid for through the Health Resources and Services Administration’s Ryan White Program, will be able to get insurance (both Medicaid and private) through the ACA. By congressional charge, the Ryan White fund is the payer of last resort – which means that if a person has medical insurance that insurance must be used to pay for their HIV medical care. Therefore, as the ACA expands insurance coverage, many people living with HIV will move from the Ryan White program to Medicaid/State Private Exchange Insurance for payment of their HIV and other medical care. This will expand coverage for many HIV-infected patients as it will include services such as emergency care and non-HIV related medical care.
These events collectively have reshaped how we conceptualize and deliver HIV prevention and care services, compelling us to examine, among other things, the structure and role of HIV community-based organizations within this new system of service delivery.
Why Consider Restructuring?
“Strategic restructuring occurs when two or more independent organizations establish an ongoing relationship to increase the administrative efficiency and/or further the programmatic mission of one or more of the participating organizations through shared, transferred, or combined services, resources, or programs.”
-La Piana Consulting
La Piana Consulting, a leader in the field of nonprofit capacity building says that “strategic restructuring occurs when two or more independent organizations establish an ongoing relationship to increase the administrative efficiency and/or further the programmatic mission of one or more of the participating organizations through shared, transferred, or combined services, resources, or programs.”[iv]
As defined, strategic restructuring includes partnerships that are beyond collaborations, in that “they involve a change in the locus of control of at least a portion of one or more of the organizations involved.”[v] Typically nonprofits consider restructuring in order to better achieve their missions, strengthen their programming and/or to respond to a changing environment. Since the health care environment in general, and the HIV field in particular, are both rapidly changing as outlined above, it may be timely for HIV CBOs – especially those whose infrastructure and programming were developed within a different context – to assess the feasibility of restructuring, or, minimally, to explore collaborative opportunities.
Utilizing the HIV Treatment Cascade
One tool that can be used to assist CBOs with realignment or restructuring decisions is the HIV Treatment Cascade, a model popularized by Dr. Edward Gardner and colleagues in The Spectrum of Engagement in HIV Care and its Relevance to Test-and-Treat Strategies for Prevention of HIV Infection.[vi] The Treatment Cascade is a simple visual used to depict the estimated number of people living with HIV who know their status; who are linked to HIV care; who are retained in HIV care; who need treatment; who are receiving treatment and who are adherent to their treatment and ultimately have an undetectable viral load. Ideally, we would want everyone living with HIV to have an undetectable viral load, but, as the Treatment Cascade illustrates (see Figure 1), less than one in four HIV positive people are estimated to have an undetectable viral load.
Figure 1: The Stage of Engagement in HIV Care, aka, The HIV Treatment Cascade
The Treatment Cascade can be utilized to help direct the services of various CBOs when local data are applied. Let’s say for example that in a certain city or jurisdiction, the treatment cascade indicates that there is a major gap between people getting linked to care and retained in care; and that further research determines that a significant amount of people who are not engaged in care also have substance abuse disorders. If a local agency is known for providing quality services for substance users, they may want to more actively promote those services and clearly demonstrate – via the Treatment Cascade – the importance of those services in ensuring that those who are linked to care become engaged in care and ultimately are more likely to have undetectable viral loads.
Next Steps & Resources
As we move forward with the implementation of the Affordable Care Act and strategies that operationalize treatment as prevention, inevitably the structures of HIV service provision will shift. A number of resources, some of which are listed below, can assist with preparing for these changes and ensuring that HIV CBOs remain relevant and fully capable of fulfilling their missions.
CDC Capacity Building Assistance: http://www.cdc.gov/hiv/topics/cba/cba.htm
Ryan White Target Center: http://www.targethiv.org
Affordable Care Act: http://www.healthcare.gov
La Piana Consulting: http://www.lapiana.org
MAP for Nonprofits: http://www.mapfornonprofits.org
Kaiser Family Foundation Video: Health Reform Hits Mains Street: http://healthreform.kff.org/the-animation.aspx?source=QL
An Examination of Strategic Nonprofit Restructuring:
A Guide to Restructuring Types, Organizational Assessment, Identification of Partners, Funding Sources and Implementation:
The Lodestar Foundation Nonprofit Collaboration Database: http://foundationcenter.org/gainknowledge/collaboration
HIV in the United States: Stages of Care: www.cdc.gov/nchhstp/newsroom/…/Stages-of-CareFactSheet-508.pdf
Diagnosing Organizations: Methods, Models, and Processes; Harrison, M., 2005.
[i] Patient Protection and Affordable Care Act: http://www.healthcare.gov
[ii] National HIV/AIDS Strategy: http://www.whitehouse.gov/administration/eop/onap/nhas
[iii] Cohen, MS, et al., “Prevention of HIV-1 Infection with Early Antiretroviral Therapy,” N. Engl. J. Med. 365, 493-505 (2011).
[iv] La Piana Consulting: http://lapiana.org/strategic-restructuring/faqs/types-of-strategic-restructuring
[v] La Piana Consulting: http://www.lapiana.org/strategic-restructuring/faqs
[vi] The Spectrum of Engagement in HIV Care and its Relevance to Test-and-Treat Strategies for Prevention of HIV Infection. Edward M. Gardner, Margaret P. McLees, John F. Steiner, Carlos del Rio, and William J. Burman; Clin Infect Dis. (2011) 52 (6): 793-800.