Person-Centered Care For People Living With HIV/AIDS

In CY 2019, among the 49 jurisdictions responding to the survey, 250,781 clients were served by RWHAP Part B programs, representing 21% of the nearly 1.2 million people estimated to be living with HIV in the United States at the end of 2019. Within ADAP, 242,997 clients were reported as served in CY 2019, with 39% by ADAP-funded insurance only (i.e., the client had either public or private insurance for which the ADAP paid premium(s), deductible payment(s) and/or cost-sharing/co-payments), 47% by the full-pay prescription program only, and 14% by both the ADAP-funded insurance and full-pay programs. In CY 2020, again with 49 jurisdictions providing data, 248,625 clients were served by an ADAP – a 2.2% increase compared with CY 2019 – with 40% by ADAP-funded insurance only, 45% by the full-pay prescription program only, and 15% by both programs. 

The only jurisdiction providing program enrollment data for CY 2019 and CY 2020 that saw a significant (>5%) increase in the number of enrolled clients between the two years was Texas, with a 19.3% increase. This was associated with a 35.5% increase in the number of new clients enrolled in CY 2020 versus CY 2019. Across all jurisdictions, new enrollments in ADAPs, relative to the total number of enrolled clients, was 12% in CY 2020, compared with 14% in CY 2018 and CY 2019 and 15% in CY 2017.  

As RWHAP Part B programs/ADAPs served over half of all RWHAP clients, and between 20% to 25% of all PLWHA nationally, they continue to provide a critical component of the public health and health care infrastructure necessary to reaching an end to the HIV epidemic.

To fulfill their mission and purpose in achieving optimal health outcomes and quality of life among the PLWHA served by their programs, RWHAP Part B programs and ADAPs must develop and maintain systems that are responsive to the challenges faced by their clients. As stipulated by the Ryan White CARE Act, individuals served by RWHAP Part B programs are low-income and under/uninsured. Among all RWHAP Part B clients served during CY 2019 in a responding jurisdiction, 52% had incomes less than 100% of the federal poverty level (FPL) whereas 10.5% of the general population were living at or below the FPL in 2019.

More than half (55%) of RWHAP Part B clients were Black, brown, indigenous, or other people of color (BBIPOC) in CY 2019, with the majority (82%) of clients of color reported as Black/African American. Conversely, less than half (44% and 46%) of ADAP clients were identified as BBIPOC in CY 2019 and 2020, respectively. The proportions of RWHAP Part B program and ADAP clients who are Black/African American in CY 2020 (45% and 40%, respectively) have not changed significantly compared with CY 2016 (45% and 39%, respectively). The proportions of RWAHP Part B program and ADAP clients who are white have increased, respectively, from 41% and 48% in CY 2016 to 43% and 52% in CY 2020.    

By ethnicity, 18% of RWHAP Part B clients were reported as Hispanic/Latinx. Among ADAPs, 28% of served clients were reported as Hispanic/Latinx in CY 2019 and 2020.

The majority of RWHAP Part B clients served in CY 2019 identified as male (73%) whereas 25% identified as female and 1% as transgender. Among ADAP clients served, 78% identified as male in CY 2019 and 2020. Comparatively, 49% and 51% of the U.S. population in 2019 were reported as male and female, respectively.  This difference is reflective of the disproportionate prevalence of HIV among men nationally; 78% of all adult and adolescent PLWHA in 2019 were male.

There are key differences in the clients served by RWHAP Part B core medical/support services versus those served by ADAP specifically. RWHAP Part B programs, outside of ADAP, may provide more services to low-income PLWHA that are not otherwise covered by Medicaid or other payers. Forty percent of ADAP clients served in CY 2019 (44% in CY 2020) had incomes below 100% FPL, 12% less than those served by RWHAP Part B in CY 2019 (described above).

Effective antiretroviral (ARV) regimens have enabled many PLWHA, including RWHAP Part B and ADAP clients, to achieve a near-normal life expectancy and experience fewer HIV-related conditions (e.g., opportunistic infections). As a result, the proportion of RWHAP Part B and ADAP clients who are older – and consequently facing an increased risk of non-HIV-related health complications (e.g., cardiovascular disease and cancer) – has and will continue to grow. In CY 2019 and 2020, respectively, 9% and 10% of ADAP clients were aged 65 years or older, while in 2008, 2% of ADAP clients served were aged 65 years or older.

RWHAP Part B programs and ADAPs are well-positioned to address the complex medical management and needs of clients through their expansive and flexible service delivery and the opportunities that an evolving healthcare system has afforded them by bolstering it.