HRSA Releases Annual ADAP Client-Level Report, 2019 - Program Enrollment Way Up

By: Marcus J. Hopkins, Founder & Executive Director, Appalachian Learning Initiative

The Health Resources and Services Administration (HRSA) has released the AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report, 2019. These data reflect the demographic characteristics of clients served by the ADAP program from 2015-2019. This is the first such data report since September 2020 (HRSA, 2022) as a result of the onset of the COVID-19 global pandemic.

Increasing ADAP Enrollment

In 2019, 296,930 clients were served by state ADAP programs across the United States—an increase of more than 37,000 clients from 2015. While this represents a 14.4% increase in national enrollment numbers from 2015 to 2019, 24 states saw enrollment increases or decreases of greater than 25% (Figure 1).

Two states—Arkansas and Nevada—saw increases of greater than 100%, with Arkansas seeing a 122.8% increase and Nevada seeing a 168.8% increase. Comparatively, three states—Alaska, Louisiana, and Minnesota—saw decreases in enrollment of greater than 30%. Nineteen states saw enrollment increases between 25% - 99.9%.

Client enrollment regularly decreases and increases based on a number of factors, including but not limited to:

• Clients becoming newly eligible or ineligible based upon their income
• Clients moving from state ADAP programs to state Medicaid programs
• An increase in new HIV diagnoses and, with the delivery of competent case management services, being enrolled in the program
• Clients moving into or out of states
• Clients passing away

Because no one state’s ADAP program is identical to another, the reasons for enrollment increases and decreases are highly specific to each state. That said, significant increases and decreases should be carefully examined to identify service disparities, particularly in states where patients face numerous barriers to accessing care and treatment.

Figure 1. Change in State AIDS Drug Assistance Programs (ADAPs) Enrollment, 2015 to 2019

Photo Source: HRSA, 2022

The Demographics of ADAP

77.7% of ADAP clients are male—a figure that has remained unchanged since 2015. Similarly, the racial and ethnic demographics of ADAP clients have remained largely unchanged since 2015, with an average of roughly 40% of enrollees being Black Americans, 26% being Hispanic/Latino, and 30% being White from 2015 to 2019. Of the women who are clients of ADAP, over half (57.0%) are Black. Additionally, ADAP enrollees have continued to overwhelmingly be at the lowest end of the income eligibility scale with 43.5% of clients earning between 0% - 100% of the Federal Poverty Level (FPL)—$12,490/year for an individual.

These demographics have all remained largely unchanged over the past decade in no small part because they are reflective of the HIV epidemic, in and of itself. New HIV diagnoses continue to be disproportionately identified in Black, Brown, and lower-income communities. As a result, those clients compose the majority of ADAP clients.

In addition to gender, race, and income demographics, ADAP clients who are part of a racial or ethnic minority tend to be younger than their White counterparts. 58.6% of White ADAP clients are aged 50 or older.

Health Coverage of ADAP Clients

In 2019, nearly 40% of all ADAP clients had no healthcare coverage, whatsoever, including private and employer-sponsored insurance, Medicaid coverage, Medicare coverage, Veterans Administration coverage, Indian Health Services coverage, and other types of coverage. This varies by race, with just 22.0% of White clients lacking healthcare coverage compared with 49.3% of Hispanic clients and 43.8% of Black clients. It also varies by gender, with 38.5% of male clients lacking coverage and 37.3% for females. Trans folx and gender non-conforming individuals were disproportionately impacted by a lack of healthcare coverage, with 48.3% of transgender male clients, 50.2% of transgender female clients, and 60.4% of clients with different gender identities lacking coverage.

Services Utilization of ADAP Clients

The percentage of clients who received only full-pay medication assistance (where ADAP pays the full cost of medications) decreased from 52.6% in 2015 to 46.8% in 2019. This number is expected to decrease as more ADAP programs begin transitioning clients over to other payor models, such as insurance continuation programs, medication co-pay/deductible assistance, or insurance premium assistance. Each of these models represents cost savings for ADAP programs over the full-pay medication assistance service, as the ADAP programs are no longer paying the full cost of medications.

Breaking these services down by Health and Human Services (HHS) Region (Figure 2), Region 4, which comprises most of the American South, saw the highest percentage of ADAP clients receiving full-pay medication assistance (38.6%).

Figure 2. Map of United States Department of Health and Human Services Regions

Photo Source: HRSA, 2022

 Potential Concerns for ADAPs

There are some concerns being circulated that ADAP enrollment may begin increasing in the near future. The onset of the COVID-19 global pandemic resulted in the Secretary of HHS declaring quarterly national Public Health Emergencies (PHEs) beginning in January 2020 (Office of the Assistant Secretary for Preparedness and Response, 2022). One of the provisions of the PHE declarations required states to keep people enrolled in state Medicaid programs throughout the PHE in order to receive the temporary increase in the federal share of Medicaid costs. 

When the Secretary fails to renew the PHE, this provision, along with the increased federal funding, will end, meaning that state Medicaid programs will likely begin redetermining eligibility. This could result in an influx of clients moving off of Medicaid and back onto state ADAP programs, which are statutorily required to be the “payor of last resort.”

Additional concerns exist around the reauthorization of the Ryan White HIV/AIDS Program (RWHAP), which has not been reauthorized since 2009. Because the law has no sunset provision, meaning that it can be funded in perpetuity. There have been consistent concerns about reopening RWHAP for reauthorization for fear that Republicans in Congress will gut the program. These concerns have been voiced since at least 2013. As a result, there is little advocacy in favor of reauthorization.

Ultimately, the ADAP program is currently as “safe” as it’s ever been. Waitlists are virtually a thing of the past, meaning that eligible patients are able to gain access to the medications that they need. The ADAP Advocacy Association will continue to monitor the program for both successes and challenges.

References:

• Health Resources and Services Administration. (2020, September). Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report 2019. Rockville, MD: United States Department of Health and Human Services: Health Resources and Services Administration: HIV/AIDS Bureau: Division of Policy and Data https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/data/hrsa-adr-data-report-2018.pdf
• Health Resources and Services Administration. (2022, June). Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report 2019. Rockville, MD: United States Department of Health and Human Services: Health Resources and Services Administration: HIV/AIDS Bureau: Division of Policy and Data https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/data/hrsa-adr-data-report-2019.pdf
• Office of the Assistant Secretary for Preparedness and Response. (2022, April 12). Renewal of Determination That A Public Health Emergency Exists. Washington, DC: United States Department of Health and Human Services: Office of the Assistant Secretary for Preparedness and Response: Public Health Emergency Declarations. https://aspr.hhs.gov/legal/PHE/Pages/COVID19-12Apr2022.aspx 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.