Showing posts with label National ADAP Monitoring Project. Show all posts
Showing posts with label National ADAP Monitoring Project. Show all posts

Thursday, March 12, 2026

NASTAD Releases 2026 ADAP Monitoring Report: Warning Signs Ahead

By: Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy

The National Alliance of State and Territorial AIDS Directors (NASTAD) has released its annual National Ryan White HIV/AIDS Program (RWHAP) Part B ADAP Monitoring Report. Highlights from the report indicate that, while the program is achieving the goal of helping ADAP recipients suppress their HIV, the failure of governments to adequately fund state programs and those programs’ increasing reliance on drug rebates imperils the lives of those recipients (NASTAD, 2026a).

2026 National Ryan White HIV/AIDS Program Part B ADAP Monitoring Project Annual Report
Photo Source: NASTAD

The 2026 ADAP Monitoring Report includes findings from Fiscal Year 2024 (FY2024) and Calendar Year 2024 (CY2024) and relies on state and territorial ADAPs to respond to NASTAD’s inquiries about their programs to ensure that the information provided therein is as accurate as possible. That said, 2 U.S. states (Mississippi and West Virginia) and 7 territories (American Samoa, the Federated States of Micronesia, Guam, Marshall Islands, the Northern Mariana Islands, the Republic of Palau, and the U.S.).S. Virgin Islands) failed to respond to these inquiries.

What’s Working Well

Viral Suppression

87% of ADAP recipients in FY/CY2024 achieved viral suppression. This is a considerable improvement over the 74% suppression rate in FY/CY2024 and much better than the national suppression rate of 67%.

HIV suppression rates in the United States have consistently lagged behind those of economically comparable nations (Figure 1). Compared to similar nations, the U.S. HIV viral suppression rate tends to fluctuate between 57% and 67%, while other nations range from 72% (Canada) to 92% (United Kingdom). Persons Living with HIV/AIDS (PLWHA) who are enrolled in ADAP have achieved viral suppression rates that allow the U.S. to “compete” with other nations.

The primary difference between the U.S. and other nations is that those nations provide universal healthcare coverage, allowing patients to rest assured that their HIV medications will be covered. Comparatively, PLWHA in the United States must contend with significant barriers to accessing HIV care and treatment due to our nation’s reliance on a for-profit healthcare system that prioritizes profits over health outcomes. The ADAP program has allowed patients similar surety that they will have access to the medications they need to live healthy, productive lives

Figure 1 - HIV Viral Suppression Rate in the U.S. Lowest Among Comparable High-Income Countries

HIV Viral Suppression Rate in U.S.
Photo Source: KFF

Whom ADAP Served in FY/CY2024

In CY2024, ADAPs served 257,644 individual clients across 49 reporting jurisdictions, acting as the primary access point for nearly one-quarter (23%) of the 1.13 million people aged 13 years or older living with diagnosed HIV in the United States at the end of 2023.

This represents a 7.5% increase over CY2019 levels, and NASTAD notes that this increase underscores patients’ growing reliance on the program despite the full implementation of the Affordable Care Act (ACA).

In FY/CY2024, 40% of all ADAP program clients earned 100% or less of the Federal Poverty Level (FPL), and 65% earned 200% or less.

Additionally, nearly half of all ADAP clients (43%) are People of Color (POC), with 38% Black, slightly lower than the 40% who were Black in CY2019. 36% of ADAP clients identify as Hispanic/Latine, a significant increase from 28% in CY2019.

Finally, the majority of ADAP clients (55%) were aged 45 or older, with the proportion of clients aged 65 or older increasing from 9% in CY2019 to 14% in CY2024.

NASTAD notes that the continued “greying” of ADAP enrollees will necessitate “…robust coordination between ADAPs and Medicare to ensure seamless coverage for the aging caseload.”

How ADAP Clients Are Served

Because the AIDS Drug Assistance Program is federally funded but state-administered, each state is allowed to determine how it serves ADAP clients. The traditional ADAP program provides full-pay medication coverage for clients, on which 47% rely.

Since the passage of the Affordable Care Act (ACA), however, the Health Resources Services Administration (HRSA) has allowed state ADAPs to use funds to purchase commercial health insurance coverage for ADAP clients and to reimburse those with employer-sponsored insurance coverage. 41% of clients across the United States rely on the ADAP program for said coverage.

Additionally, 12% of clients rely on a combination of full-pay and insurance support to address critical coverage gaps between drug formularies.

Trouble on the Horizon

In addition to the positive impacts ADAPs have had on clients, significant issues loom over state and territorial programs that threaten their solvency and continued effectiveness.

Rising Costs

The most pressing concerns faced by state ADAPs is that healthcare costs have risen exponentially and are likely to continue rising as a result of both Congressional inaction to increase federal funding for RWHAP and the deliberate refusal of Congressional Republicans to extend the enhance premium tax credits implemented by the American Rescue Plan Act of 2021 (ARPA) and extended by the Inflation Reduction Act of 2022 (IRA).

These tax credits were implemented to lower ACA Marketplace premiums for all patients, and Congress’s refusal to extend them resulted in a 21.7% increase in Marketplace premiums for benchmark second-lowest-cost Silver plans and 6%- 7% increases in employer-sponsored insurance premiums (Holahan, O’Brien, & Kennedy, 2025).

These premium increases highlight what many advocates have argued since the passage of the ACA: The ACA was never likely to control insurance costs because no limits were placed on annual premium price increases.

The primary failure of the American healthcare system is its convoluted, fragmented nature, full of special-interest-driven loopholes. The current “market” theory relies not on patients who need care, but rather on what insurers and government payors are willing to pay.

For-profit entities do not, in fact, care whether or not patients can afford the care they need; that’s not their purpose. Their purpose is to generate profits for their companies and their shareholders.

This results in a system where patients have to forego care and potentially die in the richest nation on the planet.

For ADAPs, these increased premiums pose significant threats to annual budgets, which increasingly rely on medication rebates to fill their coffers.

For nearly a decade, federal funding for ADAP has remained largely flat despite rising costs. In fact, federal funding has not accounted for more than 50% of annual ADAP funding since 2008 (Figure 2). Meanwhile, rebates now account for more than 50% of annual ADAP budgets.

Figure 2 - Total ADAP Budget, By Source, FY1996–FY2024

Total ADAP Budget, By Source, FY1996–FY2024
Photo Source: NASTAD

This places ADAPs at significant risk of being unable to continue providing the level of care and services they offer due to a revenue mechanism subject to “…intense market and regulatory volatility.”

What does this phrase mean?

Essentially, rebates rely on two things: high drug list prices and low 340B purchase prices. Under the rebate model, programs purchase medications at full list price and are reimbursed by pharmaceutical manufacturers for the difference between list price and 340B purchase price.

But what happens when price controls, such as those implemented under the Medicare Drug Negotiation Program created by the IRA, are introduced?

The purpose of the Medicare Drug Price Negotiations is to essentially limit what pharmaceutical manufacturers can charge the federal Medicare program for their medications. This means that a drug with an annual Wholesale Acquisition Cost of $36,000 may be forced to sell its medication to Medicare for $16,000 per year, which significantly reduces the total rebate amount that ADAP pharmacies may receive.

This doesn’t just apply to medications that treat HIV, but to every medication eligible for 340B rebates.

The reality is that, if patients get their way, government price controls are all but assured.

73% of patients surveyed in 2023 said that there was not enough government regulation when it comes to limiting the price of prescription drugs, with 67% or more of respondents agreeing with that sentiment across party affiliation (82% of Democrats, 67% of Independents, and 68% of Republicans; Sparks et al., 2024).

This finding wasn’t a one-time fluke; patients have long been in favor of significant increases in government regulations as they relate to controlling prescription drug prices, with 88% of patients being in favor of limiting annual drug price increases to no more than the rate of inflation, 88% of patients being in favor of the government negotiation drug prices for the Medicare program, 78% being in favor of importing drugs from Canada, 72% being in favor of increasing taxes on pharmaceutical companies that refuse to negotiate prices with the federal government, 63% being in favor of increases taxes on companies who drug prices are too high, and 57% being in favor of ending tax breaks given to drug companies for advertising spending.

What this could mean for state ADAPs is that, with increased patient fury at the healthcare industry and systems, in general, elected officials are more likely to begin listening to patients than to industries. Should significant price controls be implemented, the rebate model could collapse, leaving ADAPs facing the loss of 50% or more of their annual operating budgets.

How Are ADAPs Responding

Faced with the various funding hurdles, state and territorial ADAPs are beginning to implement “cost containment” measures (translation: cuts) that will result in significant negative outcomes for the patients who rely upon ADAP for their HIV medications.

These “cost containment” measures include (but are not limited to):

  • Decreasing income eligibility requirements so that fewer PLWHA are eligible for benefits
    • Delaware eligibility decreased from 500% of the FPL to 350%, effective for all clients as of April 1st, 2026, impacting ~176 patients
    • Florida decreased from 400% to 130% of the FPL effective March 1st, 2026, impacting ~16,000 patients
    • Kansas decreased from 400% to 250% of the FPL to receive ACA premium assistance, while maintaining the 400% limit for full-pay medication coverage, impacting ~230 patients
    • Pennsylvania decreased from 500% to 350% of the FPL effective October 1st, 2026, impacting ~1,592 patients
    • Rhode Island decreased from 500% to 400% of the FPL effective March 1st, 2026, impacting ~51 clients
    • The following states are considering additional changes to income eligibility:
      • Arkansas, Louisiana, New Jersey, Rhode Island, Virginia, & Washington State
  • Reducing RWHAP Part B funding for core medical/support services
    • Implemented in Arkansas, Connecticut, Delaware, Kansas, Louisiana, Michigan, Pennsylvania, Rhode Island, Virginia, & Wisconsin
  • Implementing or reimplementing 6-month recertification requirements
    • Implemented in Alaska, Oklahoma, & Rhode Island
  • Introducing per-patient expenditure caps
    • Implemented in Arizona, Colorado, Delaware, the District of Columbia, & Nevada
  • Reducing formulary coverage for both HIV-related and non-HIV-related medications
    • Implemented in Arizona, Florida, Louisiana, Michigan, Nevada, & Pennsylvania
  • Decreasing, restricting, or eliminating insurance premium assistance
    • Implemented in Florida, Michigan, Montana, Oklahoma, & Wisconsin (NASTAD, 2026b)

HIV advocates and activists are also concerned about the potential reintroduction of state ADAP program waitlists, with Arkansas, Louisiana, & New Jersey reporting that they are considering implementing waitlists (NASTAD, 2026b).

The reality of this landscape is that trouble is brewing for RWHAP and the PLWHA who depend upon its various parts and programs to stay alive. ADAP Advocacy will continue to monitor and report on circumstances as they develop.

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

References:

[1] Holahan, J., O’Brien, C., & Kennedy, N. (2025, December 18). Understanding the Extraordinary Increase in ACA Premiums in 2026. Washington, DC: Urban Institute: Research: Publication. https://www.urban.org/research/publication/understanding-extraordinary-increase-aca-premiums-2026

[2] KFF. (2025, January 24). HIV Viral Suppression Rate in U.S. Lowest Among Comparable High-Income Countries. Washington, DC: KFF: HIV/AIDS. https://www.kff.org/hiv-aids/hiv-viral-suppression-rate-in-u-s-lowest-among-comparable-high-income-countries/

[3] National Alliance of State and Territorial AIDS Directors. (2026a). 2026 National Ryan White HIV/AIDS Program Part B ADAP Monitoring Project Annual Report: Stabilizing the Safety Net: Stewardship and Outcomes in a Volatile Landscape. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/2026-rwhap-part-b-adap-monitoring-report

[4] National Alliance of State and Territorial AIDS Directors. (2026b, February 09). NASTAD ADAP Watch - February 2026. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/resources/nastad-adap-watch-february-2026

[5] Sparks, G., Kirzinger, A., Montero, A., Valdes, I., & Hamel, L. (2024, October 04). Public Opinion on Prescription Drugs and Their Prices. Washington, DC: KFF: Health Costs. https://www.kff.org/health-costs/public-opinion-on-prescription-drugs-and-their-prices/

Thursday, June 28, 2018

2018 National Ryan White HIV/AIDS Program Part B & ADAP Monitoring Project Annual Report

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The National Alliance of State & Territorial AIDS Directors ("NASTAD") earlier this year released its annual report on the AIDS Drug Assistance Program ("ADAP"), 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report. It includes state-level program-related major findings, tables, with data, and thus it provides the most comprehensive snapshot on all 50 states, District of Columbia, Puerto Rico, U.S. Virgin Islands, and the six U.S. Pacific Territories. It is a must-read for ADAP stakeholders!

2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report
Photo Source: NASTAD

Upon releasing the 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report, NASTAD issued the following statement:
"Building on the 22-year history of reporting on the AIDS Drug Assistance Program (ADAP), the National ADAP Monitoring Project, including the Annual Report, has evolved to include the program under which ADAP falls – the Ryan White HIV/AIDS Program (RWHAP) Part B program.  The Annual Report has thus been renamed and reimagined.  The 2018 National RWHAP Part B and ADAP Monitoring Project Annual Report (The Report) includes narrative and findings that span the totality of the RWHAP Part B program and reflect the reality that the achievements of ADAPs and other elements of the RWHAP Part B programs are inextricably linked."[1]
The report includes relevant information about ADAP's funding and structure, as well as key programmatic details  such as number of clients served, viral load suppression rates, and medical program expenditures. This year's report also includes important sections on structural inequities and the changing health care landscape. Infographics once again accompanied this year's report. In addition, a glossary of key ADAP terms can be found on the NASTAD website.

In FY2017, Congress appropriated $1.4 billion for RWHAP Part B programs, with $898.8 million appropriated to ADAP specifically. Funding was also allocated to 24 Part B Supplemental grants, 9 Part B ADAP Supplemental Treatment grants, and 9 ADAP Emergency Relief grants. Additional funding sources included Part A contribution allocated to Part B (2), State contributions (31), drug rebates (46), and other State/Federal funds (23).[2]

Some key findings include:
  • Fourth open enrollment period via Affordable Care Act insurance marketplace ended on April 30, 2017[3]
  • Part B estimated drug rebates = $193,335,704[4]
  • ADAP estimated drug rebates = $723,825,912[5]
  • $398.2 million in estimated expenditures insurance purchasing/continuation[6]
  • 48% ADAP clients served by full-pay prescription program only[7]
  • 38% ADAP clients served by ADAP-funded insurance program only[8]
  • 14% ADAP clients served by ADAP-funded insurance and full-pay prescription programs[9]
  • 273,680 RWHAP Part B & ADAP clients enrolled[10]
Other key component of the report include valuable information about clients co-infected with HIV and Hepatitis C ("HCV"), incarcerated and formerly incarcerated populations, aging populations (and related morbidity and mortality), and clients impacted by substance use. As is customary, NASTAD should be applauded for their amazing work on pulling together all of this information for ADAP stakeholders.

To download the 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report, go to https://www.nastad.org/PartBADAPreport.

__________

[1] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report. Retrieved from https://www.nastad.org/PartBADAPreport.
[2] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 9). Retrieved from https://www.nastad.org/PartBADAPreport.
[3] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 11). Retrieved from https://www.nastad.org/PartBADAPreport.
[4] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 15). Retrieved from https://www.nastad.org/PartBADAPreport.
[5] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 15). Retrieved from https://www.nastad.org/PartBADAPreport.
[6] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 25). Retrieved from https://www.nastad.org/PartBADAPreport.
[7] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 27). Retrieved from https://www.nastad.org/PartBADAPreport.
[8] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 27). Retrieved from https://www.nastad.org/PartBADAPreport.
[9] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 27). Retrieved from https://www.nastad.org/PartBADAPreport.
[10] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 30). Retrieved from https://www.nastad.org/PartBADAPreport.

Friday, January 27, 2017

Despite Treatment Improvements, Patients Remain Concerned about Lipo

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

In 2016, a lot of attention was devoted to raising awareness about lipodystrophy by the ADAP Advocacy Association — including blogs, webinars, and public comment. Whereas some advocates might see this effort as inconsequential, or even trivial considering the larger ongoing debate about access to care and treatment, it isn't either for the patients living with the condition. HIV-related lipodystrophy is very real, and its impact on the patients living with the condition shouldn't be discounted. In fact, raising awareness about lipodystrophy and treatment for the condition is consistent with our mission to improve access to care for persons living with HIV/AIDS.

HIV-related lipodystrophy can manifest itself as fat loss or fat buildup or both. It isn't uncommon for people living with HIV-infection to express concern about developing facial wasting, belly fat, lipomas, or the dreaded "buffalo hump" on the back of the neck.

Photo of man living with HIV-related lipodystrophy
Photo Source: Boston Globe

Lipodystrophy can also contribute to certain co-morbidities and health risks, such as too much fat gain in the abdominal cavity increasing the risk of heart attack and diabetes.[1] There are also psychological effects, such as depression, feeling socially isolated, and suffering from low self-esteem.[2]

According to the National Alliance of State & Territorial AIDS Directors' (NASTAD) 2016 National ADAP Monitoring Project Annual Report, approximately 50% of clients on the AIDS Drug Assistance Program (ADAP) are age 45 or older.[3] It is safe to assume that many of these ADAP clients are long term survivors, who probably were prescribed some of the older, more toxic antiretroviral medications. Many of these medication, in fact, have been attributed to HIV-related lipodystrophy.

"HIV long-term survivors are primarily impacted by lipodystrophy because it was a side effect of several of the earlier treatments," said Tez Anderson, founder Let’s Kick ASS. "Lipodystrophy is more than cosmetic. Exacerbated by body shape changes, such as facial wasting or the appearance of a distended stomach associated with excess visceral adipose tissue (VAT) is associated with a variety of health concerns, like diabetes and cardiovascular disease."

According to Anderson, lipodystrophy may increase the risk for comorbidities and may worsen a person’s quality of life and body self-image. "Too many HIV long-term survivors, lipodystrophy is like battle scars from decades of living with HIV. Talking to your doctor about it is important," he argued.

Robert Reed, who is 55 years old and HIV-positive for nearly half of his life, summarized how lipodystrophy impacted his life: "I was in very severe depression and refused to leave my house (unless for doctor's appointments) or go anywhere, until last year's ADAP Advocacy Association annual conference in Washington, DC. Lipodystrophy and the subsequent fear someone may say something about my weight led me to live in isolation for eight long years. Fortunately, I'm now on treatment for the condition."

People newly diagnosed with HIV-infection are also concerned about lipodystrophy, evidenced by a recent submission to TheBody.com's "Ask the Experts" forum:[4]
"Dear Dr. Pierone;
If someone started HAART today with one of the 5 recommended first line regimens, and he did everything else by the book ( stay fit, eat healthy, keep his total cholesterol, HDL, LDL, triglycerides and glucose levels within normal limits), what would be the likelihood (in a rough percentage figure, if possible) that he would develop lipodystrophy after 15-20 years on therapy?
Looking forward to your answer. Thanks a lot for you input, John"
The exact cause of lipodystrophy is unknown. It is estimated that between 10-30% of patients will develop the condition. For years, there's been a common misconception that this condition is just a physical cosmetic issue that is a side effect of earlier HIV treatments — something that must be accepted as a reality of now living longer with HIV-infection. Recent research dispels that myth so that even with newer antiretroviral medications this condition continues to exist. Thus, we will continue our advocacy efforts in 2017 on HIV-related lipodystrophy.

Read our related blogs on this topic:

__________
[1] National Institutes of Health (NIH); AIDSinfo.gov; "Side Effects of HIV Medicines"; 2016.
[2] POZ Magazine; "Changes to Your Face and Body (Lipodystrophy & Wasting)"; February 14, 2016.
[3] National Alliance of State & Territorial AIDS Directors (NASTAD); "2016 National ADAP Monitoring Project Annual Report"; 2016; page 19.
[4] TheBody.com; Ask The Experts; "Current Regimens and Lipo"; October16, 2016.

Friday, August 5, 2016

Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program (ADAP)

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The ADAP Advocacy Association announced earlier this week that it has launched a new project to improve access to care and treatment for transgender men and women living with HIV/AIDS. The project – “Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program (ADAP)” – aims to raise awareness about issues confronting transgender men and women living with HIV/AIDS who also access care and treatment (or whom could benefit from such care and treatment) under ADAP, as well as provide useful resources and tools to the communities serving them.

According to the Centers for Disease Control & Prevention (CDC), transgender communities in the United States are among the groups at highest risk for HIV infection.[1] The CDC reports the following key demographic data:[2]

  • Highest percentage of newly identified HIV-positive test results was among transgender people (2.1%), compared to HIV-positive test results among males (1.2%), and by females (0.4%);
  • Among transgender people in 2010, the highest percentages of newly identified HIV-positive test results were among racial and ethnic minorities:
    • Blacks/African Americans comprised 4.1% of newly identified HIV-positive test results;
    • Latinos comprised 3.0%;
    • American Indians/Alaska Natives and Native Hawaiians/Other Pacific Islanders (both 2.0%);
  • 73% of the transgender women who tested HIV-positive were unaware of their status; and
  • HIV prevalence for transgender women was nearly 50 times as high as for other adults of reproductive age.

Among male-to-female and female-to-male transgender persons, there exists a high prevalence of clinical depression (44.1%), anxiety (33.2%), and somatization (27.5%).[3]  The Department of Family Medicine and Community Health, Medical School, University of Minnesota concluded that the minority stress model necessitated education to “…confront social structures, norms, and attitudes that produce minority stress for gender-variant people; enhance peer support; and improve access to mental health and social services that affirm transgender identity and promote resilience.”[4]

Furthermore, transgender persons experience numerous healthcare-related disparities. The extent of this barrier to health care is unknown, since “U.S. health surveillance systems infrequently include measures to identify transgender respondents or monitor the health of this underserved and marginalized population.”[5]

A cross-sectional, clinic-based sample in Massachusetts between 2001-2002 yielded some interesting findings between transgender and non-transgender adults. Among them:[6]

  1. the prevalence of HIV, substance abuse, and smoking did not differ significantly for transgender and non-transgender patients; 
  2. transgender patients were more likely to endorse a lifetime suicide attempt and ideation compared to non-transgender patients (p<0.05);
  3. transgender patients disproportionately reported social stressors (violence, discrimination, childhood abuse) relative to non-transgender patients (p<0.05).

Despite spotty data, agreement exists on the following:[7]

  • Studies reveal high HIV prevalence rates among transgender women in the United States.
  • Black/African American transgender women are more likely to have HIV than transgender women of other races/ethnicities.
  • Many social and structural factors pose challenges to preventing HIV among transgender people.

The CDC concluded, “Insensitivity to transgender identity can be a barrier for those who are diagnosed with HIV and seek quality treatment and care services. Research shows transgender women with diagnosed HIV infection are less likely to be on antiretroviral therapy (ART) or achieve viral suppression. Furthermore, few health care providers receive adequate training or are knowledgeable about transgender health issues and their unique needs.”[8]

There is no concrete data on the number of male-to-female and female-to-male transgender persons, nor gender-nonconforming persons living with HIV-infection accessing services under ADAP. That said, extrapolating data from the National ADAP Monitoring Project measured against CDC data suggests there is a need for gender-variant, culturally competent awareness and guidelines designed to better serve this underserved community enrolled in ADAP (as well as those persons eligible, but not enrolled).


Whereas excellent resources exist to promote transgender HIV testing, [11] as well as available programs, faith communities, and healthcare services, [12] presently nothing exists specific to ADAP serving the transgender community. There exists a need to raise awareness among key stakeholders – among them, ADAP Directors, community service providers, and state/local advocacy organizations – about existing and emerging issues confronting the transgender community. Furthermore, there is a need to model existing best practices[13] to ADAP across the 50 states and territories in the United States.

“It is important to focus on discussing and identifying competency measures that would aid in providing solid data collection in this area – especially with respect to the number of transgender individuals accessing services under ADAP – as well as expanding access for same by way of competency,” summarized Jen Laws, an independent policy consultant specializing in various aspects of healthcare policy and focusing on the needs of the HIV affected and transgender communities. “The ADAP Advocacy is committed to improved cultural competency for the transgender community in healthcare, in general, and what that means for the population accessing ADAP, specifically.”

The purpose of the project – “Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program” – is to raise awareness about issues confronting the transgender community accessing care and treatment under the AIDS Drug Assistance Program, as well as provide useful resources and tools to the communities serving them. 

To that end, key elements of the project include:

  1. Infographic on Ryan White/ADAPs & Serving Transgender Community;
  2. Community Forum on Transgender Health & Provider Friendly Care;
  3. Educational Webinar on Ryan White/ADAPs & Transgender Health;
  4. White Paper on Model Policy for Ryan White/ADAPs Serving Transgender Clients; and
  5. Twitter Chat on Ryan White/ADAPs & Transgender Health.


To learn more about the ADAP Advocacy Association's Transgender Health Project, please email info@adapadvocacyassociation.org

__________
[1] Centers for Disease Control & Prevention, “HIV Infection among Transgender People,” August 2011; last viewed online at http://www.cdc.gov/hiv/transgender/pdf/transgender.pdf. 
[2] Centers for Disease Control & Prevention, “HIV Among Transgender People,” December 17, 2015; last viewed online at http://www.cdc.gov/hiv/group/gender/transgender/index.html. 
[3] American Journal of Public Health, “Stigma, mental health, and resilience in an online sample of the US transgender population,” May 2013; last viewed online at http://www.ncbi.nlm.nih.gov/pubmed/23488522. 
[4]  Sari L. Reisner, MA, ScD, et al, LGBT Health, “Transgender Health Disparities: Comparing Full Cohort and Nested Matched-Pair Study Designs in a Community Health Center,” April 10, 2014; last viewed online at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4219512/. 
[5] Sari L. Reisner, MA, ScD, et al, LGBT Health, “Transgender Health Disparities: Comparing Full Cohort and Nested Matched-Pair Study Designs in a Community Health Center,” April 10, 2014; last viewed online at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4219512/.
[6] U.S. Centers for Disease Control and Prevention, “HIV Among Transgender People,” Apri 18, 2016; last viewed online at http://www.thebody.com/content/63509/hiv-among-transgender-people.html?ap=1200. 
[7] U.S. Centers for Disease Control and Prevention, “HIV Among Transgender People,” Apri 18, 2016; last viewed online at http://www.thebody.com/content/63509/hiv-among-transgender-people.html?ap=1200.
[8] American Journal of Public Health, “Stigma, mental health, and resilience in an online sample of the US transgender population,” May 2013; last viewed online at http://www.ncbi.nlm.nih.gov/pubmed/23488522.
[9] National Alliance of State and Territorial AIDS Directors (NASTAD), “National ADAP Monitoring Project: 2016 Annual Report,” page 16, February 1, 2016.
[10] National Alliance of State and Territorial AIDS Directors (NASTAD), “National ADAP Monitoring Project: 2016 Annual Report,” page 17, February 1, 2016.
[11] The Center of Excellence for Transgender Health, University of California, San Francisco, “Transgender HIV Testing Toolkit,” April 11, 2016; last viewed online at http://transhealth.ucsf.edu/trans?page=ev-nthtd-2016. 
[12] Transcending Transgender Program and the Alameda County Office of AIDS Administration, “Transgender Resource Guide,” 2016; last viewed online at http://www.acphd.org/media/269820/transgender_resource_guide.pdf. 
[13] JoAnne Keatley, MSW, YMSM+LGBT Center of Excellence, “Transgender People - Exploring Diversity and Health Service Needs,” August 28, 2015; last viewed online at https://vimeo.com/141821792.