NASTAD Releases 2025 Monitoring Project Annual Report

By: Ranier Simons, ADAP Blog Guest Contributor

The National Alliance of State and Territorial AIDS Directors (NASTAD) has released its 2025 National RWHAP Part B ADAP Monitoring Project Annual Report. This is the 28th year of the report, which documents key trends, challenges, and triumphs of state and territorial AIDS Drug Assistance Programs (ADAPs). The report is based on longitudinal data acquired through survey responses. The data covers fiscal year 2023 (FY2023) and calendar year 2023 (CY2023). Of the 58 surveyed jurisdictions that received ADAP earmark funding, 49 provided data. No fiscal or programmatic data were received from Alabama, Montana, West Virginia, the U.S. Virgin Islands, or the Pacific Island Jurisdictions. Limited programmatic data were received from Alaska and South Dakota.

Photo Source: NASTAD

Key findings from this year’s report include:

• Ryan White Part B program funding remained flat. Congressional appropriations for RWHAP Part B in FY2023 was $1.3 billion, with $899.7 million awarded explicitly to ADAP from HRSA. This was the same level of funding as in FY2022.
• Pharmaceutical rebates accounted for the largest share of the overall FY2023 ADAP budget, at 50%. Federal ADAP earmark funding constituted 31%
• The total number of clients enrolled, the number of new clients enrolled, and total number of clients served increased from FY2022. There were 4.7%, 15%, and 4% increases, respectively. 
• Out of the top ten states with the highest number of ADAP clients served, Florida was first serving 29,883 clients, and California was second serving 28,123 clients.
• Of all ADAP clients surveyed from responding jurisdictions during CY2023, 41% had incomes at or below 100% of the federal poverty level (FPL). The majority of ADAP clients, 66%, have incomes at or below 200% FPL.
• In CY2022, 42%, less than half of clients served were people of color, with the majority identifying as Black/African American. In CY2023, 38% of ADAP clients served were Black/African American, compared to 46% in CY2018. Conversely, the proportion of White ADAP clients increased to 54% in CY2023 from 40% in CY2018. Hispanic/Latinx clients comprised 33% of CY2023 clients served compared to 21% in CY2018.
• Biktarvy constituted the majority of ADAP antiretroviral drug expenditures

Photo Source: NASTAD

Discussion

One of the primary goals of Ending the HIV Epidemic in the U.S. (EHE) is viral suppression (Centers for Disease Control and Prevention [CDC], 2024, Mar 20). Of the 47 jurisdictions that provided data, 85% of ADAP clients served in CY2023 reported viral suppression. Comparatively, out of 47 reporting programs in CY2014, 63% reported viral suppression, and out of 53 reporting programs in CY2018, 80% reported viral suppression. These increasing numbers are evidence that ADAP programs are effective and worthwhile public health expenditures. Moreover, CY2023 ADAP client viral suppression is vastly higher than the overall percentage of all people in the U.S. living with diagnosed HIV reporting viral suppression in 2022, which was only 65%. (Centers for Disease Control and Prevention [CDC], 2024, Dec 12).

Regarding funding, some state ADAPs are concerned about the prospect of major reductions in federal funding to state Medicaid programs as part of FY2025 Congressional budget processes. This would fiscally adversely affect ADAPs since federal funding reductions would likely not be bolstered by any increased state investment into the Medicaid program. Thus, ADAPs would have to spend more to help those who may lose Medicaid coverage or be unable to transition to Medicaid if there is a loss of expansion.

Moreover, ADAPs provide full-pay medication assistance as well as ADAP-funded insurance programs for which clients' premiums, deductibles, and cost-sharing are paid. In CY2022, ADAPs provided insurance support for 128,418 clients, spending $698 million with an average cost per enrollee of $5,272; in CY2023, ADAPs spent $745 million on 101,502 clients with an average cost of $7344. Total and per-client expenditures were markedly higher in CY2023, although fewer people were served. According to the report there were also 44,033 ADAP clients served who were enrolled in Medicare (Table 18). It is possible to qualify for Medicare and ADAP with ADAP paying for patient cost-sharing of Medicare Part D prescription drugs that ADAPs cover. The changing landscape of insurance assistance proves that more funding is needed, not less.

Photo Source: NASTAD

 Geographically, the annual report reveals a shift in viral suppression trends. The states with less than 80% of ADAP clients with <200 copies/ml viral loads are primarily concentrated in the Midwest (Chart 8). Seven EHE jurisdictions are in the U.S.: Cook County, Illinois; Marion County, Indiana; Wayne County, Michigan; the entire state of Missouri; and Cuyahoga, Franklin, and Hamilton Counties in Ohio (AETC. 2023). This would indicate that research needs to be done to uncover what caused the shift from the lower levels of viral suppression among ADAP clients in the South to ADAP clients in the Midwest.

The 2025 National RWHAP Part B ADAP Monitoring Project Annual Report contains a wide range of data in its pages, tables, and charts. The report is encouraging, proving that the RWHAP program effectively achieves beneficial health outcomes for the clients it serves. It is also an alert to challenges and a forecast of how ADAPs may need to adjust and innovate to survive.

[1] AIDS Education and Training Center (2023, August 4). AETCs and the Ending the HIV Epidemic Initiative. Retrieved from https://aidsetc.org/ehe

[2] Centers for Disease Control and Prevention (2024, March 20). Ending the HIV Epidemic in the US Goals. Retrieved from https://www.cdc.gov/ehe/php/about/goals.html

[3] Centers for Disease Control and Prevention (2024, December 12). National HIV Progress Report, 2024. Retrieved from https://stacks.cdc.gov/view/cdc/170363

[4] National Alliance of State and Territorial AIDS Directors (2025). 2025 Annual Report: National RWHAP Part B ADAP Monitoring Project annual report. Retrieved from  https://nastad.org/2024-rwhap-part-b-adap-monitoring-report

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.

NASTAD Releases 2024 Monitoring Project Annual Report

By: Marcus J. Hopkins, Guest Contributor

The National Alliance of State and Territorial AIDS Directors (NASTAD) has released its 2024 National RWHAP Part B ADAP Monitoring Project Annual Report documenting key trends, challenges, and successes faced by state and territorial AIDS Drug Assistance Programs (ADAPs). This report is developed using information provided to NASTAD by state and territorial ADAPs through information requests, and the 2024 report includes information from 49 states, the District of Columbia, and Puerto Rico. No fiscal or programmatic data were provided by West Virginia, the U.S. Virgin Islands, or the Pacific Island Jurisdictions, including American Samoa, Guam, the Northern Mariana Islands, the Marshall Islands, Palau, and the Federated States of Micronesia.

Key finding from this year’s report include:

• Ryan White Part B programs saw an increase of 1.6% in their Congressional appropriation from Fiscal Year (FY) 2021 to FY2022, from $1.27 billion to $1.29 billion, while ADAP-specific funding provided by the Health Resources Services Administration (HRSA) remained flat at $900m. As NASTAD notes, federal awards alone are not sufficient to meet the needs of Part B programs or their clients;
• Pharmaceutical rebates constituted the largest proportion of the overall ADAP budget for FY2022 at 47%, compared to federal ADAP earmark funding at 34% (Figure 1);

Figure 1 - Total ADAP Budget, By Source, FY1996–FY2022

Photo Source: NASTAD

Note: Rebates are tracked separately from front-end discounts and account for both repayment to ADAP from a manufacturer for a drug expenditure and any additional savings generated. 

Retrieved from National Alliance of State and Territorial AIDS Directors, 2024.

• Reporting ADAPs served a total of 235,615 clients in Calendar Year (CY) 2022, with California serving the most clients at 29,774;
• The percentage of ADAP clients served by ADAP-funded insurance programs increased from 42% in CY2021 to 44% in CY2022, matching for the first time the percentage of ADAP clients served by full-pay medication programs (also 44% in CY2022);
• The age demographics of clients served by ADAPs has shifted slightly as patients age, with clients aged 25-44 increasing from 39% to 40%, those aged 65+ increasing from 12% to 13% from CY2021 to CY2022. Adults aged 45-64 continue to represent the largest percentage of ADAP clients, at 44%, down from 46% in CY2021;
• A majority of the 51 ADAPs that provided information (34, n=67%) have opted to eliminate the six-month recertification requirement. The programs that have left that in place include: Alaska, Indiana, Kansas, Kentucky, Maryland, Massachusetts, Nevada, New Hampshire, North Carolina, Ohio, Oklahoma, Rhode Island, Texas, and Wyoming (NASTAD, 2024);
• 84% of clients served by the ADAPs achieved viral suppression of their HIV (i.e., they achieved viral loads of <200 replicating copies). Clients who received ADAP-funded insurance only or a combination of ADAP-funded insurance and full-pay medication program services were more likely to achieve viral suppression than those who received only full-pay medication program services (Figure 2).

Figure 2 - ADAP Clients Served by Program, by Viral Load, CY2022

Photo Source: NASTAD

Note: Retrieved from NASTAD, 2024.

• 17 of the 51 responding ADAPs reported that less than 80% of their enrolled clients had achieved viral suppression—Alabama, Alaska, Arkansas, Colorado, Connecticut, the District of Columbia, Florida, Georgia, Kentucky, Minnesota, Mississippi, New Jersey, Palau, Pennsylvania, Texas, Vermont, and Wyoming (Figure 3).

Figure 3 - ADAP Viral load Suppression Rate, by Clients Served, CY2022

Photo Source: NASTAD

Note: Retrieved from NASTAD, 2024.

Discussion

State and territorial ADAPs continue to serve as a vital component of HIV care and treatment in the United States, serving nearly a quarter-million Persons Living with HIV/AIDS (PLWHA). While the nation’s PLWHA population, as a whole, suffers from astonishingly low rates of HIV viral suppression, with just 57% of PLWHA achieving viral suppression—one of the lowest rates of viral suppression among comparable high-income countries (Figure 4).

Figure 4 - HIV Viral Suppression Rate in U.S. Lowest Among Comparable High-Income Countries, 2020 or Latest Year

 

Photo Source: KFF

Note: Retrieved from KFF, 2022.

The consistent component of these comparable countries that PLWHA do not enjoy in the United States is that PLWHA enjoy Universal Healthcare coverage in each of them. The AIDS Drug Assistance Program is one of the few programs that provides relatively comprehensive medication coverage for PLWHA, and if the findings in the NASTAD annual report are any indication, the provision of those programmatic services is highly successful in helping patients achieve viral suppression compared to patients who are not beneficiaries of those services.

Each of these nations also provides significantly more permissive and generous social support systems that include relatively easily accessible housing, nutrition, and financial assistance programs, whereas PLWHA in the United States continue to face barriers to viral suppression.

Among adults who reported feeling that they did not receive enough HIV care, nearly all (95.6%) reported experiencing at least one barrier to accessing care and treatment, and nearly two-thirds (62.6%) reported more than one barrier (Dasgupta, Tie, Beer, Fagan, & Weiser, 2021). 50% of respondents in the Dasgupta study indicated having life circumstances that impeded their ability to access care, and 34.5% of those respondents indicated that they faced problems with money or insurance coverage.

It is further interesting that viral suppression rates amongst ADAP recipients in most of the Deep South fall below 80% of ADAP clients. There are several potential factors that may contribute to these lower levels of success among ADAPs, most of which have little to do with the programmatic services, themselves, including (but not limited to):

• The accessibility of HIV care and treatment providers local to patients, including hours of operations, proximity to patients, and the quality of care patients receive;
• A lack of reliable public or private transportation to and from appointments;
• Geographic or weather barriers that may make treatment inaccessible during storm seasons;
• Poverty-driven barriers, including unstable or unaffordable housing, the inability to afford food, or the inability to afford utilities that forces patients to choose between affording to live and affording medications.

Equally interesting are the low suppression rates of ADAP recipients in northeastern states, such as Connecticut, New Jersey, Pennsylvania, and Vermont, while every other surrounding state boasts suppression rates of 80% or higher, with Connecticut and Vermont surrounded by states boasting 90% suppression rates or higher.

It is possible that lower suppression rates in these states may be the result of transportation or accessibility issues, but patients in those states generally experience fewer physical and transportation barriers than those living in the Deep South, which tends to be more rural, have fewer and less accessible public transportation options, and higher patient-to-provider ratios compared to the northeast.

Finally, while it is normal for some jurisdictions to not respond to NASTAD’s annual survey requests, the Pacific Island Jurisdictions seem to almost never respond. An examination of NASTAD reports dating back to 2019 showed that Americans Samoa, the Federated States of Micronesia, Guam, Marshall Islands, Northern Mariana Islands, and the Republic of Palau have failed to respond to survey requests every year. While the footprint of ADAP in these territories is relatively small compared to the contiguous states and Puerto Rico, it is still vital that we be able to gain insight into the operations and efficacy of ADAP programs in those jurisdictions.

This issue is not unique to NASTAD. In attempting to gather timely data about programs in those territories, ADAP Advocacy has encountered similar challenges when attempting to access government websites, eligibility requirements, and contact information for the Pacific Island Jurisdictions.

ADAP Advocacy will continue to monitor state and territorial ADAP reports.

References:

Dasgupta, S., Tie, Y., Beer, L. Fagan, J., & Weiser, J. (2021, October). Barriers to HIV care by viral suppression status among US adults with HIV: Findings from the Centers for Disease Control and Prevention Medical monitoring project. Journal of the Association of Nurses in AIDS Care, 32(5): 561-568. https://doi.org/10.1097%2FJNC.0000000000000249

KFF. (2022, June 03). HIV viral suppression rate in U.S. lowest among comparable high-income countries, 2020 or latest year. San Francisco, CA: KFF: HIV/AIDS: Slide. https://www.kff.org/hivaids/slide/hiv-viral-suppression-rate-in-u-s-lowest-among-comparable-high-income-countries-2020-or-latest-year/

National Alliance of State and Territorial AIDS Directors. (2023). 2023 national RWHAP Part B ADAP monitoring project annual report: Section 3: Meeting the need: Ensuring access to essential medicines for People Living with HIV/AIDS. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/2023-rwhap-part-b-adap-monitoring-report/section-3

National Alliance of State and Territorial AIDS Directors. (2024). 2024 national RWHAP Part B ADAP monitoring project annual report. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/2024-rwhap-part-b-adap-monitoring-report

National Alliance of State and Territorial AIDS Directors. (2024). 2024 national RWHAP Part B ADAP monitoring project annual report: Section 1. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/2024-rwhap-part-b-adap-monitoring-report/section1

National Alliance of State and Territorial AIDS Directors. (2024). 2024 national RWHAP Part B ADAP monitoring project annual report: Section 2: Meeting the need: Ensuring access to essential medicines for People Living with HIV/AIDS. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/2024-rwhap-part-b-adap-monitoring-report/section2

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.

Co-Infection: HIV & Hepatitis C Therapies Under State AIDS Drug Assistance Programs

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

According to amfAR, The Foundation for AIDS Research, there are an estimated 1.2 million people living with HIV/AIDS in the United States, with as many as 150,000 unaware of their status.[1] The U.S. Centers for Disease Control & Prevention (CDC) estimates one percent of the adult population, or nearly 2.4 million Americans, are living with Hepatitis C (HCV).[2] The intersection between these dual epidemics continues to place significant strain on the nation's public health system. In 2009, approximately one in five of the HIV-infected adults who were tested for past or present HCV infection tested positive.[3] It is unknown how the ongoing Covid-19 pandemic is influencing HIV/HCV co-infection.

Photo Credit: iStock (rights purchased)

What we do know is people living with HIV-infection face a higher risk of long-term liver failure as a result of co-infection with HCV. In fact, HCV-related liver failure has become the leading non-AIDS-related cause of death among people living with HIV-infection in the United States – and as such, treating HCV is of paramount importance.[4]

HIV/HCV co-infection remains a growing and evolving epidemic. Advances in HIV medication since the introduction of highly-active anti-retroviral therapy in 1996 has increased a detection of sexually transmitted HCV infection. Dating back to 2011, sexual transmission of HCV is becoming a growing concern amongst men-who-have-sex-with-men (MSM).[5] 

The HIV/HCV Co-Infection Watch — a program of the Community Access National Network (CANN) — delivers relevant information from a “patient-centric” perspective on access to care and treatment. The three primary groups best suited for this information include patients, healthcare providers, and community-based AIDS Service Organizations.

Of particular importance to the ADAP Advocacy Association are the patients who frequently rely on coverage provided by state- and federally-funded programs – such as the AIDS Drugs Assistance Program (ADAP). According to the National Alliance of State & Territorial AIDS Directors (NASTAD), "While ARVs represent 95% of all CY2018 ADAP drug expenditures, 0.4% and 1% were expended on hepatitis B and C treatment, respectively."[6]

Dating back to the passage of the Affordable Care Act, NASTAD has detailed the availability of testing, care and treatment for individuals who are mono-infected with HCV and co-infected with HCV and HIV, in light of newly available curative treatments for HCV.[7]  NASTAD has also made available an interactive map highlighting the important work of health department HIV and viral hepatitis programs.

Additionally, CANN's HIV/HCV Co-Infection Watch includes detailed information on States whose ADAP drug formularies cover HCV therapies. Summarized Jen Laws, Project Director for the HIV/HCV Co-Infection Watch, “For purposes of our monitoring, coverage is broken down into ten categories - Basic Coverage, Sovaldi, Harvoni, Zepatier, Epclusa, Vosevi, Mavyret, Pegasys, Harvoni (generic), and Epclusa (generic). This will be expanded as newer treatment options become available."

Photo Source: HIV/HCV Co-Infection Watch

While 47 of the country's 56 state and territorial ADAPs provide some form of HCV coverage, only 44 provide coverage for direct acting agents matching with the standards of care provided for by American Association for the Study of Liver Diseases and the Infectious Diseases Society of America. The quarterly report monitors for changes in HCV medication coverage. Most recently published in April 2021, it notes several changes with regard to HCV treatment coverage among ADAPs, primarily as a result of budget impacts due to COVID-19. For example, Texas's program has ceased coverage of any HCV therapies except for Epclusa (brand only), and Georgia's ADAP has stopped paying for all HCV therapies, while maintaining them as drugs on the formulary.

Laws further reflected, "Program information can be challenging to navigate and the Watch is an invaluable as a tool to help patients navigate what's available to help them, when they need it." Laws added, "As far as HCV treatment coverage, given the significant rate of HCV coinfection with HIV, it's unfortunate to see some ADAPs treat access to and coverage of HCV medications as optional or fail to adopt medication coverage in alignment with standards of care because we know treating the medical needs of PLWH holistically leads to a higher rate of positive health outcomes."

The HIV/HCV Co-Infection Watch list-serve sign-up form is available online: https://www.tiicann.org/signup_listserv.php.

[1] amfAR, The Foundation for AIDS Research (June 2020). Statistics: United States. Retrieved online at https://www.amfar.org/about-hiv-and-aids/facts-and-stats/statistics--united-states/#:~:text=An%20estimated%201.1%20million%20people%20in%20the%20United,15%25%20of%20those%20don’t%20know%20they%20are%20infected.

[2] Centers for Disease Control & Prevention (2018, November 18). CDC Estimates Nearly 2.4 Million Americans Living with Hepatitis C. U.S. Department of Health & Human Services. Retrieved online at https://www.cdc.gov/nchhstp/newsroom/2018/hepatitis-c-prevalence-estimates-press-release.html. 

[3] Centers for Disease Control & Prevention (2020, September 21). People Coinfected with HIV and Viral Hepatitis. U.S. Department of Health & Human Services. Retrieved online at https://www.cdc.gov/hepatitis/populations/hiv.htm. 

[4] Community Access National Network (April 2021). HIV/HCV Co-Infection Watch – About. Retrieved online at https://www.hiv-hcv-watch.com/about.

[5] U.S. Centers for Disease Control & Prevention, MMWR Vol. 60 No.28, July 22, 2011.

[6] National Alliance of State & Territorial AIDS Directors (2020, August 10). NATIONAL RYAN WHITE HIV/AIDS PROGRAM (RWHAP) PART B AND ADAP MONITORING PROJECT: 2020 ANNUAL REPORT. Retrieved online at https://www.nastad.org/PartBADAPreport.

[7] National Alliance of State & Territorial AIDS Directors (2014, December 4). Access to Care and Treatment for HCV Mono-Infection and HIV/HCV Co-Infection. Retrieved online at https://www.nastad.org/sites/default/files/resources/docs/HCV-HIV-Care-Access-Webinar-December-2014.pdf.

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.

NASTAD Releases 2020 Monitoring Project Annual Report

By: Marcus J. Hopkins, Policy Consultant & Guest Contributor

In early June 2020, the National Alliance of State and Territorial AIDS Directors (NASTAD) released its “2020 National RWHAP Part B and ADAP Monitoring Project Annual Report”, and within, unveiled some interesting statistics.

In Calendar Year (CY) 2018, the Ryan White HIV/AIDS Program (RWHAP) provided service to 283,480 clients. This represents 26% of the estimated 1.1 million people estimated to be living with HIV in the U.S. (NASTAD, 2020). This represented a 16% increase from the 245,245 clients served in CY2017.  By comparison, in 2018, Medicaid was the largest source of coverage for adults living with HIV in the U.S., covering 40% of People Living with HIV (PLWH) (Dawson & Kates, 2020).

A more interesting revelation is how those clients are access healthcare via the RWHAP’s AIDS Drug Assistance Program (ADAP). Of the 242,727 clients who received services via ADAP in CY2018, 54% of them did so using insurance (either public, or private insurance for which the ADAP program paid premium(s), deductibles, and/or cost-sharing/co-payments), whereas 46% benefited from the full-pay prescription program, only (NASTAD, 2020).

Addition interesting info are as follows:

RYHAP Part B:

• Among RWHAP Part B clients served during calendar year 2018, 49% had incomes less than 100% of the federal poverty level (FPL) whereas 12% of the general population were living at or below the FPL. By comparison, 53% of RWHAP Part B clients were reported as having incomes below 100% FPL in calendar year 2017.
• RWHAP Part B clients were also more likely to be people of color (57% vs. 23%), with the majority 82% of clients of color reported as Black/African American.
• By ethnicity, 21% of RWHAP Part B clients were reported as Hispanic/Latinx (vs. 18% in the general population).
• The majority of clients served identified as male (72%) whereas 26% were identified as female. Comparatively, 49% and 51% of the U.S. population in 2018 were reported as male and female, respectively. This difference is reflective of the disproportionate prevalence of HIV among men nationally; 76% of all adult PLWH in 2017 were male.
• One percent of RWHAP Part B clients were reported as transgender in CY2018, 86% of whom identified as trans women, 3% as trans men, and 10% as transgender - other.

ADAP:

• Forty percent of ADAP clients served in CY2018 had incomes below 100% FPL, 13% less than those served by RWHAP Part B (53%).
• In 2017, 40% of all RWHAP clients were enrolled in Medicaid.
• 44% of ADAP clients were reported as people of color – slightly less than the 57% of RWHAP Part B clients.
• A greater proportion of ADAP clients (89%) were Black/African American, compared to 82% of RWHAP Part B clients.
• 27% were of Hispanic/Latinx ethnicity (vs. 21% among RWHAP Part B clients).
• By gender, ADAP clients were more likely to be male than those PLWH served by RWHAP Part B; 77% of ADAP clients were reported as male, 21% as female, and 1% as transgender.
• Among transgender ADAP clients, 84% were reported as trans women, 3% as trans men, and 13% as transgender – other.

It is clear, from NASTAD's reporting, that the Ryan White HIV/AIDS Program continues to serve a vital role in ensuring that PLWH in the U.S. continue to have access to the essential healthcare and medication coverage and services necessary to reach viral suppression and the elimination of HIV in the United States. The report can be downloaded online at https://www.nastad.org/PartBADAPreport.

References:

• Dawson, L. & Kates, J. (2020, July 09). Insurance Coverage and Viral Suppression Among People with HIV in the United States, 2015-2018. 4. Washington, DC: Kaiser Family Foundation: Charts & Slides. https://www.kff.org/slideshow/insurance-coverage-and-viral-suppression-among-people-with-hiv-in-the-united-states-2015-2018/

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.

NASTAD Releases Updated 2019 ADAP Formulary Database

By: Tim Horn, Director, Medication Access and Pricing, NASTAD

The National Alliance of State & Territorial AIDS Directors ("NASTAD") has released an updated 2019 Online AIDS Drug Assistance Program ("ADAP") Formulary Database ("the Database"), which may be accessed via the accompanying User’s Guide. The Database provides an online, searchable, publicly available resource detailing state-by-state ADAP coverage of medications both individually and by drug class including HIV antiretroviral (ARV) treatments, “A1” Opportunistic Infections (A1 "OI") medications, treatments for hepatitis B and C, mental health and substance use treatment medications, and various vaccines and laboratory tests and includes ADAP formulary coverage for all 50 states, the District of Columbia, Guam, Puerto Rico, and the U.S. Virgin Islands as of December 31, 2018.

 Key findings from the updated 2019 ADAP Formulary Database include:

• 11 ADAPs have “open formularies” in which all FDA-approved medications are included, excluding designated exceptions
• 42 ADAPs cover one or more hepatitis B treatment medication
• 41 ADAPs cover one or more hepatitis C treatment medication
• 39 ADAPs cover one or more of the curative direct acting antiviral ("DAA") hepatitis C ("HCV") treatment medications
• 27 cover daclatasvir (Daklinza)
• 35 cover elbasvir and grazoprevir (Zepatier)
• 36 cover glecaprevir and pibrentasvir (Mavyret)
• 33 cover ledipasvir and sofosbuvir (Harvoni)
• 30 cover sofosbuvir (Sovaldi)
• 31 cover sofosbuvir, velpatasvir (Epclusa)
• 22 cover sofosbuvir, velpatasvir, and voxilaprevir (Vosevi)
• 48 ADAPs cover one or more of the most frequently prescribed mental health treatment medications
• 30 ADAPs cover one or more substance use treatment medication

NASTAD thanks state ADAP coordinators who provided the important data that comprises the ADAP Formulary Database. Questions regarding the Database may be directed to Amanda Bowes, Manager, Health Care Access.

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!

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.

NASTAD Releases Updated 2017 ADAP Formulary Database

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

Allowing people living with HIV/AIDS ("PLWHAs") to make informed decisions about their own healthcare has been a cornerstone of the ADAP Advocacy Association's mission since the organization launched in 2007. All too often, local service providers and advocacy organizations take a paternal approach to PLWHAs, evidenced by the complaints expressed directly by the people themselves. One organization should be commended for their efforts to put important treatment-related information directly at the fingertips of PLWHAs, specifically as it relates to drug formularies under the AIDS Drug Assistance Program ("ADAP").

Photo Source: lookfordiagnosis.com

The National Alliance of State & Territorial AIDS Directors ("NASTAD") announced late last year that it had updated its Online AIDS Drug Assistance Program (ADAP) Formulary Database (2017 version). According to NASTAD, its database provides "an online, searchable, publicly available resource detailing state-by-state ADAP coverage of medications both individually and by drug class including HIV antiretroviral ("ARV") treatments, A1 Opportunistic Infections ("A1 OI") medications, treatments for hepatitis B and C, mental health and substance use treatment medications, and various vaccines and laboratory tests."[1]

The database offers the following:[2]

• General Information
• Antiretroviral medications
• ARV Generic Equivalents
• “A 1” opportunistic infection medications
• Hepatitis B treatments
• Hepatitis C treatments
• Substance use treatment medications
• Mental health treatment medications
• Other medication categories
• Vaccines
• HIV & STD diagnostics
• Hepatitis C diagnostics

NASTAD's 2017 Online AIDS Drug Assistance Program Formulary Database is available online at https://www.nastad.org/adap-formulary-database.

Making such a valuable resource available directly to PLWHAs (and others) cannot be under-estimated in its importance. Access to timely, appropriate care and treatment is essential to achieving improved medication adherence, greater peace-of-mind, and better health for people living with any chronic health condition. Yet we know one of the most stressful things for PLWHAs are their medications. More efforts like NASTAD's database should be implemented across the treatment cascade.

In fact, that is the very reason why we launched our ADAP Directory. It offers PLWHAs (and others) a one-stop online resource center for the latest ADAP information for better decision-making for HIV/AIDS care; improved quality of HIV/AIDS information; and assistance for advocates and medical staff. It also includes an ADAP Eligibility Calculator. The ADAP Directory is available online at http://adap.directory.

Yes, that was a shameless plug for our flagship program. Now back to NASTAD's efforts...

NASTAD's database is very comprehensive. Some key findings from the updated 2017 ADAP Formulary Database include:[3]

• 12 ADAPs have “open formularies” in which all FDA-approved medications are included, excluding designated exceptions
• 39 ADAPs cover one or more hepatitis B treatment medication
• 40 ADAPs cover one or more hepatitis C ("HCV") treatment medication
• 34 ADAPs cover one or more of the curative direct acting antiviral ("DAA") HCV treatment medications
• 46 ADAPs cover one or more of the most frequently prescribed mental health treatment medications
• 27 ADAPs cover one or more substance use treatment medication

Any questions about NASTAD's database should be directed to Amanda Boyles at abowes@NASTAD.org. Kudos, NASTAD! Kudos!

__________

[1] Penner, Murray (2017, November 29); NASTAD Releases Updated 2017 ADAP Formulary Database; National Alliance of State & Territorial AIDS Directors (NASTAD). 
[2] National Alliance of State & Territorial AIDS Directors (2017, November 29); 2017 ADAP Formulary Database; National Alliance of State & Territorial AIDS Directors (NASTAD); page 4. 
[3] Penner, Murray (2017, November 29); NASTAD Releases Updated 2017 ADAP Formulary Database; National Alliance of State & Territorial AIDS Directors (NASTAD). 

Kaiser Family Foundation Publishes Fact Sheet on AIDS Drug Assistance Programs (ADAPs)

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

The Kaiser Family Foundation (KFF) recently published an excellent Fact Sheet on the AIDS Drug Assistance Programs (ADAPs), which are authorized under the Ryan White CARE Act. ADAP provides medications for the treatment of HIV disease for people who are uninsured, or under-insured. The ADAP Advocacy Association commends KFF for making this important educational tool available.

Download the KFF Fact Sheet.

The KFF Fact Sheet is broad, in that it provides relevant background information about ADAP, as well as budgetary summaries, drug formularies, and program expenditure breakdowns. It also highlights information on eligibility requirements, client demographical data, cost containment measures, drug purchasing models, and pertinent information related to Medicare Part D. It serves as a useful tool, especially for advocates trying to educate lawmakers at the federal, state, and local levels.

Did you know that ADAPs are not entitlement program?[1]

Did you know that State funding only accounted for 6% of the overall ADAP budget?[2]

Did you know that the average amount spent on drug purchases and co-payments was $8,663?[3]

Did you know that 257,396 people were enrolled in ADAPs in CY 2015, ranging from 140 in Wyoming to more than 35,000 in California?[4]

Did you know that not all State ADAPs received rebates from drug companies?[5]

These interesting facts, along with others can be viewed online at http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.

Source: Kaiser Family Foundation

The National Alliance of State & Territorial AIDS Directors (NASTAD) released its 2017 National ADAP Monitoring Project Annual Report earlier this year, which tracked state-by-state programmatic changes, emerging trends, and latest available data on the number of clients served, expenditures on prescription drugs, among other things. The Fact Sheet on the AIDS Drug Assistance Programs (ADAPs) published by KFF certainly complements the comprehensive analysis done by NASTAD on the program, annually.

Of particular interest to the ADAP Advocacy Association — as well as many ADAP stakeholders — is the overview on the drug formularies provided in the KFF Fact Sheet. These drug formularies are the foundation by which states mold their strategies to promote access to care and treatment. According to the KFF Fact Sheet, some key points of interest include:[6]

• Six (6) states had an open formulary
• All states offered all of the drugs identified in the “recommended regimens” in the nation’s HIV treatment guidelines.
• Of the 45 ARVs currently available (including multi-class combination products and generics), ADAP formularies covered between a low of 37 drugs in Arkansas to all 45 in 27 states.
• In addition to ARVs, many ADAPs provide access to drugs to treat opportunistic infections and HIV co-infection (e.g. treatment for hepatitis).

The importance of state drug formularies cannot be understated!

Dating back to the inception of this organization ten years ago, we have routinely sounded a cautionary alarm that the ADAP waiting lists (which were officially eliminated several years ago) are only the “tip-of-the-iceberg” because other cost containment measures restrict access to care and treatment. Among them, restrictive drug formularies. By limiting the treatment regiments available to people living with HIV/AIDS, states are indeed restricting access to care and treatment. These restrictions can also impact treating other chronic conditions associated with the disease, such as lipodystrophy or diarrhea.

Concerns over restricted state drug formularies was charactered as follows by Eddie Hamilton, Founder of the ADAP Educational Initiative: "The increased cost or additional effort of restricted formularies are a barrier for ADAP clients and may cause them to abandon the prescription which their doctor has written for a medically necessary reason. Many of the excluded medications are to combat side effects and co-morbidities caused by the primary antiretroviral regimens. These restrictions will continue to compromise their health and will lead to costly complications such as hospitalizations, lower medication adherence and overall higher healthcare costs."

To be fair, State ADAPs are often forced to face the harsh reality of prioritizing limited resources, especially since not all of them receive state matching funds or pharmaceutical rebate dollars. Also to NASTAD's credit, they make available another great resource, specific to ADAP drug formularies. Download the 2016 ADAP Formulary Database.

To learn more about the KFF Fact Sheet on AIDS Drug Assistance Programs, or other HIV-specific information and resources offered by the Kaiser Family Foundation, visit http://www.kff.org/graphics/hivaids/.
__________

[1] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[2] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[3] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[4] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[5] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[6] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.

2017 National ADAP Monitoring Project Annual Report

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

On May 18th, an analysis of the AIDS Drug Assistance Program (ADAP) was released by the National Alliance of State & Territorial AIDS Directors (NASTAD). The 2017 National ADAP Monitoring Project Annual Report tracked state-by-state programmatic changes, emerging trends, and latest available data on the number of clients served, expenditures on prescription drugs, among other things.

The report, which is published annually by NASTAD, provides stakeholders an important snapshot into ADAP-related data, information, and trends. This year's report focuses on several areas, including:

• The importance of the Ryan White Program and ADAP (p. 6)
• What does it take to achieve viral suppression (p. 20)
• Comprehensive care for people living with HIV/AIDS (p. 42)
• Who benefits from services (p. 58) 

Upon releasing the 2017 National ADAP Monitoring Project Annual Report, Murray C. Penner, NASTAD's executive director, stated the following:[1]

"Over the course of time, there have been significant shifts in funding and client needs; ADAPs have worked to meet those needs, however, have sometimes found themselves unable to serve all those in need of services. Lessons have been learned from these circumstances and ADAPs continue to look to identify how they can meet client need and ensure program sustainability. At a time now when ADAPs are documenting program stability, it is imperative that ADAPs look back on how challenges were resolved and look to the future of client needs and determine ways to prepare for the future. ADAPs are at an unprecedented juncture of being able to look to target resources to populations that need them most, to partner with the RWPB to ensure that the whole client’s needs are met, and to identify ways to bolster treatment for individuals’ health."

The 2017 National ADAP Monitoring Project Annual Report overall yielded some very compelling data on the success of the AIDS Drug Assistance Program nationwide in 2016. Some key points are:

• ADAPs provided medications to 225,517 clients in calendar year (CY) 2015, a 235% increase in utilization over the last 10 years;[2]
• The majority (77%) of all clients served by ADAPs in CY2015 were reported as virally suppressed, de ned as having a viral load that is less than or equal to 200 copies/mL;[3]
• Twenty-eight (28) states contribute funding to their ADAP budget.[4]
• Thirty-eight (38) states receive drug rebates to their ADAP budget.[5]
• Overall, nearly 98% of Part B and ADAP budgets are allocated to program services; only 2.2% of Part B and ADAP funding is used to administer the program;[6]
• The majority of ADAPs pay premiums (84%), deductibles (84%) and prescription co-payments/co-insurance (94%) on behalf of eligible clients.[7]
• Forty-three (43) ADAPs reported using funds for insurance purchasing/continuation, representing $161.8 million in estimated expenditures (10% of the ADAP budget at that time) for 30,621 ADAP clients, with an average cost per client of $5,284.[7]

Accompany this year's report are two infographics. NASTAD used one infographic to provide an analysis on ADAPs with the highest rates of viral suppression. Download the infographic, Key Characteristics of Ten ADAPs With Highest Rates of Viral Suppression. The other infographic gives an analysis on the Ryan White Part B and ADAP partnership. Download the infographic, Ryan White Part B and ADAP Partnership to Bolster Health Outcomes.

Photo Source: NASTAD

Several advocates commented on the 2017 National ADAP Monitoring Project Annual Report, providing some important state perspectives. They include:

Ken Bargar, co-chair of the Florida HIV/AIDS Advocacy Network in Florida stated, "FHAAN has made access to our state's ADAP for Floridians a number one priority for many years. As Co Chair, I can tell you that we experience a great relationship with the Florida Department of Health, and we have provided many solutions for improving the program that they have implemented over the years. As a Medicaid non-expansion state, ADAP is crucial for people living with HIV in Florida. The increasing amount of clients receiving premium support for ACA plans has made this program robust and diverse in the ways they get access to HIV medication to our state’s most vulnerable clients. Recently, we were thrilled to see “pharmacy choice” finally became a reality for a section of the programs enrollees."

Eddie Hamilton, executive director of the ADAP Educational Initiative in Ohio, "In terms of transparency and the responsiveness to client’s concerns, Ohio's ADAP has come a long way since the last waiting list era. The ease of access to the program has drastically improved as there are now multiple routes of access (via case management, or direct application)."

Marcus J. Hopkins, an ADAP recipient and HIV/AIDS advocate in West Virginia, summarized, "West Virginia's ADAP is one of only twelve states in which 89% of enrolled clients in 2015 have achieved HIV Viral Loads ≤200. Our state had 1,139 clients in 2015, and only 3 Ryan White-specific clinics, meaning that many clients must travel 60 miles or more in order to reach one of these facilities. Our state is broken up into seven Ryan White regions, with 1 primary case manager contact per region. The small number of clinics serving 55 clinics (not including private Infectious Disease specialists) sometimes creates confusion, as clients living in different regions may have to coordinate between two different case workers. West Virginia's program also offers insurance continuation assistance, providing premium and co-pay assistance for clients enrolled in employer-based or ACA Insurance Marketplace coverage."

Matt Pagnotti, Director of Policy and Advocacy for AIDS Alabama, noted, "Since Alabama has failed to expand Medicaid under the ACA, the state's ADAP has operated as a vital safety net for thousands of people living with HIV in Alabama. Over three fourths of the clients served by Alabama's ADAP earn 133% FPL ($16,040 a year for a single adult) or less, most of whom find themselves in the "Medicaid coverage gap." In addition, roughly 16% of those served by ADAP in Alabama qualify for subsidized health insurance under the ACA marketplace. To assist these clients in overcoming financial barriers to access and create greater coverage completion, Alabama also operates an innovative Insurance Assistance Program that pays for premiums and co-payments."

The ADAP Advocacy Association commends NASTAD for its ongoing efforts to keep stakeholders informed, and engaged on the issues enumerated in this year's National ADAP Monitoring Project. Download a copy of the 2017 National ADAP Monitoring Project Annual Report.

__________

[1] Penner, Murray (2017, May 18); NASTAD Release: 2017 National ADAP Monitoring Project Annual Report; National Alliance of State & Territorial AIDS Directors.

[2] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 60. Retrieved from http://www.nastad.org/sites/default/files/2017-national-adap-monitoring-project-annual-report.pdf.

[3] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 22. Retrieved from http://www.nastad.org/sites/default/files/2017-national-adap-monitoring-project-annual-report.pdf.

[4] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 9. Retrieved from http://www.nastad.org/sites/default/files/2017-national-adap-monitoring-project-annual-report.pdf.

[5] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 9. Retrieved from http://www.nastad.org/sites/default/files/2017-national-adap-monitoring-project-annual-report.pdf.
[6] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 22. Retrieved from http://www.nastad.org/sites/default/files/2017-national-adap-monitoring-project-annual-report.pdf.
[7] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 44. Retrieved from http://www.nastad.org/sites/default/files/2017-national-adap-monitoring-project-annual-report.pdf.
[8] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 43. Retrieved from http://www.nastad.org/sites/default/files/2017-national-adap-monitoring-project-annual-report.pdf.

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 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:

• Why HIV Medical Treatment Guidelines Matter (published on October 28, 2016)
• Mandating Treatment for HIV-Related Lipodystrophy: The Massachusetts experience and a call for national action (published on August 25, 2016)
• HIV-Related Belly Fat: More Than Just an Appearance Issue (published on June 23, 2016)

__________
[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.

Discriminatory Design: HIV Treatment in the Marketplace

By: Sean Dickson, Senior Manager, Health Systems Integration, National Alliance of State & Territorial AIDS Directors (NASTAD)

The National Alliance of State and Territorial AIDS Directors (NASTAD published a groundbreaking report on the treatment of HIV medications by Affordable Care Act insurance plans available on the Federally-facilitated marketplaces. This report – Discriminatory Design: HIV Treatment in the Marketplace – reveals pervasive deficiencies in marketplace plans’ coverage and pricing of HIV medications.

States and the Centers for Medicare & Medicaid Services (CMS) are currently reviewing plan designs for 2017, and this report will help guide their review to reduce discriminatory plan design for persons living with HIV. The report highlights the direct relationship between drug prices and insurer restrictions, underscoring the need for comprehensive drug pricing reform in addition to monitoring and enforcement of non-discrimination protections.

Key findings include:

• 20% of plans only cover one single-tablet regimen, Atripla, the oldest and least-recommended regimen
• One-third of plans place all covered single-tablet regimens on the specialty tier
• Over 45% of Bronze plans subject all covered single-tablet regimens to co-insurance
• 15% of plans do not cover any HIV drugs introduced since 2013
• 34% of plans place Truvada, which can prevent HIV infection as Pre-Exposure Prophylaxis (PrEP), on the specialty tier
• 29% of plans require patients to “fail-first” on another HIV drug before taking Stribild, a leading single-tablet regimen
• Cost-Sharing Reduction plans, intended to help low-income individuals access affordable insurance, have the same high levels of co-insurance as Silver plans
• Increases in drug list prices lead to increased frequency of co-insurance at statistically significant levels

The full report can be downloaded online at https://www.nastad.org/resource/discriminatory-design-hiv-treatment-marketplace.

Please contact Sean Dickson with any questions at sdickson@nastad.org.

________

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.

ADAP Directory & ADAP Formulary Database Link Stakeholders to Important Tools

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

On March 15th (2016), an important resource was once again made available by the National Alliance of State & Territorial AIDS Directors (NASTAD). NASTAD released its 2016 Online AIDS Drug Assistance Program (ADAP) Formulary Database and accompanying User’s Guide. The Database complements the patient-centric ADAP Directory, which is the ADAP Advocacy Association's flagship program.

NASTAD describes the provider-focused Database as "an online, searchable, publicly available resource detailing state-by-state ADAP coverage of medications both individually and by drug class including HIV antiretroviral (ARV) treatments, “A1” Opportunistic Infections (A1 OI) medications, treatments for hepatitis B and C, mental health and substance use treatment medications, and various vaccines and laboratory tests."[1]

Key findings from the 2016 ADAP Formulary Database include:[2]

• 3 ADAPs have “open formularies” in which all FDA-approved medications are included, excluding designated exceptions
• 38 ADAPs cover one or more hepatitis B treatment medication
• 33 ADAPs cover one or more hepatitis C treatment medication
• 19 ADAPs cover one or more of the curative direct acting antiviral (DAA) hepatitis C (HCV) treatment medications
• 9 cover daclatasvir (Daklinza)
• 17 cover dasabuvir, ombitasvir/paritaprevir/ritonavir (Viekira Pak)
• 19 cover ledipasvir and sofosbuvir (Harvoni)
• 8 cover ombitasvir, paritaprevir and ritonavir (Technivie)
• 12 cover simeprevir (Olysio)
• 17 cover sofosbuvir (Sovaldi)
• 43 ADAPs cover one or more of the most frequently prescribed mental health treatment medications
• 14 ADAPs cover one or more substance use treatment medication 

The ADAP Directory – launched in 2014 with ongoing support from AbbVie, Gilead Sciences, Janssen Therapeutics, Merck, ViiV Healthcare, and Walgreens – ensures that people living with HIV-infection have access to the information and resources they need to live healthy and productive lives. The ADAP Directory consolidates useful ADAP-related information from all 50 states and 6 territories into one convenient location for:

• easy access to ADAP resources organized by state and territory;
• updated, current information for all 56 state ADAPs -- including drug formularies; and
• uniform presentation of ADAP information for effective advocacy and easy dissemination.

The “Perfect Storm” that had ravaged the cash-strapped ADAPs between 2008-2010 exposed some very real deficiencies in the amount and quality of information made readily available to patients living with HIV/AIDS. Today, patients...and in fact, all community stakeholders...have much more user-friendly information at their disposal.

Aside from the interactive map, which allows users to navigate all 56 ADAPs, other important resources and tools are available at the ADAP Directory. Among them, patient medication assistance programs and pharmaceutical patient assistance programs.

To learn more about the ADAP Directory, visit http://adap.directory. To learn more about the NASTAD Formulary Database, visit https://www.nastad.org/sites/default/files/2016-ADAP-Formulary-Database-Users-Guide.pdf.
_____

[1] National Alliance of State & Territorial AIDS Directors (NASTAD), "Update: 2016 ADAP Formulary Database," March 16, 2016.

[2] National Alliance of State & Territorial AIDS Directors (NASTAD), "Update: 2016 ADAP Formulary Database," March 16, 2016.