'ADAP Saves Lives: End the Wait' National Advocacy Campaign Moves Into Full Gear

By: Michelle Anderson, MA, Grassroots Advocacy & Patient Storytelling Consultant, ADAP Advocacy

For people living with HIV, access to medication is personal…deeply personal. It means staying healthy, caring for family, working, and planning for the future. When access is threatened, discussion of program funding becomes a much more immediate question: Will my next prescription be available when I need it?

The AIDS Drug Assistance Program (ADAP) exists to help eligible people living with HIV/AIDS access treatment they otherwise could not afford. For those of us who depend on this assistance, or previously relied on it, qualifying should provide some reassurance. The return of ADAP waiting lists has brought back a fear that many longtime advocates remember. Qualifying for assistance does not bring peace of mind when the assistance itself is out of reach.

Source: NASTAD

After 13 years, people living with HIV/AIDS in two states are once again being denied access to care and treatment because ADAP is running out of money. According to the National Alliance of State and Territorial AIDS Directors’ ADAP Watch, Iowa and Utah have ADAP waiting lists.

These experiences are why patient voices must remain central to the response. People living with HIV understand what consistent treatment makes possible. Their knowledge can help lawmakers understand the consequences of funding decisions and recognize the need to act before people lose access to care.

A Renewed Campaign Built on Years of Advocacy

ADAP Advocacy’s 'ADAP Saves Lives: End the Wait' national advocacy campaign is moving full gear again. Created in 2009 in response to 99 clients on ADAP waiting lists, the campaign reactivated in June 2026. Its message remains unchanged: no one should be told to wait for lifesaving medication.

Over the last several months, much of the campaign’s work has happened behind the scenes. ADAP advocacy has been rebuilding grassroots networks across six key states while simultaneously reconnecting with advocates and strengthening the relationships needed to move people into action. That work takes conversations, follow-up, and trust. It also means making sure people living with HIV/AIDS help shape the response. It also means ADAP Advocacy offering help to advocates in these states, rather than trying to march in and dictate strategy.

Source: ADAP Advocacy

The 'End the Wait' campaign has also created opportunities for communities to come together and speak up. Pennsylvania is one of the six key states where the campaign is focused on protecting ADAP access as funding shortfalls force eligibility and drug formulary restrictions that threaten care. These cost containment strategies are the invisible waiting lists in this struggle. In Pittsburgh, ADAP Advocacy held a Community Town Hall Meeting and a subsequent Health Fireside Chat focused on these challenges and their impact on people who depend on ADAP. The campaign’s newest public service announcement brought those conversations to a wider audience with a clear message: access to lifesaving HIV medication must be protected. These efforts are helping turn public awareness into support for action.

Connecting Information with Action

As the 'End the Wait' campaign expands, a newly announced interactive AIDS Drug Assistance Program Grassroots Advocacy Hub gives advocates a central place to find information and coordinate their efforts. It brings state-focused updates and campaign materials together so patients and community partners can better understand the issues and share them with others. Resources include advocacy and social media toolkits, communication and calendar-sharing tools, and other resources that organizations and individuals can use with their networks. Having these materials in one place makes it easier to bring accurate information into community conversations and keep attention on the need for reliable access to treatment.

The AIDS Drug Assistance Program Grassroots Advocacy Hub features resource centers for Florida, Illinois, Iowa, Pennsylvania, Texas, and Utah, at least to start, helping advocates take the next step. The Congress lookup identifies Members of Congress, so people know which offices to contact, while the global calendar highlights upcoming events and opportunities to participate. These features connect learning about an issue with practical ways to act. The hub is available online at https://www.adapadvocacy.org/adap-saves-lives.

Building A Collective Demand for Treatment Access

ADAP Advocacy’s 'ADAP Saves Lives: End the Wait' national advocacy campaign focuses on convincing Congress to fully fund the AIDS Drug Assistance Program. To that end, a national sign-on letter calling for an additional $175 million is now being circulated for signatures!

Source: liveabout dot com

Protecting access to HIV treatment takes support from across the community. Housing providers, food assistance programs, mental health organizations, reproductive health advocates, disability rights groups, and faith communities serve many of the same people. By adding their names to the national letter, these organizations can join a collective call to protect ADAP’s across the country.

The letter, in part, reads:

"We are concerned that federal investment hasn’t kept pace with the program's changing fiscal demands. Even as more clients enroll and healthcare costs climb, federal funding for ADAPs has remained essentially flat since 2014. In inflation-adjusted terms, that erosion has reduced the federal investment's purchasing power to roughly the level it had in 1999. As a result, states are resorting to lowering income limits, restricting access to antiretroviral treatment options, and removing access to medications used to treat comorbid conditions, including diabetes, cardiovascular disease, and chronic kidney disease."

Click here to read the full letter.

Click this link to add an organization to the national sign-on letter. Signatures are limited to organizations, not individuals. Organizational signatories are being added on a rolling basis.

Individuals can use the patient resource center’s advocacy widget to contact their legislators and urge them to fully fund ADAP.

Bringing the Conversation to Texas

The campaign’s organizing efforts will continue with a virtual statewide Texas Community Town Hall Meeting on Wednesday, November 18, 2026, from 7:00 pm to 8:00 pm CENTRAL TIME. The meeting is open to the public and will focus on access-to-care and treatment challenges involving the Texas HIV Medication Program, the state’s ADAP.

Patients, providers, community organizations, families, and allies across Texas are encouraged to participate. Their experiences can help identify barriers, inform advocacy, and keep the needs of people living with HIV at the center of the discussion.

Source: ADAP Advocacy

Visit ADAP Advocacy's Events page to register: https://www.adapadvocacy.org/events/2026/townhall/texas.

Conclusion

The 'ADAP Saves Lives: End the Wait' national advocacy campaign, centered around patients and their lived experiences with ADAP, ensures that the voice of people living with HIV/AIDS shall always be at the table and the center of the discussion. HIV advocates have faced this uncertainty before, and they’ve always risen to the challenge. That is what needs to happen now! ADAP Advocacy is doing its part by building state grassroots efforts, making user-friendly advocacy resources and tools available, hosting community town hall meetings, spearheading an organizational national sign-on letter, and complementing the work already being done at the state and community levels.

ADAP SAVES LIVES… END THE WAIT!

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

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.

CDC Releases New Information About People Living With HIV/AIDS

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

The Centers for Disease Control and Prevention (CDC) released its latest update to the Behavioral and Clinical Characteristics of Persons with Diagnosed HIV Infection in September 2026. These data represent findings from people living with HIV/AIDS (PLWHA) collected in 2024, and could point to significant trouble ahead for PLWHA (CDC, 2026).

Source: CDC

Key Findings and Discussion:

While 80% of respondents were prescribed antiretroviral therapy (ART) to treat their HIV, only 63% reported taking every dose as prescribed. Among those who missed doses, 22.7% missed doses for 1 to 2 days, 10.2% for 3 to 5 days, 1.5% for 6 to 10 days, and 2.3% for 11 or more days. The most commonly reported reasons for not taking medications included:

• Forgetting to take them (69.1%)
• Changes in daily routines or travel (42.3%)
• Falling asleep early or oversleeping (38.4%)
• Feeling depressed or overwhelmed (21%)
• Problems getting prescriptions or refilling medications (18.5%)
• The person didn’t feel like taking them (14.1%)
• Alcohol or drug use (10.3%)
• Problems paying for medications (6.9%)
• In the hospital or too sick to take medications (6.6%)
• Difficulties with medication side effects (5.8%)

When disaggregated by sex, Female respondents were slightly more likely to be adherent to treatment (66.2%), while 62.5% of Males reported being adherent.

When disaggregated by race, Multiracial Americans were the least likely to be treatment adherent (59.5%), followed by Black Americans (62%), Hispanic/Latine Americans (63.1%), and White Americans (65.6%). Asian Americans had the highest rate of treatment adherence, at 70.6%.

When disaggregated by age, adults aged 50+ were most likely to be treatment adherent (69.9%), followed by those aged 40-49 (58.3%) and those aged 18-29 (53.6%). Adults aged 30-39 were the least adherent, at 50.6%.

These data are particularly problematic, as failure to adhere to treatment regimens can result in the mutation of the virus to become resistant to specific ARTs or drug classes, making HIV harder to treat and limiting future treatment options. Additionally, nonadherence to ART regimens can leave the virus unsuppressed, increasing the likelihood of transmitting it to others (HIV dot Gov, 2026).

Source: Marley Drug

How to Improve Treatment Adherence

The HIV treatment landscape has changed significantly over the past twenty years. While treating HIV once required patients to take and keep track of multiple pills a day (or daily injections), single-pill oral regimens became the norm in the 2010s, and now, we have long-acting injectable (LAI) medications that can be delivered monthly or every other month.

A recent study published in The New England Journal of Medicine found that patients treated with LAIs were significantly less likely to experience regimen failure (n = 29; 19%) than patients taking a standard oral regimen (n = 55; 36%). While most regimen failures in the standard group resulted from virologic failure (58.2%), treatment discontinuation or abandonment caused regimen failure in the LAI group (82.6%). At the 48-week mark, regimen failure was 22.8% in the LAI group and 41.2% in the standard oral regimen group, indicating that LAIs are a key component to improve treatment adherence and virologic suppression (Rana et al., 2026)

ADAP Advocacy’s own research found that 52.3% of patients who responded to a 2024 survey would prefer LAI treatment regimens over oral regimens (Johnson et al., 2024).

Source: ADAP Advocacy

Quality of Life and HIV

Additional findings of the MMP found that structural challenges continue to negatively impact PLWHA, with respondents reporting hunger or food insecurity (22%), unstable housing or homelessness (20%), and unemployment (15%) as being primary drivers of poor physical, mental, and emotional health. Moreover, many PLWHA reported unmet needs for ancillary services that could improve living conditions and well-being, including access to dental care (24%), meal or food service assistance (15%), and stable sheltering or housing services (15%).

Trouble Ahead

The real concern in these data is not the data themselves, but that they were gathered before the Trump Administration took wrecking balls to nearly every aspect of public health provision and services. With state ADAP programs facing increasing budgetary shortfalls that could result in constriction of state programs (Hopkins, 2026), the forthcoming Medicaid implosion that the Trump Administration and its allies in Congress forced through in the One Big Beautiful Bill Act (Hopkins, 2025), and exploding costs of living related to the ongoing war against Iran and nonsensical tariffs, including skyrocketing costs of fuel, diesel, food, goods, and services (Wile & Murphy, 2026; Zahn, 2026), PLWHA are going to be squeezed more than ever. The reality is that patients living with HIV are going to be significantly worse off financially and are likely to face significantly higher barriers to accessing not only HIV care and treatment, but basic necessities, like food, shelter, and transportation.

While we should have been preparing for this for a while, many of us were caught flat-footed by the wholesale destruction being wrought by the Trump Administration. Hopefully, we will be able to course correct enough to avoid the majority of the devastation many are predicting.

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

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] Centers for Disease Control and Prevention. (2026, September 10). Behavioral and Clinical Characteristics of Persons with Diagnosed HIV Infection. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: National Center for HIV, Viral Hepatitis, STD, and Tuberculosis Prevention: Division of HIV Prevention: HIV Data: Medical Monitoring Project. https://www.cdc.gov/hiv-data/mmp/behavioral-clinical-characteristics-pwh.html

[2] HIV dot Gov. (2026, September 24). Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents With HIV. Rockville, MD: United States Department of Health and Human Services: Office of Infectious Disease and HIV/AIDS Policy: HIV dot Gov: Clinical Info: Guidelines. https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adult-and-adolescent-arv/interruption-antiretroviral-therapy

[3] Hopkins, M. J. (2025, July 30). Preparing for One Big Beautiful Disaster. Washington, DC: PlusInc: Blog. https://www.plusinc.org/blog/one-big-beautiful-disaster

[4] Hopkins, M. J. (2026, September 24). ADAP: A House of Cards Waiting to Fall. Nags Head, NC: ADAP Advocacy: ADAP Blog. https://adapadvocacyassociation.blogspot.com/2026/09/a-house-of-cards-waiting-to-fall.html

[5] Johnson, R. D., Hopkins, M. J., Laws, J., & Macsata, B. M. (2024). HIV Long-Acting Injectables: Patient access considerations for injectable HIV therapies and injectable HIV Pre-Exposure Prophylaxis. Nags Head, NC: ADAP Advocacy. https://www.adapadvocacy.org/s/2024_ADAP_Project_Long_Acting_Injectables_Final_Report_062524-wgxy.pdf

[6] Rana, A. I., Zheng, L., Castillo-Mancilla, J., Bao, Y., Sieczkarski, S., Brooks, K. M., Lake, J. E., Fichtenbaum, C., Heath, S. L., Belaunzaran-Zamudio, P. F., Klingman, K., Fox, L., Morton, T., Stirratt, M., Li, J. Z., Acosta, E. P., Venuto, C., Galárraga, O., Shoptaw, S., Wohl, D., … ACTG A5359 LATITUDE Trial Team. (2026). Cabotegravir plus Rilpivirine for Persons with HIV and Adherence Challenges. The New England journal of medicine, 394(9), 858–871. https://doi.org/10.1056/NEJMoa2508228

[7] Wile, R. & Murphy, J. (2026, September 23). The U.S. economy before and after the Iran war, in five charts. New York, NY: NBC News: Business: Economy. https://www.nbcnews.com/business/economy/us-economy-iran-war-five-charts-rcna598412

[8] Zahn, M. (2026, August 25). Tariffs will cost US households over $1,000 a year, Yale Budget Lab says. Burbank, CA: ABC: ABC News: Business. https://abcnews.com/Business/tariffs-cost-us-households-1000-year-yale-budget/story?id=135945432

HIV Advocacy: Why Stories Change More Than Hearts

By: Michelle Anderson, MA, Grassroots Advocacy & Patient Storytelling Consultant, ADAP Advocacy

**First-Person Perspectives**

I have been in advocacy for more than 20 years, and for years, I have sat in rooms where decisions were being made for people like me without including people like me in the conversation. I have listened to presentations filled with statistics, charts, and research findings that spoke completely over my head. I have listened to reports that described the disparities affecting Black women living with HIV, but those reports were not always an accurate depiction because they did not provide a complete narrative of Black women's experiences when faced with the systemic pressures that create risk for HIV beyond behavior. Although the data is important and research matters, something is still missing.

Photo Source: Narrative Power Institute

I often say that stories are more than personal experiences. They are a form of knowledge that speaks beyond what data cannot convey. They help us understand how policies, systems, and institutions impact real lives. They reveal the human reality behind data and create opportunities for change that numbers alone often cannot achieve because they connect the numbers to human impact.

For instance, when a Black woman living with HIV shares her experiences, it brings context to the conversation. It helps people understand that HIV is not a single issue. It is often connected to issues like poverty, trauma, housing insecurity, gender-based violence, lack of healthcare access, and systemic racism. These are realities that cannot be fully captured in a report because statistics only tell the story of the disproportionate impact of HIV.

Storytelling makes systems visible. It helps us move away from stigmatizing rhetoric that blames individuals and toward examining the conditions that shape people's realities. Instead of asking why someone did not make a different choice, storytelling helps us understand why the decision was made, given the options available to them and the conditions that shaped those options.

I have seen firsthand how stories can change a room. I have watched policymakers lean in when they hear someone describe the choice between paying rent and paying for healthcare. I have seen healthcare providers reconsider their assumptions after listening to a patient who may have fallen out of care due to transportation barriers. I have watched community members connect with issues they previously viewed as distant or unrelated to their own lived experiences. Stories create understanding, empathy, accountability, and, most importantly, they create movement.

Photo Source: ADAP Advocacy

That same principle is at the heart of the work currently underway through the "ADAP Saves Lives: End the Wait" campaign, which was launched in response to the reemergence of ADAP waiting lists and restrictions in some parts of the country. For those of us who have been in this fight nearly 20 years ago, the thought of people once again waiting for access to life-saving HIV medication is deeply concerning. Storytelling is an essential advocacy tool because behind every policy decision is a person whose health may be affected. By elevating the voices of persons living with HIV, storytelling helps policymakers and communities understand what is truly at stake when access to care is threatened.

Meaningful Involvement of People Living with HIV/AIDS (MIPA) recognizes that people living with HIV should be involved, utilizing our lived expertise as leaders, decision makers, and partners in shaping the policies and programs that impact our lives. When people share their experiences in legislative hearings, advisory boards, advocacy campaigns, and community discussions, they provide evidence-informed solutions grounded in real-time experiences. This is when narrative begins to build power.

Narrative power is the ability to shape how people understand an issue. It is the ability to influence systems by challenging stigma, exposing data gaps, and moving conversations beyond awareness to impact. By shifting the narrative, our stories change perspectives, influence policy, and become the power that shapes how systems operate and whose voices are valued within them.

Photo Source: ADAP Advocacy

I believe that the people closest to the issues are often closest to the solutions. Lived experiences belong at decision-making tables because stories are more than personal testimonies. They are tools for leadership, advocacy, and systems change. Stories do change hearts, but they also change how people understand issues, how policies are shaped, and how systems respond to the communities they serve.

Stories do change hearts, but the power does not stop there. They help people understand, in real time, the realities behind data and the impact systems have on people’s lives. When we share our stories, we are challenging stigma, educating communities, informing policy, and creating opportunities for change. We move beyond awareness and into action. We transform our lived experiences into narrative power. This month marks the beginning of ADAP Advocacy’s narrative power to combat the resurgence of those dreading AIDS Drug Assistance Program waiting lists. Patient’s lives depend on it!

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

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.

Cardiovascular Disease and Living with HIV...and the Benefit of Statins

By: Ranier Simons, ADAP Blog Guest Contributor

The evolution of HIV treatment has turned HIV into a manageable chronic disease. As such, people living with HIV/AIDS (PLWHA) live longer lives with an expectation of lifespans comparable to those without HIV.[1] PLWHA are now more likely to die from ailments other than HIV. One of those ailments is cardiovascular disease. PLWHA have twice the risk of atherosclerotic cardiovascular disease than the general populace.[2,3] Specifically, the higher risks include heart attack, stroke, heart failure, and pulmonary hypertension.[4] Unfortunately, the reasons for the increased risks are not readily understood. 

Photo Source: AIDSmap

Traditional risk factors for heart disease, such as high blood pressure and smoking, are the same for PLWHA and the general population. However, ongoing research indicates cardiovascular disease risk factors unique to PLWHA, such as the effects of antiretroviral therapy and biological mechanisms of HIV itself, such as chronic inflammation.[4] Lack of a thorough understanding of the increased risk for cardiovascular disease among PLWHA means there is no established way to battle the issue to improve outcomes. Clinical trials are being conducted to investigate means to treat the problem. One such trial conducted is the REPRIEVE trial.

REPRIEVE stands for ‘Randomized Trial to Prevent Vascular Events in HIV.’ The purpose of the phase 3 trial was to investigate the efficacy of statins in reducing the risk of cardiovascular disease in PLWHA. The idea is to use statins as a primary prevention tool for major adverse cardiovascular events (MACE) in HIV. Statin use was chosen as an intervention because research shows statins lower LDL cholesterol, a significant factor in cardiovascular disease. Additionally, statins positively affect vascular inflammation and immune system activation in PLWHA.[3]

The multinational phase 3 randomized REPRIEVE trial, which included the United States, contained 7769 subjects. Assigned to two groups through computer randomization, the subjects received either oral pitavastatin calcium (at a dose of 4 mg per day) or a placebo. Pitavastatin was chosen because it does not interact with antiretroviral medications. The subjects' inclusion criteria included being 40 to 75 years old, living with HIV, on stable antiretroviral therapy, having no previously known cardiovascular disease, and having no history of statin use in the previous 90 days of entering the study. Another important criterion is that all “had a low-to-moderate risk of atherosclerotic cardiovascular disease, as determined by the score on the American Heart Association and American College of Cardiology 2013 Pooled Cohort Equation risk calculator.”[3]

When studies are done, researchers define a primary outcome. The primary outcome is the most essential occurrence to be examined as a result of applying the intervention in question. For the REPRIEVE, the primary outcome was the occurrence of a MACE. The MACE for this study was not just one issue but considered a composite of the existence of many issues: cardiovascular death; myocardial infarction; hospitalization for unstable angina; stroke; transient ischemic attack (TIA); peripheral arterial ischemia; revascularization of a coronary, carotid, or peripheral artery; or death from an undetermined cause, as measured in a time-to-event analysis.[3]

Photo Source: New England Journal of Medicine

In the pitavastatin group, the incidence of MACE was 4.81 per 1000 person-years and 7.32 per 1000-person-years in the placebo group. That equates to a 35% lower MACE incidence in the pitavistatin group.[5] Non-cardiovascular outcomes included muscle and diabetes issues. Myalgia and myopathy occurred in 2.3% of the pitavastatin group and 1.4% of the placebo group. Regarding diabetes, there was a 1.13 incidence rate (5.3%) in the pitavastatin group and a 0.84 incidence rate (4.0%) in the placebo group.[3] This was not surprising since previous research shows that statin use is associated with increased diabetes mellitus as it can increase blood sugar by preventing the body’s proper utilization of insulin.

Additionally, results showed that adverse event rates increased with increasing subgroup risk categories for atherosclerotic cardiovascular disease. However, the number needed to treat (NTT) decreased with rising risk category.[3] This means there is a possible greater benefit of statin use among those who started the study with more baseline cardiovascular risk. NTT is a statistical description indicating how many people need to be treated before a positive outcome is seen. Theoretically, the perfect NTT is 1, meaning that every person treated has a positive outcome. Since the NTT decreased with increasing risk category, more positive outcomes occurred among those with higher levels of diagnosis.

Trials like the REPRIEVE study open the door to investigating the use of other possible statins. Moreover, additional research is imperative since there is currently no established therapeutic or diagnostic paradigm for addressing the increased risk of cardiovascular disease in PLWHA. Without identifying the specific mechanisms contributing to atherosclerotic cardiovascular disease pathology among PLWHA, it is impossible to find or create medical interventions against it.

[1] Hayes, R. (2023, July). Life expectancy for people living with HIV. Retrieved from https://www.aidsmap.com/about-hiv/life-expectancy-people-living-hiv#:~:text=Many%20people%20living%20with%20HIV,adhere%20to%20their%20HIV%20treatment

[2] Boccara, F., Cohen, A. (2016) HIV and heart disease: What cardiologists should know. Revista Espanola De Cardiologia, 69(12), 1126-1130. DOI: 10.1016/j.rec.2016.05.032

[3] Grinspoon, S. K., Fitch, K. V., Zanni, M. V., Fichtenbaum, C. J., Umbleja, T., Aberg, J. A., … Douglas, P. S. (2023). Pitavastatin to Prevent Cardiovascular Disease in HIV Infection. New England Journal of Medicine, 389(8), 687–699. doi:10.1056/NEJMoa2304146

[4] Feinstein, M. J. (09 2022). HIV, Subclinical Cardiovascular Disease, and Clinical Progression: Insights From Immunologic Heterogeneity. JAMA, 328(10), 931–932. doi:10.1001/jama.2022.15226

[5] Susman, E. (2023, July 24). Statin reduced risk of heart disease in people with HIV. Retrieved from https://www.medpagetoday.com/meetingcoverage/ias/105613

[6] Lerner, A. M., Eisinger, R. W., & Fauci, A. S. (2020). Comorbidities in Persons With HIV: The Lingering Challenge. JAMA, 323(1), 19–20. https://doi.org/10.1001/jama.2019.19775

[7] Mulcahy, L. (2023, July 27). Menopause may start earlier for aging women with HIV. Retrieved from https://www.webmd.com/hiv-aids/news/20230627/menopause-may-start-earlier-aging-women-hiv

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.   

Walmart’s Expanded HIV Services Promise Increased Access

By: Marcus J. Hopkins, ADAP Blog Guest Contributor, and Founder & Executive Director of the Appalachian Learning Initiative (APPLI)

Editor's Note: The Blogger platform classifies any use of the word "p(h)armacy" as being a sales promotion. As a result of this erroneous classification, the word and its derivations will be typed using that format in order to avoid being flagged as a sales promotion.

In December 2022, Walmart announced that it would be expanding its Special P(h)armacies of the Community (SPOCs) to support communities with high rates of HIV to include stores in North Brunswick and North Bergen, NJ, Monticello, NY, and Hartford, CT. Those locations joined the initial three locations opened as part of their pilot program.

Since then, Walmart has opened an additional 70 locations, totaling 77 SPOCs located in Colorado, Connecticut, Florida, Georgia, New Jersey, New York, North Carolina, Texas, and Virginia. By the end of 2023, Walmart has promised more than 80 locations across eleven states.

According to their initial press release, Walmart claims that these SPOCs:

will help with all aspects of care, including industry-leading clinical programs, p(h)armacy services provided by HIV-trained p(h)armacists, enhanced care coordination, healthy lifestyle recommendations, and finding emotional support services from our Community Health Workers.

Walmart's SPOCs are located inside of individual p(h)armacies within the stores, ostensibly making the locations convenient to patients and those seeking HIV preventative care.

There are, it should be said, significant benefits to Walmart beyond just the good press.  Walmart has enormous opportunities to earn profits by accessing the 340B Drug Pricing Program’s inclusion of HIV medications. According to a 2019 report by Drug Channels, an estimated 25,000 p(h)armacies acted as contract p(h)armacies for hospitals and other covered entities that participate in the 340B program, and six large retail chains—Walgreens, CVS, Walmart, Rite Aid, Kroger, and Albertsons—account for two-thirds of 340B contract p(h)armacy locations.

In recent years, 340B program profits have soared with little to no oversight or enforcement, and we would be remiss if we didn't mention that Walmart stands to earn significant profits from serving as the contract p(h)armacy for People Living with HIV/AIDS (PLWHA), particularly in the markets they've chosen.

Which brings me to the next point:

As Walmart pointed out in its December 2022 statement, roughly 90% of the U.S. population lives within 10 miles of a Walmart location. They also state that these SPOCs provide “…an opportunity to reach people who might not otherwise have access to or seek out HIV care.”

And yet…the locations of these SPOCs are in areas of the country that already receive the bulk of federal funding for HIV testing, services, and treatment. Almost every location is in an urban or suburban population center—areas that often already have p(h)armacies specializing in HIV treatment and care.

It is obvious that these locations were chosen in accordance with the Ending the HIV Epidemic's (EHE) Phase 1 jurisdictions, which resulted in federal HIV funds being directed to the counties and cities where HIV incidence is highest. This methodology is all well and good, but it misses the larger scope of the HIV epidemic and fails to fill the gaps left by this federal funding "plan".

It is curious, then, that Walmart argues that these locations will "…reach people who might not otherwise have access to or seek out HIV care," when those areas are already glutted with services compared to other areas of the country. Looking at Orlando alone, there are 25 providers of care, and four dedicated p(h)macies dedicated to providing services to PLWHA.

If the purpose is to expand access, Walmart would be better suited to open SPOCs in farther-flung areas of those states, where patients are already required to travel more than 30 minutes to access HIV services. Opening a SPOC in Florida’s rural counties, such as Okeechobee, Hardee, DeSoto, Highlands, or Glades, would provide patients living outside of urban areas better access to care and services.

Beyond just the nine current and two potential states where Walmart's SPOCs have or will be opened, there are significant gaps in care and p(h)armacy services in states like Alabama, Kentucky, Mississippi, Tennessee, central and western Virginia, and West Virginia—areas that are largely rural, but have either significant existing populations of PLWHA or face increased risks of HIV transmission either through sexual contact or through Injection Drug Use.

To be clear, I am not being critical of Walmart for expanding services to be inclusive of PLWHA and those seeking preventative services. I am absolutely in favor of a "Yes, And" approach to HIV services provision. The addition of more providers has the potential to provide patients with more choices of where to receive care, and additional opportunities and points of care may allow patients to access services in places that are convenient to them. Additionally, increasing the number of providers has the potential to break HIV care outside of the longstanding monopolistic service provision models that exist both locally and nationally, where patients have been essentially forced to access care, treatment, and supportive services from providers because there hasn’t been anywhere else to go, even if those providers have treated them poorly, engaged in unethical practices, or provided services that aren't culturally competent or sufficient to meet the needs of their patient populations.

That said, Walmart, CVS, and Walgreens haven't really managed to make their locations places where patients—particularly those attempting to access sexual or reproductive healthcare services—feel safe accessing those services or openly discussing concerns with staff p(h)armacists. There’s a distinct lack of personal connection in highly corporate locations, and when you're dealing with fraught issues such as those presented with HIV care and treatment (or other chronic conditions), the last place you want to be if you're having a tough time dealing with issues is in the middle of a large shopping center surrounded by random people trying to find the potato chip aisle.

Overall, however, the expansion of Walmart's SPOC locations seems like a good thing, even if the locations they've chosen don’t really provide services that are novel to those areas. Time will tell whether or not they have any real impact.

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 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!

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[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).