A HIV Drug Medicare Carveout Exemption is NOT All About the Profits

By: Marcus J. Hopkins, ADAP 340B Consultant

In July 2025, ADAP Advocacy submitted public comment to the Centers for Medicare and Medicaid Services (CMS) regarding the proposed guidance for the Medicare Drug Price Negotiation Program (“Negotiation Program”) established under the Inflation Reduction Act (2022), requesting a carveout exemption from forced price negotiations for medications used for the treatment of HIV.

Photo Source: ADAP Advocacy

After submitting this public comment, we took the opportunity to reach out to other HIV organizations, including the Aging and HIV Institute (A&H)’s David “Jax” Kelly, JD, MPH, MBA.

Kelly raised several key points that he believes would better center our arguments around patient access, medication affordability, and the elimination of barriers to accessing medications. These points, he told us, would help to reframe our argument to make it more patient-centered and less about pharmaceutical company participation in the Medicare market and profitability.

He was, in part, correct.

ADAP Advocacy is, at its heart, a patient-centered organization. From the beginning, our organization has prioritized patient access to HIV care, treatment, and supportive services. Our initial focus dealt with eliminating the waitlists that prevented patients in dire need of HIV treatment services from enrolling in state AIDS Drug Assistance Programs (ADAPs). Every aspect of our work has been patient-centered, and we have endeavored to frame every project, initiative, research effort, report, and infographic in a manner that prioritizes what is best for patients.

Our submission to CMS attempted to frame pharmaceutical company participation as a broader issue that could prevent patients from accessing their life-saving medications. We contend our framing achieved that objective, but nonetheless, we're open to alternative interpretations. After all, one of our organization's value statements reads, "That the voice of persons living with HIV/AIDS shall always be at the table and the center of the discussion."

With that in mind, ADAP Advocacy asked Kelly for his thoughts on the carveout. In his response, Kelly provided the following insights:

[The following comments were composed by David “Jax” Kelly, JD, MPH, MBA]

David "Jax" Kelly, JD, MPH, MBA

_____________________________________________

Medicare and HIV: A Lifeline for Long-Term Survivors

Nearly 28% of PLWH in the United States are Medicare beneficiaries, and most qualified through disability rather than age (Figueroa et al., 2024; Dawson, 2023). For this population, Medicare Part D is a lifeline, yet HIV medications account for a disproportionate share of program spending. In 2020, prescription drugs made up 63% of Medicare spending for PLWH compared to just 4% for other beneficiaries (Dawson, 2023).

This unique cost profile reflects both the effectiveness and the financial burden of HIV treatment. Interruptions in ART jeopardize not only individual health but also public health goals. Sustained viral suppression—essential to ending the epidemic—depends on reliable, affordable access to medications.

Moreover, a majority (61%) of Medicare beneficiaries with HIV are dually eligible for Medicaid, highlighting their financial and medical vulnerability (Dawson, 2023). These dual-eligible beneficiaries face some of the most complex systemic barriers and are at greatest risk if policy shifts raise out-of-pocket burdens.

Patient Affordability and Financial Burden

Even when medications are technically “covered,” high co-pays and cost-sharing can prevent patients from filling prescriptions. Research shows persistent gaps in ART adherence among Medicare beneficiaries with HIV, often tied to affordability barriers (Li et al., 2023).

The Inflation Reduction Act reshaped Medicare Part D plan designs, and analyses show that some changes may actually increase cost burdens for patients depending on their plan type (Cai et al., 2025; Doshi et al., 2025).

Consider a hypothetical example:

For a retired Medicare beneficiary living on $1,400 a month, an additional $100 in monthly drug costs could force a choice between filling an HIV prescription and paying for groceries or rent. For long-term survivors already managing multiple chronic conditions, even modest increases in out-of-pocket (OOP) costs can destabilize adherence and jeopardize viral suppression.

Drug coverage protections exist—ART is already a “protected class” under Part D—but these safeguards do not directly limit cost-sharing. Without a carveout, federal savings from negotiation could inadvertently be achieved at the expense of patient affordability and adherence.

Equity and Systemic Barriers

Medicare beneficiaries with HIV are disproportionately people of color, LGBTQ+ individuals, and long-term survivors. According to KFF, most (77%) qualified for Medicare through disability rather than age, and a majority (61%) are dually eligible for Medicaid (KFF, 2025). These data underscore the extent of financial and medical vulnerability within this population—reflecting the compounding effects of poverty, disability, and structural inequities.

The burden of prescription drug costs falls especially hard on people with HIV. While prescription drugs account for just 4% of Medicare spending among other beneficiaries, they represent 63% of Medicare spending for people with HIV (Dawson, 2023). This disproportionate reliance on costly medications makes beneficiaries uniquely exposed to policy changes that could shift costs onto patients.

Photo Source: HealthHIV

The most recent State of Aging with HIV Report adds further context. Nearly 80% of older adults living with HIV delayed or avoided care due to insurance or out-of-pocket costs, and almost half struggled to pay for housing, food, or utilities (HealthHIV, 2025). Insurance restrictions such as step therapy and prior authorizations are increasingly blocking or delaying access to needed HIV medications. At the same time, many report fragmented care: over one-third rely on emergency departments for non-urgent needs, while 63% lack access to case management services (HealthHIV, 2025).

These inequities extend beyond finances. Nearly half of older adults with HIV report feeling lonely or isolated, and more than three-quarters experience moderate to high levels of mental health stress (HealthHIV, 2025). Meanwhile, providers highlight systemic barriers as well: 59% cite shortages of clinicians trained in both HIV and geriatrics as the most pressing obstacle to appropriate care.

Equity in drug policy is not just a matter of fairness; it is central to survival. The National HIV/AIDS Strategy emphasizes reducing disparities in HIV outcomes for racial and ethnic minorities, LGBTQ+ communities, and older adults. If CMS drug price negotiations inadvertently increase barriers to HIV treatment, they risk undermining these national goals at a time when they are already under political attack.

Protecting affordability and uninterrupted access through a carveout would ensure that Medicare policy advances—rather than reverses—the nation’s commitment to equity in HIV care and outcomes.

_____________________________________________

Kelly’s comments offer additional clarity and justification in favor of a carveout exemption in a way that focuses less on the continued participation of pharmaceutical companies and more on the real-world needs of patients who rely upon the Medicare program.

One of the primary reasons we work with collaborative partners and organizations is to ensure that the work we’re doing is focused on meeting the needs of patients. ADAP Advocacy specifically works with other organizations and policy shops to inform, refine, and bring clarity to the positions we release.

We are incredibly grateful to Jax Kelly for helping us to fulfill that mission.

References:

Cai, C. L., Bhaskar, A., Kesselheim, A. S., & Rome, B. N. (2025). Changes in Medicare Part D plan designs after the Inflation Reduction Act. JAMA Internal Medicine. Advance online publication. https://doi.org/10.1001/jamainternmed.2025.4003

Dawson, L., Kates, J., Roberts, T., Cubanski, J., Neuman, T., & Damico, A. (2023). Medicare and people with HIV. San Francisco, CA: KFF. https://www.kff.org/hivaids/report/medicare-and-people-with-hiv/

Dickson, S., & Hernandez, I. (2023). Drugs likely subject to Medicare negotiation, 2026–2028. Journal of Managed Care & Specialty Pharmacy, 29(7), 732–739. https://doi.org/10.18553/jmcp.2023.29.3.229

Doshi, J. A., Li, P., Harrison, J., Romley, J., & McWilliams, J. M. (2025). Inflation Reduction Act provisions and Medicare Part D out-of-pocket costs for specialty drugs. JAMA Health Forum, 6(8), e233849. https://doi.org/10.1001/jamahealthforum.2025.1387

Figueroa, J. F., et al. (2024). Antiretroviral therapy use and disparities among Medicare beneficiaries with HIV. Journal of General Internal Medicine, 39(12), 3456–3464. https://doi.org/10.1007/s11606-024-08847-y

Figueroa, J. F., et al. (2025). Use of nonrecommended antivirals among Medicare beneficiaries with HIV. JAMA Network Open, 8(7), e2312345. https://doi.org/10.1001/jamanetworkopen.2025.8296

HealthHIV. (2025). The fourth state of aging with HIV national survey report. Washington, DC: HealthHIV. https://healthhiv.org/wp-content/uploads/2025/01/Fourth-HealthHIV-State-of-Aging-with-HIV-Report.pdf

Kakani, P., Kyle, M. A., Chandra, A., & Maini, L. (2024). Medicare Part D protected-class policy is associated with lower drug rebates. Health Affairs, 43(8), 1290–1298. https://doi.org/10.1377/hlthaff.2024.00273

Li, P., et al. (2023). Antiretroviral treatment gaps and adherence among people with HIV in Medicare. Journal of Acquired Immune Deficiency Syndromes, 92(2), 145–152. https://doi.org/10.1007/s10461-023-04208-8

Patterson, J. A., et al. (2024). Medicare Part D coverage of drugs selected for the Drug Price Negotiation Program. JAMA Health Forum, 5(2), e234562. https://doi.org/10.1001/jamahealthforum.2023.5237

Sadeghi, A., & Varisco, T. J. (2025). Medicare Drug Price Negotiation Under The Inflation Reduction Act: Ensuring the Continuity of Critical Real-world Pharmaceutical Studies. Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research, S1098-3015(25)02466-0. https://doi.org/10.1016/j.jval.2024.12.012

White, E. N., Saxon, M., Hodge, J. G., Jr, & Michaels, J. (2023). Medicare Drug Pricing Negotiations: Assessing Constitutional Structural Limits. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 51(4), 956–960. https://doi.org/10.1017/jme.2024.12 

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.     

Federal Budget Cuts Undermine Successful Evidence-Based HIV Prevention

By: Ranier Simons, ADAP Blog Guest Contributor

To some people, HIV prevention discourse may seem commonplace or redundant. However, prevention science continues to generate exciting developments, and prevention remains the most effective weapon against the spread of HIV. Highlighting the importance of prevention is especially timely given the looming threat of potential significant cuts to HIV prevention funding in the federal budget.

Photo Source: CDC

In an effort to expand options for widespread pre-exposure prophylaxis utilization (PrEP), researchers are investigating a monthly oral option. Presently, the two oral options for PrEP are Truvada (emtricitabine/tenofovir disoproxil fumarate) and Descovy (emtricitabine/tenofovir alafenamide), which must be taken daily for the highest efficacy (NIH, 2025). As an alternative to long-acting injectable PrEP therapies, a once-a-month pill option is currently undergoing clinical trials. Taking a monthly pill would increase adherence for people who are not amenable to injections or face barriers to them.

A compound known as MK-8527 could potentially change the HIV prevention landscape. MK-8527 originated from scientists chemically modifying a pre-existing drug called islatravir (Millington, 2025). Islatravir is a member of a class of medications called nucleoside reverse transcriptase translocation inhibitors (NRTTI). NRTTI efficacy for antiviral attributes is established and has potential for long-acting pre-exposure prophylaxis. Early experiments yielded positive results in animal studies. MK-8527 is involved in two clinical studies containing 9,000 subjects worldwide spanning sixteen countries, including young women and adolescent girls in Saharan Africa (Millington, 2025). A once-a-month pill option would expand access to long-acting prevention agents since a pill option does not require administration by trained personnel or special storage and handling.

Photo Source: Drug Hunter

The recent U.S.Food & Drug Administration (FDA) approval of Yeztugo (lenacapavir) is another promising development. Yeztugo is a long-acting twice-a-year injection for PrEP. Lenacapavir is a promising discovery that the journal Science named as its 2024 Breakthrough of the Year (Cohen, 2024). A twice-yearly PrEP injectable option is a transformative development, significantly improving access, especially for Black and Latine populations, which are disproportionately affected by HIV in the United States, especially in the South. The on ramping of Yeztugo is simple. On the first day, a person receives two pills and two injections via the abdomen or thigh. The second day requires taking two more pills, then after that, just two injections every six months (Smith, 2025). Overcoming multifactorial barriers to PrEP access in Black and Brown communities is vital in fighting the HIV epidemic.

Despite the importance of HIV prevention and the forward momentum of scientific advances, funding dangers pose a threat. The Fiscal Year 2026 funding bill released by the Appropriations Committee of the U.S. House of Representatives calls for massive reductions. The bill calls for over $1.7 billion in funding cuts for domestic HIV prevention, treatment, and care programs (Chibbaro Jr., 2025). It would also cut the Ryan White HIV/AIDS Care and Treatment Program by $525 million, which is a twenty percent cut.

This level of funding reduction would significantly harm national prevention efforts. Passing the bill would kill the Ending the HIV Epidemic Initiative program and eliminate federal funding for all HIV prevention programs. State and local health departments are heavily dependent on this funding, as states do not have sufficient budgets to cover the requirements for effective community service. Carl Schmidt, executive director of the HIV + Hepatitis Policy Institute, in a statement on September 1st, said, “Eliminating all HIV prevention means the end of state and local testing and surveillance programs, educational programs, and linkage to lifesaving care and treatment, along with PrEP” (Chibbaro Jr., 2025). He further added, “It will translate into an increased number of new HIV infections, which will be costlier to treat in the long run” (Chibbaro Jr., 2025).

Photo Source: POZ

Evidence-based research continues to inform that more prevention efforts, such as increased testing, are needed, not fewer. A recent study published in the journal Clinical Infectious Diseases indicates that increased HIV testing in urgent care and emergency departments has positive outcomes. The study took place across 26 urgent care centers and 22 emergency departments in Utah’s Intermountain Health nonprofit health system. Researchers found that urgent care centers and emergency departments functioning as safety nets are where many people receive their care, including for STIs (Seibert et al., 2025).

The Seibert study was an intervention that alerted clinicians to co-test individuals for HIV whenever testing for gonorrhea and chlamydia was performed. Although this would seem to be a logical approach, it was not being consistently done. The electronic health record (EHR) alert prompted HIV co-testing coupled with a system-wide simultaneous implementation of provider and patient education and a link-to-care program for people newly diagnosed with HIV (Seibert et al., 2025). The study resulted in a 41.9% increase in HIV co-testing rates in the urgent care centers and a 53.4% increase in the emergency departments (Seibert et al., 2025). The increased co-testing resulted in 17 new diagnoses of HIV, and those individuals were promptly linked to care. The study only examined HIV co-testing alerts for those seeking tests for gonorrhea and chlamydia. Additional studies would reveal the benefit of also increasing HIV co-testing when STI testing for other diseases is requested.

HIV prevention efforts save lives by preventing people from acquiring HIV and by identifying people living with HIV to enable proper linkage to care, thus reducing the spread of the disease. Human life and population health are not simple line items on a budget spreadsheet. Reducing funding for HIV prevention will cost lives and increase health care expenditures in the long run. Whatever form of the House budget that passes will have to be reconciled with the Senate version. The future of U.S. HIV prevention will be substantially affected by the outcome.

[1] Chibbaro Jr., L. (2025, September 3). House GOP seeks to cut all U.S. HIV prevention programs in 2026. Retrieved from https://roughdraftatlanta.com/2025/09/03/gop-bill-slashes-hiv-funding/

[2] Cohen, J. (2024, December 12). 2024 Breakthrough of the year. Retrieved from https://www.science.org/content/article/breakthrough-2024#section_breakthrough

[3] Millington, H. (2025, August 26). HIV: Monthly PrEP drug candidate shows promise. Retrieved from https://www.msn.com/en-us/health/other/hiv-monthly-prep-drug-candidate-shows-promise/ar-AA1LgFAK?ocid=socialshare

[4] Seibert, A. M., Matheu, M., Buckel, W. R., Bledsoe, J., Willis, P., Balls, A., Butler, A. M., Moores, T. D., Vines, C., Hellewell, J., Smout, R., Lopansri, B., Stanfield, V., Fino, N. F., Wormser, V. R., Gutierrez, A., Gwiazdon, M., Wallin, A., Patel, P. K., & Hersh, A. L. (2025). Increasing HIV Testing During Gonorrhea and Chlamydia Evaluations in Urgent Care and Emergency Departments: A Large Health System Initiative. Clinical Infectious Diseases. https://doi.org/10.1093/cid/ciaf434. Retrieved from https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciaf434/8244966

[5] Smith, J. (2025, September 3). The First Twice-Yearly Tool to Prevent HIV Holds Promise for Black & Brown Communities. Retrieved from https://blackdoctor.org/twice-yearly-tool-to-prevent-hiv-holds-promise/

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.   

CVS Caremark Plays Kicks-the-Can on Yeztugo; Undermines HIV Prevention Efforts

By: Ranier Simons, ADAP Blog Guest Contributor

Benjamin Franklin is credited with the phrase, ‘An ounce of prevention is worth a pound of cure.’ In simple terms, it is easier to prevent a negative outcome from happening than to expend energy repairing damage that has already occurred. This is especially true regarding HIV. Given that there is currently no cure for the virus, it is imperative to prevent HIV transmission. Recent innovations, especially long-acting injectable agents, have expanded the toolbox of HIV prevention. Consequently, the mere existence of life-saving tools is not beneficial if the people who need them are denied access. CVS Caremark recently announced that it will not be adding coverage for Yeztugo (lenacapavir), Gilead Sciences' bi-annual HIV PrEP injectable, to its commercial plans (Beasley, 2025).

Pharma.com | The Economic Times

Yeztugo was approved by the U.S. Food and Drug Administration (FDA) in June 2025, following the successful outcomes of its Phase 3 clinical trials, PURPOSE 1 and PURPOSE 2. Approximately 99.9% of participants remained HIV negative, proving Yeztugo in the trial to be more effective than daily Truvada administered as PrEP (Gilead, 2025). Out of the 2,179 participants in the PURPOSE 2 trial, only two people contracted HIV.

Medicare, Veterans’ Administration, and some Medicaid plans are already covering Yeztugo. In contrast, CVS Caremark has stated that it will not cover the drug in its commercial plans, nor in any of its Affordable Care Act (ACA) formularies. CVS follows the recommendations of the U.S. Preventive Services Task Force (USPSTF) for HIV prevention medications. Presently, USPSTF only recommends daily Truvada (Gilead), Descovy (Gilead), and the bimonthly injectable Apretude (ViiV). Prevention measures recommended by the USPSTF must be covered without any patient cost-sharing. Many in the HIV care community are concerned about Yeztugo ever being recommended by the USPSTF, given the current paradigm of the embattled JFK Jr.-led U.S. Department of Health and Human Services (HHS) (Beasley, 2025).

Photo Source: Metro Weekly

In a statement emailed to the publication Fierce Pharma, a CVS spokesperson explained, “As is typical with new-to-market products, we undergo a careful review of clinical, financial, and regulatory considerations, under the guidance of our external Pharmacy and Therapeutics (P&T) Committee of independent medical experts” (Kansteiner, 2025). Given that Medicare, Veterans’ Administration, and some state Medicaid plans (including California and New York) are already covering Yeztugo, and it has had stellar results in its clinical trials, it is unclear what clinical, financial, and regulatory considerations are of concern. Those in the HIV care community feel CVS’s decision is based on Yeztugo’s list price of $28,000 per year for the two injections. The average lifetime cost of treating a person living with HIV ranges from $420,285.00 to over $1 million (Bingham et al., 2021). Thus, in the long term, preventative treatment would appear cost-effective.

Notably, CVS Caremark is currently embroiled in legal disputes. Chief Judge Mitchell Goldberg, a Philadelphia federal judge, issued a ruling ordering CVS Caremark to pay a $289.9 million judgment for fraudulent prescription drug charges to Medicare. Initially, the penalty issued was $95 million (Stempel, 2025). In 2014, a former head actuary for Medicare Part D at Aetna initiated a whistleblower case, accusing CVS Caremark of causing health insurers to file false and inflated claims to the Centers for Medicare and Medicaid Services (CMS), while paying Rite Aid and Walgreens pharmacies less. The judge explained that CVS knowingly manipulated drug pricing to its financial benefit. Due to the motivations and intent of CVS, Judge Goldberg, using the False Claims Act, tripled the $95 million and added a $4.87 million civil fine. 

CVS is being admonished for causing fiscal harm to the government via CMS, as well as weakening public trust in the CMS. Judge Goldberg wrote, “CMS relies on companies like Caremark to truthfully and accurately report Part D drug prices," he wrote. "Caremark's conduct broke CMS's trust, and as a result, the public's trust in CMS." In the decision, Judge Goldberg specifically spelled out, “ Caremark devised a scheme to earn hidden spread or indirect profit on Part D purchases, and in the process, caused CMS to over-subsidize prescription drug costs to the tune of some $95 million. When CMS and other industry participants asked questions, Caremark consistently concealed the true nature of its scheme”. In addition to this case, CVS is appealing a separate $948.8 million judgment against its Omnicare unit, issued by a Manhattan federal judge in July, over allegations of fraudulent billing.

Photo Source: Review of Optometric Business

This pattern of profit-motivated questionable behavior is additional reasoning for why CVS’s initial decision not to cover Yeztugo is causing concern among many stakeholder groups. Yeztugo is a way to ensure adherence, given that it is only administered twice a year. It is crucial to increase the possibility of preventing HIV acquisition among those at high risk, not reduce it. Prevention reduces health care expenditures for the system and the individual. 

Stakeholders like Brian Hujdich, Executive Director at HealthHIV, explain the quandary: “It’s hard to reconcile Franklin’s wisdom together with CVS’s decision. Long-acting PrEP injectables could prevent unnecessary transmission, medical costs, and sick days, while reducing the time and effort required to stay protected. They can also help minimize situations where stigma commonly shows up — whether internal, like the stress of daily pill-taking, or external, like repeated pharmacy pickups and clinic visits — while supporting people to stay healthy.”

[1] Beasley, D. (2025, August 21). CVS holds off adding Gilead’s new HIV prevention shot to drug coverage lists. Retrieved from https://www.reuters.com/business/healthcare-pharmaceuticals/cvs-holds-off-adding-gileads-new-hiv-prevention-shot-drug-coverage-lists-2025-08-20/

[2] Bingham, A., Shrestha, R. K., Khurana, N., Jacobson, E. U., & Farnham, P. G. (2021). Estimated Lifetime HIV-Related Medical Costs in the United States. Sexually transmitted diseases, 48(4), 299–304. https://doi.org/10.1097/OLQ.0000000000001366

[3] Gilead Sciences. (2025, June 18). Press Release: Yeztugo® (Lenacapavir) Is Now the First and Only FDA-Approved HIV Prevention Option Offering 6 Months of Protection. Retrieved from https://www.gilead.com/news/news-details/2025/yeztugo-lenacapavir-is-now-the-first-and-only-fda-approved-hiv-prevention-option-offering-6-months-of-protection#:~:text=In%20the%20PURPOSE%202%20trial,with%20once%2Ddaily%20oral%20Truvada

[4] Kansteiner, F. (2025, August 21). For now, CVS declines to cover Gilead's long-acting HIV PrEP treatment Yeztugo. Retrieved from https://www.fiercepharma.com/pharma/now-cvs-declines-cover-gileads-twice-yearly-hiv-prep-treatment-yeztugo

[5] Stempel, J. (2025, August 20). CVS unit must pay $290 million in drug whistleblower lawsuit, judge rules. Retrieved from https://www.reuters.com/legal/government/cvs-unit-must-pay-290-million-drug-whistleblower-lawsuit-judge-rules-2025-08-20/#:~:text=In%20a%20Tuesday%

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.   

Southern HIV/AIDS Awareness Day Puts Spotlight on the Southern Epidemic

By: Ranier Simons, ADAP Blog Guest Contributor

Recently, Southern HIV/AIDS Awareness Day (SHAAD), August 20, was commemorated. It is a relevant necessity because, despite medical advances in HIV treatment and prevention, HIV/AIDS is still an epidemic, especially in the South. The region of the ‘Deep South’ is generally considered to be Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, and Texas (AIDSVu, 2025). Black and brown communities in the South are notably disproportionately affected by HIV. 

Photo Source: ADAP Advocacy

Judith Montenegro, Program Director for the Latino Commission on AIDS, emphasizes, “During Southern HIV/AIDS Awareness Day, we denounce both the South’s historic neglect of Latinx health and the federal government’s dangerous cuts to healthcare, research, and science. SHAAD is an opportunity for the region to come together with a common agenda to continue to advocate for our communities and stop anti-immigrant legislation, protect Medicaid, and access to HIV testing, treatment, and care.”

According to the most recent complete data, although representing 38% of the U.S. population, the South accounted for 52% of all new HIV diagnoses (AIDSVu, 2025). The South also leads in prevalence and HIV/AIDS related deaths. For clarity, incidence refers to rates of new transmissions, and prevalence is the number of people living with HIV/AIDS (PLWHA). Stigma, issues related to social determinants of health, and funding challenges contribute to HIV’s disproportionate impact on the South.

The AIDS Drug Assistance Program (ADAP), which is authorized under Part B of the Ryan White CARE Act, has been highly effective at linking people living with HIV/AIDS to care and treatment in the U.S. over the last two decades. One notable exception: The South. Many public health programs – including ADAPs – have often fallen victim to cultural, political, and societal barriers that have made it difficult for ADAPs to function effectively in this region of the country. Ten years ago, ADAP Advocacy published a detailed analysis examining the disproportionate impact of barriers in the South, particularly as they relate to access to care.

Battling the HIV epidemic requires comprehensive care and preventative services for PLWHA and those vulnerable to transmission, regardless of the presence or lack of health insurance. The South has the highest rate of poverty and the lowest median household income in the U.S. in 2022 (AIDSvu.org, 2025). Income challenges considerably affect access to stable and quality housing, contribute to food insecurity, and create barriers to maintaining environments that allow people to thrive. Socioeconomic status (SES) research also indicates that low SES can increase the risk of someone contracting HIV and adversely influence PLWHA’s quality of life. Most importantly, poverty can affect one's ability to obtain insurance coverage. Lack of insurance or being under-insured is a significant barrier to treatment, testing, and prevention.

Photo Source: CDC

Medicaid is the primary way people with low incomes who cannot afford private insurance can obtain health coverage. According to the Kaiser Family Foundation (KFF), nationally, access to care is similar for adults with Medicaid and those with private insurance (KFF, 2025). However, access to care falls drastically for those who are uninsured. Of the ten states that have not expanded Medicaid, eight are in the South: Alabama, Florida, Georgia, Kansas, Mississippi, South Carolina, Tennessee, and Texas (Chatlani, 2024). This is significant because 1.6 million people in non-expansion states earn too much money to qualify for Medicaid but not enough to meet the thresholds for financial assistance with an ACA Marketplace plan.

While receiving some federal assistance, Medicaid programs are administered by the states. This is particularly important for states like Alabama, where eligibility for Medicaid requires earning at or below 18% of the federal poverty line, which is $4,678 per year for a three-person household (Chatlani, 2025). When people's earnings meet or exceed the poverty line, they are considered to have too much income for Medicaid. Meeting 100% of the poverty level means eligibility for Marketplace subsidies that would still result in premiums they cannot afford. Regarding the situation in Alabama, Kathie Hiers, CEO of AIDS Alabama, explains, “In Alabama, the barriers in the fight to end HIV as an epidemic are very real. The state has not expanded Medicaid and has one of the worst programs in the nation, with minimal financial eligibility. The state health report card ranks in the top ten worst for almost every disease state, from infant mortality to hypertension to obesity to HIV. Rural areas are particularly hard hit as hospitals close, and people are forced to travel long distances to access medical care.”

The disproportionate effects of HIV in the South are also why governmental funding cuts are so harmful. The Trump Administration’s grant terminations and proposed budget for next year reduce HIV related funding, especially in terms of prevention. The administration's draft plan for the U.S. Department of Health and Human Services proposes terminating prevention funding at the CDC and eliminating funding for the Ending the HIV Epidemic Initiative, which was initiated during the President’s first term. Community-based groups rely on funding to survive as lifelines to vulnerable populations. In Jackson, Mississippi, a nonprofit healthcare group named My Brother’s Keeper is concerned that it may have to shut down its mobile outreach. They have a mobile RV that offers HIV tests to places such as community centers (Maxmen, 2025).

SES, stigma, and lack of insurance coverage also adversely affect the utilization of PrEP in the South. Research shows that increased access to and utilization of PrEP results in significantly better HIV transmission outcomes, even controlling for viral suppression (Sullivan et al.). However, studies show that in the U.S., Black, Hispanic, and transgender people, especially those living in the South, have lower utilization of PrEP compared to the number of people at high risk of contracting HIV (Sullivan et al., 2025). Resources are needed to build infrastructure and programs to reach Black and Latinx populations in terms of education and access to PrEP.

Photo Source: AIDSvu

Although the disproportionate impact of HIV in the South is dire, there is hope. Jeff Graham, Executive Director of Georgia Equality, had this to say, “For over forty years, our region has been under-resourced and often ignored. Addressing stigma and educating local communities are the keys to ending the HIV epidemic in the South. There have always been unique challenges to address the bias that women, people of color, LGBTQ+ communities, and those who live in rural or poor areas face every day, but our resilience has kept us going and will continue to be the driving force behind the community-based work that is as important now as it was in the early days of the epidemic. Despite the odds and the challenges, we must continue to educate, agitate, and mobilize as one united community of advocates."

The South continues to be disproportionately impacted by HIV/AIDS, and the region’s cultural, political, and societal barriers contribute to the health disparities. Change begins with raising awareness, and the community activities surrounding Southern HIV/AIDS Awareness Day play a crucial role in highlighting the issue. The work being done by Montenegro, Hiers, Graham, and so many others in the South offers offers hope and resilience.

Editor's Note: The Latino Commission on AIDS launched a Rapid Response Fund on August 20, 2025. Its purpose is to put resources directly into the hands of groups led by and serving LGBTQ+ Latine people living with HIV. These awards, up to $1,500 each, are designed to help organizations act quickly, defend their communities, and continue building local power across the South. Applications are open now and will be accepted on a rolling basis until funds are exhausted. The final deadline is December 15, 2025. LINK: https://form.jotform.com/southevents/hormiguro-rapid-response.

[1] AIDSVu. (2025, n.d.). Southern HIV/AIDS Awareness Day Toolkit 2025. Retrieved from https://aidsvu.org/resources/toolkits/toolkit-southern-hiv-aids-awareness-day-2025/#:~:text=August%2020%20is%20Southern%20HIV,region%20of%20the%20United%20States.

[2] Chatlani, S. (2024, July 19). In the 10 states that didn’t expand Medicaid, 1.6M can’t afford health insurance. Retrieved from https://stateline.org/2024/07/19/in-the-10-states-that-didnt-expand-medicaid-1-6m-cant-afford-health-insurance/#:~:text=The%20Affordable%20Care%20Act%2C%20also,%2C%20Texas%2C%20Wisconsin%20and%20Wyoming.

[3] Kaiser Family Foundation (KFF). (2025, May 20). Medicaid State Fact Sheets. Retrieved from https://www.kff.org/interactive/medicaid-state-fact-sheets/

[4] Maxmen, A. (2025, May 6). HIV testing and outreach falter as Trump funding cuts sweep the South. Retrieved from https://www.healthbeat.org/2025/05/06/hiv-trump-funding-cuts-south/

[5] Sullivan, P., Juhasz, M., DuBose, S., Le, G., Brisco, K., Isley, D., Curran, H., Rosenburg, E. (2025, June). Association of state-level PrEP coverage and new HIV diagnoses in the USA from 2012 to 2022: an ecological analysis of the population impact of PrEP. Retrieved from https://www.thelancet.com/journals/lanhiv/article/PIIS2352-3018(25)00036-0/fulltext 

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.   

Long-Acting Injectable Agents Continue to Reshape the HIV Care Continuum

By: Ranier Simons, ADAP Blog Guest Contributor

Long-acting injectable (LAI) agents remain at the forefront of medical innovation, especially regarding HIV treatment and prevention. LAIs are significant because they increase access options for people living with HIV/AIDS (PLWHA) for treatment, opening pathways for sustained viral suppression. LAIs are a solution for PLWHA who experience challenges adhering to daily oral antiretrovirals. Taking pills daily is unduly mentally burdensome as a reminder of living with HIV/AIDS; some patients cannot take daily pills due to stigma and living in an unsafe environment, and many deal with housing instability or travel frequently (New Vision, 2025). Updated study results and other recent developments solidify the efficacy and promise of LAIs as the future of treatment and prevention.

Photo Source: EATG

Cabenuva (cabotegravir plus rilpivirine), approved in January 2021, is the first and only complete long-acting injectable and two-drug regimen available for HIV treatment. Initially, it was approved for monthly injection, then expanded to bi-monthly dosing (Haelle, 2025). However, Cabenuva was developed for PLWHA who have already achieved viral suppression before starting use. Ongoing research has been investigating the efficacy of Cabenuva for PLWHA with detectable viral loads, known as viremia. 

A recent study led by Ricky Hsu, MD, of NYU Langone Medical Center in New York City, indicates Cabenuva would also be effective for widespread use for PLWHA with viremia (Haelle, 2025). The study group consisted of patients selected from the Observational Pharmaco-Epidemiology Research & Analysis (OPERA) cohort. OPERA includes over 150,000 PLWHA. Among the eligible subjects who were U.S. residents, eighty-eight percent achieved viral suppression. PLWHA with viremia on oral medication need options to facilitate reaching viral suppression, and the study shows the promise of future widespread indications for LAIs to achieve that goal (Haelle, 2025). 

Moreover, the final results of the CARES study on LAI antiretroviral therapy in Africa, released in March of this year at the Conference on Retroviruses and Opportunistic Infections (CROI) in San Francisco, further support the efficacy of LAIs. The results were so promising that the World Health Organization (WHO) updated its guidelines to inform that virally suppressed PLWHA on oral medications may switch to Cabenuva because it is equivalent (New Vision, 2025). As future studies confirm the widespread use for PLWHA with viremia, the goal would be for the WHO to add this to its guidelines.

Photo Source: European Pharmaceutical Review

While very effective, Cabenuva must be administered in a medical office setting, as it is given through intramuscular injection. The requirement of travel to a clinic setting is a potential barrier for PLWHA, particularly those with transportation challenges, especially if they do not live near a conveniently located facility. A study led by Eric Meissner, M.D., Ph.D., at the Medical University of South Carolina (MUSC) examined the possibility of LAI injections in a home setting (MUSC, 2025). The project gave thirty-three participants the option to receive injections in a clinic setting or at home. Eighteen chose the home setting.

In the home setting, eighteen PLWHA were visited by licensed practical nurses (LPNs) who gave the injections. Meissner’s group arranged for pharmacies to mail LAIs to patients, along with instructions to store the medication in their refrigerators until LPN arrival. Patients were highly satisfied, indicating that home administration is a plausible way to enhance patient adherence. Home injections would be more challenging on a widespread level, given the logistics necessary to coordinate pharmacy with staffing LPNs to visit homes (MUSC, 2025). Moreover, insurance does not reimburse for the staff coordination of pharmacy and nurse visits. Making home LAI administration commonplace would require innovation of funding infrastructure as well as staffing solutions.

Photo Source: Tu Salud

Cabenuva is a beneficial first step in the widespread use of LAIs for HIV treatment; however, it is not universally appropriate. Some PLWHA cannot use Cabenuva because they have resistance to non-nucleoside reverse transcriptase inhibitors (NNRTIs). The rilpivirine component of Cabenuva is an NRRTI (Haelle, 2025). One possible solution is the use of lenacapavir (Sunlenca) in addition to Cabenuva. Sunlenca is a semi-annual LAI used for people on oral antiretroviral treatment who have multiple-drug resistance issues. However, the future of long-acting agents should also include other options, such as those that are oral. One option under study is a weekly dosage of an oral combination of islatravir, a nucleoside reverse transcriptase translocation inhibitor, and lenacapavir (Haelle, 2024).

Eliminating HIV has required and will continue to require multiple tools of treatment. Current utilization of LAIs will lead to the development of new injectables and non-injectable long-acting agents. The variety of available therapies needs to keep up with the increasing variance in the characteristics of PLWHA in need of treatment. Continued research and funding innovation will be necessary to ensure the rapid growth of LAIs, and other non-injectable long-acting agents continues.

[1] Haelle, T. (2024, March 11). Once-Weekly ART Showed Similar Efficacy for HIV as Daily ART. Retrieved from https://www.medpagetoday.com/meetingcoverage/croi/109111

[2] Haelle, T. (2025, August 4). The Future of ART Regimens for HIV Is in Long-Acting Agents. Retrieved from https://www.msn.com/en-us/health/other/the-future-of-art-regimens-for-hiv-is-in-long-acting-agents/ar-AA1JTX8S?ocid=socialshare

[3] New Vision. (2025, August 6). Long-acting injectable HIV treatment as effective as daily oral pill — study. Retrieved from https://www.msn.com/en-xl/news/other/long-acting-injectable-hiv-treatment-as-effective-as-daily-oral-pill-study/ar-AA1K4slS?ocid=socialshare

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.   

Conscience Trumps Care under the Medical Ethics Defense Act

By: Ranier Simons, ADAP Blog Guest Contributor

The basic expectation that one can go to a hospital or other healthcare facility to receive needed healthcare is increasingly under attack. Federal and state actors are pushing legislation that allows providers to deny care to patients. The legislation purports to protect practitioners from being discriminated against for declining to participate in medical procedures that violate their religious beliefs. The reality is that patients are being discriminated against by being denied medically necessary treatment. These 'conscience protections' began to allow healthcare professionals to deny abortion care. However, these legal efforts are expanding in ways to permit a wider lens of patient care denial based on providers' personal beliefs.

Photo Source: Hall Benefits Law, LLC

The Weldon Amendment has been a driving force used to give cover to those who wish to deny abortion care. It denies federal funding to any provider or entity that discriminates against those who do not provide abortion care in response to religious objection. The amendment is not a law, but rather a provision that has been approved and added to annual appropriations bills since 2005, involving funding provided through the U.S. Department of Health and Human Services (HHS) and the U.S.Department of Labor (DOL). 

Some private health plans and those offered on the Affordable Care Act (ACA) marketplace are required to cover abortion care. Nevertheless, 

Tennessee has made conscience protection into law to an extent, reaching much farther than abortion care, allowing patients to be legally discriminated against, which can result in harm from denied care. The state signed the Medical Ethics Defense Act (MEDA) into law in April 2025 (Lee, 2025). The law states that "A healthcare provider must not be required to participate in or pay for a healthcare procedure, treatment, or service that violates the conscience of the healthcare provider." Emergency services are protected by the Emergency Medical Treatment and Active Labor Act (EMTALA) (Lee, 2025). 

Nevertheless, the markedly vague language of MEDA gives providers and entities broad latitude to refuse care simply based on deeply held beliefs. The language of the bill defines conscience as, 'sincerely held ethical, moral, or religious beliefs or principles held by a healthcare provider. The bill also makes the following distinctions:

• "Healthcare professional" means a person who participates in any way in a healthcare procedure, treatment, or service;
• "Healthcare provider" means a healthcare professional, healthcare institution, or healthcare payer; and 
• "Participate” means to provide, perform, assist with, facilitate, refer for, counsel for, advise with regard to, admit for the purposes of providing, or take part in any way in providing any healthcare procedure, treatment, or service.

Photo Source: The New York Times

The vague distinctions defined by the statute verbiage potentially allow doctors, nurses, phlebotomists, and even front desk staff to refuse service to patients based on personal bias or bigotry unassociated with specific religious doctrine, such as Catholicism's views on contraception and abortion. A doctor could refuse HIV care to someone who presented as LGBTQ because they view homosexuality as aberrant. If doctors in academic medical centers freely discriminated against patients, those with complex conditions untreatable elsewhere would have no recourse for treatment (Lee, 2025). 

Back in 1999, a California resident, Guadalupe Benitez, was denied artificial insemination fertility services because she was single. The practitioner stated it was against her religious beliefs to perform such services on unmarried women (Patsner, 2008). Ms. Benitez was referred to another doctor in the same medical practice and was unsuccessful after eleven months of infertility treatment. She was subsequently referred to a practitioner outside of the initial practice's medical group. It was later revealed that the true motivations for the initial doctor's treatment denial were because Ms. Benitez was open about being a lesbian. Ms. Benitez sued the practice for the denial.

When she first sued, she won her case with a ruling that physicians in a for-profit medical practice group must comply with California's anti-discrimination law (Patsner, 2008). The decision was appealed and overturned in the appellate court, and then appealed to the California Supreme Court. The California Supreme Court asked the question, "Does a physician have a constitutional right to refuse on religious grounds to perform a medical procedure for a patient because of the patient's sexual orientation?" (Patsner, 2008). Ultimately, the state Supreme Court ruled that a physician or practice group cannot refuse care to gay men or lesbians on religious grounds. There was no determination or discussion on the issue of being unmarried as a means of denial.

Federal laws don't allow claims of conscience to enable the violation of federal discrimination laws, which is why so much state-level legislation has been proposed. Iowa tried to pass House Study Bill 139, which eventually died in committee. It would have allowed providers and payers to deny medical services they felt violated their conscience (Opsahl, 2025). Most importantly, it would have shielded them from any civil, criminal, or administrative penalties for exercising their rights of denial. Kentucky tried to pass a similar bill, SB132, which also died in committee. It would have also provided legal protection to providers who deny services due to sincerely held religious, moral, or ethical concerns (Acquisto, 2025).

These medical conscience protection laws are perilous because they prioritize the personal beliefs of providers or payors over patients' evidence-based medical needs. Refusal of care is dire when there is a paucity of options for providers. A patient cannot be simply referred to another provider if one does not exist or is located prohibitively far away. Moreover, these laws are being written to provide those who deny care due to conscience with the means to seek a legal remedy if they feel their conscience rights are being violated. Politicizing population health is a disservice to society and deadly for patients. Patients and stakeholders who prioritize patient welfare must remain vigilant in monitoring conscience protection legislation, as efforts to deny care will continue.

[1] Acuisto, A. (2025, March 10). 'Medical conscience' bill advances in KY. Opponents say it's a license to discriminate. Retrieved from  https://www.msn.com/en-us/health/other/medical-conscience-bill-advances-in-ky-opponents-say-it-s-a-license-to-discriminate/ar-AA1AB3G2?ocid=socialshare

[2] Lee, C. (2025, July 30). The Right to discriminate against a patient. Retrieved from https://www.medpagetoday.com/opinion/second-opinions/116741

[3] Opsahl, R. (2025, February 12). Conscience protections for medical providers move ahead in the Iowa House. Retrieved from https://www.yahoo.com/news/conscience-protections-medical-providers-move-004022512.html?guccounter=1&guce_referrer=aHR0cHM6Ly9tYWlsLmdvb2dsZS5jb20v&guce_referrer_sig=AQAAAKtwUParB4LffkgGpSK52f_FBRbutTYwDMV1zJckter97uFn-H2rfAcHZfgoXX_2RNk4PJ3TDEafRuLaP0E7LuC_fJNmln8VAgdrfi9LIgu6l_v1YJq_6NojSKIh95up8_ZzFjyYWtkXh_3x_rKewVvk5VnZDD4OYDRMWEaoUa5B

[4] Patsner, B. (2008, August). Refusing to Treat: Are There Limits to Physician "Conscience" Claims?. Retrieved fromhttps://www.law.uh.edu/healthlaw/perspectives/2008/(BP)%20conscience.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.   

Paternalistic Ableism Voices Are A Growing Threat to Silence Patient Advocates

By:  Brandon M. Macsata, ADAP Advocacy CEO, Ranier Simons, ADAP Blog Guest Contributor, and Kalvin Pugh, ADAP Advocacy 340B Patient Advisory Committee Member

Healthcare policy is a complex issue, especially in the United States, with its fragmented system. Numerous stakeholders compete to influence the healthcare ecosystem — all with financial stakes in the game — including government agencies, pharmaceutical manufacturers, hospitals, practitioners, pharmacy benefits managers, insurance companies, pharmacies, and patients. Some of these stakeholders embrace the patient experience and encourage their involvement in the debate because they recognize that it is they, as patients, who are at the center of the healthcare ecosystem. Sadly, others have contempt for patient involvement. Their contempt leads to patients being attacked for their views, sometimes even to character assassinations, because their views align with pharmaceutical industry interests.

Photo Source: Bioethics Today

The relationship between patient advocacy and industry has and continues to evolve. For example, decades ago, at the early stages of the HIV epidemic, the relationship was adversarial. People living with HIV/AIDS (PLWHA) felt targeted and attacked by the medical establishment. Fear and stigma generated from many unknowns left PLWHA marginalized and manipulated by science and society, effectuating institutional disempowerment.

As such, the Denver Principles came to fruition. In 1983, at the Fifth Annual National Lesbian and Gay Health Conference held in Denver, Colorado, a group of people came together and drafted a manifesto (Rodriguez, 2023). The Denver Principles manifesto was a declaration of dignity and a statement reclaiming the rights to be treated humanely and non-paternalistically regarding HIV related medical treatment. Most importantly, the Denver Principles established collective PLWHA advocacy, creating a voice that the general public and medical establishment would have to listen to. 

The Denver Principles manifesto consisted of four sections: recommendations for healthcare professionals, recommendations for people with AIDS, recommendations for all people, and the rights of people with AIDS (U.S. PLHIV Caucus, n.d.). One of the poignant recommendations for health care professionals was to “Treat People with AIDS as whole people and address psychosocial issues as well as biophysical ones” (U.S. PLHIV Caucus, n.d.). One of the principles for PLWHA was to “Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge” (U.S. PLHIV Caucus, n.d.). A notable right of PLWHA stated was the right “To quality medical treatment and quality social service provision without discrimination of any form, including sexual orientation, gender, diagnosis, economic status or race” (U.S. PLHIV Caucus, n.d.).

Photo Source: i-base

Although the Denver Principles were birthed through an HIV lens, the conference where they were presented contained many varied panels, including holistic medicine and alcohol and substance abuse (Rodgriguez, 2023). Many advocacy populations have used the Denver Principles as a blueprint, which is evidence of the need for patient advocacy in multiple spaces. Advocating for beneficial healthcare policy, insurance reform, disease decriminalization laws, and even medication access requires discourse with and assistance from industry. Patients need industry to effectively comprehend and act upon their needs, just as industry needs patients to survive from a business perspective, as well as to engage positively as part of the overall social compact for a healthy, functioning dynamic. One example is that the pharmaceutical industry needs to create effective medications and help ensure patients have access to the drugs because dead patients don’t take medication.

Moreover, effective financial and other resource provision partnerships with industry allow advocacy groups to fight for patients in more direct ways than industry can. Industry wants patient populations to thrive just as patients desire the infrastructure to enable them to live their best lives. When a patient's needs align with industry wants, industry financial backing does not turn patients into marketing lobbying slaves. There is no patient benefit in advocating or pushing an agenda that is not in the best interests of patient health and overall well-being. Patients are independent thinkers and are not manipulated by corporate malfeasance. Many advocacy groups that receive financial backing forthrightly communicate to their sponsors that they will never advocate for something that contradicts their beliefs, even if it may be beneficial to the corporate bottom line. 

When critics of the drug manufacturers, or even fellow advocates, attempt to denigrate the contributions of individuals or organizations that align themselves with industry partners, it is not the insult one may think. It reflects the other party's lack of imagination for what valuable collaborative partnerships can be. Other thought-leaders express an enlightened view, evidenced by extensive research done on the patient experience with industry, thereby demonstrating the mutually beneficial relationship.

Photo Source: LinkedIn | Matt Toresco

Negatively characterizing patient advocacy for “having industry ties” also demonstrates a vile attitude that patients aren’t independent-minded, well-equipped with critical thinking skills. Instead, their “gotcha” attitudes are deeply rooted in paternalistic ableism. This line of thinking, recently on display by a reporter for a faux digital “news” outlet on all things 340B-related, often leads to character assassinations of patients living with severe chronic health conditions, sometimes even life-threatening ones, for expressing their opinions. It truly matters not if these patient advocates or patient advocacy organizations accept financial sponsorships from drug manufacturers; simply agreeing with industry, in their paternalistic ableism lens, disqualifies them from expressing those opinions.

In reality, patients are educated and savvy enough to come to their own conclusions about what is best for their healthcare. Equally valid, patients come to different conclusions without being told what to think or accepting a financial sponsorship.

It may be understandable from some in the HIV space who carry with them the trauma of what happened in the 1980s, or what appears to be slow responses and delayed medication options. But today is not 1985. It is 2025, where we all face uphill uncertainty, and it’s important to reframe our thinking when the truth is that patients and industry can, and do, share common goals.

Attacking patients is paternal at best, and demeaning at worst. When entities attack patient advocacy groups with malicious intent, it is evidence that the motivations of those entities are not patient-focused. It is deliberately irresponsible when individuals or entities slander the work of effective patient advocacy groups by using feeble allegations of insignificant operational characteristics to create a narrative of impropriety. Such actions raise questions about the motivations and funding of entities engaged in this behavior.

Photo Source: ABC News - Australia

The landscape of healthcare in the United States often leaves patients feeling like helpless pawns devoured by the cogs of the machinery of a complex system. The avenues for patients to fight for themselves continue to evolve. Patient advocacy encompasses a range of efforts, from individual initiatives to partnerships and community groups. Effective advocacy requires resources such as networking connections, access to subject matter experts, education, communications, data analysis, travel, and more. These endeavors often require financial resources as well. At times, health industry entities partner with patient advocacy groups, providing the necessary funding to enable patients to advocate for decisions that affect their lives, ensuring they are made with a patient-focused lens. 

Industry money does not render patient advocacy tainted or disingenuous. Often, patient goals align with industry goals in a manner like that of patient-provider alignment. Unfortunately, entities that do not have patient well-being at the forefront of their motivations often deliberately conflate industry funding with manipulation, portraying ‘patient advocacy as industry shill’ as a misguided narrative. Simply put, they’re wrong!

[1] Rodriguez, M. (2023, July 5). Remembering the Denver Principles, 40 years later. Retrieved from https://www.thebody.com/article/hiv-denver-principles-40-years-later

[2] U.S. PLHIV Caucus. (n.d.). The Denver Principles (1983). Retrieved from https://www.hivcaucus.org/resource-links/the-denver-principles-1983

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.