Congress Shines Spotlight on Health Insurance Companies' Squeeze on Patients

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

The CEOs of four major insurance companies—UnitedHealth Group, CVS Health, Elevance Health, and Cigna—testified before the House Committees on Energy and Commerce and Ways and Means on Thursday, January 22nd, 2026. It went poorly for them.

Photo Source: Kent Nishumara | Bloomberg | Getty Images

It is rare in the Year of Our Lord Two-Thousand, and Twenty-Six, for congressional enemies to join the same team when questioning witnesses, but health insurance companies seem to be one of the few industries left where bipartisan enmity is shared. And with good reason.

UnitedHealth Group, CVS Health, Elevance Health, and Cigna’s most recent financial reports indicate annual revenue growth ranging from 7.8% (CVS) to 12% (UnitedHealth & Elevance), continuing the pattern of insurers delivering for shareholders, but failing to deliver for patients.

In a statement issued after the two hearings concluded, Brandon M. Macsata, CEO of ADAP Advocacy, stated:

Patients in America are facing unprecedented increases in premiums, deductibles, and co-payments, while insurance giants make out like bandits. After Congress allowed the enhanced premium subsidies enacted during the COVID-19 pandemic to expire, marketplace benchmark premiums increased by an average of 21.7%, compared with the 2% annual increases seen from 2020 through 2025. Meanwhile, premiums increased between 6% to 7% in the employer-sponsored insurance market. These marketplace premium increases are both unconscionable and discriminatory, as they specifically target the patients who most need insurance.

These premium hikes are likely to have an outsized effect on People Living with HIV/AIDS, as most state AIDS Drug Assistance Programs assist enrollees through insurance continuation and premium and co-pay assistance.

But the issue runs deeper than premiums—one of the key moments from these hearings included an exchange between Representative Alexandria Ocasio-Cortez (D-NY-14) and CVS Health CEO, David Joyner:

Rep. Ocasio-Cortez correctly identified, explained, and excoriated Joyner for what CVS Health Group refers to as their “captive strategy.”

Photo Source: Rep. Alexandria Ocasio-Cortez | YouTube

CVS Health Group not only owns CVS pharmacies, but also owns:

• Aetna
• The health insurance company providing insurance to over 36 million Americans (Aetna, 2026)
• Oak Street Health
• A system of primary care clinics serving over 350,000 people across 27 states (Oak St. Health, 2025)
• CVS Caremark
• A Pharmacy Benefit Manager (PBM) that negotiates prices for prescription medications, processing nearly 30% of all prescriptions in a given year for more than 110 million plan members in the United States (CVS Caremark, 2026); and,
• Cordavis
• A Dublin, Ireland-based drug maker that works with existing drug manufacturers to commercialize and/or co-produce biosimilar medications for the U.S. (CVS Health, 2023)

When asked whether this collection of companies constituted “market concentration,” Joyner responded:

No, I wouldn't agree that it's market concentration. I would suggest it's a model that works really well for the consumer” (Rep. AOC, 2026).

This response, so glibly delivered, is not unique; rather, it is typical of major corporations like Microsoft, Google, Meta (formerly Facebook), and Amazon, which control multiple companies within the same sector.

It all boils down to this argument:

“This isn’t a monopoly! No! It’s just…vertical integration! It’s what’s best for consumers!”

What they’re really saying is, “It’s what’s best for shareholders and my bank account.”

Over in the House Ways and Means Committee, Representative Greg Murphy (R-NC-03) stated unequivocally:

You have put profits above patients. And you have put profits above those who care for patients. You have squarely abused your position of authority to deliver healthcare to patients in this country (Parduhn, 2026).

Photo Source: WalletInvestor.com

Paul Markovich, CEO of the non-profit parent company that owns California Blues’ largest plan, was also present for these hearings, and spared no words in criticizing the American healthcare system:

Our healthcare system is bankrupting and failing us. I’ve come to the conclusion that the system will not fix itself. The healthcare system needs some tough love and clear direction, and the American government is in the best position to provide both (Parduhn, 2026).

Markovich truly hit the nail on the head here. The American healthcare system isn’t so much a system as it is a patchwork collection of profit-driven corporations, all of whom know that they have a captive market:

• Drug manufacturers actively navigate the U.S. patent system to extend patents beyond their initial time period, secure numerous patents to cover the same product, use secondary patents to cover dosage changes, formulation changes (e.g., capsule to tablet), and even delivery methods (e.g., adding dosage counters to inhalers; Tu & Rutschman, 2025). Critics argue that these practices allow manufacturers to maintain control over the available treatment market, justify price increases, and maximize profits.
• Health insurance companies actively utilize formulary management to deny access to life-saving medications either by excluding them from their formularies outright, creating labyrinthine prior authorization processes to access them, or forcing patients to switch to medications they deem as being “similar,” but which have not been actively prescribed as they are no longer the standard of care (Giebenhain, 2017).
• PBMs act as intermediaries between individual or group pharmacies, insurance companies, pharmaceutical companies, and drug wholesalers, each of which is attempting to either save money or make a profit by (Mattingly II et al., 2023):
• Designing formularies (i.e., determining which medications are available to patients)
• Managing drug utilization (e.g., creating prior authorization requirements, including step-therapy, supply limits, and/or tiering medications based on their list prices or utilization)
• Negotiating purchasing prices between pharmacies, wholesalers, and drug manufacturers
• Forming pharmacy networks that lock patients into purchasing covered medications at specific locations (e.g., speciality pharmacies)
• Providing mail-order pharmacy services

PBMs have come under consistent criticism over the past twenty years for creating market conditions that have limited competition. By 2023, 3 PBMs accounted for 79% of prescription drug claims in the U.S., and just 6 PBMs handle 96%. CVS Caremark accounted for 33% of all prescription drug claims, followed by Express Scripts (24%) and OptumRx (22%; Mattingly II et al., 2023).

Corporate profits soar; shareholders get paid; patients suffer.

This is the plight of the American Patient: getting left behind with more and more medical debt. Meanwhile, American life expectancy lags behind that of comparable nations (Sharfstein et al., 2024), even as we’re told we have “the best healthcare system in the world.”

Paul Markovich was right: the U.S. government is in the best position to fix the U.S. healthcare system. In all likelihood, however, it lacks the political will.

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.

References:

[1] Aetna. (2026). About Us. Hartford, CT: CVS Health Group: Aetna: About Us. https://www.aetna.com/medicare/footers/about-us.html

[2] CVS Caremark. (2026). About Us. Woonsocket, RI: CVS Health Group: CVS Caremark: About Us. https://business.caremark.com/about-us.html

[3] CVS Health. (2023, August 23). CVS Health launches Cordavis. Woonsocket, RI: CVS Health Group: New: PBM. https://www.cvshealth.com/news/pbm/cvs-health-launches-cordavis.html

[4] Giebenhain, K. (2017, June). Dirty Laundry: Drug Formulary Exclusions. AMA Journal of Ethics, 19(6): 629-630. https://doi.org/10.1001/journalofethics.2017.19.6.imhl1-1706

[5] Mattingly II, T. J., Hyman, D. A., & Bai, G. (2023, November 03). Pharmacy Benefit Managers: History, Business Practices, Economics, and Policy. JAMA Health Forum, 4(11): e233804. https://doi.org/10.1001/jamahealthforum.2023.3804

[6] Oak Street Health. (2025, May). The Gold Standard of Advanced Primary Care for Medicare Beneficiaries. Chicago, IL: CVS Health Group: Oak Street Health. https://www.cvshealth.com/content/dam/enterprise/cvs-enterprise/pdfs/2025/Oak-Street-White-Paper-2025-v2.pdf

[7] Parduhn, R. P. (2026, January 23). Insurance CEOs’ no good, very bad day on the Hill. Newton, MA: Informa TechTarget: Industry Dive: Healthcare Dive: News. https://www.healthcaredive.com/news/health-insurance-ceos-house-hearings-affordability/810269/

[8] Representative Alexandria Ocasio-Cortez [RepAOC]. (2026, January 22). Rep. AOC Calls Out CVS Health’s Corporate Strategy to Monopolize Patient Care  [Video]. YouTube. https://www.youtube.com/watch?v=ayNKCNhoD7w

[9] Sharfstein, J., Gemmill, A., Appel, L., Angell, S., Saloner, B., Horwitz, J., Villareal, S., Alvarez, K., & Ehsant, J. (2024, December). A Tale of Two Countries: The Life Expectancy Gap Between the United States and the United Kingdom. Baltimore, MD: Johns Hopkins University: Johns Hopkins Bloomberg School of Public Health. https://americanhealth.jhu.edu/sites/default/files/2025-02/2024 Life Expectancy Report.pdf

[10] Tu, S. S. & Rutschman, A. S. (2025, November 14). Mapping Intellectual Property Abuses in the Pharmaceutical Field. JAMA Health Forum, 6(11): e254938. http://doi.org/10.1001/jamahealthforum.2025.4938

Sen. Cassidy Shines Spotlight on 340B Program, Furthering Calls for Reform

By: Ranier Simons, ADAP Blog Guest Contributor, and Marcus J. Hopkins, ADAP 340B Consultant

So far in 2025, state legislatures nationwide witnessed a flurry of legislation on the 340B Drug Pricing Program. Just over one hundred 340B-related bills were introduced in this legislative session (Ingmire, 2025). A handful can be characterized as genuine reform efforts. Still, most are “gimmes” to the powerful hospital lobby, designed to expand the program without any guardrails or guarantees that patients will benefit. Billions of dollars and ultimately patients’ welfare are at stake, which is why Senator Bill Cassidy recently released a report on the 340B Program. The report, focused on stronger accountability and transparency, culminates a year-long inquiry by the powerful Senate Health, Education, Labor, and Pensions (HELP) Committee. The report echoes the growing chorus calling for long-overdue reforms.

Sen. Bill Cassidy | Photo Source: End Points News

Aside from special interests representing the reform denialists, reactions to the report’s findings have been cheered and represent momentum toward something finally being done to return the program to its legislative intent. Senator Cassidy states, “This investigation underscores that there are transparency and oversight concerns that prevent 340B discounts from translating to better access or lower costs for patients. Congress needs to act to bring much-needed reform to the 340B Program” (HELP, 2025).

The 30-year-old 340B program has ballooned more than 600% since 2000, with over 60,000 participating covered entities (Olsen, 2025). The program was created to enable providers, known as ‘covered entities’ (CE), serving large populations of low-income individuals to purchase brand-name and generic medications at a considerable discount and use the savings to provide increased care to patients and lower their costs. Presently, the designation of CE encompasses six different categories of hospitals and ten categories of non-hospital entities (340B, n.d.). Drug manufacturers have to offer the drugs at a discount under the 340B program as a condition of participating in the Medicare Drug Rebate Program. 

As a result of the growing number of participants, many stakeholders are alarmed because the program seems not to result in increased care and lowered costs for low-income and uninsured patients as initially intended. Senator Cassidy’s investigation comprised information requests of eight of the most prominent 340B participants from several categories: two hospital-covered entities, two FQHCs, two contract pharmacies, and two drug makers (Muoio, 2025). What follows is an overview analysis of the Cassidy Report.

Photo Source: Senate HELP Committee

The investigation found that:

• Neither Bon Secours Mercy Health (Richmond Community Hospital in Richmond, VA) nor the Cleveland Clinic (Cleveland, OH)—the two hospital systems examined by Senator Cassidy’s office—pass on 340B savings directly to patients. Both hospital systems stated that the 340B legislation does not require them to do so. While both systems have sliding scale payment programs for patients based upon their annual incomes as a percentage of the Federal Poverty Level (FPL) that allow patients to pay smaller percentages of the costs of services, both systems responded that they are not required to pass “dollar-for-dollar” savings on to patients.

• Neither Bon Secours nor the Cleveland Clinic accounts for 340B revenues or savings in their operating budgets. Both reported sentiments that “340B revenues are revenues like any other” and did not feel obligated to allocate or earmark 340B revenues for specific purposes. Instead, both hospitals treat those revenues as part of general funds and that they can be used for any purpose they see fit. This sentiment aligns with sentiments expressed by other hospital systems in previous congressional hearings.

• Of the two Federally Qualified Health Centers (FQHCs) examined by Senator Cassidy’s office, both Sun River Health and Yakima Valley Farm Workers Clinic generated a majority of their 340B revenues from a single class of drugs—HIV/AIDS medications, which accounted for more than 54% of their 340B revenues at Sun Valley, and drugs to treat diabetes, which accounted for nearly 45% of 340B revenues at Yakima.

• Both FQHCs leveraged their 340B revenues to provide significant discounts on medications dispensed to patients whose incomes fell below 200% of the FPL.

• CVS Health and Walgreens, the two contract pharmacies and third-party administrations examined by Senator Cassidy’s office, initially refused to provide the documents requested by the office and only did so after extended negotiations.

• Both companies charge significant and increasing fees related to the provision of pharmacy dispensing and 340B third-party administrator (TPA) services. The covered entities that contract with them indicated that these increasing fees are straining their resources.

• The pharmaceutical companies that provide billions of dollars in discounts to covered entities under the 340B Program have significant concerns about the integrity of the program, with Eli Lilly and Amgen both arguing that the lack of transparency that currently exists with most covered entity types allows for covered entities, contract pharmacies, and third-party administrators to too easily manipulate, misuse, and abuse a program that was designed to increase access to care.

• Both Eli Lilly and Amgen reported significant increases in sales to contract pharmacies, rather than hospitals and grantees.

Photo Source: ADAP Advocacy

The Cassidy Report comes as ADAP Advocacy launched its national advocacy campaign, calling for reforms to the 340B Program. The campaign was kicked off with a new commercial that asks the question, Is the 340B Drug Pricing Program the Next 'Too Big to Fail'? The commercial will air in the greater metropolitan DC market while Congress is in session, and it provides plenty of fodder for lawmakers to appreciate the need to move on the report.

Ultimately, Senator Cassidy’s office recommended five changes to the 340B Program:

• Requiring covered entities to provide detailed annual reporting on how 340B revenue is used to ensure direct savings for patients, providing a more transparent link between program savings and patient benefit;

• Addressing potential logistical challenges caused by increased administrative complexity, leading to burdens that may impede patients from benefiting from the program;

• Investigating the types of financial benefits contract pharmacies and TPAs receive for administering the 340B Program to ensure that increasing fees do not disadvantage covered entities and patients;

• Requiring transparency and data reporting for entities supporting participants in the 340B Program (i.e., contract pharmacies and TPAs); and

• Providing clear guidelines to ensure that the manufacturer discounts actually benefit 340 B-eligible patients, including examining legislative changes to the definition of eligible patients.

Advocacy groups such as ADAP Advocacy, Community Access National Network, and The Alliance to Save America's 340B Program (ASAP 340B) are supportive. Cassidy’s report findings align with the work of ADAP Advocacy’s 340B Patient Advisory Committee over the last two years. In a press release, Brandon M. Macsata, CEO of ADAP Advocacy, summarized: “In 2019, ADAP Advocacy endorsed the Community Access National Network 340B Commission’s final report calling for long-overdue accountability and transparency standards to improve the 340B Program, among them clearly defining who are 340B patients, and how 340B covered entities should utilize their 340B savings to improve patient access to care and services. Senator Cassidy has laid a path to reform this vital program, and ADAP Advocacy looks forward to working with him on this important issue.” 

ASAP 340B issued a statement in support of Senator Cassidy’s work. In the release, Thomas Johnson, Executive Director of ASAP 340B, states, “This report details how large hospital systems, PBMs, and corporate middlemen take advantage of the program – it is clear the time for meaningful reform is now. We strongly urge Congress to enact legislation that realigns the 340B program in the interest of true safety-net providers and the patients and communities they serve.”

Conversely, and not surprisingly, there were some opposing viewpoints from hospital stakeholders. For example, 340B Health, a lobbying group representing over 1500 hospitals and health systems in the 340B program, expressed concern about the report. In a statement, 340B Health stated it had “concerns with several aspects of the report that may not fully reflect the purpose or implementation of 340B” (Muoio, 2025). Maureen Testoni, 340B Health’s president and CEO, also emphasized that the language of the 340B statute names ‘cost of operations’ reductions as one of the program's primary goals. She implied that using 340B savings to fund capital improvements and community benefits was a way to benefit low-income patients (Muoio, 2025). However, that sentiment is one of the concerns heralded by proponents in favor of 340B reform. Passing savings on to patients and improving their care is the impetus behind the 340B program. Capital improvements do not benefit patients directly, especially when improvements involve facilities that do not serve needy communities.

Photo Source: Drug Channels Institute

Leading biopharmaceutical experts, critical of the reform denialists' claims that the program isn't warped, pointed to the Cassidy Report to highlight glaring problems that only seem to be getting worse. For example, Adam J. Fein, Ph.D., with the Drug Channels Institute, published an analysis: "Follow the 340B Dollar: Senator Cassidy Exposes How CVS Health and Walgreens Profit as 340B Contract Pharmacies." Likewise, Matt Toresco pointed to the report, asking: "340B: Safety Net or Profit Engine?"

Although Senator Cassidy’s report involves a small sample of 340B entities, it is still an informed and enlightening cross-section of the 340B landscape and the needs for reform. Urging Congressional 340B reform actions can help bolster state legislative actions addressing the misuse of the program in hopes of refocusing the benefit on patients. Some covered entities effectively pass savings on to patients; however, many do not. Senator Cassidy has a long history of being active in healthcare reform, and this report is a salient foundation for continued efforts.

[1] 340B Health. (n.d.) 340B Drug Pricing Program Overview. Retrieved fromhttps://www.340bhealth.org/members/340b-program/overview/#:~:text=The%20340B%20ceiling%20price%20is,over%2Dthe%2Dcounter%20drugs.

[2] Ingmire, B, (2025, May 1). The Evolving Landscape of 340B Drug Pricing Laws. Retrieved from https://www.multistate.us/insider/2025/5/1/the-evolving-landscape-of-340b-drug-pricing-laws

[3] Muoio, D. (2025, April 24). Cassidy calls for 340B reform, increased oversight of hospitals, contract pharmacies. Retrieved from https://www.fiercehealthcare.com/regulatory/sen-cassidy-releases-340b-report-recommending-greater-transparency-oversight-hospitals    

[4] Olsen, E. (2025, April 28).Top Republican calls for 340B reform in long-awaited investigation. Retrieved from https://www.biopharmadive.com/news/bill-cassidy-help-committee-340B-reform-investigation/746405/

[5] U.S. Senate Committee on Health, Education, Labor and Pensions (HELP). (2025, April 24). Chair Cassidy Releases Report on 340B Reform, Calls for Congressional Action. Retrieved from https://www.help.senate.gov/rep/newsroom/press/chair-cassidy-releases-report-on-340b-reform-calls-for-congressional-action

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.  

Is Congressional Support for HIV Funding Waning?

By: Ranier Simons, ADAP Blog Guest Contributor

Federal funding is the backbone of many government functions and influences many aspects of our daily lives. Federal spending allows the Pentagon to function, supports educational programs such as Head Start, helps maintain our infrastructure, and, most importantly, affects healthcare. One aspect of healthcare with a heavy reliance on federal funding is HIV/AIDS. But has that funding kept pace with the need for people living with HIV/AIDS (PLWHA)?

Photo Source: Medical Marketing & Media

The federal government invests both mandatory and discretionary spending regarding HIV. Mandatory spending is set by laws and statutes.[1] Some of the mandatory spending related to HIV services includes Medicare, Medicaid, and Social Security Disability Insurance.[1] Discretionary spending is determined each year by Congress through the appropriations process. This includes programs such as the Ryan White HIV/AIDS Program (RWHAP) and AIDS Drug Assistance Programs (ADAP). Although needs have increased and priorities have evolved, federal funding regarding HIV has remained essentially flat and, in some cases, faces threats of cuts, which could result in unsatisfactory health outcomes. This is especially true regarding HIV and aging.

Discretionary funding supports HIV treatment and continual testing programs, helps entities to provide and promote the utilization of PrEP, and even enables assistance with social determinants of health concerns such as housing instability. However, RWHAP's core budget has been left primarily flat since 2013, although it has added 50,000 patients.[2] The program serves low-income PLWHA. Over 50% of PLWHA are dependent upon the RWHAP annually for services needed to survive and thrive, such as medication and essential support services.[3] Likewise, Emily M. Schreiber, Senior Director of Policy & Legislative Affairs for NASTAD, points out that ADAP funding last increased in FY2014. From 2014 to 2022, ADAP client enrollment increased by 60 percent.

ADAP has increasingly relied on rebates from drug manufacturers under the 340B Drug Pricing Program, but ongoing abuses by big hospital systems and mega service providers threaten the solvency of that program. Congress is knocking on 340B's proverbial door, saying: "Show Me the Money".

Exacerbating the urgency for increased spending is more extended life expectancy. Advances in medical science, such as antiretroviral therapy, mean that PLWHA are living longer. More than 50% of PLWHA in the United States are over 50, with estimates projecting that by 2030 it will be 70%.[3] Living longer means that PLWHA are dealing with many HIV-associated non-AIDS health conditions partly stemming from HIV-related chronic inflammation in the body and long-term use of strong antiviral medications.[4,5] These include diabetes, cardiovascular disease, renal disease, and cancer. Moreover, PLWHA dealing with comorbidities must navigate multiple medications, increased risk for drug reactions, and coordinate multi-specialty care.[3] 

Photo Source: Kaiser Family Foundation

Many PLWHA 65 years of age and older are covered by Medicare, and about 40% depend upon Medicaid.[3] Ten states have yet to expand Medicaid. Additionally, studies show that Ryan White-funded patients with private insurance have better health outcomes than those on Medicare. Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, states, “With people living longer, we must sustain funding just to support the services for them, but at the same time, our goal is to bring more people into HIV care and treatment. Without that additional funding, our progress in ending HIV will remain basically stalled. While we are fighting proposed cuts, we must also examine ways to use the existing federal resources in different innovative ways to make the progress we need.”

PLWHA are also being affected by discretionary funding challenges with programs that are not expressly HIV related. One such program is the Teaching Health Center Graduate Medical Education program (THC). Most primary care medical residents receive their residency training in hospitals. The Center for Medicare and Medicaid Services pays hospitals billions for primary care and other specialty residency training.[6] Conversely, the THC program trains residents in outpatient clinics instead of hospitals and has $215 million to spend through 2024. THC gives residents extensive community-based outpatient residency training in facilities such as federally qualified health centers and community clinics that are in underserved urban and rural areas.[6]

Data shows that graduates of THC residencies are more likely to remain and practice in local communities. Many PLWHA reside in underserved urban and rural communities. The THC program not only trains residents on how to care for these populations but is also a pipeline of an effective workforce to bolster care deserts. Many PLWHA in underserved areas have difficulty finding robust primary care services and infectious disease care. Effective primary care will lead to improved healthcare outcomes for PLWHA with comorbidities, in addition to enhancing their HIV care.

Photo Source: The Wright Center

Nevertheless, unlike hospital residency programs, THC funding is not guaranteed and comes from discretionary Congressional appropriations. There are 82 THC programs in the United States. Despite proven success, the program is consistently financially tenuous. Due to not having stable, long-term, reliable funding, some of the THC programs have been put on hold or stopped.[6] It was created under the Affordable Care Act in 2010 and will run out of funding in December if its appropriations funding is not replenished.

It is important to note that federal domestic discretionary spending includes Centers for Disease Control & Prevention (CDC) HIV prevention programs like the Ending the HIV Epidemic (EHE), RWHAP, ADAPs, National Institutes of Health (NIH) HIV/AIDS research, and even Housing Opportunities for Persons with AIDS (HOPWA).[1] President Biden’s fiscal year 2025 budget request eliminates barriers for Medicaid recipients to receive PrEP and proposes a program to guarantee PrEP for all uninsured and underinsured.[1] It also requests a new $10 million program to improve equity and civil rights through a DOJ program to eradicate outdated criminal statutes that target PLWHA.

The evolution of HIV is not stagnant or flat, nor should its funding be. The lives of PLWHA and efforts to end the HIV epidemic are too important to be left on unstable funding grounds due to the politicization of disease and misappropriation of scarce resources. House Republicans have expressed the desire to cut as much as 11% of a bill that supports HIV programs.[7] Failure to increase and innovate funding will adversely affect the progress that has been made as well as lead to avoidable poor healthcare outcomes and increased costs.

[1]  HIV.Gov. (2024, May 13). Federal HIV Budget. Retrieved from https://www.hiv.gov/federal-response/funding/budget

[2] Whitehead, S. (2024, June 19). Americans are living longer. Federal spending isn't keeping up. Retrieved from https://www.medpagetoday.com/hivaids/hivaids/110714?xid=nl_mpt_DHE_2024-06-19&eun=g1964022d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%20Evening%202024-06-19&utm_term=NL_Daily_DHE_dual-gmail-definition

[3] Health Resources and Services Administration. (2023, December). HRSA Ryan White HIV/AIDS Program Parts and Initiatives. Retrieved from https://ryanwhite.hrsa.gov/about/parts-and-initiatives

[4] HIV.Gov. (2024, June 4). Aging with HIV. Retrieved from https://www.hiv.gov/hiv-basics/living-well-with-hiv/taking-care-of-yourself/aging-with-hiv#:~:text=Health%20Issues%20and%20Aging%20with%20HIV&text=In%20addition%2C%20while%20effective%20HIV,%2C%20renal%20disease%2C%20and%20cancer.

[5] Gallant, J., Hsue, P. Y., Shreay, S., & Meyer, N. (2017). Comorbidities Among US Patients With Prevalent HIV Infection—A Trend Analysis. The Journal of Infectious Diseases, 216(12).

[6] KFF Health News. (2024, June 13). Funding instability plaques program bringing doctors to underserved areas. Retrieved from https://www.usnews.com/news/health-news/articles/2024-06-13/funding-instability-plagues-program-bringing-doctors-to-underserved-areas?src=usn_tw

[7] Burke, J. (2024, May 21). Press Release: New CDC HIV Data Demonstrates the Impact of Flat Funding. Retrieved from https://hivhep.org/wp-content/uploads/2024/05/CDC-HIV-data-press-release-5.21.24.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.  

Special Interests Favor S.4395, but Patients Oppose It...Here's Why

By: Brandon M. Macsata, CEO, ADAP Advocacy Association & Jen Laws, CEO, Community Access National Network

The very first words of the Ryan White HIV/AIDS Treatment Extension Act of 2009 read, “An Act to amend title XXVI of the Public Health Service Act to revise and extend the program for providing life-saving care for those with HIV/AIDS.” These words reflect the true legislative intent of the Act, which is to provide life-saving care and treatment for people with HIV/AIDS (PLWHA). For over thirty years, these words have represented a contract between our government and PLWHA, reflecting a commitment to patients. The Ryan White HIV/AIDS Program (RWHAP), as the payor of last resort, has literally served as the only lifeline for hundreds of thousands of patients in some of the most marginalized communities. That is why the ADAP Advocacy Association and the Community Access National Network (CANN) have led a national advocacy campaign to thwart any effort to undermine the legislative intent.

A proposed bill, S.4395 (otherwise known as the "Ryan White PrEP Availability Act"), would, for the first time in the 32-year history of this life-saving contract, open the Act to divert programmatic funding from PLWHA to people who are not living with HIV. The legislation is not only ill-conceived, it is potentially very dangerous. The special interests behind this legislation, as well as their inside-the-beltway lobbying tactics, do not reflect the general sense of the much broader HIV patient advocacy community. 

In fact, nearly 100 national, state, and local organizations joined the ADAP Advocacy Association and Community Access National Network in submitting a sign-on letter to Congress expressing the HIV patient advocacy community's collective concerns over the legislation. The sign-on letter was sent to Chair and Ranking Member of the Senate Committee on Health, Education, Labor & Pensions (HELP), Chair and Ranking Member of the House Committee on Energy & Commerce (E&C), and the Co-Chairs of the Congressional HIV/AIDS Caucus. Several of these offices applauded our efforts upon acknowledging receipt of the letter.

David Pable, who has been deeply embedded in South Carolina's patient advocacy community, expressed strong sentiments against the legislation. Pable said, "For almost 20 years, Ryan White has been a lifeline for me, and it was truly the safety net that saved my life. Ryan White-funded medical care, case management, and mental healthcare services have transform my life and the lives of countless others to survive and thrive." Pable's views are shared by nearly all PLWHA who learn about the potential danger lurking behind S.4395.

Over the years, Pable had the opportunity to be involved in many planning meetings for prevention services, including the need for an adequate PrEP program with dedicated funding. According to Pable, never in any of those meetings was it discussed as a good idea to funnel funding from the Ryan White Program to pay for PrEP. "Treatment, care and prevention make up three sides of the triangle," he said. "Together they each hold up the other, but take one piece away to support the other and eventually it will all fall apart." 

S.4395 would authorize the Health Resources & Services Administration (HRSA) to divert already limited resources away from providing care and treatment for PLWHA. The legislation reads, in part, "Any eligible area, State, or public or private nonprofit entity that receives a grant under part A, B, C, or D may use program income received from such a grant to provide to individuals who are at risk of acquiring HIV... drugs and biological products for pre-exposure prophylaxis (PrEP)... medical, laboratory, and counseling services related to such drugs and biological products...and referrals and linkages to appropriate services for the prevention of HIV."

The legislation is extremely ill-advised for numerous reasons. Amending the Ryan White Program (Pub.L. 101-381) would:

• Open-up the law, (which is currently unauthorized) and thus subject it to potentially harmful changes in a hyper-partisan political environment. 
• Change the purpose of the law, in that the purpose of the Ryan White Program is serving people living with HIV/AIDS.
• Create yet another access barrier for the approximately 400,000 PLWHA who are not in care.
• Further isolate PLWHA who are already disproportionally impacted by homelessness, hunger, substance use disorder, and undiagnosed and/or untreated mental health conditions. 
• Impede Ending the HIV Epidemic's efforts to both increase enrollment and expand services for low-income PLWHA, especially since discretionary funding is already limited.

Unfortunately, special interests continue to push false narratives in their efforts to shove the harmful legislation through the Congress. Probably one of the most egregious claims, “The bill’s intent and text doesn’t take money from people living with HIV.” This is false! 

Indeed, legislative language reads, “To allow grantees under the HIV Health Care Services Program to allocate a portion of such funding for services to individuals at risk of acquiring HIV.” While subsection “B” of the legislation entitles the program as “voluntary” and to not allow federal grant dollars for the use of funding PrEP or PrEP services, it would allow federal grant dollars to be used for referrals – explicitly providing funding for people not living with HIV.

Photo Source: oncnursingnews.com

More concerning, special interests supporting the legislation conflate programmatic revenue as not grant dollars, as a somehow meaningful distinction. There is no difference in this distinction because each funded RWHAP recipient and subrecipient is required under current law to use their programmatic revenue to support providing services included in the grant – for people living with HIV. The design of these programs are significantly dependent on revenues generated from the 340B Drug Discount Program (340B) in order to meet the goals outlined in each of the grants. 

And that gets to the heart of the issue here. 340B's intent was “to stretch scarce federal resources as far as possible, reaching more eligible patients and providing more comprehensive services.” The program, amid much criticism, allows federal grants funding public health programs count on 340B revenues in order to show they can operate a sustainable program.

Let's be clear: S.4395 would divert RWHAP programmatic revenues – including 340B dollars – away from providing services and supports to PLWHA who are living at or below 400% of the federal poverty level (the income threshold for qualifying as eligible for receiving RWHAP funded services). It is important to remember that more than 50% of the patients receiving care from the State AIDS Drug Assistance Program are living at or below 100% of the federal poverty level. More than 250,000 patients, or approximately one quarter of all the estimated people living with HIV in the United States are earning less than $13,000 per year. 

Kathie Hiers, President & CEO of AIDS Alabama argued, "The HIV community needs to get its act together around funding for PrEP.  We have been told by the Director of the Office of National AIDS Policy that our messaging is not cohesive. At AIDS Alabama, we understand that stable PrEP programs are absolutely necessary if we ever hope to end HIV as an epidemic. However, raiding the Ryan White Program to fund prevention is not the answer, particularly as the needs of an aging HIV-positive population continue to grow."

As it stands, gaps in care still remain for too many marginalized communities. It isn't uncommon for patients to fall out of care because they have to prioritize work, or child care, or buying food, or finding affordable housing, or finding transportation. Funding to meet the needs for these patients is already stretched way too thin and the current inflationary pressures have only made things harder for far too many PLWHA. There are tens of thousands of people living with HIV who have no roof over their heads when they try to find a safe spot to sleep tonight.

Photo Source: debralmorrison.com

Robbing Peter to pay Paul is not the solution to funding HIV prevention efforts in the United States. A better option to meet the needs of people who would benefit from PrEP, and that is additional HIV prevention funding. This approach would allow patient choice in medicines and support for ancillary services, provider education and outreach. Additionally, HIV prevention funding could be directed to communities that are most in need of prevention medicines and services, thereby providing more equitable access. This approach would also use and could strengthen the existing HIV prevention infrastructure.

One local health department official (who asked to remain anonymous) in Florida said the people behind the legislation did not understand the nuances between funding for HIV prevention and HIV treatment. We couldn't agree more!

The HIV+Hepatitis Policy Institute's Carl Schmid summarized, "It's not an issue of not wanting clinics that receive Ryan White Program funding to be engaged in PrEP, we think they are the perfect places for PrEP to be delivered. It is an issue of taking funding generated from caring and treating for people living with HIV away from the intended purpose of the Ryan White Program – to provide for people living with HIV. With so many people with HIV living longer, who are not in care or have fallen out of care, you would think that these Ryan White grantees would devote that money to people who are living with HIV, as it was intended."

With more than a decade of science to back the position that effectively treating PLWHA, ensuring viral suppression both empowers positive health outcomes for PLWHA and prevents new transmissions. One of the most startling and, frankly, concerning shifts in the public policy conversation regarding Ending the [domestic] HIV Epidemic is a move away from focusing on the needs of PLWHA in favor of PrEP. The policy issues at hand, including the necessary funding, should not be proposed as an “either/or” situation, but an “and” situation. The same things that make a person vulnerable to contracting HIV are the same things that are killing people already living with HIV. 

While the U.S. Centers for Disease Control and Prevention (CDC) 2020 Surveillance data found 70% of white PLWHA were virally suppressed, only 60% of their Black/African American peers were virally suppressed. Additionally, while the U.S. Department of Housing and Urban Development (HUD) reported a general homelessness rate across the country as about 0.2% of the population, the CDC’s 2019 data found that PLWHA among communities of color were experiencing homelessness at a rate of 11%. It cannot be understated how the power RWHAP dollars hold to address these disparities specifically affecting patients. Failing to do so not only betrays the contract at the center of the legislative intent, it perpetuates injustices levied against our peers, our family, and our community. Raiding precious dollars from this program is nothing short of consenting to the unjust neglect of our communities.

Said Murray Penner, U.S. Executive Director for Prevention Access Campaign: "The Ryan White Program is crucial for people living with HIV, providing treatment and supportive services to keep people healthy and undetectable so they will not sexually transmit HIV. With over 400,000 people living with HIV in the U.S. who are not virally suppressed, there is significant unmet need for additional services. S.4395 would move money out of the Ryan White Program, potentially leaving people without the crucial treatment and services that keep them healthy and prevent new transmissions. Ensuring that the Ryan White Program is fully funded is critical for us to improve the quality of life for people living with HIV and thus improve our country's viral suppression rate and help us end the HIV epidemic."

A cornerstone of the HIV patient advocacy community's success over the last 40 years has been its desire to come together for a common purpose, which has centered around the notion of do no harm! S.4395 and the special interests and inside-the-beltway lobbyists pushing it have failed to meet that test. Raiding Ryan White programmatic funding for PrEP would negatively impact patients. Trying to authorize or amend an already underfunded program, when there is still so much unmet need in its originally intended population, undermines the goals of the program. If we try to be everything to everyone, we will end up failing on all fronts. The powers that be in Congress have assured us that this legislation "ain't going anywhere" this year!

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.

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

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

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

Photo Source: NASTAD

Upon releasing the 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report, NASTAD issued the following statement:

"Building on the 22-year history of reporting on the AIDS Drug Assistance Program (ADAP), the National ADAP Monitoring Project, including the Annual Report, has evolved to include the program under which ADAP falls – the Ryan White HIV/AIDS Program (RWHAP) Part B program.  The Annual Report has thus been renamed and reimagined.  The 2018 National RWHAP Part B and ADAP Monitoring Project Annual Report (The Report) includes narrative and findings that span the totality of the RWHAP Part B program and reflect the reality that the achievements of ADAPs and other elements of the RWHAP Part B programs are inextricably linked."[1]

The report includes relevant information about ADAP's funding and structure, as well as key programmatic details — such as number of clients served, viral load suppression rates, and medical program expenditures. This year's report also includes important sections on structural inequities and the changing health care landscape. Infographics once again accompanied this year's report. In addition, a glossary of key ADAP terms can be found on the NASTAD website.

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

Some key findings include:

• Fourth open enrollment period via Affordable Care Act insurance marketplace ended on April 30, 2017[3]
• Part B estimated drug rebates = $193,335,704[4]
• ADAP estimated drug rebates = $723,825,912[5]
• $398.2 million in estimated expenditures insurance purchasing/continuation[6]
• 48% ADAP clients served by full-pay prescription program only[7]
• 38% ADAP clients served by ADAP-funded insurance program only[8]
• 14% ADAP clients served by ADAP-funded insurance and full-pay prescription programs[9]
• 273,680 RWHAP Part B & ADAP clients enrolled[10]

Other key component of the report include valuable information about clients co-infected with HIV and Hepatitis C ("HCV"), incarcerated and formerly incarcerated populations, aging populations (and related morbidity and mortality), and clients impacted by substance use. As is customary, NASTAD should be applauded for their amazing work on pulling together all of this information for ADAP stakeholders.

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

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

Introduce a Little Anarchy...and Everything Becomes Chaos

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

In the 2008 blockbuster film, The Dark Knight, there is an infamous line by the Joker (played by the late Heath Ledger): "Introduce a little anarchy; upset the established order, and everything becomes chaos." That line by the Clown Prince of Crime pretty much sums up the last twelve months for those of us working to end the HIV/AIDS epidemic. In fact, chaotic would be an understatement.

Photo Source: The Dark Knight

The Administration's proposed budget last year was submitted to Congress late (and it will be so again this year), and it was laced with requested funding cuts to vital safety net programs. The Presidential Advisory Committee on HIV/AIDS ("PACHA") is in complete disarray between protest resignations coupled with termination of the remaining members. The Office of National AIDS Policy ("ONAP") — viewed as an important component of the White House Domestic Policy Council since 1993 — is seemingly gone. There has been no ONAP Director to coordinate the nation's response to HIV/AIDS at home, and abroad. Proposed regulations allowing healthcare professionals to deny care if it violates their "conscious" and seek to divert limited resources to organizations that refuse comprehensive strategies under the banner of religious objection. And that doesn't even scratch the surface with the countless attacks levied against the patient protections offered to people living with HIV/AIDS under the Affordable Care Act ("ACA").

On February 1st, we fired a shot across the bow at the Administration. We called on the newly minted Secretary of the U.S. Department of Health & Human Services ("HHS") to fill the vacant director position at ONAP. Now to be fair, HHS Secretary Alex Azar has no statutory authority to fill this position but he has the ear of the President who does — and that has to be worth something. Our press release is available online.

Photo Source: (AP Photo/Andrew Harnik)

It is, after all, a core responsibility of the HHS Secretary to utilize the position of influence with the President in seeking to address the public health needs of the nation. We have added our voice to the calls from numerous other advocates, legislators, and organizations that realize the vital need for this position to be filled immediately.

Since 1993 when ONAP was created the longest time period the director position remained vacant was approximately two months. It has now been twelve months since someone has led our government's response to an epidemic that has taken 35 million souls globally. It is bad public policy. It demonstrates poor leadership. And it is simply wrong!

Drug Importation Policy is a Hard Pill to Swallow

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

When I first heard the news that Congress was considering legislation that would allow prescription drugs to be imported from abroad, I was honestly quite shocked. I know firsthand how such policy can negatively impact consumers who decide to purchase drugs from abroad. The potential consequences are quite daunting.

In 2002 (just shy of my 30th birthday), I was diagnosed with HIV. When my doctor told me the news, a hundred questions came to mind all at once. What was my long-term prognosis? What types of medications would I have to take? Who could I turn to with my questions about life with HIV?

(Editor's Note: The photo of me was taken in 2002 on Easter Sunday during the time that I was importing my HIV medications. At the time, I was still quite sick after experiencing my acute seroconversion. In fact, in this photo my two best friends are literally helping me stand up, and they made me look "presentable" with some make-up. The benefits of rooming with two wonderful women who took care of me.)

What happened next directly shaped my viewpoint of the dangers associated with importation.

I ordered medications from an online Canadian pharmacy. To this day, I have no way of knowing where the drugs were made or if they contained the active ingredients I needed to effectively treat my condition.

At the time, I opted not to consult my physician in the process. Due to my insurance coverage, my out-of-pocket cost was $1,300 during the second month of treatment. For two months, I received medications via mail from Canada. Honestly, I didn’t even entertain the idea of whether the medicines were real or fake.

Fortunately, my doctor intervened and advised me of the reality of what I was doing. She told me that drugs purchased through online channels are often counterfeit and most likely do not contain any ingredients that help patients. In many cases, the ingredients can be deadly. Without even knowing it, I was rolling the dice with my health and safety. It was an eye opening intervention and one that too few patients ever experience before irreparable damage has been done.

Without question, we need to address the issue of rising health care costs in the United States, which greatly contributes to patients buying medicines online. However, legalizing importation isn’t the solution we need. It will undoubtedly lead more patients to risk their health and, ultimately, their lives through online drug purchases.

Consider the following: The World Health Organization estimates that 10 percent of medicines across the world are fake. In some parts of the world, this number is as high as 30 percent. In 2015, Interpol confiscated nearly 21 million fake medicines, a significant increase over the previous year.

As a society, why would we take our guard down when the threat is so high? As someone who is informed on health care issues (even at the time of my diagnosis), my search for Canadian pharmacies did little to warn me against the dangers. I had little knowledge or available information when I ordered medications from Canada.

Rather than open the floodgates to unregulated medicines, we should be doing more to ensure the safety and integrity of our drug supply. Last month, former FBI Director Louis Freeh released a report highlighting the incentives that drug importation would create for criminals who are actively marketing to consumers in the U.S. and the burden it would place on law enforcement who protect our drug supply.

Among his recommendations to be proactive on the issue, Mr. Freeh urges policymakers to conduct a detailed assessment of law enforcement’s readiness and ability to get in front of the threat that exists. I completely agree with Mr. Freeh - this should be our focus.

As we strengthen our defenses, we must also prioritize patient education and engagement initiatives to ensure that we’re deterring importation from the moment of diagnosis. The reality is that a number of online pharmacies with a Canadian flag attached to them are merely front doors for smugglers operating in countries across the globe.

There are viable ideas to combat the rising cost of healthcare – including prescription medications – but importation is not one of them.

Over the past two decades, we’ve made significant progress against HIV/AIDS. Today, there are medications available that we didn’t have just a few years ago. In fact, recent studies have shown that people in North America and Europe who are infected with HIV and who begin treatment with a triple-drug cocktail can expect to live nearly as long as people who aren’t infected by the virus.

Having lived with HIV for nearly 15 years, I know how important medicine is in achieving a sense of normalcy again. If we embrace drug importation, we’re sending a signal to patients across the country that their health and safety don’t matter. Lawmakers should not be playing a game of chance when patient lives hang in the balance.

This opinion piece was also published in the August 11th edition of the Washington Blade.

Summer is Hot, but the Debate Over Drug Pricing could be even Hotter

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

Temperatures across the United States are sizzling with the arrival of summer, but they could pale in comparison to the emerging debate over the rising cost of prescription drugs. A state ballot initiative, coupled with a rumored presidential executive order and pending federal legislation in Congress are setting the stage for a heated battle over drug pricing.

In Ohio, voters are already being inundated with 30-second political attack ads from both sides of the debate. One advocate in the state has said, "Every commercial break is flooded with them... and it is only summer." The "Ohio Drug Price Relief Act" will take center stage before the voters in November 2017, with spending on political ads expected to break all previous records for any statewide ballot initiative.

The ballot initiative would "require the state of Ohio to pay no more for prescription drugs than the U.S. Department of Veterans Affairs (VA), which has negotiated a discount of up to 40 percent."[1] It is supported by the Ohio Taxpayers for Lower Drug Prices, and it is opposed by the Ohioans Against the Deceptive Rx Ballot Issue. Veterans groups have also lined up against the ballot initiative.

According to Ballotpedia, a "yes" vote supports the measure to require state agencies and programs to purchase prescription drugs at prices no higher than what the VA pays for them, and a "no" vote opposes the measure to require state agencies and programs to purchase prescription drugs at prices no higher than what the VA pays for them.[2]

"I would assume that the happiest people in Ohio today are the people who are selling television commercials. The pharmaceutical industry will spend whatever they believe they need to spend to try to confuse and mislead the public," summarized Rick Taylor, a consultant for the Ohio Taxpayers for Lower Drug Prices.[3] Here is a political ad airing in support of the ballot initiative:

Source: Ohio Taxpayers for Lower Drug Prices

Curt Steiner, campaign manager for the Ohioans Against the Deceptive Rx Ballot Issue, argued, “Experts who have studied the proposal — including three former Ohio Medicaid Directors and a former state Budget Director — say it’s not only unworkable, but could actually increase prescription drug costs for the majority of Ohioans and reduce patient access to needed medications.”[4] Here is a political ad running against the ballot initiative:

Source: Ohioans Against the Deceptive Rx Ballot Issue

With the ballot initiative over four months away, voters in Ohio might simply turn off their televisions rather than contend with the forthcoming onslaught of these negative ads. There has been no public polling released on the issue in Ohio (...yet), but a similar ballot initiative failed last November in California.

In the meantime, news reports are floating that President Donald J. Trump plans to issue an executive order on drug pricing, though the timeline remains unclear. A draft version of the executive order, which was obtained by The New York Times, appears to give into demands by the pharmaceutical industry and rolls back numerous regulations.[5]

Some had hoped for rebates in Medicare Part D that would be similar to Medicaid,[6] but they appear absent from the draft obtained by The New York Times. Such a move would have greatly benefited consumers. It hard to see how the draft executive order would assist consumers, or public payors — such as State AIDS Drug Assistance Programs.

The measure is already being met with skepticism, especially because it appears to roll-back discounts authorized under the 340B Drug Discount Program. Dr. Joshua M. Sharfstein, a professor at Johns Hopkins Bloomberg School of Public Health, summarized this concern by saying, “That’s one that sticks out as a bit of a head scratcher. This is the executive order to lower drug prices — why would you put in a provision that would raise drug prices?[7]

Speaking for many in the patient advocacy community, Eddie Hamilton with the ADAP Educational Initiative questioned, "We don’t have any further information on this proposed draft, but it does raise some concerns. It appears to target 340B and the hospitals are, of course, screaming but we can’t verify that our community will be spared."

Congress isn't absent from the debate over drug pricing. In fact, a recent article in Roll Call spelled out the enormous pressure faced by lawmakers to do something on lowering the cost of prescription drugs. Presently, 802 bills addressing drug pricing have been introduced in Congress since the beginning of the year. Among them are the following:

• S.1369 - A bill to amend the Internal Revenue Code of 1986 to establish an excise tax on certain prescription drugs which have been subject to a price spike, and for other purposes. (Note: H.R.2974 is the companion legislation before the House of Representatives)
• S.1131 - Fair Accountability and Innovative Research Drug Pricing Act, which is a bill to require reporting regarding certain drug price increases, and for other purposes. (Note: H.R.2439 is the companion legislation before the House of Representatives)
• H.R.1316 - Prescription Drug Price Transparency Act, which is a bill to amend title XVIII of the Social Security Act to provide for pharmacy benefits manager standards under the Medicare prescription drug program and Medicare Advantage program to further transparency of payment methodologies to pharmacies, and for other purposes.
• H.R.242 - Medicare Prescription Drug Price Negotiation Act, which is a bill to amend part D of title XVIII of the Social Security Act to require the Secretary of Health and Human Services to negotiate covered part D drug prices on behalf of Medicare beneficiaries.

Ballot initiatives, executive orders, and legislation are all stoking the flames over the drug pricing debate, but they don't even include ongoing litigation filed by 20 state attorney generals. It is clear that the issue has reached a climactic point and something needs to be done about it. The ADAP Blog will continue to monitor each of these developments.

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[1] Pelzer, Jeremy (2017, May 3). Fight over Ohio Drug Price Relief Act ballot issue could set spending record. Cleveland.com. Retrieved from http://www.cleveland.com/politics/index.ssf/2017/05/fight_over_ohio_drug_price_rel.html.
[2] Ballotpedia. Ohio Drug Price Standards Initiative (2017). Retrieved from https://ballotpedia.org/Ohio_Drug_Price_Standards_Initiative_(2017). 
[3] Pelzer, Jeremy (2017, May 3). Fight over Ohio Drug Price Relief Act ballot issue could set spending record. Cleveland.com. Retrieved from http://www.cleveland.com/politics/index.ssf/2017/05/fight_over_ohio_drug_price_rel.html.
[4] Troy, Tom (2017, May 23). Opponents launch TV ad against Ohio Drug Price Relief Act. The Toledo Blade. Retrieved from http://www.toledoblade.com/State/2017/05/23/Opponents-launch-TV-ad-against-Ohio-Drug-Price-Relief-Act.html.
[5] Kaplan, Shelia, and Katie Thomas (2017, June 20). Draft Order on Drug Prices Proposes Easing Regulations. The New York Times. Retrieved from https://www.nytimes.com/2017/06/20/health/draft-order-on-drug-prices-proposes-easing-regulations.html.
[6] Nather, David (2017, May 12). Mulvaney says Trump wants executive action on drug prices. Axios. Retrieved from https://www.axios.com/vitals-2403219901.html.
[7] Kaplan, Shelia, and Katie Thomas (2017, June 20). Draft Order on Drug Prices Proposes Easing Regulations. The New York Times. Retrieved from https://www.nytimes.com/2017/06/20/health/draft-order-on-drug-prices-proposes-easing-regulations.html.

Despite Trump's Troublesome Policies, HIV Advocacy Must Remain in Motion

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

Earlier this year, we highlighted a decade of accomplishment achieved by the ADAP Advocacy Association since the organization's inception in 2007. Unfortunately, there is little time to celebrate because so much uncertainty — and yes, fear — exists over some of the troubling policies being put forth by the Trump Administration, and how they could potentially impact people living with HIV/AIDS. For that very reason, HIV advocacy must remain in motion!

The ADAP Advocacy Association has long contended the Affordable Care Act (ACA) is far from perfect, but it would be a mistake to ignore how the law has expanded coverage for low income and disadvantaged Americans. In fact, according to FactCheck.org nearly 20 million Americans have gained access to health insurance thanks to the ACA. There is no fake news behind that number!

Affordable Care Act Medicaid Expansion; KFF.org

Medicaid expansion — which was authorized by the ACA — had a lot to do with the dramatic decrease in the number of people uninsured in the United States. Many people living with HIV/AIDS benefited from Medicaid expansion, and their ability to access timely, appropriate care and treatment actually saved the taxpayers money. That's not to suggest that other negative, unintended consequences haven't emerged since the ACA's passage — including insurance discriminatory design with extremely high co-payments for anti-retroviral medications, adverse selection limiting access to care, or rising premiums and cost-sharing. There is also no fake news behind these facts, either!

Repeal? Replace? Repair? It is hard to know the future of the current ACA, but the Republican plan...as it currently exists...is bad for people living with HIV/AIDS. There is little debate over that statement. In fact, four Republicans governors — Snyder of Michigan, Kaisch of Ohio, Hutchinson of Arkansas, and Sandoval of Nevada —who actually favor the ACA's repeal have come out against the GOP-sponsored American Health Care Act, as it is known. Why? Because they recognize the important role Medicaid expansion has played for the people living in their respective states.

Ohio Governor John Kasich has voiced concerns about
repealing the Affordable Care Act; The Atlantic 

People living with HIV/AIDS haven't been well-served by the hyper-partisanship that has swept over the nation's capitol in recent years, especially with respect to the ACA. One political party buried its collective head in the sand and ignored the law's flaws, while the other political party obsessed over repealing the law without a viable alternative to replace it. Blame can be placed at the feet of both the Democrats, and the Republicans.

But rather than trying to score political points or rehash political talking points, people living with HIV/AIDS are making their voices heard loud and clear. They are trying to be part of the solution by engaging in HIV advocacy in motion...whether is activism via social media, or the National HIV Call-In Day (which was held on March 21st), or the countless sign-on letters being sent to Congress. It is encouraging that it is happening at the national, state, and local levels.

The ADAP Advocacy Association, for its part, has a robust schedule of events and projects planned for the current year. They include:

• AIDS Drug Assistance Program Regional Summit in Raleigh, North Carolina on April 14th
• 10th Annual Conference - "Unchartered Water: AIDS Drug Assistance Programs in the Age of Trump" in Washington, DC on September 22nd - 23rd
• PASWHA Webinar Series on "Linkages to Care: Promoting Access to Care & Treatment for People Living with HIV/AIDS"

Scholarships are available for people living with HIV/AIDS who wish to participate, so that the voice of persons living with HIV/AIDS shall always be at the table and the center of the discussion. The webinar series will include the following topics:

• Wednesday, May 31st – Plugging the Treatment Gap: Navigating Patient Assistance Programs
• Wednesday, June 28th – Housing is Healthcare: Linking Stable Housing & Medication Adherence
• Wednesday, July 26th – Transgender Healthcare: Removing Barriers to Healthy Cultural Expectations
• Wednesday, September 27th – Body & Soul: Combatting the Dual Epidemic of HIV-Infection and Substance Abuse

More information about the ADAP Advocacy Association's sponsored events is available online at http://adapadvocacyassociation.org/events.html.

These activities are designed to raise awareness, offer patient educational programs, and foster greater community collaboration. Each one is enhanced by partnering with various other organizations, such as the AIDS Healthcare Foundation (AHF), Community Access National Network (CANN), North Carolina AIDS Action Network (NCAAN), and the Professional Association of Social Workers in HIV/AIDS (PASWHA). Several other projects are also in the works for the coming year.

If one good thing has come from the Trump Administration's proposed policies, then it is an increasingly energized front by the HIV community.