Fireside Chat Retreat in Minneapolis, MN Tackles Inflation Reduction Act's Adverse Impact on Patient Care

By: Brandon M. Macsata, CEO, ADAP Advocacy & Ranier Simons, ADAP Blog Guest Contributor

ADAP Advocacy hosted its Health Fireside Chat retreat in Minneapolis, Minnesota, among key stakeholder groups to discuss the adverse impact on patient care being caused by the Inflation Reduction Act (IRA). The Health Fireside Chat was held from Thursday, June 12th, to Saturday, June 14th. An analysis of the IRA's drug price controls—including its pill penalty provisions, challenges community pharmacies are facing, more restrictive drug formularies increasing, non-medical switching, and patients absorbing greater costs due to shifts from co-pays to co-insurance—were all evaluated and discussed by the 24 diverse stakeholders.

Photo Source: Getty Images

The IRA discussion was designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Health Fireside Chat. The following represents the attendees:

• Meg Beaven, Senior Director, Rational 360
• Ninya Bostic,  National Policy & Advocacy Director, Johnson & Johnson
• Grant Cale, Senior Director, Alliance Development Lead, U.S. Policy and Government Affairs, Bristol Myers Squibb
• Tori Cooper, Director of Community Engagement, Human Rights Campaign
• Jeffery S. Crowley, Director of the Center for HIV and Infectious Disease Policy at the O’Neill Institute
• Olivier Viel, Associate Director, Policy and Government Affairs, Merck
• Jazlyn Gallego, Policy and Advocacy Manager, Cancer Support Community
• Max Grechko, Associate Director, Strategic Alliances and Issue Advocacy, Novartis
• Rick Guasco, Editor-in-Chief, Positively Aware
• Connie Jorstad, Director of Government Relations, ViiV Healthcare
• Patrick Ingram, Implementation Project Manager, Midwest AETC
• Kristy Kibler, CEO, Lupus Colorado
• Amanda Kornegay, Owner, Kornegay Consulting, LLC
• Jen Laws, President & CEO, Community Access National Network
• Darnell Lewis, Paramedic Crew Chief & Patient Advocate
• Brandon M. Mascata, CEO, ADAP Advocacy
• Heidi Mesik, Senior Director, PhRMA
• Michiel Peters, Head of Advocacy Initiatives, Global Coalition on Aging
• Kalvin Pugh, Director of State Policy, 340B, Community Access National Network
• Ranier Simons, Consultant, ADAP Advocacy
• Jason Sterne, Director, Policy Advocacy and Alliances, Gilead
• Scott Suckow, Senior Consultant, Perry Communications Group
• Matt Toresco, CEO, Archo Advocacy
• Monique Whitney, Executive Director, Pharmacists United for Truth and Transparency

To level set and provide background for discussions, attendees are sent suggested readings in advance. The following are just a few from the thorough list provided for this session:

• The Inflation Reduction Act (IRA): Impact on Medication Pricing, Spending, Affordability, and Access – Analysis by Pioneer Institute
• Independent Pharmacies Reluctant to Stock Drugs in Medicare Negotiation Program, New Survey Shows – Survey by the National Community Pharmacy Association
• Executive Summary: Impact of the IRA on Patient Access & Discovery of Small Molecule Drugs – Report by the Global Coalition on Aging
• CMS Draft Guidance Creates Regulatory Vacuum in 340B Drug Pricing – Blog by Travis Manint, Community Access National Network
• How the IRA's Part B Coinsurance Inflation Adjustments Can Raise Seniors' Drug Costs – Analysis by Dr. Adam Fein, Drug Channels Institute

ADAP Advocacy is pleased to share the following brief recap of the Health Fireside Chat.

The overarching theme of the discussions was how varying aspects of issues, directly or indirectly related to the IRA, can affect patients and their access to medical care. Drug pricing was a significant thread throughout the gathering. Participants expressed a consensus that the pricing of pharmaceuticals is a complex system involving many players, with patients often being stuck in the middle or positioned at the bottom. High prescription drug expenditures are partially the result of multiple bad actors making profits at the expense of the masses who need drugs for their care. The discussion largely mirrored the conclusions reached by Kenneth E. Thorpe in his June 2024 piece in Health Affairs, "Penny Wise And Pound Foolish: IRA Impact On Chronic Disease Costs In Medicare."

In-depth dialogue occurred surrounding the IRA's effects on independent, community pharmacies. These pharmacies, in particular, routinely operate within thin margins or sometimes at a loss. Due to issues such as under-reimbursement, many pharmacies are already closing. The IRA’s Maximum Fair Price (MFP) key provision for Medicare drug price negotiation has the potential to harm pharmacies further. The MFP could negatively impact pharmacies by lowering reimbursement rates, further causing financial strain. Discourse revealed that many independent pharmacies are quietly already stating they will not be stocking many of the medications subject to the MFP because they cannot afford to. Independent pharmacies are the lifeblood of communities where larger pharmacies are not present. Closing due to financial strain would rob citizens of auxiliary services and preventative care services, in addition to drug access.

Photo Source: National Community Pharmacy Association

The conflict involving pharmacy benefit managers (PBMs) and their pharmacies was also discussed. There has been an uptick in state legislation aimed at preventing PBMs from owning and operating pharmacies in the states where they do business. Vertical integration is a problem as it allows pharmacy steering and predatory independent pharmacy contracting. When PBMs own and operate pharmacies, they manipulate pricing to their advantage, steering patients to their networks at higher costs. They also offer independent pharmacies less favorable contracts, lower reimbursements, and higher fees, among other disadvantages. Attendees gleaned from the discourse that vertical integration is considered self-dealing, which is a form of fraud. It is not ethical for a health plan to own a pharmacy, just as it is not ethical for a PBM to own one.

Moreover, under the IRA, if pharmacies choose not to participate in the MFP under the Medicare Drug Price Negotiation program, they are, in essence, excluded from participating in Medicare Part D for the drugs in question. Independent pharmacies are not in favor of the new IRA mechanism because their cash flow would be split between reimbursement from CMS and refunds from drug manufacturers to make up the difference. Pharmacies would have to suffer delays in cash flow waiting to be made whole, with the possibility of not being made whole at all. The conversation specifically acknowledged that CMS is acting as a payer without any understanding of care delivery for multiple disease states.

During the period spent discussing strategy and solutions, the underlying focus was on messaging. The concern was how to effectively convey the right message to the public and into the marketplace. Some attendees suggested that the pharmaceutical industry should be more proactive in generating opposition to the current administration. It was acknowledged that “big pharma” has taken steps, especially through extending relationships with advocacy groups. However, there remains a notion that the pharmaceutical industry needs to embrace the concept that “dead people do not buy medications.” This means that they should embrace concerted efforts to protect patients and patient access, not just from a position of altruism but as a sensible business strategy. The reality is, as Dr. Adam J. Fein of the Drug Channels Institute has pointed out, "a growing number of Part B drugs now have inflation-adjusted coinsurance rates that are rising, not falling...[and] in many cases, the rate dips temporarily before snapping back to the standard 20%." It begs the question: Are patients paying more?

Photo Source: Drug Channels Institute

Discussions of messaging also zeroed in on patient perception. The issues surrounding the IRA and its various aspects are complex, even for those well-versed in the issue. Attendees emphasized the importance of engaging patients by creating messaging that is simple yet resonates with their humanity in ways they understand. The price is being conflated with out-of-pocket costs, and messaging needs to highlight how the IRA can increase out-of-pocket costs for patients.

With so many of the IRA's targeted drug price controls falling on chronic health conditions and rare diseases, such as cancer and HIV, they have the potential to fuel already exacerbated health disparities among medically underserved communities. The sole focus on "price" largely ignores the money saved by treating these conditions with life-altering and life-saving therapeutics. Sadly, proponents of these anti-patient drug price controls—including several groups financed by Arnold Ventures' special interests efforts pushing harmful state drug affordability boards, or PDABs—leverage potentially harmful metrics. Among them is the dehumanizing quality-adjusted life years (QALYs). 

Suggestions included campaign-style messaging that utilizes both traditional and non-traditional media to educate patients by making the message more personal. Presenting the public with stories that explain how specific policies directly affect aspects of their daily lives is a way to empower patients and transform the patient community into a voting bloc. Populist patient-centered messaging and actions promote community building to engage policymakers as well as empower citizens. 

Going forward, discussions also emphasized the importance of finding ways to navigate within the confines of the challenging current administration, as its operations are adversarial, unpredictable, and unprecedented. The consensus indicated that an effective way to do this is to make “new friends.” This means engaging with untapped entities, such as labor unions, insurance commissions, Ryan White service providers, and disability groups. Many entities that potentially could be drastically affected by the IRA and other issues are unaware of their risk of adverse outcomes. Forging new avenues of communication with groups like these is a way to create infrastructure that can effect change.

Woven throughout the day's policy analysis was recognition that patient advocacy groups need to push back harder against the fallacy that their advocacy efforts aren't genuine simply because they accept financial support from drug manufacturers. Ongoing attempts to discredit patient advocacy by faux news outlets, such as the 340B Report, ignore the realities that patients and drug manufacturers often have shared interests, and that the financial support provided by industry acknowledges those values. It is also disingenuous to have patients living with chronic health conditions and rare diseases be faulted by paternalistic critics who aren't patients themselves.

ADAP Advocacy would like to publicly acknowledge and thank Jen Laws, Heidi Mesik, Michiel Peters, Jazlyn Gallego, and Matt Toresco for co-facilitating this critically important discussion.

Additional Fireside Chats are planned for 2025 in Atlanta (September).

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.

New Study Yields Insights to Women Living with HIV/AIDS, and Viral Suppression

By: Ranier Simons, ADAP Blog Guest Contributor

The goal of HIV antiretroviral therapy (ART) is viral suppression. Viral suppression is reducing the level of HIV in the blood to an undetectable status. Viral suppression is achieved through strict adherence to antiretroviral therapy (ART) regimens in their various forms. Insufficient adherence can result in increased viral loads or even virological drug resistance. As advances in ART continue, it is essential to determine the level of adherence considered sufficient for viral suppression. In a perfect world, all people living with HIV/AIDS would have 100 percent adherence to treatment regimens, meaning that they never missed a dose. That is not realistic. Thus, consensus in medical science views 95% as a high level of adherence. Even 95% adherence is not achievable for many people living with HIV/AIDS (PLWHA). Because data show that viral suppression can be achieved with adherence of less than 95% using newer medications, scientists are investigating the levels of adherence required for this outcome. A recent Canadian study examined viral suppression and treatment adherence among women, taking into account the unique characteristics of many women’s lived experiences (Mokaddam et al., 2025).

Photo Source: HIVinfo | NIH

Presently, ART is lifelong. Thus, effective treatment requires consistent and ongoing adherence. Women living with HIV/AIDS (WLWHA) have unique social, biological, and other categories of lived experience that result in unique challenges to ART adherence (Ogden et al., 2004). Canadian researchers performed a longitudinal study of WLWHA because 2020 data showed women lagged behind men concerning the Joint United Nations Programme on HIV/AIDS target for HIV care. The target is 95-95-95, meaning 95% of all PLWHA should be aware of their status, 95% of those diagnosed should be on effective therapy, and 95% of those on ART should have viral suppression (Mokaddam et al., 2025). PLWHA Data from 2020 shows men at target levels of 90%–87%–96% and women at 88%–85%–90% (Mokaddam et al., 2025). 

The Canadian study utilized data from the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS), a community-based, prospective cohort study. The CHIWOS study was conducted in three waves from 2013 to 2018. The recent Canadian study executed a longitudinal analysis of self-reported survey data, including socioeconomic data, health history including HIV and ART, substance abuse, and even history of violence and abuse (Mokaddam et al., 2025). The researchers specifically included subjects only if they reported utilizing a regimen consisting of an antiretroviral backbone with a third agent. The ‘backbone’ consists of two nucleoside reverse transcriptase inhibitors (NRTIs). The backbone is then combined with a third medication chosen from several classes, including non-nucleoside reverse transcriptase inhibitors (NNRTIs), protease inhibitors (PIs), or integrase strand transfer inhibitors (INSTIs) (HIV.Gov, n.d.). The researchers made this distinction as a standard for inclusion to rule out other forms of ART that may be prescribed due to previous drug resistance or other drug interactions and conditions to lower the possibility of confounding factors affecting adherence.

Photo Source: HIV.gov

The cross-sectional analysis of the third wave of participants revealed that overall, 95.5% reported viral suppression, and 76.2% of participants had an ART adherence level of ≥ 95% (Mokaddam et al., 2025). Of those reporting ≥95% adherence, 97% of those achieved viral suppression. Other levels of reported adherence were associated with different viral suppression percentages. Respondents who reported 85-89% adherence had a viral suppression of 78.6%, those with 75-79% adherence had a viral suppression of 75%, and those with less than 65% reported a viral suppression of 76.5% (Mokaddam et al., 2025). Those reporting 90-94% adherence to ART had a viral suppression level of 97.2%, similar to that of those with ≥95% adherence. There were no differences in the odds of participants reporting viral suppression across the various medications used as a third agent to the ART backbone. Approximately 27.2% were on a first-generation INSTI, 34.0% on a second-generation INSTI, 22.9% on a NNRTI, and 15.9% were on a PI (Mokaddam et al., 2025). 

This Canadian study suggests that the odds of achieving viral suppression with adherence rates of 90% or less are significantly lower than those with adherence rates of 95% or higher. Several studies have indicated that viral suppression can be achieved with adherence levels of 75% to 80%. Interestingly, the study observed an increase in the utilization of INSTIs as a third agent, specifically dolutegravir, over the course of the waves between 2013 and 2018 (Mokaddam et al., 2025). The use of dolutegravir increased the odds of virologic suppression (VS) across varying levels of adherence.

WLWHA have unique issues to deal with that affect their ability to maintain treatment adherence. Medication access, living situations, women-specific health conditions, and many other factors influence the ability to engage in care. It is imperative to continue exploring the impact of their lived experience on their ability to maintain adherence, coupled with the development of ART that is more forgiving in terms of the levels of adherence required to maintain viral suppression. This data is vital for women as well as PLWHA as a whole.

[1] Mokaddam, M., Kronfli, N., Sheehan, N. L., Reyes, A. G., Dubuc, D., Loutfy, M., Kaida, A., & De Pokomandy, A. (2025). Antiretroviral therapy use, self‐reported adherence, and viral suppression among women living with HIV in Canada. HIV Medicine. https://doi.org/10.1111/hiv.70034. Retrieved from https://onlinelibrary.wiley.com/doi/10.1111/hiv.70034

[2] NIH Office of AIDS Research (HIV.Gov). (n.d.). HIV/AIDS Glossary: Backbone. Retrieved from https://clinicalinfo.hiv.gov/en/glossary/backbone

[3] Ogden, L., Ogden, J., Mthembu, P., & Williamson, N. (2004). Impact of HIV on women internationally. Emerging infectious diseases, 10(11), 2032–2033. https://doi.org/10.3201/eid1011.040624_01. Retrieved from https://pmc.ncbi.nlm.nih.gov/articles/PMC3329028/

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.   

ViiV's Positive Perspectives Research Provides Insights to Patient-Provider Relationships

By: Ranier Simons, ADAP Blog Guest Contributor

The doctor-patient relationship is the cornerstone of healthcare. Patients cannot fully benefit from the many advances in medical science without a solid relationship with their provider, where they feel listened to and cared for. The relationship has been defined as “a consensual relationship in which the patient knowingly seeks the physician’s assistance and in which the physician knowingly accepts the person as a patient” (Chipedza et al., 2015). Mutual trust and vulnerability are required, especially regarding people who are living with HIV/AIDS (PLWHA). ViiV Healthcare recently released data from the third wave of its Positive Perspectives Research study (PP3), which examines the lived experiences of PLWHA globally. This wave of inquiry is heavily focused on improving health outcomes by digging into the interactions between PLWHA and their healthcare providers.

Photo Source: GoodTherapy

The current wave, PP3, will eventually include 3,000 participants. The newly released data is a result of the first 698 participants representing 16 countries, including the United States, United Kingdom, and Canada (Lutton, 2025). Eventually, it will cover 29 countries. Wave One surveyed 1,111 PLWHA and 250 of their partners, covering nine countries. Wave 2 involved 2,389 PLWHA covering 25 countries (ViiV, Press Release 2025). All the waves investigate various themes surrounding the lived experiences of PLWHA. PP3 aims to further define and raise the voices of PLWHA to improve healthcare outcomes by informing healthcare providers and other stakeholders of the realities of how PLWHA navigate their care and day-to-day lives.

Early PP3 data suggest an overarching theme of communication issues between PLWHA and their healthcare providers. The early findings indicate that there are strong levels of trust in PLWHA’s patient-provider relationships. Approximately 80% of those currently surveyed reported trusting their healthcare provider. (Lutton, 2025). However, while the trust is solid, there are reported weaknesses in areas such as patients' practical understanding of information and their inclusion in care decisions.

Photo Source: Doctor Patient Relationship

Although a high level of trust has been reported, 47.5% of PLWHA surveyed feel that their healthcare providers do not effectively listen to them, and 39.7% reported that they were not included in the choice of their antiretroviral regimen (ART) (ViiV, 2025). Successful HIV health outcomes are holistic, involving more than just a focus on viral suppression. Patients need to be able to fully express their values, preferences, and individual life circumstances to their healthcare providers. Empathy is associated with patient satisfaction and treatment adherence (James, 2023). When healthcare professionals truly listen, they can better understand how their patients interact with life, which is often vastly different from their own lives and familiar ways of thinking.

Part of ART selection is based on patients’ specific virological needs. However, there are nuances of selection that are influenced by patient preference when patients are fully informed of all their options. The preliminary study results indicated that 53% of patients were worried about long-term effects of ART (ViiV Press Release, 2025). ART comes in many different combinations of drugs with the potential for short-term and long-term side effects. Approximately 53% of respondents had ART-related weight gain as a side effect concern. It is essential for healthcare professionals to engage in transparent discussions about the aspects of different drug combinations, empowering patients to make informed decisions rather than leaving them to accept the physical manifestations of regimens that are unilaterally imposed upon them. Patients’ ability to be consistent with their regimen is also a consideration in education about all modalities, such as long-acting injectables. Approximately 43.2% of the current respondent group stated a disdain for daily medication because it was a daily reminder of their HIV status (ViiV Press Release, 2025). When patients feel fully included in their care, they are more likely to adhere to their medication schedule.

Photo Source: Patient Voices

A notable early revelation of the study is that the concept of undetectable equals untransmittable, or “U=U”, is not fully embraced or understood. Medical science has proven that PLWHA cannot transmit the HIV virus when they have reached and maintained an undetectable viral load. However, only 58% of respondents truly believed it. Approximately 93.7% knew U=U, but low uptake of it as a belief system means that many PLWHA are not empowered to fully live their lives without the guilt and stigma of embracing their relationships and sexual expression. Moreover, only 31.1% of patients were able to explain the concept of U=U to other people (ViiV Press Release, 2025). It is essential for healthcare providers to thoroughly educate PLWHA on the science behind U=U, enabling them to advocate for themselves and combat stigma within their social networks.

Wave three of the Patient Perspectives study is only partially complete. The goal of 3,000 participants will yield a more comprehensive picture of the patient-doctor relationship, providing healthcare professionals with an informed understanding of its strengths and weaknesses. Understanding what is being done well in comparison to areas needing improvement will enable providers to make effective changes to the status quo. Health literacy is influenced by socioeconomic status, age, racial and ethnic factors, and educational levels (Dawson-Rose et al., 2016). Once fully completed, PP3 will inform healthcare providers on how to facilitate improvements in patients’ health literacy, as well as bolster care professionals’ ability to step outside their own spheres of understanding into an empathetic place of true patient communication.

[1] Chipidza, F. E., Wallwork, R. S., & Stern, T. A. (2015). Impact of the Doctor-Patient Relationship. The primary care companion for CNS disorders, 17(5), 10.4088/PCC.15f01840. https://doi.org/10.4088/PCC.15f01840

[2] Dawson-Rose, C., Cuca, Y. P., Webel, A. R., Solís Báez, S. S., Holzemer, W. L., Rivero-Méndez, M., Eller, L. S., Reid, P., Johnson, M. O., Kemppainen, J., Reyes, D., Nokes, K., Nicholas, P. K., Matshediso, E., Mogobe, K. D., Sabone, M. B., Ntsayagae, E. I., Shaibu, S., Corless, I. B., … Lindgren, T. (2016). Building Trust and relationships between patients and providers: An essential complement to health literacy in HIV care. Journal of the Association of Nurses in AIDS Care, 27(5), 574–584. https://doi.org/10.1016/j.jana.2016.03.001

[3] James, T. (2023, January 12). Building Empathy into the Stucture of Health Care. Retrieved from https://postgraduateeducation.hms.harvard.edu/trends-medicine/building-empathy-structure-health-care#:~:text=Studies%20demonstrate%20how%20empathy%20improves,they%20feel%20heard%20and%20understood.

[4] ViiV Healthcare. (May 2025). Positive Perspectives Research. Retrieved from https://viivhealthcare.com/hiv-community-engagement/positive-perspectives-research/#:~:text=Wave%203%20survey

[5] ViiV Press Release. (2025, May 27). ViiV Healthcare Positive Perspectives 3 Study Finds Widespread Communication Barriers: Half of People Living with HIV Feel Unheard by Healthcare Providers Despite High Trust. Retrieved from https://viivhealthcare.com/hiv-news-and-media/news/press-releases/2025/may/positive-perspectives-survey/

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.