Fireside Chat Retreat in Houston, TX Tackles Pressing Public Health Issues

By: Brandon M. Macsata, CEO, ADAP Advocacy

ADAP Advocacy hosted its Health Fireside Chat retreat in Houston, Texas among key stakeholder groups to discuss pertinent public health issues facing patients in the United States. The Health Fireside Chat convened Thursday, June 13th through Saturday, June 15th. An analysis of the collaborative relationships between patient advocacy organizations and drug manufacturers (continued from the previous retreat), patient perspectives about reforming the 340B Drug Pricing Program, and the disproportionate impact HIV is having on Latinos living in the South were each evaluated and discussed by the 23 diverse stakeholders.

Photo Source: Getty Images

The Health Fireside Chat kicked-off with a stakeholders reception sponsored by the Alliance to Save America’s 340B Program (ASAP 340B), of which ADAP Advocacy is an active member. The retreat also featured three moderated white-board style discussion sessions on the following issues:

• Patient Advocacy & Industry: HIV State of the Union — moderated by Matt Toresco, CEO at Archo Advocacy LLC
• Congress Eyes 340B Reform: Why Comprehensive Solutions Outweigh Incremental Steps —moderated by Brandon M. Macsata, CEO, ADAP Advocacy & Jen Laws, President/CEO, Community Access National Network (CANN)
• Latinos in the South: An Invisible HIV Epidemic — moderated by Judith Montenegro, Program Director at Latinos in the South and Latino Commission on AIDS

The discussion sessions were 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:

• Grant Cale, Senior Director, Strategic Alliance Liaison, Bristol Myers Squibb
• De’Shea Coney, Vaccine Access and Equity Coordinator, Iowa Department of Health
• Tori Cooper, Director of Community Engagement, Human Rights Campaign Foundation
• Hunter Fasanaro, Director of Strategic Partnerships & Healthcare Initiatives, Archo Advocacy
• Ramon Gardenhire, VGR, ViiV Healthcare
• Rick Guasco, Editor-in-Chief, POSITIVELY AWARE
• Ashley John, Director, Issue Advocacy, Novartis
• Lisa Johnson-Lett, Peer Support Specialist, AIDS Alabama
• Marsha Jones, Executive Director, The Afiya Center
• Jax Kelly, President, Let's Kick ASS (AIDS Survivor Syndrome) Palm Springs
• Kamaria Laffrey, Co-Executive Director, The SERO Project
• Jen Laws, President & CEO, Community Access National Network
• Darnell Lewis, Patient Advocate
• Brandon M. Macsata, CEO, ADAP Advocacy
• Judith Montenegro, Program Director, Latino Commission on AIDS
• David Pable, Patient Advocate
• Frank Rosas, Consumer Vice-Chair HIV Medication Advisory Committee, Texas Department of Health
• Ranier Simons, Policy Consultant, Community Access National Network
• Matt Toresco, CEO at Archo Advocacy LLC
• Denise Tucker, Executive Director, State Policy, Merck
• Steven Vargas, Executive Committee Member, National HIV and Aging Advocacy Network
• Jennifer Vaughan, Patient Advocate
• Marcus Wilson, Senior Director, Community Engagement and Patient Advocacy, Gilead Sciences

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

Patient-Industry Collaboration:

The first policy session was Patient Advocacy & Industry: HIV State of the Union, which was led by Archo Advocacy LLC's CEO, Matt Toresco. Archo Advocacy seeks to build the foundation, strategy, and execution plans to drive the patient to the center of all decision-making. Matt presented a detailed summary of his recently-completed research, which is designed to bridge the gap between patient advocacy and the biotech and pharmaceutical industries. Key Insights from the “ELAVAY: Patient Insights. Elevated Healthcare.” included data, analysis, and anecdotes on what biotech and drug manufacturers are doing well, and where they can do better to support patient advocacy. His presentation offered a better understanding of the myriad of internal issues that often drive their decisions on what to support and what they cannot support. He noted that the leadership of biotech and drug manufacturers think in terms of quarterly and annual profits (as businesses), but advocacy doesn't operate on the same schedule.

According to Archo Advocacy's statement upon releasing the report: "These findings highlight significant areas where patient needs are evolving and provide actionable strategies for addressing these changes. We encourage you to reflect on these insights and consider how they can be integrated into your current and future strategies to meet patient expectations better and improve overall healthcare delivery. These findings are being shared with pharmaceutical, biotechnology, medical device companies, and even payers/PBMs so that they can adjust how they interact with your organization and bring patients into the dialog to maximize patient outcomes."

The research's findings yielded interesting dialogue on health equity and social determinant of health (SDOH), as this area serves as an extension of the typical programmatic support initiatives supported by the biotech and pharmaceutical industries. Some of the things advocacy is often seeking to influence is affordable housing, food insecurity, social/economic inequalities, social support networks, transportation, just to name a few. Matt also addressed some of the limitations, in part, brought about by the historical transactional relationships between industry and the nonprofit world, as well as restrictions placed on them by the federal government. He did also note an unintended consequence of the Inflation Reduction Act, namely it is causing more organizations to "reorganize" and reallocate budgets into areas that drive revenues.

The following materials were shared with retreat attendees:

• ELAVAY: Patient Insights. Elevated Healthcare.
• The ABCs of SDOH: Meaningful strategies to improve patient outcomes
• Mental health inequities resulting in billions in expenses, Deloitte finds
• Leadership of Patient Advocacy Organizations Tied to Pharma and Device Industry (Trigger Warning)
• Health Care Operations & Compliance, Professional Perspective - DOJ Pharmaceutical & Medical Device Enforcement Continues In Line With Recent Trends

ADAP Advocacy would like to publicly acknowledge and thank Matt for facilitating this important discussion.

340B:

For the discussion focused on reforming the 340B Program, Congress Eyes 340B Reform: Why Comprehensive Solutions Outweigh Incremental Steps, ADAP Advocacy (yours truly) was joined by Jen Laws, who serves as CANN's President/CEO. This co-facilitated discussion didn't hold back any punches on highlighting the ongoing abuses by hospitals, as well as some very large Ryan White Grantees. It also provided an opportunity to reveal a teaser to the forthcoming final report being issued by ADAP Advocacy's Ryan White Grantee 340B Advisory Committee on 340B Program Eligibility, Executive Compensation, and Charity Care.

The conversation weaved back-and-forth between the federal and state levels, with discussion around several pieces of legislation before the U.S. Congress, as well as state-driven initiatives. States lack the statutory authority to legislate the 340B Program, but that hasn't stopped state legislatures from diving into it. Arguably, most state legislators are ill-equipped to understand the nuances of this massive federal program and their actions are driving it toward insolvency.  

At the federal level, lawmakers are finally catching-up with the growing chorus of stakeholders pushing for reform — including the introduction of the bipartisan 'Supporting Underserved and Strengthening Transparency, Accountability, and Integrity Now' ("SUSTAIN 340B Act"), and the Republican-led '340B Affording Care for Communities & Ensuring a Strong Safety-net Act' ("ACCESS Act"). Another less notable piece of legislation introduced was the ‘340B Pharmaceutical Access To Invest in Essential, Needed Treatments & Support Act of 2024’ ("340B PATIENTS Act"). It was introduced by Rep. Doris Matsui (D-Calif.), a known drug industry antagonist and a favorite of the American Hospital Association. Despite the legislation's short title, it appears to be more concerned with providers than patients.

Photo Source: CANN

Jen reviewed high-level expected similarities between each proposal and some anticipated differences. Similarly, he touched on the direction of state actions regarding reporting requirements and the debate over contract pharmacies...though both ADAP Advocacy and CANN have argued that isn't where reform is most needed. Focused on addressing statutory vagueness, and the status of current litigation is "where the fight is", as Laws noted. There was a broader conversation on the ecosystem impacts of 340B, including consolidation concerns as they pertain to healthcare costs and patient access to care. Emphasizing the importance of both stabilizing the program and ensuring the program appropriately serves patient interests as opposed to other stakeholder groups like the Ryan White Clinics for 340B Access, which seems more driven by protecting provider coffers than helping patients. Specifically, Laws mentioned the need to address conflated interests: hospital administrators are not providers and provider voices are not a substitute for patient voices.

One important note was ADAP Advocacy's and CANN's calling for model language used for contract pharmacy arrangements as provided for under AIDS Drug Assistance Programs as a "gold standard" of the program directly serving its legislative intent - helping patients access life-saving medications.

The following materials were shared with retreat attendees:

• ASAP 340B Policy Principles
• Congress is Knocking on 340B's Door, Saying "Show Me the Money"
• House panel eyes reforms to 340B drug discount program

ADAP Advocacy would like to publicly acknowledge and thank Jen for co-facilitating this important discussion.

Latinos in the South:

Judith Montenegro, Program Director at Latinos in the South and Latino Commission on AIDS, concluded the retreat with a discussion reflective of the host city and state and how the HIV/AIDS epidemic is currently disproportionately impacting Latinos in the South. Latinos in the South: An Invisible HIV Epidemic started with an overview of realities Latinos living with and impacted by HIV in the South, often complicated by the ongoing anti-immigrant sentiments in the public discourse. 

The invisibility in healthcare access in Latine Southern Communities presents a significant barrier to accessing timely, appropriate care and treatment. For example, among Latinx patients diagnosed with HIV in Texas, approximately 25% received a late diagnosis. People living with HIV/AIDS diagnosed prior to 1996 make up about 10% of  Texas' current HIV prevalence; nationally, it's about 25%. 

Judith asked, "How can health care providers and policymakers develop and implement culturally competent strategies to engage Latinx communities, particularly in rural and migrant populations, in HIV prevention and treatment programs?"

That question yielded a passionate conversation about the very real challenges faced by Latinx communities in the South, including check-points, restricted access to federally-funded public health programs, vaccine hesitancy, lack of culturally-competent healthcare settings (hospital visitation policies, for example), and the inability to access healthcare information in Spanish. Whereas it was acknowledged there are very unique barriers faced by undocumented Latinx patients, it remains a crisis among all Latinx communities in the South. Judith acknowledged the purposeful invisibility and systems of fear perpetrated on Latinx communities, such as deportation, disclosure, criminalization, and public charge.

Now, Latinx communities are the target of political and public health misinformation. "Healthcare for Illegal Immigrants" is a political advertisement running in numerous media markets. The ad is financed by the right-wing group Building America's Future, which is the same group that ran the anti-immigrant ad the night of the 2024 State of the Union. The ongoing misinformation campaign claims the 340B Program is providing "free healthcare for illegal immigrants" and it is designed to make Republican voters angry about "those people" getting free stuff from taxpayers. Aside from the ad being factually inaccurate, it fuels the rising tide of anti-immigration, thus making it even harder to serve Latinos living with HIV.

The following materials were shared with retreat attendees: 

• Hispanic Equity Brief
• Southern Latinx LGBT Regional Assessment- pages: 8-31
• Figure 2
• Declaration of a State of Emergency
• Here’s what’s holding back Medicaid expansion in Mississippi and other Southern states
• Biden Harris Administration Finalizes Policies to increase access to Health Coverage for DACA Recipients
• Still in the Shadows: The Health Crisis of Hispanic/Latinx Communities Aging with HIV/AIDS
• The Invisible US Hispanic/Latino HIV Crisis: Addressing Gaps in the National Response
• Healthcare for Illegal Immigrants (Trigger Warning)
• 287g Program: An Overview
• Delegation of Immigration Authority Section 287g and Nationality Act
• 2022 Changes to the Public Charge Inadmissibility Rule and the Implications for Health Care

ADAP Advocacy would like to publicly acknowledge and thank Judith for facilitating this important discussion.

Additional Fireside Chats are planned for 2024 in New Haven (September), and New York City (December).

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.

The HIV Epidemic Has Not Ended

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

CNN, in collaboration with Gilead Sciences, has produced an inspiring docuseries reminding us that the HIV epidemic has not ended. Blind Angels is "a story of courage, family, and love," according to its producers. It highlights the disproportionate impact in the American South, through the lease of the "leaders working within their communities to fight for the access, education, and resources that will help end the epidemic."

Photo Source: CNN

Blind Angels features six episodes, each dissecting how HIV disproportionately affects already marginalized communities in the South. African Americans, Latino Americans, and transgender women are among the featured populations. 

EPISODE 1: Birmingham, Alabama

Tony Christon-Walker has been living with HIV since a time when treatment options were limited. But he survived. Now, he wants to ensure that the younger generation has access to the tools that can help them live longer, healthier lives.[1] Play Episode 1.

EPISODE 2: Durham, North Carolina

For Latino communities in the South, language barriers, immigration concerns, and other factors can create outsize risk for HIV. But in Durham, North Carolina, two friends are working to see that their community isn’t overlooked.[2] Play Episode 2.

EPISODE 3: Richmond, Virginia

For this activist, making change means wearing many hats. Whether she’s taking the testing to the streets in a custom RV or fighting for political change in city hall, Zakia McKensey never loses sight of her purpose.[3] Play Episode 3.

EPISODE 4: Atlanta, Georgia

Antoinette Jones was born with HIV in 1994. For years, she kept her status a secret. Then she met SisterLove founder Dázon Dixon Diallo, who recognized the devastating impact of HIV on Black women. Today, under Dázon’s mentorship, Antoinette has found her voice, and has joined a community of Black women empowering others to take control of their sexual health.[4] Play Episode 4.

EPISODE 5: Memphis, Tennessee

After facing homelessness, assault, and discrimination, Kayla Gore knows firsthand what it will take to change the startling statistics about HIV in the trans community. Today, in Memphis, she’s making that mission her own—and she’s doing it with a hammer and nails, one tiny house at a time.[5] Play Episode 5.

EPISODE 6: Mississippi

Episode six is not yet available, but it is coming soon!

It is estimated that over 1 million people living with HIV reside in the United States. Disproportionately, it has impacted the American South, but even more profoundly among marginalized communities. CNN's Blind Angels lifts the veil on health equity and the social determinants of health most relevant to providing HIV-related supports and services to these communities.

[1] CNN (2022), Blind Angels. 
[2] CNN (2022), Blind Angels.
[3] CNN (2022), Blind Angels.
[4] CNN (2022), Blind Angels.
[5] CNN (2022), Blind Angels.

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.

Better Together: A Collaborative Model to Address Health Equity

By: Alan Richardson, Executive Vice President of Strategic Patient Solutions, Patient Advocate Foundation

Since our inception 25 years ago, Patient Advocate Foundation (PAF) has been the voice for the voiceless, navigating the complex healthcare and insurance coverage systems to enable patients to gain access to life changing treatments. We have helped more than 1.7 million people access, and as importantly, afford the care needed to sustain life and, in many cases, improve quality of life. Our firsthand experience helping patients and their families remove the barriers keeping them from appropriate care or causing financial and practical hardships in their homes has been humbling and insightful. As an organization, we have witnessed firsthand the disproportionate long-term consequences of unaddressed social determinants of health and the social needs gaps caused by them. It is through this realization that PAF established longstanding commitment to develop programs based in demonstrated patient need and intentionally bring our programs and services to these communities in an effort to refortify the financial and social needs foundation on which many families found was crumbling beneath them. Patient Advocate Foundation’s focus on health equity is intentionally designed to address the intersectionality of health and the social, financial, and logistical challenges that impact one’s ability to access healthcare and adhere to treatment recommendations. In some communities across the country, left unaddressed, the impact of this intersectionality manifests in late-stage diagnosis, decreased quality of life and/or premature mortality.

PAF has had a long-standing goal of reaching all communities, not just those who are fortunate enough to have an education, employment, insurance, access to a healthcare system or supported by a system of family and friends who advocate for them. We have sought and continue to establish pipelines from limited resourced communities to the platform of free services and resources available through PAF, developing many programs over the years that have enabled us to bring services, education, and support to underserved communities, often partnering with community and national organizations to amplify impact.  

We want to further expand our reach into the communities that continue to experience healthcare inequities. Our goal is to expand the degree to which PAF programs and services effectively reach and serve diverse patients in a way that facilitates their opportunity to attain the highest level of health, produces data and patient stories that enable advocacy and policy activities to address social needs gaps. We realize that our work to solve insurance issues, access issues, and affordability of patient treatments across all disease areas represents only some of the needs patients and their families have. 

One of the programs currently providing services is our HIV, AIDS and Prevention CareLine which provides individualized, sustained assistance to patients diagnosed with HIV, AIDS or are currently being treated with a medication to prevent HIV infection. The CareLine Case Managers provide help to patients across the country to resolve health care access and insurance issues at no charge to the patient. The HIV, AIDS and Prevention CareLine can be accessed by phone at 844-737-6674 M-F from 8:30 a.m. to 5:00 p.m. EST or at hivoraids.careline.org

Through the PAF Co-Pay Relief (CPR) program, insured patients can apply for direct financial assistance to cover treatment related expenses connected to their HIV/AIDS treatment and may include insurance co-payments, co-insurance and deductibles, office visits and administration charges related to treatment and medical insurance premiums. CPR is available for any insurance type including Medicare and Medicaid. Patients are approved for a 12-month period and can reapply in future years in co-pay assistance is still necessary. CPR can be accessed by phone at 866-512-3861 and CPR fund details and application documents can be found at copays.org/diseases. 

Patient Partner for Equity

Despite reaching hundreds of thousands of people who are part of an underserved community, providing critical navigation and financial support to them that facilitated access to care and resolved daunting practical needs, we also know that there is still much work to do. Through our experience breaking down barriers to care and our understanding of the impact social determinants of health have on healthcare access and health outcomes; it is has become clear to us that the path to equity and access is through interconnectedness. Working together to connect these high-need patients who are often not connected to health and social services, with the resources they need to address medical and social needs is critical.  

The Patient Partners for Equity collaborative creates a one-to-one relationship between PAF and other nonprofit organizations for the purposes of connecting patients, specifically those from communities that are underserved and routinely experience health inequities, to PAF’s direct service programs and educational opportunities. This includes our case management navigation services, patient educational materials, our financial aid funds, and our Co-Pay Relief program. This bidirectional relationship allows organizations, and ours, the opportunity to close the gap of health inequities for some patients by connecting them to PAF case management, our financial assistance programs, and educational services, further enhancing the resources that your organization provides. Our intent is to provide organizations with the education and tools necessary to connect patients, families and caregivers to our patient support programs when appropriate, leveraging our services to amplify what you are able to do for those seeking your support. We believe that the path to achieving health equity is reliant upon the collective strengths that this type of partnership will afford. We need your help, and so do patients, their families, and caregivers. We have designed this collaborative with this as the motivating force.

Ready to be a Patient Partner for Equity?

Participation is simple. We ask for your commitment to participate through the completion of the Patient Partner for Equity profile form, allow us an opportunity to provide training to your team(s) about our patient support programs and agree to be included as a Patient Partners in Equity member on PAF’s websites. We have also created other touchpoints and opportunities to engage as you deem appropriate or possible for you and your organization.  

As a member of PAF’s Patient Partners for Equity program, your organization will receive the following benefits:

• Recognition of your organization as a Patient Partner in Equity on PAF’s websites including your logo, an organizational profile, and reciprocal links between our website and yours.
• Personalized education about PAF’s patient support and educational services delivered to your team(s) virtually in a live and recorded format.
• Regular partnership e-communications including the PAF Spotlight, NPAF Policy Dispatch Newsletter and other patient focused patient resources, public policy updates and events.
• Complimentary virtual membership for your organization to National Patient Advocate Foundation’s (NPAF) Policy Consortium. 
• Spotlight of your organization on PAF’s websites once per year
• Access to PAF’s Patient Partner Portal (Available 2022), a dedicated portal for nonprofit organizations to access PAF’s patient programs and educational resources in a centralized location.  This includes access to the PAF Case Management secure referral form, Financial Aid Fund application portals.  In addition, the portal will enable your organization to apply to our Co-Pay Relief Program (CPR) for financial assistance on behalf of patients who meet eligibility requirements, track activity of patient grants, assist with reapplications or submission of materials as needed and gather insights on how these grants impacted the lives of patients seeking your support.

As a member of PAF’s Patient Partners for Equity program, we request that you provide the following:

• A link to PAF’s websites, where appropriate (partner page, patient resource page or other content area)
• Allow PAF to provide training about PAF’s patient support programs annually to your staff working with patients, families, and caregivers 
• Participation in an annual survey or meeting to gain feedback on the program
• Provide a single point of contact for general partnership touchpoints

We appreciate your consideration of our invitation to participate in the Patient Partners in Equity program.  If you would like to be part of the Patient Partners for Equity collaborative, or if you would like to learn more, please contact Alan Richardson, EVP of Strategic Patient Solutions at alan.richardson@patientadvocate.org or 757-952-1372.

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.

Medicine Abandonment is a Barrier to Health Equity

By: Ranier Simons, ADAP Blog Guest Contributor

One of the most important developments in medical science is the evolution of pharmaceuticals. Prescription drugs are used to treat and cure disease, prevent disease, slow aging, govern family planning, and even enhance biomechanical functioning. The United States spends more on over-the-counter and prescription drugs than any other country. In 2020, the U.S. spent $348.4 billion on prescription drugs.[1] America's drug prices are 250% higher than 32 countries that are a part of the Organization for Economic Co-operation and Development known as the OECD.[2]

Researchers are increasingly focused on exploring the relationship between drug finance and care access. Inquiry shows that drug prices and the pathways in which patients pay for medications result in unequal access to care. Unequal access to care results in health inequities. Care disparity is the subject of a report recently published by the Pharmaceutical Research and Manufacturers of America, known as PhRMA. PhRMA is a non-profit advocacy group that lobbies on behalf of its member biopharmaceutical companies. It believes in advancing innovation, making medicines more affordable, and improving access for all. The report, entitled "Understanding Medicine Abandonment as a Barrier to Health Equity", uses real-world data to highlight health disparities.

Abandonment, in this report, is defined as when a patient does not fill a newly prescribed brand-name medication within 30 days of approval from their insurance. The report's 2020 IQVIA sourced data showed that African-Americans were disproportionately likely to abandon new prescriptions than their white counterparts. Additionally, the results indicated that people with lower incomes have a higher likelihood of medication abandonment than those with higher incomes.[3] Research has shown that regular adherence to medication regimens is almost more important than the medication itself.[5]

African-Americans were overall seven percent more apt to abandon new prescriptions. However, that percentage was higher regarding specific diseases. The rate increased to 20 percent for insulin usage, 31 percent for atypical antipsychotic drugs, and 41 percent for HIV Pre-Exposure Prophylaxis (PreP) usage.[3] Rates of abandonment, in regards to insurance cost-sharing, also followed the same trend among racial lines. African-Americans were 10 to 34 percent more likely to abandon medication when the out-of-pocket price was $125 or more after insurance than white patients.[3] Similar results were observed regarding income in the absence of race. Patients with commercial insurance who had an annual income of less than $50,000 were more likely to have medication abandonment than those making over $100,000. In general, those earning less than $50,000 were 16 percent more likely not to fill prescriptions than those annually earning $100,000 or more.

The report is an acceptable baseline of inquiry. However, it cannot prove direct causal relationships of inequality. The analysis compares differing rates of abandonment by race and income. It does not include the influence of confounding variables such as racism, health status, education, and social determinants of health.[3]

"Social determinants of health (SDOH) are the conditions in the environments where people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks."[4] It is vital to explore how these things influence health inequalities and contribute to medicine abandonment.

Photo Source: Healthy Mendocino

One important SDOH is culture. The study showed that African-Americans had a 31 percent higher likelihood of medicine abandonment regarding atypical antipsychotic drugs. In addition to the cost factor, there is documented stigma African-Americans associate with mental issues. One such study showed that 63 percent of African-Americans surveyed believed that mental health issues are a sign of personal weakness.[6] This sentiment would indicate that an African-American patient would likely not fill a needed mental health prescription even if they were fearless enough to seek help. 

Racism is another SDOH. Institutionalized racism in medicine contributes to a pervasive African-American distrust of doctors and medication.[7] Racial differences in medical care and inclusion or lack of inclusion in medical research are part of medical institutional racism. The Tuskegee Experiment, gynecology’s roots of torture in slavery, and the poor representation of African-Americans in clinical trials are just a few examples.

Outside of race, the issue of drug pricing is also not binary. The PhRMA report showed a correlation between the income of insured patients and the likelihood of medicine abandonment. However, price is complex. The way patients pay for medication is also a source of concern. Patients pay monthly premiums for their insurance that include differing drug coverages. However, in addition to their premiums, they must pay copays for their medications. Those copays are often part of a matrix, including high insurance deductibles. 

In an effort to help patients afford their medications, many drug manufacturers have copay assistance programs. These programs are supposed to pay for the patients’ copays to the insurance company to reduce the financial burden and increase adherence. However, copay accumulator programs presently are a challenge to those efforts.

The Hepatitis B Foundation defines copay accumulator as "a strategy used by insurance companies and Pharmacy Benefit Managers (PBMs) that stop manufacturer copay assistance coupons from counting towards two things: 1) the deductible and 2) the maximum out-of-pocket spending."[8] This results in patients paying even more for their medications, with the insurance companies paying less. This phenomenon is supported by the PhRMA report, which shows that medicine abandonment increases as the amount of out-of-pocket expenses to the patient increases.

The intersection of race, economics, healthcare finance, and SDOH is a complex web. PhRMA's report is a solid stepping stone on which to wade through the constantly moving stream of health equity reform discourse and change. The report is available online here.

[1] Centers for Medicare & Medicaid Services (2021, December 15). NHE Fact Sheet. Retrieved from https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/NationalHealthExpendData/NHE-Fact-Sheet#:~:text=Prescription%20drug%20spending%20increased%203.0,the%20households%20(26.1%20percent)
[2] Mulcahy, A. (2021, January 28). Prescription drug prices in the United States are 2.56 Times those in other countries. Retrieved from https://www.rand.org/news/press/2021/01/28.html
[3] Pharmaceutical Research and Manufacturers of America. (2022). Understanding Medicine Abandonment as a Barrier to Health Equity. Retrieved from  https://phrma.org/-/media/Project/PhRMA/PhRMA-Org/PhRMA-Org/PDF/S-U/Understanding-Medicine-Abandonment-as-a-Barrier-to-Health-Equity_2022.pdf
[4] Cherry, A. (2021, October 14). The social determinants of health: why they matter to improving health outcomes. Retrieved from https://maximus.com/article/social-determinants-health-why-they-matter-improving-health-outcomes
[5] DiMatteo MR, Giordani PJ, Lepper HS, et al. Patient adherence and medical treatment outcomes: a meta-analysis. Med Care. 2002;40(9):794-811
[6] Ward, E. C., Wiltshire, J. C., Detry, M. A., & Brown, R. L. (2013). African American men and women's attitude toward mental illness, perceptions of stigma, and preferred coping behaviors. Nursing Research, 62(3), 185–194. https://doi.org/10.1097/NNR.0b013e31827bf533
[7] Institute of Medicine (U.S.) Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care; Smedley BD, Stith AY, Nelson AR, editors. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington (D.C.): National Academies Press (U.S.); 2003. The Culture of Medicine and Racial, Ethnic and Class Disparities in Health Care. Retrieved from: https://www.ncbi.nlm.nih.gov/books/NBK220349/
[8] Hepatitis B Foundation. (2020, March 4). Copay accumulators – What they are and what they mean for your prescriptions. Retrieved from https://www.hepb.org/blog/copay-accumulators-mean-prescriptions/

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.