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.

What Happens When Homelessness, Politics, and HIV Collide?

By: Ranier Simons, ADAP Blog Guest Contributor

It is a futile waste of time and resources to try to improve the quality of life and standards of living for communities without examining social determinants of health. Social determinants of health (SDOH) are "individuals' personal circumstances that impact their health and well-being."[1] SDOH's five main domains are economic stability, education access and quality, healthcare access and quality, neighborhood and built environments, and social and community context.[2] The health and well-being of populations suffer greatly when SDOH are not adequately met. The devastating effects of the confluence of homelessness, drug addiction, and mental health issues currently is becoming increasingly visible all across the United States. Currently, West Virginia is confronting an avoidable community-level disaster.

Photo Source: Kaiser Family Foundation

Images of the plight of the impoverished living amidst urban sprawl are familiar. Unfortunately, there is also increasing amounts of suffering going under the radar in small cities and towns. One such town is Charleston, West Virginia. In Charleston, politics, homelessness, mental illness, and preventable infectious diseases, including HIV, swirl in a blender resulting in a smoothie of despair. People with grassroots first-hand knowledge of the plight of West Virginians are trying to shed light on their struggle. Marcus J. Hopkins, Founder & Executive Director of the Appalachian Learning Initiative (APPLI), is one such person. According to Mr. Hopkins, "The issues that plague West Virginia's population are not something that can be easily, efficiently, or quickly addressed."

"One of the unfortunate truths of life in West Virginia is that we are constantly trying not to correct, but to overcome—to survive—generations of economic decline, an education system that has been perennially underfunded and underperforming, a healthcare system that barely functions and only in a handful of cities in the state, a crumbling infrastructure, and communities that have been ravaged by nearly 30 years of prescription and illicit opioid use disorders in every part of the state. The state and federal governments have been virtually useless in addressing these issues, which results in grassroots organizations doing whatever they have to do in order to try to just keep people alive, only to have their actions criminalized by the very governments that are supposed to be helping."

Charleston has an unhoused population plagued by drug addiction, mental illness, and HIV. There is an abidance of evidence showing harm reduction is a proven solution to the poorly met SDOH of this population. However, politics have gotten in the way. According to the Substance Abuse and Mental Health Services Administration (SAMHSA), "Harm reduction plays a significant role in preventing drug-related deaths and offering access to healthcare, social services, and treatment. This results in a reduction of overdose fatalities, acute life-threatening infections related to unsterile drug injection, and chronic diseases such as HIV/HCV."[3] 

The unhoused population in Charleston struggles with finding safe shelter, food, and even places to bathe or wash clothing. People have lived under bridges, uncovered on the streets ,and in unofficial tent camps in public spaces. Soup kitchens and places like the Manna Meal lunchroom are places where the unhoused and other poor citizens go to find sustenance. However, not having stable housing and food insecurity are exacerbated by drug addiction and HIV.[4]

Politics has shuttered places that used to be havens of clean needle exchanges for those addicted to intravenous drugs like heroin and other opioids. A nonprofit called SOAR ran a clean needle exchange on Charleston's west side until it was outlawed last summer.[4] Before that, the city of Charleston ended its own needle exchange in 2018. Without clean needle exchanges, people reuse and even share needles. This results in the spread of hepatitis, heart inflammation, and endocarditis (infection of the heart's inner lining). The U.S. Centers for Disease Control & Prevention (CDC) found that needle exchanges cut the rates of these diseases by half.[4] Treating hepatitis C in Charleston costs $25,0000 per person, while a new needle costs 50 cents.[4]

Sharing needles also contributes to the spread of HIV. The West Virginia public health bureau reports that since 2019 there have been 137 HIV cases diagnosed in Kanawha County, where Charleston is located,[4] and 76.6% of the cases in Kanawha County were directly related to injection drug use.[5] In 2020, 207 people died from overdoses in Kanawha County, which is one of the highest death rates in the state, while West Virginia, as a whole, has the highest overdose death rate in the United States.[4]

Photo Source: GETTY IMAGES

Politics also is a barrier to helping the homeless. There is political pressure to criminalize being homeless on the street. Police destroy the tents and shelters that many of the unhoused have built, in addition to disposing of their meager belongings. Recommendations for creating places like drop-in shelters for the homeless are usually met with opposition from business owners and other people who want the homeless to be swept out. They do not want to see them sleeping on park benches or the door stoops of their businesses. Other people do not want the visual reminder of the homeless’ existence and plight. 

People living with medical conditions, possibly mental illness, drug addiction, and no stable social network cannot be expected to thrive when trying to manage all of those things, in addition to being homeless. Proper harm reduction requires robust funding and programmatic infrastructure. It is necessary to help people get off of the streets and then help them maintain stability to stay off.

[1] Zia, S. (2021, April 28). What are social determinants of health? Retrieved from https://www.medicalnewstoday.com/articles/social-determinants-of-health
[2] U.S. Department of Health and Human Services.(2022). Social Determinants of Health. Retrieved from https://health.gov/healthypeople/priority-areas/social-determinants-health
[3] Substance Abuse and Mental Health Services Administration.(2022). Harm Reduction. Retrieved from https://www.samhsa.gov/find-help/harm-reduction#:~:text=Harm%20reduction%20plays%20a%20significant,diseases%20such%20as%20HIV%2FHCV
[4] Vergano, D. (2022, April 22). Here’s how homelessness and politics meet amid an HIV outbreak in one U.S .city. Retrieved from https://www.yahoo.com/entertainment/hiv-homelessness-politics-colliding-west-183301994.html?soc_src=social-sh&soc_trk=tw&tsrc=twtr
[5] Office of Epidemiology and Prevention Services. (2022, April 21). HIV Diagnoses by County, West Virginia, 2019-2022. Charleston, WV: West Virginia Department of Health and Human Resources: Office of Epidemiology and Prevention Services: HIV and AIDS. Retrieved from: https://oeps.wv.gov/hiv-aids/Documents/Data/WV_HIV_2019-2022.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.