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.  

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 are 'Major Statements' for Direct-to-Consumer Pharmaceutical Advertisements

By: Ranier Simons, ADAP Blog Guest Contributor

In the United States, it is common to see advertisements for drugs. Ads appear in print magazines, on television, on the radio, on the internet, and mobile devices. In 2022, the pharmaceutical industry spent nearly $17.4 billion on advertising.[1] The majority of this spending is direct-to-consumer pharmaceutical advertisement (DTCPA) spending. Coincidentally, the United States and New Zealand are the only countries in the world allowing DTCPA. Other countries have banned DTCPA because they feel it does more harm than good. In addition to well-established prescription drug advertising regulations, the U.S. Food & Drug Administration (FDA) released a final rule in November of 2023, effective as of May 20, 2024.[2] Companies have until November 20, 2024, to come into full compliance. 

Photo Source: FDA

The new rule is specific to DTCPAs that are delivered in radio or television format, which name a drug and describe what it is used for. This rule focuses on the presentation of the ‘major statement’, which is the explanation of a drug's side effects and contraindications. There are five key standards the rule establishes. Major statements must be delivered in consumer-friendly language; audio information must be understandable; text must be presented clearly, conspicuously, and neutrally; text information must be readable; and ads cannot include distractions.

Requiring statements to be delivered in consumer-friendly language means that information regarding a drug's side effects and contraindications does not contain scientific and medical jargon. Most consumers must easily understand it. The rule’s requirements concerning the audio information are a direct response to the way ads used to appear and sound. Audio must be understandable in terms of volume, articulation, and pacing.[2] Previously, ads, whether on television or radio, would list a long line of side effects and concerns with a rapid cadence and sometimes in a less audible tone than the rest of the advertisement. This is because ads were required to list almost every possible side effect of a medication. The new rules now mean that only the major and most frequent side effects must be stated. They must be articulated in audio that is as clear as the remainder of the advertisement.[2]

With respect to text, the rule explains that textual information must be presented in an appropriate font, positioned in a visually advantageous manner, against an appropriately contrasting background, and appear for a proper duration of time.[2] Regarding distractions, the rule explains that ads cannot contain statements, text, images, or sounds that distract from the communication of the major statement of side effects and contraindications.[2] Most importantly, in terms of transparency, the contents of the major statement have to appear simultaneously in the audio and video portions of television ads, which is referred to as dual-modality.[2]

The new rule, in addition to the longstanding advertisement regulations, is meant to protect consumers and ensure they are not misled about what drugs can and cannot do. It also informs them about a medication’s risks. Many critics feel the new rules do not go far enough, primarily since they do not address the content of the information, only its presentation.

Photo Source: FDA

There are many pros and cons to DTCPA. Advertisements can educate patients about available treatment options, encourage people to seek care, especially regarding underdiagnosed conditions, and improve communication between doctors and patients. Moreover, when someone sees an ad for a drug they are already taking, it can be a reminder to take their medication as well as positively influence how they feel about the medication, which can increase adherence. Negative attributes of DTPCA are it can lead to overuse of some prescription drugs, which increases drug spending, can cause higher utilization of brand name drugs instead of effective lower-cost generics, and can negatively affect the patient-doctor relationship.[3] Consumers may see an advertisement for a drug and demand it from their physician. However, the physician may deny them a particular medication because the physician is knowledgeable of medical reasons why a drug may not be a good fit or actually be harmful. This could affect the trust and communication between a doctor and a patient.

A notable shift regarding DTCPA is regarding drugs to treat and prevent HIV/AIDS. Over the past few years, there has been a recognizable increase in the number of ART-related television, print, radio, and digital ads. In 2021, ads for ART accounted for six percent of total prescription drug ad spend. Gilead Sciences and GSK accounted for almost all of 2021’s pharmaceutical ad spending dedicated to HIV and AIDS.[4] For example, GSK spent all its 2021 Q4 advertising budget buying spots on ABC, A&E, CBS, CNN, Fox, NBC, and the USA network, which was 75% of what the company spent on television ads that year.[4]

ViiV Healthcare, which is majority-owned by GSK, with Pfizer Inc. and Shionogi & Co. Limited (Shionogi) as shareholders, has had a recognizable presence in television ads since 2017. In 2017, one of its first significant television campaigns was for Triumeq.[5] In 2022, ViiV spent $8.3 million in June alone, on television ads for Dovato. Advertisements for HIV-related drugs on television, in print ads, and digital forms are potentially not just beneficial for drug companies’ bottom lines.[6]

Photo Source: Trend Radars

Antiretroviral drug ads are educational in informing patients of drug options. The science behind treatment for HIV/AIDS is moving at a rapid pace, and many are not aware of all the treatment options available. Advertisements can empower HIV/AIDS patients to have discussions about treatment modalities their doctors may not have presented to them. Additionally, antiretroviral drug campaigns are a kind of social engineering. There are still negative perceptions and public stigma surrounding HIV despite scientific knowledge supporting the concept of undetectable viral load translating into a lack of risk of transmission, or “U=U undetectable = untransmittable.”[6] Many television ads depict subjects who are actual users of the antiretroviral medications, publicly revealing their status. This can add humanity to a disease that remains cloaked in stereotypes and misinformation for many.

Whether in a magazine, a television commercial, a print ad, a YouTube video, or a digital mobile pop-up, pharmaceutical advertisements in the United States are here to stay. There are valid pros and cons. The only way to ensure that the pros outweigh the cons is to monitor and regulate intentionally. Difficulties in the logistics of enforcing governmental regulations can mean slow adoption of and even violation of rules. Optimistically, the efforts of consumers, advocates, and medical professionals can facilitate acceptable and effective pharmaceutical advertisement utilization and execution.

[1] Faria, J. (2023, September 22). U.S. pharmaceutical preparations ad spend 2021-2022. Retrieved from https://www.statista.com/statistics/470460/pharmaceutical-preparations-industry-ad-spend-usa/#:~:text=In%20a%20survey%20of%20representatives,billion%20U.S.%20dollars%20on%20advertising.

[2] FDA. (2023, November 21). Direct-to-Consumer Prescription Drug Advertisements: Presentation of the Major Statement in a Clear, Conspicuous, and Neutral Manner in Advertisements in Television and Radio Format. Retrieved from https://www.federalregister.gov/documents/2023/11/21/2023-25428/direct-to-consumer-prescription-drug-advertisements-presentation-of-the-major-statement-in-a-clear

[3] Keller, J., Hauschild, J. (2024, January 10). FDA Issues Final Rule and FAQ Regarding Direct-to-Consumer Drug Advertising. Retrieved fromhttps://www.faegredrinker.com/en/insights/publications/2024/1/fda-issues-final-rule-and-faq-regarding-direct-to-consumer-drug-advertising

[4] Media Radar. (2022, May3). HIV/AIDS Prescription Drug Advertising: Looking Toward the Future. Retrieved from https://mediaradar.com/blog/hiv-aids-prescription-drug-advertising/

[5] Bulik, B. (2017, December 4). ViiV starts 'Moving Forward' into first branded TV ads for HIV treatment. Retrieved from https://www.fiercepharma.com/marketing/viiv-s-first-branded-hiv-tv-ad-stars-real-patients-and-their-stories

[6] Adams, B. (2022, July 11). ViiV wants HIV patients to 'detect this' as it launches new Dovato TV ad. Retrieved from https://www.fiercepharma.com/marketing/viiv-wants-hiv-patients-detect-it-launches-new-dovato-tv-ad

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.  

Perspectives on SYNC’ing

By: Ranier Simons, ADAP Blog Guest Contributor

Synchronicity 2024, referred to as SYNC 2024, was held last week in Arlington, Virigina May 29th to May 31st. It is a national conference for HIV, HCV, STIs, Harm Reduction, LGBTQ Health, and Health Equity. This is the tenth year this unique conference has been held, bringing together a diverse audience of participants. SYNC is one of few spaces where clinicians, state and local health department directors, students, researchers, social workers, community activists, patient advocates, policymakers, and even D.C. government officials are all under the same roof with access to each other. The value of creating such a space is the reason companies like Gilead Sciences, ViiV Healthcare, and Merck are sponsors. I was asked to share my personal perspectives in this week’s blog, as my attendance represented my first time SYNC’ing.

Photo Source: HealthHIV

According to the SYNC 2024 event website the SYNC 2024 theme, “Bringing SYNChronicity to Life: SYNCing the Elements of Life with Health,” reflects aligning the fundamental elements of life — earth, water, air, and fire — with the sphere of HIV, HCV, STIs, Harm Reduction, and LGBTQ health, according to the event website. Its objective was elevating health and harmony, and now I better understand why ADAP Advocacy's CEO, Brandon M. Macsata, advised me that this event was the best national conference for advocates living with HIV/AIDS.

My two primary activities at SYNC were to present data associated with the 9th National Annual Monitoring Report on HIV/HCV Co-Infection and help facilitate a panel discussion regarding Prescription Drug Advisory Boards (PDABs). Both were indelible experiences. I presented data for the National Annual Monitoring Report on behalf of Community Access National Network (CANN) in collaboration with HealthHIV. The presentation informed the audience about current issues surrounding HIV, HCV, and Harm Reduction. The collaboration resulted in an empowering and complimentary dissemination of a great deal of valuable data that was well received by the audience. The PDAB discussion was eye-opening in how a prepared slide presentation by a panel evolves into organic discussions among the panelists and audience, which adds even more value.

The wealth of opportunities for learning, networking, and inspiration at SYNC was almost overwhelming, but in a good way. The first day was filled with very focused institutes of different subjects, some of which even offered opportunities to achieve or renew certifications in things such as PrEP Navigation. The institutes covered critical problems such as HIV Criminalization, Healthy Aging, and Black Women in HIV Prevention. The Annual Monitoring Report, where I presented data, was one of those institutes. 

The remaining days were filled with extensive plenary sessions where all the participants met to learn from experts and even members of government agencies on topics such as the state of government agencies' activities surrounding healthcare delivery, health equity, syndemics, and advocacy. Outside of the large plenary sessions were many different track sessions. Upon choosing your track of interest, you could attend multiple learning sessions on various topics associated with the track. 

Photo Source: HealthHIV

For example, there was an STI track. I attended session One of that track, which included presentations on black women’s sexuality and PrEP, the severe crisis of STIs like syphilis, the importance of rapid point of care (POC) testing and educating providers about effective HIV and STI testing. The speakers in that session included the Vice President of Clinical Operations at Adagio Health and the HIV Clinical Director for Baltimore Medical System, Inc. It was amazing to experience exposure to the perspectives from such varied backgrounds, all in the same room. Most importantly, I feel that they usually would all not be exposed to each other. Not only was it an unmatchable opportunity for learning for the audience, but it was an opportunity for collaboration and learning between their institutions.

Another track session I attended was a part of the LGBTQ Health Track. I decided to participate in that track session as an opportunity to be exposed to subject matter outside of usual knowledge consumption. I frequently read and research topics involving HIV treatments, prevention, and social determinants of health issues. However, I don’t often explore LGBTQ-specific health issues that are unique from the general population. The panels in this session discussed the utilization of social media to reach young men of color for HIV prevention, advocacy for transgender healthcare, and the unique lived experience of Black men who have sex with men (MSMs). 

This session was very enlightening. Until then, I was not aware of the actual number of legislative bills and other efforts nationally being put forth that are directly anti-trans. I had also never heard of GLMA. GLAM was formerly known as the Gay and Lesbian Medical Association but is now identified as GLMA: Health Professionals Advancing LGBTQ+ Equality. GLMA presented the anti-trans legislation discussion. It was equally fascinating to learn of community health groups' investments in using social media apps such as Grindr to engage in HIV prevention and education. Notably, at the end of that session, local community groups were educating panelists on ways they could be more effective in their outreach and vice-versa.

Regrettably, I did not end up spending much time perusing the poster presentations that were present. Yet, I still learned a great deal, and the lens through which I view many issues has been widened. One of the most vital themes that encompassed the entire conference is the necessity of health equity and the importance of inclusive representation in health policy as well as in medical treatment and intervention. SYNC is undoubtedly a conference full of meaning and value.

Photo Source: HealthHIV

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.