Putting Politics Ahead of Public Health is Spelling Trouble for Tennessee

By: Ranier Simons, ADAP Blog Guest Contributor

In 2023, Tennessee Governor Bill Lee, rejected nine million dollars in federal HIV funding from the Centers for Disease Control & Prevention (CDC). This meant that the pass-through grant contracts associated with the Integrated HIV Programs for Health Departments to Support Ending the Epidemic in the United States CDC-RFA-PS20-2010 grant and the Tennessee Integrated HIV Surveillance and Prevention Programs for Health Departments CDC-RFA-PS18-1802 grant ended in May of 2023.[1] The decision meant a significant cut in funding for HIV prevention, education, and treatment for public health centers and many community-based organizations. The adverse effects of the decision are materializing, and experts continue to sound the alarm about how devastating the outcomes will impact the state.

Photo Source: The Tennessee Conservative

The governor stated he refused the funds to decrease dependence on federal funds and be more independent as a state. He also expressed that the move was to make it easier for organizations and public health departments to access funding without having to deal with bureaucratic red tape.[2] However, analysis shows that the decision was politically motivated. Lee is on public record expressing disapproval of two organizations that were HIV grant recipients, Planned Parenthood and a task force on transgender health issues.[3] Refusing CDC funding means that the state is no longer required to distribute funding based on science, evidence-based data, and research. The goal of the state was to replace the CDC funds with state funding.

In response to Tennessee’s refusal of funding, the CDC decided to try and circumvent the legislature. It decided to directly provide four million dollars in funding to United Way of Greater Nashville.[4] This would allow United Way to distribute funds to nonprofit organizations, such as Planned Parenthood, to continue their HIV prevention efforts. However, four million dollars is only half of the nine million dollars refused.

When the state government replaced the lost CDC funding with state funding, it was mainly local health departments that were guaranteed funding to make up for the cuts.[4] This meant the state health departments could make decisions concerning funding distribution that did not require alignment with CDC requirements. This was eventually followed by an announcement to reallocate funding away from the most at-risk priority communities, such as men who have sex with men, to new groups. The new groups are first responders, pregnant women, and survivors of sex trafficking. Studies are showing that this will result in unnecessary deaths and poor health outcomes because this group is not where the need resides.

Photo Source: Clinical Infectious Diseases

A study published in July of this year in the journal Clinical Infectious Diseases spells out the negative ramifications of Tennessee’s state resource allocation. Men who have sex with men, transgender women, and heterosexual Black women are the evidenced-based identified priority demographic most affected by HIV in Tennessee.[5] The study projected conservative estimates the Tennessee decision would mean 166 preventable HIV transmissions, 190 additional deaths, and 843 life-years lost over 10 years. The study’s more pessimistic or worst-case scenario projections were 1359 preventable HIV transmissions, 712 additional deaths, and 2,778 life-years lost over 10 years.[5] 

Comparatively, this means the reallocation in funding would be prohibitively damaging to the original priority group with negligible benefit for the new priority pivot. “Under Reallocation, MSM would comprise most of the HIV transmissions (77%), followed by TGW (8.6%) and HSBW (6.8%). First responders would contribute 0.5%, pregnant people 0.2%, and SST 6.9% to the total HIV transmissions over 10 years.”[5] The newly suggested priority populations only comprise %1 of all Tennesseans living with HIV compared to the CDC-defined priority populations, which comprise %99 percent.[6]

Funding losses have already begun to negatively affect agencies serving vulnerable populations. Before the change, CDC grant money provided stability for HIV programming for five years at a time. The new state-provided funds happen on a one-year cycle. The one-year budget rides on the auspices of the state legislature, which votes on it each year.[7] Reduced funding means loss of staff for many organizations. According to Amna Osman, CEO of Nashville CARES, “There’s no sustainable grant funding to support these positions…Employees really want some stability.”[7]

Moreover, the new funding plan routes money mainly to metro state health departments and groups associated with them. This translates into a drastic cut to resources for those in rural areas in addition to groups who, under the new reallocation priorities, would not be able to garner funding from the state. 

Photo Source: The New York Times

The motivation behind the original CDC funding was to concentrate efforts on HIV prevention, education, and treatment for those most in need in Tennessee. Prevention requires testing, surveillance, access to PrEP, and more. Before the funding reallocation, a third of those most in need of PrEP did not know where they could access it. Now, issues of access have worsened. Osman states she has heard from community members who say, “Well, I’m hearing there’s no dollars for prevention education for HIV. Then, that means ‘I think there’s no money for me to get a service,”[7] Memphis, Tennessee is second in the nation regarding the rate of new HIV cases. Over 7,500 people in Shelby County alone are living with HIV or AIDS.[8] That number is second only to Miami, Florida.[8]

HIV prevention and testing is not just about HIV. Testing involves STI testing. STI testing benefits the entire community as a public health safeguard as well as a tool in the fight to prevent HIV transmission. People living with HIV do not live in a vacuum, nor do those living with STIs. Effectively focusing funding and infrastructure on the populations that science and health professionals have identified as significantly at risk is the only way to reverse the tide in all of Tennessee’s communities. Only time will tell if voting and continued public and professional outcry, in combination with pressure from the medical community, will result in the legislature changing its course.

[1] Talley, P. (2023, January 17). Dear Colleagues Letter. Retrieved from https://wpln.org/wp-content/uploads/sites/7/2023/01/Notification-HIV-Funding-Changes.pdf

[2] Stillman, J. (2023, April 22). Tennessee Rejected HIV Funds From Feds, But The State Was Just Outsmarted. Retrieved from https://www.hivplusmag.com/politics/tennessee-rejected-hiv-funds-from-feds-but-the-state-was-just-outsmarted

[3] Cha, A., Nirallil, F. (2023, Januery 26). HIV at center of latest culture war after Tennessee rejects federal funds. Retrieved from https://www.washingtonpost.com/health/2023/01/26/tennessee-federal-hiv-funding/

[4] Watts, M. (2023, April 17). Federal HIV funding rerouted to nonprofits, bypasses Tennessee health department entirely. Retrieved from https://www.tennessean.com/story/news/local/2023/04/17/hiv-federal-funds-will-reroute-to-tennessee-nonprofits-state-cut-out/70116510007/

[5] Borre, E. D., Ahonkhai, A. A., Chi, K. K., Osman, A., Thayer, K., Person, A. K., Weddle, A., Flanagan, C. F., Pettit, A. C., Closs, D., Cotton, M., Agwu, A. L., Cespedes, M. S., Ciaranello, A. L., Gonsalves, G., Hyle, E. P., Paltiel, A. D., Freedberg, K. A., & Neilan, A. M. (2024). Projecting the potential clinical and economic impact of human immunodeficiency virus prevention resource reallocation in Tennessee. Clinical Infectious Diseases. https://doi.org/10.1093/cid/ciae243

[6] Ridings, M. (2024, July 11). Study Finds That Tennessee’s Shift in HIV Prevention Funding Will Lead to Poorer Health Outcomes for its Residents. Retrieved from https://www.massgeneral.org/news/press-release/tennessee-shift-in-hiv-policy-will-lead-to-poorer-outcomes

[7] Sweeney, C. (2024, October 22). Tennessee replaced its federal HIV funding with state money. Public health experts say the change is causing damage. Retrieved from https://www.wkms.org/health/2024-10-22/tennessee-replaced-its-federal-hiv-funding-with-state-money-public-health-experts-say-the-change-is-causing-damage

[8] Paul, A. (2024, August 13). Memphis ranks second in the nation in highest number of new HIV cases. Retrieved from https://wreg.com/news/memphis-ranks-second-in-the-nation-in-highest-number-of-new-hiv-cases/l

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. 

Americans with Disabilities Act Negates Tennessee HIV Criminalization Statute

By: Ranier Simons, ADAP Blog Guest Contributor

Christmas has come early in Tennessee. December 2023 began with a victory in the fight against HIV criminalization in the Volunteer State. As a result of complaints filed by the Center for HIV Law and Policy (CHLP), the U.S. Department of Justice found that Tennessee’s enforcement of its aggravated prostitution statute violates the Americans with Disabilities Act (ADA) by specifically targeting people living with HIV (PLWHA). CHLP hailed the decision, "CHLP Made the Call and the DOJ Answered."

According to the Centers for Disease Control & Prevention (CDC), 35 states currently have laws that criminalize HIV exposure, which fall into several categories. They are either HIV-specific laws regarding actions that can potentially result in HIV exposure, sexually transmitted disease (STD) or communicable disease exposure laws that could include HIV, general criminal statutes that could be used to define actions that could possibly cause HIV or STD exposure, or laws that enhance sentences for certain crimes when committed by PLWHA.[1] Tennessee’s aggravated prostitution statute falls into the sentence enhancement category.

Tennessee enacted its aggravated prostitution statute in 1991. Prostitution in the state, in general, is only a misdemeanor crime. However, the aggravated prostitution statute converts it to a Class C Felony if the person convicted is HIV positive. Conviction of a Class C felony means the possibility of imprisonment from three to fifteen years and up to a $10,000 fine.[2] Conviction of prostitution by someone without HIV is only a Class B misdemeanor, which could result in up to only six months in jail and up to a $500 fine.[2] Additionally, aggravated prostitution convictions require registering with the Tennessee Bureau of Investigations as a sex offender. 

To add insult to injury, in 2010, aggravated prostitution was reclassified as a violent sexual offense. This means that those convicted must stay on the sexual offender registry (SOR) for life. Previously, they were able to petition to be removed after ten years.[2] Moreover, an aggravated prostitution conviction makes one ineligible for judicial diversion. Judicial diversion is when first-time offenders are allowed to enter what equates to a conditional guilty plea. If they plead guilty and fulfill the conditions of a court-defined special probation period, their charges are dismissed, and their records are expunged.[2]

The Americans with Disabilities Act defines HIV/AIDS as a disability because it can significantly hinder life activities. PLWHA are protected whether they are symptomatic or not, and those protection were reaffirmed in Bragdon v. Abbott, 524 U.S. 624 (1998). Protection under the ADA means guaranteed “equal opportunity for individuals with disabilities in public accommodations, employment, transportation, State and local government services, and telecommunications…also protects persons who are discriminated against because they have a record of or are regarded as having HIV, or they have a known association or relationship with an individual who has HIV”.[3] All of those guarantees are denied to those convicted under the aggravated prostitution statute, which subjects those convicted to undue hardship in many aspects of their lives.

Photo Source: POZ Magazine

Being on the sexual offender registry significantly affects where people can live, work, or be present in public. You may not work or live within 1,000 feet of any school, childcare facility, public park, or playground.[2] Simply being on the premises of these areas is also prohibited unless you have an express reason for being there, such as being the parent of a child at a specific place. An individual on the SOR cannot take their child to a public park to play. However, they can retrieve their child from school only if they give written notice to the school in advance that they are a registered sex offender.[2] The SOR denies people the ability to spend time with children in their families. One example is a grandparent who is on the SOR and cannot spend time alone or babysit their grandchild because they are prohibited from being alone with minors.

A lifetime registry on the SOR facilitates long-term discrimination and even homelessness. Landlords run background checks and frequently won't rent to anyone on the SOR. Once on the SOR, a person’s personal information becomes publicly available. The publicly searchable Tennessee Bureau of Investigations (TBI) SOR website lists all sorts of data such as photos, ages, names, addresses, parole information, school and work addresses, unrelated criminal history, and more. Furthermore, the website enables visitors to click on the statutes for which one has been convicted. Thus, seeing that someone is convicted under the aggravated prostitution statute means public exposure of their HIV status. This leaves a person vulnerable to hate crimes, housing and employment discrimination, and mental stress from living with their life on display.

The DOJ investigation revealed that Shelby County in Tennessee had the highest enforcement rate of the aggravated prostitution statute. In 2022, Shelby County was the residence of 74% of people on the SOR for aggravated prostitution while housing only 13% of the state’s population.[2] Also, over 90% of those aggravated prostitution arrests were Black, with a large number being Black women, both cisgender and transgender.[2] The SOR further oppresses marginalized individuals financially. Many of those convicted are low-income, making the annual $150 mandatory fee for being listed on the SOR a hardship. Additionally, being on the SOR requires reporting in person four times a year to update registration.[2] Failure to do so results in a violation, which could result in jail time.

DOJ detailed multiple legal remedies to the ADA violations to both the state government and specifically the Shelby County District Attorney General’s Office (SCDAG). The list for the SCDAG includes stopping the enforcement of the statute, including probation violations related to violations of SOR reporting requirements, creating a protocol for vacating aggravated prostitution convictions, and educating all SCDAG attorneys about HIV and the nondiscrimination requirements of Title II of the ADA.[2] 

Photo Source: CDC

For the state, DOJ’s recommendations include ceasing the enforcement of the statute, using the TBI to remove people on the SOR who are there solely due to aggravated prostitution convictions, expunging all state records showing that those with aggravated prostitution convictions were ever on the SOR, and paying compensatory damages (SOR fees, court costs and fines, bonds, etc.) to those who were victims of the statute.[2,5] One very notable recommendation to the state is to notify all those who have been removed from the SOR and whose references to their convictions have been removed.[2] Not only is it legally empowering to have documentation in hand, but it is also mentally empowering to have confirmation of reclaiming control over one’s life.

The aggravated prostitution law is predatory to vulnerable populations and is not based on science, according to our government's highest law enforcement institution. It is draconian, according to advocates. Since 1991, advances in antiretroviral therapy have come a long way and it has opened the door to "treatment as prevention" (TasP) and "undetectable equals untransmittable" (U=U). Laws need to reflect these advances.

S. Mandisa Moore-O’Neal, CHLP Executive Director, states, “The implications of the DOJ’s findings are far-reaching. This not only puts the state of Tennessee on notice that this is a serious issue, but it also serves as notice to other states with similar HIV criminal statutes.”[4] Regarding the future continuation of the fight against HIV criminalization, she also says, “This is also an opportunity for other state coalitions organizing and educating around HIV criminalization to leverage these findings with lawmakers. When many state budgets are already tight, the possibility of new and often costly litigation may be the impetus to change these laws.”[4]

Jen Laws, President & CEO of the Community Access National Network applauded the decision, "This is an excellent development in implementing the ADA and affording protections to people living with HIV. We owe a debt of gratitude to our friends at CHLP for exploring this legal argument. DOJ's Civil Rights Division has room to expand on this work in other areas affecting people living with HIV and the legal system. From enforcement of medication access for incarcerated and jailed persons to enforcement of these same protections in family courts, our people face discrimination when interacting with our legal system and that needs to change."

In today’s political climate, many lawmakers either do not care about the adverse effects flawed laws have on marginalized communities or feel the consequences of the laws are somehow deserved due to their personal ideologies. Challenging the aggravated prostitution law by showing how it violates the ADA is a perfect example and blueprint of how to fight legalized oppression by using legal statutes that cannot be ignored. When one cannot change the system, it’s empowering to find ways to use the existing system to one’s advantage. Chalk-up a big win for CHLP...and PLWHA in Tennessee.

[1] Health Resources and Services Administration. (2023, September). Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Dat1) Centers for Disease Control. (2023). HIV and STD Criminalization Laws. Retrieved from https://www.cdc.gov/hiv/policies/law/states/exposure.html#:~:text=As%20of%202022%2C%2035%20states,categorized%20them%20into%20four%20categories.

[2] U.S. Department of Justice Civil Rights Division. (2023, December 1). The United States’ Findings and Conclusions Based on its Investigation of the State of Tennessee and the Shelby County District Attorney General’s Office under Title II of the Americans with Disabilities Act, DJ No. 204-70-85. Retrieved from https://www.justice.gov/d9/2023-12/2023.11.30_tn_hiv_lof_final.pdf

[3] U.S. Department of Justice Civil Rights Division. (2023). Protecting the rights of persons living with HIV/AIDS. Retrieved from https://archive.ada.gov/hiv/ada_hiv_brochure.html

[4] Center for HIV Law and Policy. (2023, December 1). News Release: CHLP Made the call and the DOJ answered. Retrieved from https://www.hivlawandpolicy.org/news/news-release-chlp-made-call-and-doj-answered

[5] Kruesi, K. (2023, December 1). Tennessee’s penalties for HIV-positive people are discriminatory, Justice Department says. Retrieved from https://apnews.com/article/justice-department-hiv-tennessee-6cda4a9170dfbe46bd8d8f6af91f76cd

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.

Reflections from an HIV Advocate's Journey: Brady Etzkorn-Morris

By: Brady Etzkorn-Morris, Executive Assistant of Global Operations, Prevention Access Campaign

I couldn’t have been more excited when I moved to Nashville in the early spring of 2008. I had just turned 32 and had taken a corporate office job. My career path was falling into place and I felt as if I was finally getting a grasp on “adulting”. However, in July of that same year, my new primary care doctor walked into the room and informed me I had AIDS. Everything around me began to crumble and finding my footing seemed impossible. To help numb the shame and internal pain that came with my diagnosis, I turned to alcohol and methamphetamine which also led to numerous suicide attempts. Thankfully, I had family and friends that came to my rescue and they helped pull me from that dark place.

Having existed in that dark place for so long was one of the biggest reasons I decided to become public about my diagnosis. I realized that while that part of my own story had been written, I could help others to not let their stories sound similar to mine. I became a member of the Nashville Regional HIV Planning Council, Mr. Friendly Tennessee, and various other organizations where I could use my own life experience to create change and to help influence HIV policy on a local level.

Then in 2016, I learned about U=U (Undetectable = Untransmittable), which was the last tool I needed to shed the internalized HIV stigma I had carried since the day of my diagnosis. I was able to use my experiences to influence the Nashville Metro Public Health Department to adopt a resolution supporting the science behind U=U. A U=U Task Force was also formed under the umbrella of our EHE efforts and we became one of the few cities across the country with a local U=U Ambassador program.

When I reflect back on my past 15 years of living with HIV, I now see that so many of the things that I was afraid of happening, never materialized, and HIV gave me so much more than it ever took away from my life; the people I have met along my journey, the love I have received from the HIV community, and my current position working for Prevention Access Campaign has shaped who I am today; and I’m happy to say I truly love this version of myself.

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 Nashville, TN Tackles Pressing Public Health Issues

By: Brandon M. Macsata, CEO, ADAP Advocacy Association & Jen Laws, Board Co-Chair, ADAP Advocacy Association

The ADAP Advocacy Association hosted its "Health Fireside Chat" retreat in Nashville, Tennessee among key stakeholder groups to discuss pertinent public health issues facing patients in the United States. The Health Fireside Chat convened Thursday, April 27th through Saturday, April 29th. The state of Tennessee cutting funding for HIV prevention, detection and treatment programs, a growing chorus calling for reforms to the 340B Drug Pricing Program, and the intersection between U=U (undetectable equals untransmittable) and reforming HIV criminalization laws were evaluated and discussed by the 24 diverse stakeholders.

The series was rebranded to encompass a broader focus on public health, changing from the HIV/AIDS Fireside Chat to the Health Fireside Chat. Unlike previous Fireside Chats, Nashville’s event added an “ice breaker” activity, themed in light of the hosting city – a line dancing lesson, as well as an informal town hall meeting convened in partnership with Positively Aware. The additional half day of activities — including the ice breaker, townhall meeting, and meet and greet — allowed attendees to settle into conversation expediently after having a solid hour of good laughs, encouragement, and bonding.

Photo Source: Getty Images

The townhall meeting, which was facilitated by Rick Guasco, Acting Editor-in-Chief of Positively Aware, started with recognition that Nashville was explicitly chosen as a hosting city due to the state of Tennessee’s rejection of federal HIV prevention dollars. While a later discussion was specific to that issue, the town hall dug into underlying (and broader) concerns around systemic discrimination as a driver of today’s HIV epidemic. Digging into how racism, as an example, manifests can be a touchy subject in any group, even among those who generally align. Such a charged set of topics, especially among HIV’s thought-leadership, can and does lead to transformational moments, particularly because creating a space of “internal” advocacy provides a chance for us to experience, and navigate, conflict amongst ourselves. That conflict and navigation also provides us a chance to grow together and to break down silos of interest, work, and thought. And this townhall did exactly that.

The Health Fireside Chat included moderated white-board style discussion sessions on the following issues:

• Tension in Tennessee: Is an HIV Access to Care & Treatment Crisis Looming? — moderated by Jeffrey S. Crowley, Distinguished Scholar/Program Director, Infectious Disease Initiatives at the O'Neill Institute/Georgetown Law
• 340B Drug Discount Program: The Issues Spurring Discussion, Stakeholder Stances, and Possible Resolutions? — moderated by Kassy Perry, President & CEO, Perry Communications Group
• U=U: Is 'Undetectable Equals Untransmittable' Changing the Landscape for HIV Criminalization Laws? — moderated by Murray Penner, Executive Director, U=U plus, and S. Mandisa Moore-O'Neal, Executive Director, The Center for HIV Law & Policy

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:

• Guy Anthony, President & Founder, Black, Gifted & Whole Foundation
• Jeffrey S. Crowley, Distinguished Scholar & Program Director at the Infectious Disease Initiatives, O'Neill Institute for National and Global Health Law, Georgetown Law
• Brady Etzkorn-Morris, Executive Assistant for Global Operations, Prevention Access Campaign
• Earl Fowlkes, President & CEO, Center for Black Equity
• Rick Guasco, Acting Editor-in-Chief, Positively Aware 
• Hilary Hansen, Global Public Affairs Head, Oncology, Sanofi
• Kathie Hiers, President & CEO, AIDS Alabama
• Marcus Hopkins, Founder & Executive Director, Appalachian Learning Initiative
• Mark Hubbard, Patient Advocate
• Vanessa Lathan, HIV Health Policy Director, Black Ladies in Public Health
• Jen Laws, President & CEO, Community Access National Network
• David Wyley Long, Change The Pattern Associate, Southern AIDS Coalition 
• Brandon M. Macsata, CEO, ADAP Advocacy Association
• Judith Montenegro, Program Director, Latino Commission on AIDS
• Mandisa Moore-O’Neal, Executive Director, Center for HIV Law & Policy
• Warren O’Meara-Dates, Founder & CEO, The 6:52 Project Foundation
• Murray Penner, Executive Director, U=U plus
• Kassy Perry, President & CEO, Perry Communications Group
• Amanda Pratter, Associate Director, Policy Advocacy and Alliances, Gilead Sciences
• Gwen Rathbun, Associate Director, Alliance Development, Merck
• Alan Richardson, EVP of Strategic Patient Solutions, Patient Advocate Foundation
• Donna Sabatino, Director State Policy & Advocacy, The AIDS Institute
• Andrew Scott, Director of Strategic Alliances and Issue Advocacy, Bristol Myers Squibb
• Robert Suttle, Patient Advocate

The Covid-19 pandemic is still ongoing. Covid-19 has killed at least 1,129,573 people and infected over 104 million in the United States since January 2020, according to data by the Centers for Disease Control & Prevention (CDC).

With that in mind, the ADAP Advocacy Association implemented strong Covid-19 safety protocols for the Health Fireside Chat, which included proof of vaccination/booster, robust self-administered testing (prior to travel, upon arrival, and after returning home), complimentary rapid self-test kits and hand sanitizer for each of the attendees, as well as guidelines for masks on commercial travel to the event, and optional masks during the sessions (which some attendees exercised without feeling shunned). 

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

Tension in Tennessee:

The first policy session, “Tension in Tennessee: Is an HIV Access to Care & Treatment Crisis Looming?”, lead by the O’Neill Institute’s Jeffrey S. Crowley, invited local advocates to discuss their internal view of Tennessee’s “troubles” with some national advocacy representation. While much of the discussion focused on the details of local communication and national assumptions, some discussion on how the state may implement its newly allocated funding (will the state’s budget continue to fund prevention efforts next year?), much of the conversation that followed was explicitly about how local advocates can communicate and collaborate with national advocacy efforts. What became clear from that conversation is much of the national and state level advocacy we tend to reflect fondly of when speaking on decades past is relatively fragile and not well-coordinated. Planning bodies have diminished to largely being provider groups and some don’t even meet – despite a statutory requirement to do exist. An attendee with capacity building expertise pointed out the need for investment in this space. Many planning bodies have been weakened by atrophy, others have faced a demographic shift (and as a result a change in the barriers and assistance needed in order to appropriately activate affected community). The discussion as a whole highlighted the extreme silos working against a cohesive and collaborative advocacy network necessary to support ending the HIV epidemic.

Photo Source: Rolling Stone

 The following materials were shared with retreat attendees:

• "Tennessee’s Rejection of $8.8 Million in Federal Funding Alarms HIV Prevention Groups," Ava Sasani, New York Times, March 24, 2023
• "A Dangerous Precedent: Tennessee Rejects Federal Funds for HIV Prevention," amfAR, January 20, 2023
• "How Tennessee Illustrates the Three Rules of MAGA," David French, New York Times Subscriber-Only Newsletter, April 13, 2023

The ADAP Advocacy Association would like to publicly acknowledge and thank Jeffrey S. Crowley for facilitating this important discussion.

340B Drug Discount Program:

340B remains an important issue for HIV advocates. As such, “340B Drug Discount Program: The Issues Spurring Discussion, Stakeholder Stances, and Possible Resolutions?“ was the focus of the second policy session. Some of the advocates in attendance knew little about the program, so the discussion provided an excellent educational opportunity on how the discount drug program works. Laser focused on issues of health equity, Kassy Perry of Perry Communications Group lead the group to dig in – and quickly. Advocates less familiar with 340B were readily able to identify the need for reform when assessing reductions in charity care and increases in medical debt. The group readily recognized 340B as a powerful tool toward addressing health disparities, especially economic consequences for patients, and where those consequences can and do negatively impact entire areas of patients’ lives. Attendees from industry partners listened intently as advocates described their concerns and the need for the program to better reflect the intent in which it was established. Equally important, what is being proposed in New York has alarmed both patients and providers alike.

There was considerable conversation over the news about a new coalition, designed to support true safety-net providers and the communities they serve. The Alliance to Save America’s 340B Program (ASAP 340B) is a partnership of community health centers, patient, provider, and consumer advocates, and leaders from the biopharmaceutical industry. The ADAP Advocacy Association and the Community Access National Network have joined the alliance, and numerous groups in attendance expressed interest in also joining the fight to make 340B reflect the needs of patients, and not hospitals and mega providers. 

Photo Source: CANN YouTube Channel

The following materials were shared with retreat attendees:

• California Healthline: “Community Health Centers’ Big Profits Raise Questions” | Do Some Centers Exploit 340B Dollars | (8/15/22)
• Gay City News: “Providers Urge State to Keep 340B Drug Discount Program Intact” | NYRx & Impact on State Clinics | (3/31/23)
• Niagara Frontier Publications: “NYRx: NYS Launches New Statewide Medicaid Pharmacy Benefit Program” | $705M to Make Clinics “Whole” | (4/3/23)
• Buffalo News: “Another Voice: Changes to New York’s Medicaid Pharmacy Benefit are Essential” | NY State Medicaid Director Argues for NYRx | (3/29/23)
• Axios: “To 340B or Not to 340B” | Status of Legislative Action on 340B | (12/8/23) **Full text pasted below due to paywall
• American Legislative Exchange Council: “The 340B Program and State Mandates” | Price-Fixing in State Legislatures Isn’t a Solution | (3/2/23)
• MedCity News: “Court Ruling Leaves 340B Providers Waiting for Clarity About the Use of Contract Pharmacies” | Curtailing Massive Contract Pharmacy Expansion | (3/26/23)
• 340B Report: “Hospitals Shouldn’t Fear 340B Reporting Requirements, House E&C Republicans Say; Democrat Matsui Raises Concern About Scapegoating” | Accountability is First Step Toward 340B Reform | (4/4/23) **Full text pasted below due to paywall
• Augusta Free Press: “Rep. Spanberger Continues Legislative Fight to Protect 340B Program” | The Preserving Rules Ordered for The Entities Covered Through (PROTECT) 340B | (4/6/23)
• 340B Report: “Arkansas and 340B Providers Ask Appeals Court to Back State’s Novel 340B Contract Pharmacy Law” | Status of Arkansas’ 340B Lawsuit | (4/11/23) 
• Alliance for Integrity & Reform of 340B (AIR340B): “Learn more” | Coalition of advocacy groups, clinicians, and innovators committed to reforming and strengthening the 340B program
• 340B Health: “Learn more” | Membership organization of more than 1,400 hospitals and health systems
• Alliance to Save America’s 340B Program (ASAP 340): “Learn more” | An alliance between the biopharmaceutical industry and community health centers
• STAT News: “An unlikely new 340B alliance emerges between PhRMA and community health centers” | ASAP 340B to Push Reforms | (3/9/23) **Full text pasted below due to paywall
• 340B Report: “AHA Again Blasts PhRMA and NACHC’s Alliance to Remake 340B” | American Hospital Association Goes on the Offense | (4/11/23) **Full text pasted below due to paywall

The ADAP Advocacy Association would like to publicly acknowledge and thank Kassy Perry for facilitating this important discussion.

Editor's Note: The ADAP Advocacy Association has offered opinions on 340B over the last several years, including Industry’s Changes to 340B Drug Discount Program (April 2022), 340B – Reply Hazy, Try Again (January 2020), The Federal 340B Program: A Call to Order (March 2019), and 340B Program: Don't Throw the Baby Out with the Bathwater (March 2017)

U = U:

The final policy session, “U=U: Is 'Undetectable Equals Untransmittable' Changing the Landscape for HIV Criminalization Laws?“, focused on the intersection of issues between U=U and reforming HIV Criminalization Laws with the conversation hosted by Mandisa Moore-O’Neal, executive director of the Center for HIV Law and Policy, and Murray Penner, executive director of U=U Plus. Mandisa shared with the group the exceptional nature of HIV criminalization laws, but also how general criminal codes are out of date, furthering the HIV epidemic, and nearly exclusively used against Black and Brown people living with HIV. Mandisa also discussed how these laws can and are leveraged to further domestic violence (and coercive control). Murray then discussed how laws which allow for “affirmative defenses” only help those people living with HIV which can readily access and maintain care. All of which emphasized that the design of these laws assume that because someone is living with HIV, they are necessarily presumed “guilty”. Advocates discussed how to break silos, including the potential to partner in prosecutor and public defender education efforts. Advocates focused on health or with strong relationships with their local health departments, for example, might wish to participate in education efforts alongside legal advocacy organizations or a state Bar.

Photo Source: CHLP

The following materials were shared with retreat attendees: 

• Map: HIV Criminalization in the United States, CHLP (updated 2022)
• U.S. HIV Laws and Prosecutorial Tools, CHLP (updated 2022)
• What is the Consensus Statement on HIV "Treatment as Prevention" in Criminal Law Reform?, CHLP (updated 2022)
• WHAT DOES ABOLITION HAVE TO DO WITH HIV DECRIMINALIZATION AND MODERNIZATION?, Positively Aware (2020)
• Viral Load Does Not Equal Value, POZ (2019)
• Undetectable equals untransmittable (U = U): awareness and associations with health outcomes among people living with HIV in 25 countries, BMJ Journals (2021)
• Undetectable = Untransmittable (U = U) Messaging Increases Uptake of HIV Testing Among Men: Results from a Pilot Cluster Randomized Trial, NIH (2021)

The ADAP Advocacy Association would like to publicly acknowledge and thank Murray Penner and Mandisa Moore-O'Neal for facilitating this important discussion.

Additional Fireside Chats are planned for 2023 in Philadelphia, Pennsylvania, and New Orleans, Louisiana.

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.

HIV Communities Face Challenges in Blue States & Red States

By: Ranier Simons, ADAP Blog Guest Contributor

Funding is the backbone of most healthcare initiatives, including navigating the landscape of HIV/AIDS. The fight against HIV includes testing, surveillance, treatment, education, and supporting basic life needs. Community centers provide many of these services to vulnerable populations, getting their funding from federal dollars through states. Budgetary decisions that adversely affect such funding can set back strides made through successful initiatives. Two states, New York, and Tennessee are in the spotlight due to controversial proposed decisions.

Photo Source: City & State New York

One such questionable budgetary decision comes from the governor of New York, Kathy Hochul. In the past, the governor has expressed dedication to ending the HIV/AIDS epidemic in New York state. In December 2022, she signed legislation requiring insurance companies to cover PrEP and PEP.[1] However, many view her present proposal to end a current Medicaid drug plan as being damaging. The program, known as the 340B Drug Pricing Program, allows safety net providers to purchase discounted life-saving HIV-related drugs and use the savings to provide essential services.[2] Operationally, the program enables centers to buy the drugs at cost but get reimbursed at the high rate that health insurance company plans pay for the medications. As a result, they can use the difference to pay for other services that are instrumental in supporting the needs of the populations being served.

In addition to supplying medications, many facilities use the extra funds to help with housing, food, and transportation. Losing the funding would result in many centers losing large parts of their budgets, which would be detrimental to the vulnerable populations that depend on their services. Losing the ability to continue to help the PLWHA with affordable housing could mean that some could become homeless. Unstable housing results in poor HIV/AIDS outcomes resulting from issues such as poor medication adherence. 

Hochul’s budget proposal is a continuation of Governor Andrew Cuomo’s Medicaid Pharmacy Carve-Out. The Medicaid Pharmacy Carve-Out is an attempt to boost the state’s revenue. Advocates argue that it adversely affects the 340B program because it gives the money directly to the state instead of directly to the facilities, as is the current status quo. The funds from the program help 2.3 million New York residents, 90 percent of who are low-income and 70 percent are people of color.[2] The New York State Department of Health states that Hochul plans to transition to the Medicaid Pharmacy Benefit of the Medicaid Pharmacy Carve-Out on April 1, 2023, but remains dedicated to ensuring facilities still get needed funds. Many health centers say that the proposed changes do not include enough money to replace the millions of dollars they would lose and have proposed legislative compromise that would give Hochul the savings she wants without destroying the pipeline of funding in place that is the lifeline for other services.[3] 

Photo Source: Rolling Stone

Another budgetary decision receiving push-back comes from Tennessee. Governor Bill Lee announced, in January 2022, that the state would start refusing federal funds for HIV-related programming. The funding being cut is for HIV prevention, detection, and treatment programs that are not affiliated with metro health departments.[4] The funding pots specifically identified to be rejected are P.S.18-1802 and P.S.20-2010. One is for HIV surveillance and prevention, with the other supporting state health departments in ending the HIV epidemic.[5] Currently, Tennessee receives about $8.3 million in total from the two funding sources. 

Parts of Tennessee are hotspots for HIV transmission, with Memphis being among the top 50 communities nationwide for HIV transmission rates.[6] Shelby County, which contains several cities, including Memphis, is one of the areas targeted by the CDC’s EHE (Ending the HIV Epidemic in the U.S.) initiative. The EHE focuses first on 50 local areas that account for more than half of the nation’s new HIV diagnoses and seven states with a substantial rural burden.[7] Additionally, the CDC’s 2020 analysis included forty-two counties in Tennessee among the top two hundred and twenty counties nationwide most vulnerable to an HIV outbreak.[7] 

State officials and the Governor state that they will start refusing the $8.3 million in funding to be more independent and less reliant on federal dollars. Governor Lee has also stated that he can ensure HIV funding is spent in ways that best serve Tennessee better than what he feels are strings attached to federal funding.[8] The Tennessee Department of Health also expressed that priorities in HIV prevention funding would be shifted to focus on first responders, victims of human trafficking, and pregnant women. Data from amfAR, The Foundation for AIDS Research, shows that it is not evidence-based decision-making as such a shift would only prevent about nine cases of HIV transmission annually. The most at-risk populations in the state include transgender individuals, people who inject drugs, cisgender women, and men who have sex with men. According to amfAR, focusing on these at-risk groups would prevent more than 500 new infections yearly.[9]

Photo Source: KevinMD.com

Moreover, the state has not indicated how it will make up for the $8.3 million lost and has suggested that funding will go through state-funded metro health centers. This does not address the needs of rural areas. Without the funding, much evidence-based community programs will end. Testing, a keystone of HIV prevention, will be drastically reduced, access to services will decrease, and some clinics and community centers that do the most work will close.[10]

It is imperative that funding structures stay in place that allow trusted community centers to continue to do the work that they do prevent HIV, treat HIV, and wholistically support the lives of PLWH. People’s lives are at stake, and funding decisions should only be based on scientific data, not political and ideological paradigms. HIV advocates and healthcare providers are closely watching the activities in New York and Tennessee, and many are also hoping that harmful legislation does not spread to other states.

[1] Reisman, N. (2022, December 22). Hochul approves law meant to reduce HIV infections. Retrieved from https://spectrumlocalnews.com/nys/central-ny/ny-state-of-politics/2022/12/22/hochul-approves-law-meant-to-reduce-hiv-infections-

[2] PRivas, S. (2022, February 7). HIV/AIDS activists urge Hochul to repeal Medicaid carve-out. Retrieved from https://www.news10.com/news/hiv-aids-activists-urge-hochul-to-repeal-medicaid-carve-out/

[3] DeWitt, K. (2023, February 14). HIV/AIDS health centers say Hochul's proposal could gut services for most vulnerable. Retrieved from https://www.wamc.org/2023-02-14/hiv-aids-health-centers-say-hochuls-proposal-could-gut-services-for-most-vulnerable

[4] Kennedy, C., Watts, M. (2023, January 2023) Tennessee to cut off funding to nonprofits for HIV prevention, testing, treatment. Retrieved from https://www.commercialappeal.com/story/news/health/2023/01/18/tennessee-cuts-funding-hiv-treatment-testing-prevention/69820175007/

[5] Laws, J. (2023, January 30). Tension in Tennessee: HIV Crisis Looms. Retrieved from https://www.hiv-hcv-watch.com/blog/jan-30-23

[6] Farmer, B. (2023, February 3). Why Tennessee is turning down millions of federal dollars for HIV prevention. Retrieved from https://www.marketplace.org/2023/02/03/why-tennessee-is-turning-down-millions-of-federal-dollars-for-hiv-prevention/

[7] CDC. 2022. Ending the HIV Epidemic in the U.S. (EHE).Retrieved from https://www.cdc.gov/endhiv/jurisdictions.html

[8] Straube, T. (2023, January 24). Tennessee Rejects “Free Money” From U.S. Government to Prevent HIV. Retrieved from https://www.poz.com/article/tennessee-rejects-free-money-us-government-prevent-hiv

[9] Kennedy, C. (2023, February 14). 'A public health crisis': What state's rejection of HIV funds could mean for Shelby County. Retrieved from https://news.yahoo.com/public-health-crisis-states-rejection-110047477.html?soc_src=social-sh&soc_trk=tw&tsrc=twtr&guccounter=1

[10] King, P. (2023, February 14). Shelby County leaders urge the state to keep federal HIV prevention funding. Retrieved from https://www.msn.com/en-us/news/us/shelby-county-leaders-urge-the-state-to-keep-federal-hiv-prevention-funding/ar-AA17uEkN

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.

Reflections from an HIV Advocate's Journey: Larry Frampton

By: Larry Frampton, Retired

My journey as an HIV Advocate started in 1989 when my partner got sick and he received an AIDS diagnosis, and I followed with an HIV diagnosis. I quickly learned how bad HIV stigma was as I had to fight the hospital to get him proper care and his family who abandoned him from fear of getting HIV. In his final days he made me promise to do all I could to help others living with HIV. He died in my arms and this was the hardest thing I ever had to face and I was not sure how long I would live.

After this ordeal, I moved to Portland, Oregon where I got on AZT thanks to the AIDS Drug Assistance Program - which was started in 1987 to help people get access to the medications. I got involved with the HIV community, and worked on "death with dignity" issues as we were all watching friends die daily and wanted to control the way we died instead of the slow painful death we watched friends and loved ones go through. I also did home hospice work and held many friend’s hands and made lots of promises to continue to fight as they died.

I found my niche in HIV public policy early on and worked on physician assisted suicide, and helping to get the Ryan White Care Act passed in 1990 - which included continued funding for ADAP’s. During that time, I found myself getting arrested for protesting a few times...including once naked.

In the mid-nineties, I lost a second partner to the virus right before the Protease Inhibitors, a powerful class of HIV drugs came out and literally brought some people back from death’s doorstep. Meds were getting better and people were not dying as fast and many long-term survivors like myself had to then deal mentally with all the death in our lives. I was even diagnosed with PTSD. Advocacy had to be steered at that point to getting people mental health care and help applying for disability.

As the years passed, I was being recruited to speak at HIV Conferences (including the ADAP Advocacy Association's Annual AIDS Drug Assistance Program Conference, as seen in the photo) and Chair Planning Councils and my advocacy had changed from taking on Federal issues to dealing with State Policy Issues. The biggest one is HIV Criminalization laws that were created in the 80’s and early 90’s. States are slowly changing these laws and I took a crack at changing Tennessee’s laws but the political landscape of the state was too much to pass it. I was able to work with other groups to pass a law to help people with HIV prosecuted under the aggravated prostitution law removed the sex offender list. I also assisted with legalizing syringe service programs in Tennessee.

Finally, we still need to fight to keep ADAP’s strong. I recently found myself needing ADAP when I retired and was transitioning into retirement and Medicare. Sometimes people fall into the gaps and that is why we need to keep ADAP’s strong.

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.

An Inherent Value in Advocacy Partnerships

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

As we've witnessed our national dialogue boil over into "us versus them" or "red versus blue" or "urban versus rural" or the even more egregious "you're either with us or you're against us", it is important to remember there is an inherent value in advocacy partnerships. It is even more important for the HIV advocacy community to continue to leverage broad partnerships, rather than retreat into corners. Adopting the latter approach would surely result in less potent national and state-level advocacy, fewer programmatic outcomes, and far less access to care and treatment for the patients who need it.

The ADAP Advocacy Association has long boasted in its tag line that it "works with advocates, community, health care, government, patients, pharmaceutical companies and other stakeholders." Yet, all too often, some question why one group or another is invited to sit our communal table. Unfortunately, it is happening more so in recent years. It is a troubling trend, no doubt.

Our organization's primary audience is the patient. One of our core value statements is that the voice of individuals living with HIV/AIDS shall always be at the table and the center of the discussion. All too often the patient voice is pushed aside, or not even included in important conversations because they're characterized as "bitching and moaning" rather than proposing solutions. But haven't patients earned that right, because after all they're the ones living with the damn disease? That said, such an narrow attitude under-estimates the valuable contributions made by patients every single day!

Likewise, state health department employees aren't the enemy. They are our partners and if state agencies are doing something counterintuitive to promoting greater access to care and treatment, then it is the advocacy community's and patient community's role to engage them. Joey Wynn, who serves as a board member to this organization, routinely engages state agencies in Florida...including when those same agencies are doing something the local advocacy community finds potentially harmful. Joey's approach has served people living with HIV/AIDS in South Florida rather well, too. In fact, I've personally witnessed the effectiveness behind his approach at a town hall meeting in Miami (as seen above when Joey invited me to speak), as well as his past leadership with the Florida HIV/AIDS Advocacy Network ("FHAAN").

Beating up on pharmaceutical companies is easy, and it most certainly is a popular thing to do. Yet, it is indeed possible to push back on the high cost of prescription drug prices while simultaneously working with these same partners to fight harmful public policy proposals, such as federal budget cuts, or the dangerous idea of drug importation.

Photo Source: Wikipedia

Nashville, Tennessee-based advocate and social media guru Josh Robbins is prime example! Josh has partnered with numerous private entities — such as medical diagnostic companies and pharmaceutical companies — and various public agencies — including health departments — to promote a litany of public health initiatives ranging from National HIV Testing Day, U=U, and access to PrEP. His groundbreaking work in Tennessee could not have been achieved operating from a silo.

Wanda Brendle-Moss, who also serves as a board member to this organization, recently reflected on her HIV advocacy journey. Wanda has demonstrated that collaboration is an effective advocacy tool in North Carolina, evidenced by her relationships with the North Carolina AIDS Action Network, North Carolina Harm Reduction Coalition ("NCHRC"), and the Rev. William Barber II's Moral Mondays (as seen in the photo above). Wanda would work with anyone who will answer her phone call, email, or text!

Speaking of North Carolina and NCHRC, under the leadership of the former executive director, Robert Childs, progressive harm reduction policies were adopted in a conservative state with an even more conservative General Assembly. Such legislative victories in the state included achieving syringe exchange programs, expanded Naloxone access, Good Samaritan protections, prescription drug monitoring programs, among other things. How? It was the advocacy partnerships developed by NCHRC, including with some VERY unlikely allies.

Nationally, efforts such as the ongoing U=U campaign ("Undetectable = Untransmittable") to reduce HIV-related stigma could not have happened without Bruce Richman's steady leadership. It isn't surprising that Bruce has assembled an extremely broad coalition of community partners, representing all stakeholder groups.

The most effective advocacy is rooted in advocacy partnerships, and not rivalries. With the current occupant residing at 1600 Pennsylvania Avenue being so unfriendly to our community, such advocacy partnerships are even more important now!

Future of ADAP in Medicaid Non-Expansion States

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

On April 15th, access to care and treatment took center stage in Birmingham, Alabama as the ADAP Advocacy Association hosted a roundtable discussion on the "Future of ADAP in Medicaid Non-Expansion States." It is an issue with deep rooted concerns among people living with HIV/AIDS, especially since the Affordable Care Act ("ACA") was designed to expand both. According to Families USA, there are currently 19 non-expansion states...mostly situated in the South, and rural states in other parts of the country.

Photo Source: Families USA

One of the most troubling unintended consequences of the ACA has been exacerbated health disparities in the South, evidenced by only three southern states having expanded their Medicaid programs (Arkansas, Louisiana, and West Virginia).  Yet the South is arguably the area of the country that needs greater access to care and treatment, and not less.

The forum included perspectives from Alabama, and Florida -- both Medicaid non-expansion states. At issue was navigating how to advocate around the new ACA-led healthcare world increasingly driven by an insurance model, rather than a service-delivery model. For example, new barriers have emerged preventing some people living with HIV/AIDS from obtaining medications that may have been previously more accessible to them.

Aside from Alabama and Florida, other non-expansion states represented at the forum included Georgia, North Carolina, and Tennessee. The forum included an in-depth policy discussion with the following panelists:

• Joey Wynn, Community Relations Director, EmpowerU
• Michael J. Mugavero, MD, MHSc, Professor of Medicine, University of Alabama at Birmingham
• Alex Smith, Director of Policy and Advocacy, AIDS Alabama
• Warren Dates, Sr. Peer Linkage Specialist, Alabama Department of Public Health

L-R: A. Smith, Dr. M. Mugavero, W. Dates, and J. Wynn

Florida has learned to leverage its existing programmatic structure and wrap-around services under Ryan White to minimize clients falling through the cracks. In many cases, clients have experienced fewer barriers to care and treatment by receiving their medications via the AIDS Drug Assistance Programs (ADAPs), as compared to what is unfolding in some Medicaid expansion states. Florida could very well be the exception, though.

In Alabama -- where Blue Cross Blue Shield yields a monopoly on the state's insurance market -- efforts continue to focus on prioritizing services for people living with HIV/AIDS. On a positive note, ADAP waiting lists have been completed eliminated and client advocacy has become more specialized by focusing on related issues (i.e., housing and transportation).

In addition, Alabama’s Insurance Assistance Program (AIAP) was launched in 2015, providing cost- effective health insurance to eligible clients. This approach to linking clients to timely, appropriate care and treatment is paying dividends with outcomes, too. According to the State of Alabama AIDS Drug Assistance Program (ADAP) Quarterly Report, "The majority of clients actively served by ADAP reported viral suppression (i.e., viral load ≤ 200 copies/mL) at the last viral load test collected during the preceding 12 months. However, the level of viral suppression varied by service category with MEDCAP reporting the most virally suppressed clients (89 percent), followed by AIAP (79 percent) and ADAP (56 percent). As only fifty-six percent of active ADAP clients are virally suppressed, this indicates a need for improved adherence to antiretroviral therapy (ART) and retention in care in this service category."[1]

Ironically, Alabama and Florida are experiencing different challenges related to the marketplace plans. In Alabama, there are not enough plans available to people living with HIV/AIDS (only 12), whereas in Florida too much time is spent "policing" the plans because there are so many.

The discussion also provided an opportunity to share lessons learned, and the implementation of successful strategies aimed at increasing access to care. Among them, local agencies leveraging 340B rebates to expand services and supports in critical areas, and the deployment of telemedicine networks.

Medicaid expansion will undoubtably remain an issue with profound repercussions on people living with HIV/AIDS, especially considering the uneven way it happening across the country. In the meantime, partnerships between care providers will grow in importance, as well as leveraging existing dollars to promote better health outcomes.

The ADAP Regional Summit in Birmingham, Alabama was held in partnership with the AIDS Alabama, AIDS Healthcare Foundation (AHF) and the Community Access National Network (CANN). To learn more, visit http://adapadvocacyassociation.org/events.html#arsba.

____________

[1] Alabama Department of Public Health, Division of HIV Prevention and Care, "State of Alabama AIDS Drug Assistance Program (ADAP) Quarterly Report," March 31, 2016; last viewed online at http://adph.org/aids/assets/ADAP_QuarterlyReport_Q1_2016.pdf.