Understanding Atlanta’s Persistently High Rate of HIV

By: Ranier Simons, ADAP Blog Guest Contributor

Since the 1950s, Atlanta is commonly known as “Hot Lanta” popularized by the Allman Brothers Band’s song because of its hot and humid climate.[1] But the weather isn't the only thing "hot" in Atlanta as the metro area surrounding the city has become a burning epicenter of new diagnosis for HIV.

Photo Source: ANIZ

Proper data collection and analysis take time. This is especially true regarding public health surveillance and research. It is better to have robust sourcing of quality data collection than analysis of rushed volumes of collected data.[2] The Centers for Disease Control & Prevention (CDC) recently released a national HIV data analysis of infection rates from 2021. Overall, the national rate of new HIV infections has been decreasing over the past few years. However, this is not entirely true for the South.[3] Reporting indicates problematic infection trends in several southern metropolitan areas, one such area being metro Atlanta. 

Data shows that in 2021, metro Atlanta had the third highest new HIV infection diagnosis rate of metropolitan areas, only bested by Miami, Florida, and Memphis, Tennessee.[3] This data gives added context to preliminary data observed presently in 2024. According to Dwayne Ford, director of HIV prevention services with AIDS Atlanta, there are more reported positive individuals living with HIV in the first quarter of 2024 than in the first quarter of 2023.[4]

Various treatment and prevention tools exist, so healthcare professionals and community groups are trying to identify where more work needs to be done to reverse Atlanta and Georgia’s new infection rates. While metro Atlanta is the third highest ranking in new infections for metropolitan areas, Georgia is fourth overall as a state. One challenging area of concern is funding. Georgia is one of the few states that have not expanded Medicaid. If Georgia fully expanded Medicaid as allowed under the Affordable Care Act, over half a million Georgia residents would become eligible for health insurance.[5] 

Photo Source: Atlanta Journal Constitution

This would enable over half of the Georgian residents who are uninsured and enrolled in the Ryan White program to be moved to Medicaid. They would still be able to get all the care they received under Ryan White in addition to other services not available through Ryan White. That, in turn, would free up approximately $53.7 million of Ryan White funding to help non-Medicaid eligible people living with HIV not presently accessing services.[4] Treatment is prevention since increasing the number of people on ART means increasing viral suppression, lowering the number of those able to transmit HIV. Moreover, expanding Medicaid would mean increasing access to PrEP since Ryan White Funding cannot be used for PrEP medications nor its associated medical visits and laboratory testing.[6] African American and Hispanic males comprised the majority of reported new HIV infections yet have much lower utilization of PrEP in comparison to white residents.[3]

Access is a significant issue for low-income residents and the African American and Hispanic populations, which are disproportionately represented in new infection numbers. However, stigma is also still an issue.[3] In African American and Hispanic communities, HIV stigma remains a barrier to care, testing, and support. Efforts to encourage and expand testing lose impact when those who discover their positive status do not seek treatment. It is vital to bolster efforts to get newly diagnosed individuals into treatment as soon as possible and to help them remain in treatment. Support is needed since fear and privacy concerns hinder vulnerable populations from wanting their medications discovered by friends and family. Additionally, fear of the stigma of being seen at public clinics or other healthcare facilities hinders proper follow-up care and testing.

Support and prevention are the two areas many concerned parties are focusing on. Expanding prevention efforts such as PrEP access, education, and culturally competent messaging are imperative. Improving upon existing measures to help those negatively affected by social determinants of health, such as lack of transportation and insurance, is also necessary. 

Photo Source: endhivatl.org

The Fulton County Department for HIV Elimination recently launched a new website, ENDHIVATL.ORG,  in response to the metropolitan Atlanta area epidemic. Citizens can use the site to find service providers based on the services they provide and their proximity to where they live. The site also provides up-to-date information concerning how and where to access PrEP and other medical and non-medical services. To help address stigma, the site has a prominently displayed section entitled ‘Positive & Proud.’ It contains personal stories of local community members living with HIV regarding their lives in general and their experiences with utilizing the Department for HIV Elimination services. There is even a section of the site dedicated to assisting healthcare providers.

Atlanta’s high rate of HIV infection has persisted for years. While rates have declined slightly, they are still disproportionately higher than the rest of the country. Hopefully, continued efforts to highlight the status quo, maintain awareness, and provide further support and prevention will soon result in improved lives and outcomes.

[1] Kane, Deborah (2024, April 10). What is the nickname of Atlanta Georgia? NCESC. Retrieved from https://www.ncesc.com/geographic-faq/what-is-the-nickname-of-atlanta-georgia/

[2] Chiolero, A., Tancredi, S., & Ioannidis, J. P. A. (2023). Slow data public health. European journal of epidemiology, 38(12), 1219–1225. https://doi.org/10.1007/s10654-023-01049-6

[3] Gaines, J. (2024, April 1). New HIV case rate in metro Atlanta third highest in nation. Retrieved from https://www.ajc.com/news/atlanta-news/new-hiv-case-rate-in-metro-atlanta-third-highest-in-nation/6TDMS6CUTZG7RPVPRLE6O3JZCY/

[4] 11Alive. (2024, April 4).HIV cases on the rise in metro Atlanta - What local clinic says about it. [Video]. YouTube. https://www.youtube.com/watch?v=h2jh2TgxfcQ&list=WL&index=1

[5] Equality Foundation of Georgia. (2022). Implications of Medicaid expansion on Georgia's HIV Budget. Retrieved from https://georgiaequality.org/wp-content/uploads/2022/01/REPORT-Medicaid-Expansion-and-Ryan-White.pdf?emci=61ee3ed9-f179-ec11-94f6-c896650d4442&emdi=ea000000-0000-0000-0000-000000000001&ceid=

[6] Department of Health and Human Services. (2021, November 16). HRSA Letter to Ryan White Program Colleagues. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/hiv-care/prep-dcl-november-2021-508.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. 

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.

Georgia on My Mind: ADAP Short-Term Success, Long-Term Issues Remain

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate 

In September 2020, the National Alliance of State and Territorial AIDS Directors (NASTAD) released details from their request for information from their members and partners regarding COVID-19 impacts on HIV prevention programs, hepatitis programs, and Ryan White HIV/AIDS Programs (RWHAP). While the findings were promising in terms of federal flexibilities, the details of impacts among Ryan White HIV/AIDS programs, in particular State AIDS Drug Assistance Programs (ADAPs), were quite concerning. Among reported impacts, NASTAD stated “A majority of respondents also reported anticipating increased burden to the RWHAP as people lose their health insurance and income due to the economic downturn.”

Georgia ADAP advocates took note and began investigating the status of the state’s ADAP. However, despite requests, the state provided no information until a November meeting. At that time, Georgia’s Department of Public Health (DPH) shared they anticipated an $11 million funding gap for the program. Similar to the situation in Texas, DPH cited a HRSA rule on state matching funds and an “increase in enrollment” in order to justify introducing cost containment measures (e.g., reducing formulary inclusion, lowering income limits for eligibility, waitlists). However, under closer scrutiny, advocates ran into a familiar problem: the state had not increased funding for ADAP in over a decade, despite the program having grown by about 130% since the last increase. So why now the issue?

Georgia, like every other state, is grappling with the economic impacts of COVID-19 on tax revenues and appropriately planning their budgets.

Artwork provided by The Feminist Farmwife

Highlighting Georgia’s new HIV diagnosis rates, efforts aimed at Ending the HIV Epidemic, and the necessity to provide HIV medications as both treatment and a prevention activity, Equality Georgia lead the effort of asking the state legislature to finally increase funding for the state’s ADAP. Legislators in the House were widely amenable to the necessary increases, but Senators were skeptical and required a bit more effort. State Senators visited service sites and spoke with providers and PLWH about the funding and program concerns. Senators found what advocates and PLWH already know: federally funded providers already maximize their federal dollars – the issue in Georgia isn’t the use of federal funds at the provider level, it is lack of regular program funding increases on both the state and federal level to match the needs of the moment. Indeed, no one is paying the same for medications or care as they did a decade ago.

Advocates also organized four days of community-based “lobbying” including phone calls and emails to members of the Senate appropriations committee before finding success. A key, they said, was being selective: focusing on messaging regarding longer term costs of failing to act now and only targeting Senators on the appropriations committee. 

Jeff Graham, Executive Director of Equality Georgia said, “It is the value of keeping people healthy and in many instances, that means that people are able to retain their jobs.

“People are able to continue to be productive members of society by having this support, and frankly, the cost of medications itself is far lower than the cost of providing the intensive medical care if people don’t have access to medications early on and get sick and get hospitalized,” he added.

Ultimately, advocates argue, this wouldn’t have been an issue if the state were maximizing its use of 340B rebate dollars and had expanded Medicaid – a talking point expansion advocates across the state would benefit from latching onto.

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: Tori Cooper

By: Tori Cooper, Founder and Executive Director of Advocates for Better Care Atlanta, LLC

What can I say? I can’t even remember the first time I heard of HIV/AIDS. But I can tell you when it first hit close to home. The way I remember, my mom’s cousin and father died on the same day; one in the morning and one that evening. That’s terribly traumatic. My grandfather died from hard living. He was an absolutely beautiful man with a gentle spirit and a body that couldn’t withstand years of unhealthy living. My mom’s cousin was different. He had lived what seemed like an amazing life in the Big Apple, with fur coats and beautiful cars and glorious apartments in the city. Yet on this very same day, both of their lives ended within hours of each other. Neither of their bodies could any longer handle the pain and decay that had ravaged both of their brilliant light. My grandfather died of organ failure and her cousin died of complications due to AIDS.

I was in middle school and had recently lost my virginity. I remember so vividly because my first time (this time really counted) was on a Saturday while Soul Train was on. My mom dropped me off at my boyfriend’s house (she didn’t know he was my BF) as she visited my grandfather in the VA hospital. Around this same time, my family had traveled from VA to NYC to visit her cousin. She described having to wear all kinds of equipment, that I imagined was like a space suit, just to enter his room. No one could actually touch him, but at least they were able to be kind of close to him and share this space – even if it was through hazmat gear. They way I remember, it was sad, but in my middle school aged mind, it seemed kind of cool too. Soon after these two events, two men whom my mom loved so much lost their lives. Another thing that’s so interesting is how I can remember that the one who drank and smoked himself to death, was honored in a military funeral where the entire family grieved and carpooled to Arlington National Cemetery for a full military home going. The other, who lived a rather fanciful, pristine and glorious life, died among innuendo, whispers and rumors. This was my introduction to HIV.

A few years later, I began to socialize with my new friends. This was all part of my “coming out” phase and I gained so much street smarts. The girls used to tell me, “You won’t get AIDS if you don’t mess around with white men.” And I believed them. That was my HIV/AIDS education. I remember seeing Black folks, who now would be called Trans and Queer, looking great on one Friday and looking like death by the following Friday. I remember when the same folks that we partied with just disappeared.  Eventually, word would get out that they died and that would be the end of it. At some point during the next few years, there were fundraisers at the clubs and folks selling dinner plates to make enough money to cremate our own. This was all part of my coming out years. It was just how life was at the time.

Fast forward, high school came and went. I got to college and discovered so many wonderful things, and sexually, I just flourished! I had my first real love and my first real heartbreak. By 1988, we all knew about HIV. I had actually been tested and received a false positive. This was at a time when it took weeks to get your results. For a short period of time, I figured my life would be over just like those same folks I partied with as an underage teenager in the clubs. For a short while, I didn’t think I had a future. I just imagined that no one would ever remember that I even lived on this earth. And then when I learned that first test was wrong, I was stunned once again. And then came 1989…

By the summer of 1989, I had already visited Atlanta, partied in New York and clubbed in DC. I had joined the military and was attending an affirming HBCU (Historically Black College/University) which made me even prouder to be Black and unique. 1989 proved to be a turning point in the way I saw the world and other people and especially in how I see myself. I learned some truths about myself and found out some inescapable truths that affect every aspect of my life even now. And by 1989, it was obvious what HIV was doing to folks who were just like me. These were folks I had partied with, fought with, made love with and socialized with since I was sneaking out of my parents’ house at 11 and 12 years old. Within the next few years, this plague would ravage Black clubs and queer Black communities. Folks that I consider friends JUST DIED. There wasn’t anything special about it after a while. They JUST DIED. Some had horrific deaths with hospital stays, and skin lesions and were just skin and bones. Others looked kinda sick but seemed to have dodged the bullet, but then suddenly the news was circulating through the community that we had lost another one. But somehow, in spite of 1989, I was still here. Not only was I here, but I was living my best life. But how and why???

Throughout the early 1990s, you could visibly see the plague taking over our communities. My socialization was in the clubs. I partied up and down the east coast – Club Bunz, Hypodrome, Paradox, The Tunnel, Webster Hall, Traxx DC and Tracks Atlanta, Loretta’s, The Tunnel, Scorpios, Equelitas, Octagon, Scandals, the Pyramid, Club Colours, Paradise Garage, Onyx and so many others. I screwed my way from city to city and had fun the whole time. I figured if this inevitable plague was gonna kill me too, I was gonna go out kicking and doing splits. I observed that the HIV epidemic took away all the sissies and punks from Black clubs. Those were my friends. They were the ones who always got the party started. Unfortunately, those were also the ones society falsely blamed for being HIV to Black communities. Well, they said it was punks and downlow men. Punks and sissies took the heat for the Black community. I’m not sure I was ever a sissy. But sissies and punks were my friends. I never thought of myself as a sissy or a punk. I just wanted to be a woman.  House music and Disco suddenly became associated with gayness and just like us, it died out. Men weren’t dancing with men in gay clubs anymore. Isn’t that crazy? The same men had been sissies suddenly were wearing Timberlands and sweatpants. Nobody wanted to be a sissy anymore. In Black communities and Black clubs, that meant you were a part of the problem. HIV was killing us and HIV stigma was killing those of us who didn’t die. I didn’t die even though I was expecting it. But it never happened. I’m still here. And so many others, who probably deserved to be here, didn’t make it. There must be a reason, and it would take me another twenty years to figure it out.

So fast forward, I’m living my life. My ex and I decided I was going to relocate back to Atlanta and we would live happily ever after. When that didn’t happen and we broke up, I was suddenly all alone and still alive. Hmmm aint that something? In Atlanta I saw that folks who were just like me were being victimized on public transportation just for being themselves. I saw that Black trans women were still dying because they weren’t engaged in healthcare like I was. I witnessed Black Trans women being denied jobs, even at places where I worked, because they didn’t look or sound a certain way. Being single, I saw that these men didn’t give a shit about us. It’s like people viewed us Trans women as disease ridden, paranoia driven, sexual oddities and not real people. Black Trans women were being killed and nobody cared. I had to do something about it because I was still here.

I swear to you that God revealed to me in a dream that I was supposed to be doing this work. I was in my 40s, single, Black, Trans and still alive, and He or She “called” me to do the work. So, I’m doing it. I’m doing it for all the punks and sissies and queens and queers who are not alive. I’m doing it for all those who died, when I didn’t. I’m doing it for all of US who are in this fight for health and financial equity and fighting systems of oppression. I’m not a martyr for being an HIV advocate. I’m just old enough and optimistic enough to think that I can make a difference in someone’s life. I’ve for the last 30 years when so many people didn’t. I’ve seen what death looks like. So if I can help one person, especially someone like me, to live to see a 30th birthday, and a 40th and 50th birthday, then I feel that I’m doing what I was called to do. I would be doing a disservice to myself and all of the communities that I represent if I didn’t continuously fight for all of us. This is all part of my journey.



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.

Restricted Access to Care under Insurance Network Narrowing

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

One community that the Affordable Care Act ("ACA") has served particularly well is people living with HIV/AIDS. The law has led to the elimination of pre-existing condition barriers, lifetime limits on the amounts insurers have to pay, and the prescription drug “donut hole” under Medicare Part D, to name only a few. Expanded screening for HIV-infection is also an important feature of the law. That said, new barriers now face many people living with HIV/AIDS trying to access care and treatment. Among the most troubling is insurance network narrowing.

The ADAP Advocacy Association hosted a roundtable discussion on the "Restricted Access to Care under Insurance Network Narrowing" in Birmingham, Alabama earlier this month. The practice of narrowing networks is a cost-savings tool utilized by insurers, but patients find fewer doctors and hospitals in their network...or pay more to use a provider of choice. The practice has taken on a life of its own under the ACA.[1]

Photo Source: California Broker

The issue isn't going away, which is prompting advocates to combat it. The forum in Birmingham included an in-depth policy discussion on insurance network narrowing with the following panelists:

• David Poole, Legislative Affairs, AIDS Healthcare Foundation
• Wendi Clifton, President, WL Clifton Political Consulting
• John Dunnam, Positive Leadership Council, AIDS Alabama
• William Arnold, President & CEO, Community Access National Network

L-R: B. Arnold, J. Dunnam, W. Clifton, and D. Poole

One consistent theme emerging is consumer choice -- including among people living with HIV/AIDS -- is indeed "narrowing." In Georgia, numerous changes to the marketplace plans have resulted in no Platinum Plans being offered...and costs are increasingly being shifted to the patient. One problem for patients, such cost-containment tactics yield a "push-pull" paradigm with rising drug costs versus insurance carriers mitigating risk. The end result is the same, and that is both contribute to access to care and treatment barriers.

For example, Grady Health System in Georgia provides over $200 million in indigent care because over half the population experience insurance-related barriers. This figure is problematic for people living with HIV/AIDS considering that the Peach State is one of the leading states in new HIV infections.

Patients in Florida are experiencing similar challenges, too. Summarized David Poole, Director of Legislative Affairs for AIDS Healthcare Foundation, "Narrow networks are forcing Floridians to access providers who they do not know, do not have an existing trusting relationship and often times are not experienced as HIV providers. The treatments have become highly effective and are much more simple regimens but the disease state remains very complex."

The problem with insurance network narrowing is compounded by the "balance billing" practice by insurers. Healthcare.gov characterizes balance billing as, "When a provider bills you for the difference between the provider’s charge and the allowed amount."[2]

(Editor's Note: Additional barriers to care and treatment were outlined in our previous blog, "Future of ADAP in Medicaid Non-Expansion States")

As the ACA continues to unfold, growing pains will certainly remain and none probably more frustrating than insurance network narrowing. People living with HIV/AIDS -- just like any patient -- should be afforded the opportunity to visit the provider of their choice, especially for specialty services such as infectious disease care and treatment.

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] Ableson, Reed, The New York Times, "More Insured, but the Choices Are Narrowing,"May 12, 2014; last viewed online at http://www.nytimes.com/2014/05/13/business/more-insured-but-the-choices-are-narrowing.html?_r=0. 

[2] Healthcare.gov, "Balance Billing,"