HIV Advocates Gather in Nashville for Health Fireside Chat
From April 27th through 29th, ADAP Advocacy Association (aaa+) hosted its first Health Fireside Chat of the year. 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 a 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. Once down to business, policy discussions focused on Tennessee’s politically-motivated decision to decline HIV prevention funding, reforming the 340B Drug Discount Program to better meet patient needs, and the intersection between U=U (undetectable equals untransmittable) and reforming HIV criminalization laws.
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 first policy session, “Tension in Tennessee: Is an HIV Access to Care & Treatment Crisis Looming?”, lead by the O’Neill Institute’s Jeff 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.
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.
Day two concluded with attendees enjoying a meal with one another, and a round of singing “happy birthday” to Brandon M. Macsata, the ADAP Advocacy Association’s CEO, who turned 50. This was truly a moment (many of them really) in which attendees got to buy into my desire to ensure our colleague felt loved and celebrated, since we were all together. All told, it is very likely Brandon heard the song “happy birthday” some two dozen times or more throughout the event (and I sincerely encourage ya’ll to do so again, if you find yourself in a meeting with him during the month of May).
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.
The Health Fireside Chat series remain an exceptional retreat to advance thought-leadership, deep-dive policy conversations, as well as often-under appreciated advocacy collaboration. The ADAP Advocacy Association plans to host additional Health Fireside Chats later this year in Philadelphia, PA, and New Orleans, LA.
Australia is on Track to End HIV…by Focusing on Treatment
Last week, researchers funded by the National Health and Medical Research Council of Australia published an assessment of Australia’s success in combatting HIV and how the country might meet its goals to end their domestic HIV epidemic. The study is remarkable in many ways and readers should be cautioned to appreciate the various differences in dynamics between the epidemic in their country of residence and Australia. For example, Australia has been willing to get creative with its policy and program environment and infrastructure to address barriers to care – something many other countries, including the United States, might face steeper challenges in doing.
The study, which focused itself in New South Wales and Victoria – the country’s most populous states. While these areas hold large urban populations, Melbourne and Sidney for example, they also have large rural geographies as they get closer to the interior of the country. This isn’t dissimilar to much of the United States, where the coasts and land boarders, to a lesser degree, are well populated and as you get closer to the interior of the country, that population becomes more rural. Rural and urban geographies present very unique dynamics in and of themselves. And those differences should be well-appreciated when considering the findings of the study.
Specifically, the study sought to assess “whether treatment-as-prevention could achieve population-level reductions in HIV incidence among gay, bisexual, and other men who have sex with men (GBM)”.
What’s most interesting about the study – though not necessarily surprising given historical evidence – is it found a positive correlation between increasing viral load suppression and reduction of new HIV diagnoses. But it’s not a 1-to-1 ration. The study found a 1% increase in viral load suppression was associated with a WHOPPING 6% decrease in new diagnoses. That’s not all folks – that decrease was AFTER an adjustment to account for pre-exposure prophylaxis (PrEP), meaning the 1-to-6 correlation between increased viral load suppression and reduction of new diagnoses was INDEPENDENT of PrEP uptake and use.
Now, that’s not bash PrEP. Rather, the authors argue that to achieve maximum benefit, PrEP should continue to be partnered with our understanding of treatment-as-prevention, or, as messaging goes, Undetectable Equals Untransmittable (U=U). Indeed, the data from the study spans 10 years, which means the authors were able to positively demonstrate how PrEP increases the successes related to treatment-as-prevention.
Authors conclude their work with a direct interpretation: “Our results suggest that further investment in HIV treatment, especially alongside PrEP, can improve public health by reducing HIV incidence among BGM.”
This work is especially important as the United States begins considering a nationalized PrEP program and making exceptional investments in doing so. This study very specifically reminds us that we will NOT reach our goal of ending the HIV Epidemic with PrEP alone…but we might with treatment-as-prevention. And if we were forced to do so with treatment alone, we might still get there if we could overcome barriers to care like stigma, unnecessary barriers to care like utilization management practices, employers leveraging their power in the private market, meeting people where they physically are, closing gaps between “available” and “accessible”, overcoming discriminatory actions aimed at harming those already most affected by HIV, and more.
There’s another advantage in not moving onto PrEP with a near exclusive fervor, HIV treatment is directly life-saving. It is the humanitarian and right thing to do to ensure people already living with HIV are receiving the care and treatment and resources and support we need to thrive.
Directly, this data shows us that we will not defeat HIV by only focusing on people not already living with HIV. Rather we must ensure the lion’s share of our work focuses on people already living with HIV.
There’s much work to do and much promise on the horizon.
I’ll leave advocates with this and a request to search internally.
In December, HBO will be releasing a documentary on the Honorable Nancy Pelosi. The trailer for it is out already. In one clip, one quote, Representative Pelosi, one of our dearest champions, summarizes where our work should guide us, “I came here to do a job, not keep one.”