In Times of Uncertainty, Remember Your Values
Last week, the boards for Community Access National Network and ADAP Advocacy met with various partners and our respective staff and consultants to discuss the future. As with all things around prognostication, our collective crystal balls are hazy and the future remains uncertain, but not without opportunity.
I want to recognize the tension and fear many of our community members are facing and will continue to face…the tangible harms some of us will realize in the years to come. I also want to acknowledge that those fears come from harms many of us have felt in years prior.
In reflecting on the meeting, I felt rooted in a simple fact, one I hope to come back to many times as we navigate the waters ahead: In times of uncertainty, we must find ourselves as deeply tied to our values as ever. Our actions must reflect those values individually and collectively. To each organization’s board members who righteously reminded the group of these things: thank you.
The policy landscape of 2025 and the future thereafter is likely to be rife with new and old challenges. Decisions from the United States Supreme Court will increase the healthcare ecosystem’s penchant for litigation, which will leave certain policy-making in the hands of judicial officers rather than policy experts. How much? We’re going to learn. And, frankly, this is true even outside of healthcare as a sector of advocacy. All advocacy organizations will grapple with the notion of regulatory changes that can be held to a jury trial and where agency deference is limited. This does not mean advocacy no longer has a role between corporate interests and attorneys. Rather it means advocacy must focus on compelling arguments and investing in relationships with public interest firms to ensure the public’s true interests, rather than the government’s or corporate interests, are centered in arguments and outcomes. In many ways, this operational assessment is not different from rule-making and regulatory engagement.
To that end, this is also not the first time advocacy, HIV-advocacy specifically, has faced a necessity to consider our non-partisan and bipartisan origins. Collectively and within our institutional and historical knowledge, we know how to identify allies of all stripes. We know how to align ourselves on narrow policy and program issues while also not endorsing harmful policy from the same people with whom we find those narrow alliances.
At the end (and beginning) of the day, certain truths remain:
We come from a long history of advocacy with the passion of activists whose legacies we must honor.
We have the expertise this moment demands and we must ensure that expertise is extended to newer partners.
HIV exists and thrives in social environments of stigma and privilege. Much of the health equity fight can find roots and advancements in HIV.
Ending the HIV Epidemic in the United States will require returning public trust in science and investment abroad. Health equity does not end at our borders.
Other health crises will arise as we continue this fight.
All policy matters - elevating HIV as a critical symptom of tertiary policy issues is both noble and effective. To that end, finding a balance in an organization’s primary mission and tertiary issues can be challenging.
Our communities are exhausted. As advocacy organizations, we have a duty to our served constituents to not “ring bells” which do not yet need to be rung. As we struggle with our capacity limitations, we must also recognize the emotional capacity limitations of those we advocate on behalf of.
The time has already arrived to invest in the next generation of advocacy leadership. Legacy advocacy organizations must invest in succession planning and our funding sources must be willing to take risks in these investments as well. We will not change the current state of our shared stories by doing things as we have always done them. It’s time to step into the future together.
In all fairness, I want to close out this year sharing some significant investments CANN has made. CANN has been on a “growth” track for the last three years. Our funding has increased, our number of funders has increased, and our presence in state-based advocacy has increased. Some of funding partners and new community partners are not specifically involved in HIV advocacy, they do however, recognize the intersection of our shared interests in healthcare and public health policy. Their willingness to invest in CANN and take those risks is well and truly appreciated. Additionally, ensuring the “national” in our name is not limited to federal advocacy is deeply important to anchoring into our values. We do, of course, continue to advocate on federal issues and expect to expand on federal work in 2025.
CANN’s growth also includes bringing on new consultants. We have historically prioritized identifying patient community members who have an entrepreneurial spirit, passion for policy, and a thriving desire to improve the world around them as potential talent to draw from, regardless of formal education. Our singular recognition in these priorities is that in order to improve patient-community lives, policy solutions must originate from patients themselves.
In 2024, we welcomed Travis Manint as our permanent blogger and he will be taking on some additional administrative responsibilities in helping CANN maintain our quality of work product as we grow. Ranier Simons also joined CANN in a more full-time capacity tackling the pressing issues of state-based Prescription Drug Affordability Boards (PDABs) and their threat to the Ryan White program, other safety-net providers, independent pharmacies, and vulnerable patients, including people living with HIV or other potentially disabling health conditions. Ranier has also spearheaded developing work on Pharmacy Benefit Manager (PBM) reform and PBM oversight and investigative activities on both the federal and state levels. Ensuring government bodies are fully aware of the unique aspects of the healthcare ecosystem and supply chain is a core activity for us. We also welcomed Kalvin Pugh to the team as our state-based 340B policy specialist. Kalvin is already off to a strong start representing patient interests via testimony in Michigan and updating data on CANN’s 340B Action Center. We remain well-served by our business consultant, Brandon M. Macsata, and have sincerely enjoyed the event coordination services provided by Amanda Kornegay. Dave Mickler, Sergio Gomez, and David Spears have readily worked to ensure CANN’s website, infographics, and educational videos represent CANN’s “best side”. Lastly, and certainly not least, the team at Perry Communications has made deep investments in helping CANN’s message and priorities land in front of the right eyes - patients and policymakers alike.
When I accepted the position of CEO of CANN, I emphasized a deep desire to ensure our partners and community can feel proud of work - that we can and do readily honor Bill Arnold’s legacy while also stepping up to and meeting today’s needs. It is with the sweat equity of these truly remarkable human beings that I am as confident that CANN will continue to meet this priority. Speaking for myself, I am proud of the team CANN has brought together - every person - and the work we’ve brought forward this year
In a season of uncertainty, the entire CANN team, from our board members to our staff and consultants, helps us all remain committed to our values.
