Last month, I recapped the lessons learned from the COVID-19 pandemic and the importance of retaining the speed, creativity and focus the healthcare system gained during this global crisis.
In this issue, I would love to look back to another public health crisis and discuss the learnings we gained from the AIDS epidemic.
I was inspired by the 2012 United in Anger: A History of ACT UP documentary, which is a piece of media I taught in my recent Population Health in the American Healthcare System course. This documentary offered a moving reflection on a unique point in history and a powerful case study of how patient activism and major policy decisions played a role in achieving progress for the population impacted.
In case you haven't seen it, here is a recap and a few of my takeaways from this documentary:
- The Power of Community Involvement
- The Importance of Creating Access to Care
- The Need for Rapid Mobilization
- The Impact of Misinformation/Messaging
These themes stood out to me most during discussion with my students, especially what we learned during the epidemic and should be thinking about for future crises.
If you're unfamiliar, I encourage you to check out the Office of Infectious Disease and HIV/AIDS Policy website for a full history and timeline of the epidemic, from the first reported cases in 1981 to the latest policy and research efforts from this past year.
The actions the healthcare industry and government have taken in response to the AIDS epidemic are 40+ years in the making. Because of what we didn't know, and the amount of misinformation spread at the time, there was a huge lift to get regulatory, healthcare and other involved entities to start thinking through how to provide access to care and treatment.
As a result of this slowed progress (and even inaction), many of the subjects interviewed in the documentary share how their family, friends and partners lost their lives to the disease. Additionally, they clearly expressed the need of having AIDS patients involved in every level of research, conversation and decision-making -- that representation was what moved the needle in reaching groups like the FDA in eventually approving diagnostic and treatment options. For a while, the diagnostic definition of HIV/AIDS had been developed through an observational, systematized collection of diseases that were being seen in gay men alone -- women often remained untreated and unincluded due to absence of representation which led to lack of access to healthcare.
When we think about engaging patient communities, there is power we can lend through providing impacted individuals a voice, visibility and the opportunity for input in the systems that care for them. In fact, this same need for representation was discussed in previous issues of my newsletter concerning women, racial and ethnic minorities and the disabled communities.
However, we must remember that affected communities (in or outside of this epidemic) aren't monoliths. Every population is nuanced, diverse, and has different needs and we must hear from them directly to best serve them.
Why watch this documentary?
When we think about important issues like health equity, eliminating disparities and creating access -- all were profoundly impacted through the AIDS epidemic.
It's important to capture the history and stories of these crises that impact the healthcare of our communities so we can learn from these events and use this information to improve in the future. Various policies, research and federal action must align for a crisis to be addressed quickly and effectively. Despite these barriers during the AIDS epidemic, progress was largely moved forward by groups of people coming together in basements to talk about access, availability, representation and demonstration. Imagine what we can accomplish today with our own basement meetings and "bullhorns" at our fingertips!
When I think back to the beginning of the AIDS epidemic, I remember volunteering at student health centers, witnessing firsthand just how much misinformation, panic and despair there was in the general population (at that time without the impact of social media). There was so much we didn't know, but at the very least, we knew it was vulnerable populations being impacted by this epidemic. I found it challenging but necessary to watch the ACT UP documentary, as it was a reminder of how misinformation can impact the speed at which disparities across vulnerable populations are addressed.
This documentary serves as a powerful reflection on addressing population-based illness. It is one of many examples of the power of patient and community stories as an educational tool in healthcare and how groups of individuals in and outside of the community can have a tremendous impact on improving access and outcomes when working together.
Looking Ahead + Final Thoughts
The AIDS epidemic provided our healthcare system and society with valuable learnings on how to destigmatize and better deliver care. It took significant social movement to 1) get a clear understanding of how the virus was spread, and 2) consistently deliver accurate information to the public. Think about what would have happened when AIDS was first identified if there was cooperation, funding and full-blown intervention to treat and prevent it -- these last 40 years would have looked significantly different.
I can't help but draw comparisons to the COVID pandemic and how misinformation and politicization slowed us down at the beginning of the pandemic. We can't walk away from the learnings we gained around the power of media, community and communication in addressing public health crises -- we must catalyze those learnings into meaningful change. When we fail to learn from the past, we're bound to repeat it.
The history of healthcare is vital to the work we do -- knowing and learning from the past is equally as important as thinking about transformation and our future-state. Documentaries like ACT UP show us the need to think about the power of representation and communication, particularly in our ability to respond to future crises and continuing to reduce barriers in healthcare from a regulatory, access and financing standpoint.
I'm curious -- in the comments, let me know the healthcare media that has had an impact on you and that you recommend watching or reading. 🤔
Next month, we'll break down the Biden-Harris Administration's recently announced "Time is Money" initiative and what we should know around its aim to simplify healthcare coverage.
Until next time.
-Ruth 🌸
