Our Patient Advocacy during the Covid-19 Pandemic's Uncertainty

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

Over the last two years patient advocacy replaced face-to-face meetings with Zoom. It substituted highly-effective legislative fly-ins on Capitol Hill (and state legislatures) with unimpressive Twitter storms. And it left many organizations scrambling to find their place in this new world of uncertainty. The ADAP Advocacy Association isn't immune from the realities surrounding the Covid-19 pandemic, especially since we represent an immunocompromised constituency.

Photo Source: Hearts in Service Blog

In March 2020, we suspended face-to-face advocacy literally as we were preparing to host the year's first HIV/AIDS Fireside Chat in Atlanta, Georgia. Our organization opted not to host Zoom meetings because the Fireside Chats have a sense of intimacy about them, but also because we quickly learned that many stakeholders were experiencing what was labeled "Zoom fatigue" at the time. That decision carried into last year, too. Aside from a series of the virtual patient support meetings held both in 2020 and 2021, we've sat (in)patiently waiting for this pandemic to subside.

Fortunately, some of our national partners stepped-up their advocacy game and hosted extremely impressive virtual conferences. Among them, HealthHIV and its SYNChronicity 2020 (SYNC 2020), and the Biotechnology Innovation Organization (BIO) and its 2020 Patient and Health Advocacy Digital Summit. The ADAP Advocacy Association opted to fund scholarships for advocates and patients living with HIV/AIDS to attend these events. 

But we're optimistic about returning to 'normal' this year!

The ADAP Advocacy Association has targeted June 2022 for the resumption of the HIV/AIDS Fireside Chats, and other patient advocacy events. That will, of course, largely depend on the ever-changing circumstances on the ground, evidenced by what is unfolding before our eyes with the Omicron variant. It is our goal to host a Fireside Chat in Atlanta over the summer, and then Chicago in the fall.

In the meantime, we will continue to focus on the intersection between HIV/AIDS and Covid-19. In 2020, we awarded Covid-19 community grants to community-based, nonprofit organizations addressing the pandemic's impact on marginalized communities living with HIV/AIDS. In 2021, we launched #YourVaccineIsWaiting public awareness campaign targeting marginalized groups living with HIV/AIDS. This year, we will invest more of our resources into monitoring how Covid-19 is impacting our community, as well as encouraging immunocompromised populations to get vaccinated...and boosted! Their lives depend on it, literally.

Finally, we're excited to welcome our new ADAP Blog Guest Contributor, Ranier Simons, MHI. Ranier prides himself on data science capabilities to drive better healthcare. He recently earned his Master of Healthcare Innovation Health Informatics from Arizona State University - Edson College of Nursing and Health Innovation.

Patient advocacy, as we knew it, came to a screeching halt in March 2020. Then in 2021, patient advocacy experienced a roller coaster ride of ups and downs. It is too early to know what 2022 will bring, but the ADAP Advocacy Association remains optimistic about the future of the patient advocacy environment, and we stand ready to respond accordingly. We look forward to you joining us in this endeavor, too!

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.