By: Claire Jarvis, PhD
Healthcare providers, industry, elected officials, and patient advocates came together virtually September 22nd for Georgia Bio’s inaugural Patient Advocacy Summit. The ongoing COVID-19 pandemic has highlighted long-standing public health disparities that result in an inequitable healthcare experience across the patient community. The summit’s speakers argued that these disparities will only be addressed through a commitment to social justice from industry leaders and meaningful engagement from patients, the consumers.
Citing projected demographic shifts over the next decade that will see an increase in healthcare demand by racial and ethnic minorities, Gretchen Wartman, Vice-President for Policy and Program at the National Minority Quality Forum delivered a strong message to biotech industry stakeholders in her keynote speech: “failure of the biotechnology industry to realign your research and marketing processes to include historically marginalized populations will have a seismic effect on the viability and profitability of your members.” She urged all attendees to prioritize and call-out social injustices as part of their healthcare agendas.
Bringing underserved communities into clinical trials
With the novel coronavirus at the forefront of everyone’s minds, invited speakers shed light on the chronic disease community’s perspective navigating the pandemic. Speakers brought the audience decades of experience advocating on behalf of patients with lupus, sickle cell anemia and autoimmune diseases. All speakers discussed how their organizations have had to adjust their strategy and mission to address the unique public health challenges posed by COVID-19.
Linda Blount, CEO of Black Women’s Health Imperative, and Jayne Morgan, Director of Innovation at Piedmont Healthcare, discussed the ways current COVID-19 research marginalizes Black patients. Despite COVID-19 disproportionately affecting Black and Brown communities, in its preliminary dosage-determining clinical trials, Moderna’s RNA vaccine was only tested on 2 Black people out of a total of 45 people enrolled.
There remain barriers to inclusion and participation, such as distrust of medical research and trial exclusion criteria that disproportionately exclude participants of color. However, Morgan argued “the number one reason Black and Brown people don’t participate in clinical research is because nobody asks them.”
To address racial disparities in clinical research, Blount urged trial organizers to collaborate with Black physicians, who serve 80% of Black patients in the US but remain under-represented on trial leadership and design teams and serving as clinical trial Principal Investigators.
Navigating a public health crisis
How must advocacy organizations adapt in the era of COVID-19? Despite the feasibility of traditional advocacy tactics, there is space for innovative solutions that can sustain influence in the legislative conversation. Representative Kim Schofield of the Georgia State Assembly emphasized the importance of social media and the opportunity tools like it have to expand the traditional audience, reach and demographics of our patient advocacy communities.
Howard Mosby, Treasurer of HEAL Collaborative advised advocacy groups that despite COVID-19 “taking oxygen out the room” they should continue pushing their main agendas. He also noted that despite the fact everyone was readily accessible on the internet, people risked getting “Zoomed out” by spending too much time in online meetings. We must recognize the reality that there is a consumption bandwidth issue. There’s an unprecedented level of competition for our audience’s attention.
Georgia Bio invites stakeholders interested in shaping the public health conversation and combating social injustice to join the new Patient Advocacy Alliance. The Alliance will establish a meaningful connection between patient groups and the Georgia life science industry to help drive policy decisions on critical healthcare issues. Members can attend roundtable discussions, connect with industry partners and benefit from shared patient advocacy resources.
Patients wishing for their voice to be heard are always invited to attend our meetings, enlighten us with your experience, and if comfortable, submit video testimonials about your journey. We respect patient’s needs for privacy and appropriately share these approved stories with attendees at the Georgia Bio Innovation Summit in November ensuring patients are always at the center of the conversation. Please get in touch with GaBio with any suggestions or questions.
Missed the event? View recordings on our event website.