Chronic illness advocate Sneha Dave started the nonprofit organization Generation Patient when she was a college student, seeking to create opportunities for young adults with chronic conditions to access peer support and community, and advocate for systems-level change. She received the American Association of People with Disabilities’ (AAPD) Paul G. Hearne Emerging Leaders Award in 2020, which has allowed her to expand the organization’s reach.
Dave applied to the Hearne Award during her senior year at Indiana University, where she created her own major in Chronic Illness Advocacy. Dave understands firsthand how important it is to be part of a community of people with chronic illnesses and disabilities.
“Growing up, I felt very isolated living with a chronic illness, and even the way that my chronic illness was addressed is often through the lens of the medical system. I felt like when I entered the disability community, it was the first time that I felt like I didn’t have to keep fighting against my illness or fighting against my disability, and that I was just accepted, and I was allowed to just live and thrive as I was,” she said.
Generation Patient fills a void in the disability space by creating that kind of space for young adults with chronic illnesses and ensuring the chronic illness community is integrated into the disability community.
“Generation Patient really focuses on young people with oftentimes non-visible disabilities who are entering school, work, having to be financially independent for the first time, and so the way that we work as an organization is trying to provide direct support to our community, to help build community and reduce isolation that comes with living with a chronic illness at this age, but also look at some of the systemic barriers that are creating challenges for our community to be able to thrive and fully be part of society with disabilities,” she said.
The Hearne Award was one of the first significant sources of funding Generation Patient received. Dave explained the substantial impact the award had on her and the organization.
“To have received the Hearne Award meant so much to me individually as I was learning and finding myself within the disability community, but it also meant so much to Generation Patient, to able to grow our impact and really understand how we could impact more young adults with chronic medical disabilities beyond Indiana or specific states, and think through how we could expand our work nationally and now internationally,” Dave said.
Dave expressed her gratitude for the people she met and the knowledge she gained as a result of receiving the award. She said she appreciated gaining “an incredible network of other awardees to lean on and look to for their projects, because they’re all so different but really have that throughline of impacting and including people with disabilities in all aspects of programming, which is really, really exciting.”
Since Dave received the Hearne Award, Generation Patient has facilitated 650 peer support meetings and has published research on the importance of peer support.
“It is our goal to start to increasingly build the evidence base for the value of peer support, not just as a service, but as an intervention in young adults with chronic medical disabilities, because we believe in peer support as a way to promote acceptance and management of a chronic illness,” Dave said.
As is true for all of Generation Patient’s efforts, the research is done by and for young adults with disabilities.
“We’re really excited because all of those publications have a first author as a young adult with a disability, which is really trying to change the model of what research and peer review publications look like, to have our community’s lived experience really drive what research questions and what researchers should be looking at,” she said.
Along with facilitating opportunities for peer support, Generation Patient also engages in policy advocacy. The organization has three main focuses in its advocacy work: clinical trial representation, ensuring that trials include young adults with chronic medical disabilities; reforming the patient system so that therapeutics can become more affordable; and increasing oversight of pharmaceutical and telehealth advertisements on social media.
Dave highlighted how Generation Patient worked on the bipartisan Protecting Patients from Deceptive Drug Ads Online Act in the 119th Congress, which regulates the advertising of prescription medicines by influencers. The bipartisan bill was introduced by Senator Dick Durbin (D-IL) and Roger Marshall (R-KS)
“That was really powerful, because this was an issue that our community of young people with chronic medical disabilities were seeing as a problem and not seeing lawmakers and agencies take adequate action. Working on this legislation, recommendations for it, was really meaningful, because it came from our community of young people most impacted by the issues,” she said.
Dave hopes to continue supporting other young people with disabilities in their advocacy efforts.
“I think having led Generation Patient now for so many years, I’m really excited about empowering and ensuring that the next generation of young people with disabilities has a platform and resources to be able to continue to respond to the environments and systems that are not working for them and for us,” she said.