JOSHUA LAVRA: Sneha! Hi! To get us started, how would you introduce Generation Patient to someone who is totally new to your work?

SNEHA DAVE: Generation Patient is an organization that represents young adults with all different chronic conditions—lupus, arthritis, Crohn's disease, sickle cell, hemophilia. Our work spans everything from peer support groups to improve the mental health outcomes of young adult patients to influencing health policy. This includes things like advocating for age data disaggregation in clinical trials, increasing oversight on pharmaceutical ads on social media, and reforming the patent system to increase access to biosimilars and generics, which are cheaper versions of high-cost therapeutics. 

We also run a variety of leadership programs, including a Scholars program where we train young adult patients to learn about health policy and be part of driving legislative reform. 

JOSHUA: I know you’re also focused on building the evidence, base, right? I think that's fascinating—and something people might not be aware of a need for.

SNEHA: That’s right. We’re doing a lot of work identifying research questions and conducting research to expand the evidence base for young adults with chronic conditions. One example is that we are principal investigators for an award through the Patient-Centered Outcomes Research Institute to engage young adult patients in patient-centered clinical effectiveness research for peer support interventions. Right now there's very little research on our community, which is a challenge for building an advocacy case for young adult patients. 

In the healthcare field, there’s not even a consensus definition on who the young adult patient is by global regulatory bodies. So that's a gap that we're trying to fix globally right now. It's one of our big priorities in 2025.

JOSHUA: Incredible. I am always so impressed with the breadth of work you do! It might be hard to choose, but is there one accomplishment you’re particularly proud of?

SNEHA: I would say our peer support work is really the bedrock of everything we do at Generation Patient, because we are entirely young adult patient-led. And while the immediate value of community and connection is inherently important, we also believe strongly in the ripple systems change of what we can accomplish when we build community. We've done over 600 peer support meetings over the last few years, and that consistency has been so important. We do six to eight peer support meetings per month, and probably 90% of them reach capacity every time. That organic community is something that I'm really proud of and something our team has worked very intentionally to create an atmosphere where everyone can come as themself. 

We don't believe in peer support as a replacement for traditional mental health services, but I do really believe in the power of our peer support intervention for reducing isolation, loneliness, and depression in a cost-effective way. This is why I think building the evidence base for it and being able to continually improve the model is so, so important.

We just finished an evaluation with Dr. Katherine Melton from Boston Children’s that we hope will help create more of the evidence base for peer support—showing that it impacts both short and long-term health outcomes. Some of our community members have shared that it has been life saving.

JOSHUA: And you’re expanding internationally, right?

SNEHA: Yes. This year, we are expanding our peer support model to South Asia and East Africa with our amazing community partners. We've gotten interest over the last couple years, but didn't have the capacity to manage it. Now we have some really awesome partners in both regions, so we can make it happen. With our international work, we try to take a decolonized approach—using our resources to enable other communities to be able to drive their own support network. 

JOSHUA: That thoughtfulness says a lot about how you've approached this work in general. Would you be open to sharing how you got started with Generation Patient?

SNEHA: Sure. I've been building Generation Patient for nearly 14 years, so I have very much grown up with it. I'm 26 now, but I started the idea for it when I was 13, together with my late friend Cory, who passed away with osteosarcoma and Crohn's disease. Cory was one of the only people I knew growing up with inflammatory bowel disease, which I was diagnosed with when I was a little under six years old. 

I had a pretty severe illness journey in childhood. I was just too sick to go out for a period of about five years—from middle school to the middle of high school. When I met Cory we started what was called the Crohn's and Colitis Teen Times—a newsletter to connect other young people with IBD. 

As I was progressing throughout high school and going to college, I realized that a lot of the challenges I faced were not disease-specific, and that the greater gap was this factor of age-specific support. No one I knew was thinking about this transition age group in an intentional way that would account for the physiological changes that are happening at that time in your life and the practical ones—when you may be pursuing higher education, relationships, or independence for the first time.  

I went into it just trying to find answers for myself, but it grew organically and with the support of my teammate, Sydney, who is also a young adult patient. We started with events in Indiana in college, just to bring together young adults with all different chronic and rare conditions. Then we expanded to Texas, California, and North Carolina. When the pandemic hit, we had to cancel an event at the last minute, but quickly shifted to a fully virtual model, which allowed us to reach so many more people—including people with energy-limiting conditions who cannot leave their homes. 

Personally, I still benefit from the peer support meetings, even though I’ve lived with this illness for 20ish years. While my condition is not as active anymore, there is so much to process and the way it can impact identity. 

JOSHUA: The fact that you’re still getting a benefit from it is amazing—and shows how powerful this model of support is. 

I’d love to learn a bit more about your research and evidence work—can you share an example of the impact you’re having there?

SNEHA: Of course. In 2023 we conducted our Roundtable on Young Adults with Inflammatory Bowel Disease (our only disease-specific month). Each month, we brought together researchers, healthcare professionals, patients, and care partners. The goal was to identify some of the research gaps that exist—everything from sexual and reproductive health for young adults with IBD to clinical trials and peer support interventions. Out of this roundtable series, we had eight peer-reviewed publications come out—partnering with researchers to fill these major gaps that are inhibiting our community from thriving into adulthood. This year we’re replicating that model for all chronic conditions, with support from the Lucile Packard Foundation for Children’s Health—which is really exciting! 

JOSHUA: Wow. It’s remarkable what you’ve accomplished. Over these last 13 years, I’m curious what headwinds you faced

SNEHA: Well, one thing relates to our core values. We don't take private healthcare industry funding—including from the pharmaceutical industry—because we don’t want our priorities to be influenced by their interests. That makes us an anomaly in our space, and it’s tough because this funding is not only financial support but also pathways to be seen. We got a lot of pushback early on from advisors on declining that funding. But the most important thing for me is that the integrity of our work and what we choose to focus on is not compromised in any way. I would never want us to avoid or be silent on topics that are critical to our community because we fear our funding being cut, especially when it has to do with life-saving medications. 

JOSHUA: Yes. Putting a stake in the ground. It speaks to the way you continue to approach this work—particularly putting community first.

SNEHA: Absolutely. It's been a collective decision by our community to ensure it feels like a truly authentic space. 

JOSHUA: Authentic. Communal. More of what we need going into this year. 

As we're a few months into the new year, I'm curious what’s coming up for you in 2025?

SNEHA: We want to explore more international work—especially when it comes to clinical trials. Other countries are a lot more progressive in the way that they approach data and clinical trial infrastructures, so we have a lot to learn there. We also want to help develop a global consensus on who the young adult patient is—a critical step for better research and for understanding this demographic better. And, we also want to do more mutual aid work to provide direct financial support to our community, which we started through our grocery grants. This is where we give out a small amount of funds to our community each month to afford basic necessities such as groceries. There are moments when people in our community are, for example, transitioning between insurance and then can't afford basic things like food and necessities. We want to be more responsive as a community to these  types of needs.

JOSHUA: Mutual aid is a really powerful tool—especially given how deeply connected you are to your community. As always, I am so grateful for this work that you are doing, Sneha. There is so much compassion in your approach.

SNEHA: Thank you.

If you enjoyed this conversation, check out our conversations with all five young leaders from the RTYPF Steering Committee.