Generation Patient recently hosted a community convening titled, “The Patient Voice: Centering Independent Patient Advocacy”, with support from the The Greenwall Foundation through its 2025 Bridging Bioethics Research & Policymaking Grant. The roundtable discussed an important question in healthcare advocacy: What does truly patient-led policy look like? Patient-led policy means ensuring that patients have a direct role in shaping the quality, cost, and access of the care they receive, because patients are the ones most impacted by these decisions.
During the discussion, our Policy Manager, Alexander Naum, explored the growing prevalence of industry influence within patient advocacy spaces. These realities raise critical questions about independence, representation, and whether advocacy efforts fully reflect patient priorities or the interests of industry stakeholders.
At Generation Patient, we believe patient voices must remain at the center of healthcare policymaking.
Navigating your own care as you become an adult and going to appointments on your own can be daunting. This transition is a pivotal stage in a young adult's healthcare journey.
Our first roundtable in partnership with the Lucile Packard Foundation, Caroline Walsh shared a few of her own challenges during this transition:
💙 Not having guidance or tools for mental health
💙 A hindered sense of independence in managing her care
💙 Having to figure out how to log her chronic pain on her own
Our discussion was co-led by Caroline, a young adult patient from our community with experience navigating this transition, and Susan Shanske, MSW, Director of Transitional Care Support at Boston Children’s Hospital.
See the full discussion at: /roundtables
Last month, Generation Patient was honored to participate on a panel at the Family Voices Leadership Conference to discuss the challenges facing young adult patients living with financial instability. During the panel, our Policy Manager, Alexander Naum, spoke about the need for multisystem approaches to address the poverty trap many young adult patients experience, including barriers to employment, housing, adequate nutrition, and access to public benefits.
He also challenged us to rethink why income and ability to work are so closely tied to healthcare access, emphasizing that healthcare should be treated as a human right guaranteed to all.
Alexander highlighted the importance of change at every level: from ensuring healthcare providers engage in continuous education to confront biases toward patients with hard-to-diagnose conditions, to building communities and physical environments that empower young adults to reach their highest potential regardless of medical condition, financial status, race, sex, gender, sexuality, or ability.
“I really think that people with firsthand experience have the knowledge to create the most meaningful change.” During our recent town hall on Advancing Systems Change for Young Adults with Chronic and Rare Conditions, young adult patient advocate Peyton Miles shares why young adult patients must be at thee forefront of the conversation when addressing systemic issues within the healthcare system.
The full town hall is now available on our YouTube channel! Thank you to the Lucile Packard Foundation for Children’s Health for their support of this roundtable project. For more information, visit generationpatient.org/roundtables
Thank you to The Greenwall Foundation for profiling our work to equip congressional staff with evidence-based tools for ethically and effectively engaging with patient advocacy groups!
As a recipient of the Foundation's 2025 Bridging Bioethics and Research & Policymaking Grant, Generation Patient is working to empower independent patient advocacy to drive meaningful health policy reform. Since beginning our work under this grant, we have developed educational materials that break down the importance of independent patient advocacy and the risks of out-sized industry influence, shared case studies for demonstrating how industry influence in policymaking can play out and impact patients, and created a guide for vetting a patient organization's independence from industry influence.
We are grateful for The Greenwall Foundation's support of our work and commitment to empowering independent patient advocacy.
Patents affect when young adult patients access the medications they need and at what price. Drug companies are increasingly using anticompetitive gamesmanship to build patent thickets and delay affordable access for American patients. Terminal disclaimers now appear on nearly 70 percent of new Orange Book drug patents, up from 36 percent two decades ago. These patents are routinely asserted in court to delay generic competition.
Read the Generation Patient report on how patent thickets delay access to affordable medicines for young adult patients: /blog/patent-thickets or at the link in our bio.
The Eliminating Thickets to Increase Competition (ETHIC) Act (S. 2276 / H.R. 3269) is a bipartisan, narrowly tailored response to a problem clearly grounded in data and patient experiences. The evidence shows why Congress should pass it.
Chronic illness can feel incredibly isolating, especially when the people around you don't quite understand what you're going through.
There's where peer support comes in.
It helps young adults navigate unpredictability, find connection in the middle of it, and hold onto hope when it feels out of reach.
Check out our website (or the link in our bio) to sign up for a meeting this month.
Join one of our Peer Support Groups this month! We offer 6 to 8 peer-run groups each month for young adults with chronic conditions 💜
Swipe for a description of each peer support group. Head to the link in our bio or /virtual-meetings to register!
As we transition into the warmer months, listen to what your body needs and be gentle with yourself. ☀️
For many of us living with chronic and rare conditions, heat can feel uncomfortable, trigger flares, fatigue, and symptoms that demand you slow down whether you planned to or not. And that's okay. 🤍
Sometimes care looks like laying down, drinking water, and avoiding the sun if you can. Give yourself permission to do less this season.
Drugmakers are increasingly offering discount coupons to drug-specific telehealth visits. While drugmakers and telehealth platforms argue that these visits benefit patients by expanding access to treatment, health policy experts are concerned that this practice can encourage patients to adopt a drug-first approach to care.
Experts share further concern that these telehealth visits fail to dive deeply into patient care needs and ignore potential non-drug or other drug treatments, as the visits are focused primarily on the drugmaker's specific medication. As young adult patients are disproportionately less likely to have access to health insurance or high-quality insurance, they may be particularly vulnerable to these types of appointments, which may be cheaper than a typical copay.
Head to the link in our bio for the full story.
A visit to the doctor can be stressful and uncomfortable, especially when it's a new physician.
Our community uses items like these to feel a bit more comfortable:
💚 Favorite drink and snack
💚 Headphones
💚 Comfy clothes
💚 A book
💚 Fidget toys
What are your favorite things to feel comfortable?
We're thrilled to announce the publication of Ableism, Ageism, and Other Biases in Healthcare: The Impact on Young Adult Patients, authored by Jemma-Tiffany Rosewater with the support of Sneha Dave, Meg Didier, and Katherine Melton. This proceedings publication is a result of our roundtable on dismissal, ableist, and ageist misconceptions of young adult patients in healthcare.
During this roundtable, young adult patients and clinicians discussed consequences of ageism and ableism in healthcare, highlighting three key themes: stereotypes and dismissal, diagnostic delays and misdiagnosis, and the power imbalance between clinicians and patients. Contributors pointed to several practical ways to address these biases in healthcare, from clinician adoption of explicit uncertainty scripts to embedding care navigators in the healthcare system to support young adult patients.
We are grateful to the Lucille Packard Foundation for Children's Health for their support of this roundtable series and roundtable proceedings.
You can read the full proceedings at the link in our bio.
