Six of our dedicated PWSA | USA Advocacy Ambassadors (Dorothea Lantz, Elaine Towle, Jessica Kempa, Sheri Mills, Michelle Torbert and Jennifer Garzia—also joined by her family, including her son Rocco who is 20 years old living with PWS) traveled to Washington, D.C. last week to take part in Patients Rising’s 4th annual “We the Patients” Fly-In — the organization’s largest and most impactful event to date. Alongside 86 patient advocates from 27 states, our team helped bring a powerful rare disease voice to 110 Congressional meetings, including nine with sitting members of Congress.
The Ambassadors, each representing a loved one living with Prader-Willi syndrome (PWS), shared personal stories and policy priorities to help lawmakers understand the urgency of supporting people with rare diseases and disabilities. Their presence ensured that the unique needs of the PWS community were part of the national healthcare policy conversation.
Legislative Push: Reform That Reflects Real Lives
At the heart of this year’s fly-in was a unified call for Congress to include two critical healthcare bills in the upcoming budget reconciliation package:
- The Protecting Healthcare for All Patients Act (QALY Ban): This bill would prohibit the use of Quality-Adjusted Life Years (QALYs) in federal healthcare programs — a metric that often devalues the lives of people with disabilities and rare diseases like PWS.
- The ACCESS Act: This legislation would open Health Savings Accounts (HSAs) to 5 million low-income Americans by redirecting a portion of their Cost-Sharing Reduction (CSR) subsidies. For families facing high medical costs, including many in the PWS community, this would provide critical flexibility.
A Broader Agenda: Fighting for Patients First
In addition to the QALY Ban and ACCESS Act, our ambassadors joined Patients Rising in advocating for a broad, patient-centered policy platform that included:
- Rare Pediatric Priority Review Voucher (PRV): Accelerating access to treatments for children with rare diseases
- HOPE Act: Expanding eligibility and contributions for HSAs
- PBM Reform & DRUG Act: Restoring affordability and transparency in prescription drug pricing
- DOC Access Act: Reining in harmful dental and vision benefit manager practices
- HealthTech Investment Act: Supporting Medicare reimbursement for AI and next-gen devices
- HSA Expansion for All Americans
These proposals reflect the values our PWS families fight for every day — access, equity, and respect for lived experience.
Elevating PWS at the National Level
Our Advocacy Ambassadors participated in a robust policy briefing, opened by Alex Aramanda, Principal Deputy Director for Medicare, and attended a high-profile Congressional Reception at the U.S. Postal Museum. They were joined by a number of supportive lawmakers, including:
- Rep. Kat Cammack (R-FL), who made a major announcement: she officially filed the QALY Ban bill with Rep. Kevin Hern (R-OK)
- Rep. Nanette Baragán (D-CA)
- Rep. Yvette Clarke (D-NY)
- Rep. Marianette Miller-Meeks (R-IA)
- Rep. Blake Moore (R-UT) and others
Later that evening, our advocates even caught up with Rep. Buddy Carter (R-GA) and Rep. Diana Harshbarger (R-TN) at the Congressional Baseball Game.
Honoring Advocacy Champions
Two Senators were recognized for their patient-first leadership:
- Sen. Tammy Baldwin (D-WI): Patient Empowerment Award
- Sen. Markwayne Mullin (R-OK): Patient Advocacy Champion Award
Both have been key voices in efforts to bring transparency, affordability, and innovation to the healthcare system — all priorities shared by the PWS community.
What Comes Next
As the Senate Finance Committee drafts its reconciliation package, focus areas like Medicaid integrity, waiver access, and improper payment reforms are taking center stage. PWSA | USA will continue to advocate for reforms that support medically vulnerable individuals and push back against systems that keep families stuck on waitlists or without adequate care.
We are so proud of our Advocacy Ambassadors for standing up for PWS families nationwide. Their voices, experiences, and leadership helped elevate our mission and remind lawmakers that real lives — not cost formulas — should shape healthcare policy.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.