LISTEN: We The Patients Gives Recap of Event in New Podcast
Listen to the podcast by clicking HERE
Representing PWSA | USA and their loved ones with Prader-Willi syndrome, our Community Engagement Specialist, Dorothea Lantz, and one of our amazing advocates from Virginia, Charles Conway, together with their families in tow, joined Patients Rising Now and more than 60 caregivers and patients with chronic and life-threatening illnesses from across the nation this past week in Washington, D.C. for the first ever “We the Patients” 2022 Fly-In. The excitement was palatable and the passion displayed from all who attended was infectious.
Our team representing PWS spent their first day with other patient advocates sharing stories, fielding media interviews, and participating in deep panel discussions, covering ICER (Institute For Clinical And Economical Review), the UFA’s (crucial healthcare legislation), and our political forecast. They also attended policy briefings and small-group workshops to get fully prepared for their congressional meetings. Day one was “topped off” literally from the top of Washington, at the beautiful Hay Adams Hotel, where our advocates spent the evening fielding more media interviews, hearing from and engaging with Janet Woodcock, Principal Deputy Commissioner of the FDA, Senator Mike Braun, and Congressman Ronny Jackson.
On day two, our advocates joined forces with all attendees to divide and conquer. Patients Rising Now attendees took part in more than 50 in-person meetings on Capitol Hill directly with policymakers and their staffs; our PWS advocates (and their families) were represented in nearly half of those meetings! In one meeting with Congressman Bilirakis’s Senior Policy Advisor, PWSA | USA’s Community Engagement Specialist was able to confirm that the Congressman will officially add his name as a co-sponsor to the Safe-Step Act, which would prohibit insurance companies from forcing insured patients to take a drug other than the one specifically recommended by the treating physician!
In addition to spreading awareness about PWS, the unmet needs of our community, and sharing stories of their own personal journeys, our advocates teamed up to encourage lawmakers support on important pieces of legislation that effect the entire rare disease community. Those pieces of legislation include:
Safe Step Act of 2021 (H.R. 2163/S. 464) would ensure safe and efficient access to the best treatments for patients, allowing patients to receive treatments recommended by the doctor, and preventing non-medical based switching of medications by insurers.
The BENEFIT Act of 2021 (H.R. 4472/S. 373) would enhance transparency and accountability at the Food and Drug Administration by requiring proof of patient input in risk/benefit assessments of treatments.
The Improving Seniors’ Timely Access to Care Act of 2021 (H.R. 3173/S. 3018) would prioritize patient access to care by streamlining prior authorization processes.
Food and Drug Amendments of 2022 (H.R.7667) would facilitate efficient testing and lower costs of life-saving drugs.
Pharmacy Benefit Manager Transparency Act of 2022 (S.4293) would hold drug supply chain middlemen responsible for practices that raise the cost of pharmaceuticals.
HELP Copays Act (H.R.5801) would lower out of pocket costs for patients.
Protecting Health Care for All Patients Act of 2022 (H.R. 7634) would eliminate the use of discriminatory health metrics in federal programs. This was an incredible opportunity for our PWS community to begin the journey of creating a presence on Capitol Hill and our advocates are thrilled with the responses they received. PWSA | USA is excited to take our advocacy to the next level this September when we have OUR OWN, first ever D.C. fly-in! You can learn more about the D.C. Fly-In and submit an application to attend at (link).
Share this!
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.