PWSA | USA Advocacy in Action: Spotlight on Capitol Hill

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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).

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