RLS Advocacy: One Family Shares Their Story

August 24, 2023 RLS Advocacy: One Family Shares Their Story By Adrianna Colucci, RLS Foundation Administrative Assistant Advocati...

August 24, 2023

RLS Advocacy: One Family Shares Their Story

By Adrianna Colucci, RLS Foundation Administrative Assistant

Advocating for the RLS community and against the barriers posed by existing legislation has always been at the heart of the RLS Foundation (RLSF). Last month, RLSF Executive Director, Karla Dzienkowski, and Administrative Assistant, Adrianna Colucci, flew from Austin, TX to Washington, DC. They were joined by Dr. Shalini Paruthi, dedicated RLSF Board of Directors Chair, and her two sons, Yash and Sanjay, to meet with and educate congressional staff on RLS. Civic engagement such as legislative meetings like this one, is an integral part of the democratic process and helps politicians understand how they can better represent their constituents in policy decisions.

During this July advocacy day, RLS representatives met with Senate and House offices from Texas, where the RLSF office is located, and Missouri, the home of the Paruthi family. This opportunity brought recognition to the Foundation’s legislative priorities to help maintain a presence within federal, state and local offices. The critical issues highlighted within these meetings included increasing research funding, enhancing education and awareness, and protecting access to critical RLS therapies. Most importantly, Dr. Paruthi, Yash and Sanjay, who all have RLS, shared their personal accounts of living with the disease and how it impacts their daily lives.

The morning began in the offices of Senators Josh Hawley (MO) and John Cornyn (TX). Dr. Paruthi is Co-Director of Saint Luke's Sleep Medicine & Research Center as well as an Adjunct Associate Professor at Saint Louis University School of Medicine. Her unique perspective as both an RLS provider and an educator allowed her to speak on the importance of sleep medicine education in the medical and academic setting. Within a medical student’s own schooling, they may receive no more than one hour of education on sleep medicine. She sees the impact of this deficit as a pediatric sleep physician, since it has been shown that RLS is often underdiagnosed or misdiagnosed in children due to an adolescent’s inability to express symptoms, or symptoms being attributed to other conditions such as “growing pains” or the inability to sit still often seen with ADHD.

Yash and Sanjay, Dr. Paruthi’s children who also have RLS, shared their passion for sleep advocacy within congressional offices. For Yash, sleep and RLS awareness is particularly valuable for children and teenagers. As a high school student, he witnesses how sleep deficits impact “grades, academic performance, athleticism, and the ability to focus” in his peers. Good sleep is a necessity for everyone, especially during the developmental years of childhood and young adulthood. Proper diagnosis and effective treatments at a younger age help prevent delays in diagnosis which can lead to exacerbated health issues and increased mental health issues in adulthood. As Yash prepares for his junior year in high school, he will continue to value the importance of sleep, particularly in his planned future career as a doctor.

Rising 8th grader, Sanjay, described how his own RLS symptoms impact his sleep and daytime routines, sometimes causing difficulties in concentration in the afternoon. Sanjay is hyper-aware of the importance of sleep (thanks to his sleep specialist parents!) and notices the all-too-common discussions he has with his own friends over lack of sleep. For legislators, the most compelling narratives come from personal anecdotes, like Yash’s and Sanjay’s. Representatives from the Senate offices were engaged and asked questions to learn directly from their constituents, whose personal testaments provided insight into a disease that representatives had most likely never heard of. By providing a name, a story, and human sentiment to a cause, it allows policymakers to recognize the implications of policy on real people and their communities.

The afternoon focused on meetings with representatives from House Members Michael Burgess (TX), Marc Veasey (TX) and Anne Wagner (MO). RLSF staff continued to emphasize the necessity of funding federal programs such as the National Institutes of Health to help researchers access grants when conducting RLS clinical trials and allocating resources to programs such as the Chronic Diseases of Education and Awareness. Karla Dzienkowski, who speaks with RLS physicians, patients, and even family members daily, emphasized the need for continued research with representatives.

“Here at the RLS Foundation, we are dedicated to improving the lives of those who live with RLS, through advocacy, support, and funding research for improved treatments, ultimately a cure. Sleep disorders such as RLS continue to be misunderstood and underdiagnosed, so our goal here today is to encourage lawmakers to consider a large portion of the population that is overlooked. About 1 in 33 Americans – 3 percent of the US population – has RLS that is severe enough to need daily medical treatment. Sleep plays a critical role in the quality of life, mental health and long-term physical health and well-being. Heightened research and awareness will considerably benefit the constituents [they] represent within [their] own communities.”

Further, legislators were asked to consider RLS when forming policies surrounding prescription guidelines—policies that will address the opioid pandemic while allowing refractory RLS patients to maintain access to critical therapies, including low-dose total opioids. Each day, the RLSF staff hear from those seeking educational resources for themselves, physicians, and family members, often eager to find a way to regain control of their life and their sleep. Even after quality care is secured, unfortunately, many RLS members must plan for the unexpected—their physician’s retirement, stricter medication regulations, pharmacists unwilling to fill RLS prescriptions or stigma surrounding their management plan. These obstacles create an undue burden on a patient community that truly relies on the accessibility of their medications for stability.

For Yash and Sanjay, this was their first experience meeting and speaking with their legislative offices. Sanjay remarked on the sense of accomplishment he felt by gaining “insight into the democratic process of meeting with representatives and the importance of [his] role in advocacy” while using his voice for issues that were important to him. Advocacy can start in small ways, simply by bringing awareness to RLS in your physician’s office or by speaking with family and neighbors. However, a collective voice that echoes within the walls of your representative’s office contributes to a more robust advocacy effort.

Just like Yash and Sanjay, you can use your story to engage with legislators by joining the RLS Foundation for Hill Day in Washington, DC on October 23rd. Hill Day is an opportunity to become part of a unified movement of educators, dedicated to spreading awareness about RLS and helping legislators understand the significance of the policy that they pass. The RLS Foundation staff is excited to meet you and unite our voices on Capitol Hill! If you have questions about Hill Day, visit our FAQ page or email adrianna@rls.org. Register online now.*

Thank you to Phil Goglas and Matt Duquette of the Health and Medicine Counsel, who guided and coordinated meetings with congressional offices. Thank you to all of the representatives who dedicated their time to learning about RLS and engaging with our cause.

*Registration by October 1 for Hill Day is encouraged. This allows ample time to coordinate meetings with congressional representatives in your state and your district.

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