Utah HB435 Passed The House of Representatives!
Update: Senator David Buxton is supporting HB435 in the Senate
March 5th, 2019 at 7:30p UPDATE: HB435, Undiagnosed Children Insurance Coverage, passed the Utah House of Representatives unanimously tonight!! Thank you Representative Steve Eliason for your support of the bill! Thank you to the entire Utah House of Representatives! This is huge for our undiagnosed rare disease community! Thank you to everyone involved! More to come!
March 5th, 2019 at 6:35p Update: “This bill goes to the full House tonight. Please contact your legislator via text, phone or email. Thanks!” – Representative Steve Eliason
March 5th, 2019 at 6:30p Action Alert: Utah HB435 passed committee and is going on to the House!
HB435, Undiagnosed Children Insurance Coverage, requires the state Medicaid program and Public Employees’ Benefit and Insurance Program to cover exome sequence (WES) testing. This bill could truly make a difference in the diagnostic odyssey for many in our community.
“Letters of support sent to your own representative are ideal, as the bill passed the House Health & Humans Services committee with favorable recommendation, and will next be voted on by the full House. Below is a sample letter.” – Utah Rare Action Network
It is key that letters be brief, direct, and courteous:
Dear Sen. [ Name ],
My name is [ Name ] I live in [ city ], Utah. Please support HB435. This would mean so much to me and my community because often times, we are denied this important diagnostic screening that could lead to effective treatment for our Rare or undiagnosed diseases.
While Rare diseases individually are unique, together 1 in 10 people have one. We need this bill to help end the years and years of suffering without a diagnosis or treatment while seeking answers. This test could shorten the diagnostic odyssey, which can open new treatment options and lead to better management of care for patients. This could bring hope and relief to thousands.
Thank you for your consideration,
[Your Name]
[City], UT
“Tyler, Noah & I had the most amazing privilege of being invited to testify in support of a House Bill for undiagnosed children insurance coverage amendments to require insurance companies to pay for whole exome sequencing. One in a Million was shown at this committee. Can I just say my heart swells with gratitude to Dr. Lorenzo Botto, the University of Utah, The Penelope Program and all who were involved in this beautiful process. And a very special thank you to Representative Steve Eliason for sponsoring the bill!” – August Teuscher
Representative Steve Eliason & August Teuscher speaking in support of HB435, making exome sequence genetic testing accessible to families in Utah. Thank you to the House Health & Human Services Committee for favorably recommending the bill on its way to the full House.
Thank you to the Teuscher family for advocating on behalf of HB435, making exome genetic testing accessible for more families in Utah!
About One in a Million
A special thank you to Dr. Lorenzo Botto, the entire team in The Penelope Project and the University of Utah Health for your continued support of our family, the Teuscher family and all of the families suffering in a diagnostic odyssey and living in the world of the unknown. We truly appreciate your hard work and dedication to our community.
University of Utah Health is proud to present One in a Million, an original short documentary. To learn more and to support rare and undiagnosed disease research, visit oneinamillion.uofuhealth.org. The film tells the story of Tyler, who lost his ability to walk, see, and hear by the time he was 10. The cause remained a mystery until U of U Health scientists searched his DNA for clues. What they found led to a discovery that changed the life of one remarkable boy. One in a Million was directed by acclaimed independent filmmakers Ross Kauffman and Jeremiah Zagar and co-produced by executive directors Geralyn Dreyfous and the Kahlert Foundation. The movie premiered at a U of U Health-sponsored panel during the 2019 Sundance Film Festival.
The Szajnuk family in April, 2018.
ABOUT RUN
RUN stands for the Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, and healthcare providers who share the same mission and vision: To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.
Contact information:
Gina Szajnuk (Zanik)
Co-founder and Executive Director
E: ginaszajnuk@gmail.com
C: (310) 883-4353
To Read: The Szajnuk Journey
Learn more about #UndiagnosedDay on April 29th
