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Sign on to Support Bill H.R.4144, the “Ending the Diagnostic Odyssey Act.”

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Ending the Diagnostic Odyssey in Cures 2.0

On April 24, 2020, Rep. Upton and Rep. DeGette, two of the legislative leaders behind “21st Century Cures” have released a Cures 2.0 concept paper. In response to their invitation for additional feedback on coverage for genome sequencing (page 11), we have drafted this letter to let Reps. DeGette and Upton know we support putting the sequencing bill text into Cures 2.0.

If your organization would like to sign onto the letter, please email Vilma Whittier by May 29, 2020. 

Every voice counts!


H.R. 4144 Introduced in the House of Representatives

H.R.4144 - Ending the Diagnostic Odyssey Act of 2019 is a bipartisan legislation introduced by Rep. Peters (CA) and Rep. Shimkus (IL) on August 2, 2019. Here are some FAQs about the legislation, and here is a press release from the bill sponsors.

This legislation would allow states to conduct a three-year pilot program to increase the Federal Medical Assistance Percentage (FMAP) rate to provide Whole Genome Sequencing clinical services for children on Medicaid with a disease that is suspected to have a genetic cause. Read a blog post from Francis Collins on the power of Whole Genome Sequencing for this population, and a post from Rady Children’s in San Diego in response to a similar state effort called, “Project Baby Bear.”

Nearly 80% of all rare diseases have a genetic cause, and half of rare disease cases impact children. The average diagnostic odyssey can last from anywhere from five to seven years. You can imagine the anguish of parents watching their children suffer, watching them endure one test after another. The toll this takes on the family, emotionally and financially, is a great travesty in an age where comprehensive genetic screening is available and affordable. Whole Genome Sequencing will alleviate an enormous part of a huge burden these families carry.

Knowing the genetic cause of a disease can mean an actionable diagnosis – leading to changes in treatment and management of the condition, prevent additional unnecessary testing, and help families find a support structure via other families and organizations. This has utility and benefits for the child, the family, and society at large. And when there is no treatment at the ready, just having multiple kids diagnosed early on, with the hope of gathering data on their condition and those of other kids like them, accelerates treatment development.

Introducing H.R. 4144 in Senate

On January 6, 2020 U.S. Senators Doug Jones, Susan Collins, Martha McSally and Bob Menendez introduced the Ending the Diagnostic Odyssey Act of 2019 in Senate. Read their joint press release hereMany organizations have previously signed onto our letter of support for H.R. 4144. On behalf of all organizations supporting this bill, we have sent a thank you letter to the Senators to commend their leadership on this important legislation.

This legislation has the potential to build upon the promises of the “21st Century Cures Act,” furthering the emerging field of precision medicine, and lowering health care costs by facilitating better diagnoses, and the consideration of preventive measures.

Ending the Diagnostic Odyssey in Cures 2.0

You may have seen that Rep. Upton and Rep. DeGette, two of the legislative leaders behind “21st Century Cures” have asked for input from stakeholders and experts on a “Cures 2.0” package. We have sent this letter to both Representatives asking to consider including the H.R. 4144 bill in their legislative package. We think the bill would be a natural fit given the desire to modernize coverage and access to life-saving cures. Access to cures starts with a diagnosis and encouraging states to cover powerful diagnostics like Whole Genome Sequencing will mean more answers for more families. 

Again, please reach out to your congressperson here and let them know your story and why this bill matters - every voice counts!

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