At the BIO International Convention recently held in Philadelphia, PA, we talked with Christina Hartman, Senior Director of Advocacy & Policy for the EveryLife Foundation for Rare Diseases about some of the efforts the non-profit organization is doing to reduce the time to diagnosis, including their advocacy work focused on newborn screening.

Hartman said, “last year, we added to our mission the ending of the diagnostic odyssey which is an average of five to seven years for the rare community.” To that end, the EveryLife Foundation has made it a legislative priority in 2019 to ensure that the Newborn Screening Saves Lives Actis reauthorized.  

“This is the bill that provides the authorization for the newborn screening program so it funds and allows for the recommended uniform screening panel which is the group of experts at HRSA, the health resources and services administration,  that decides which diseases to screen for and makes those recommendations to the States,” stated Hartman.

Hartman noted, “One of the challenges we found is once the recommendations are made at the federal level they’re not automatically implemented in the States. So EveryLife is working also at the state level to ensure that those recommendations are implemented.”

Hartman added, “The  newborn screening program is critical… we also see it as just the very beginning of what we need to do to really end the diagnostic odyssey. We have to be able to catch these diseases earlier.”

In addition to shortening the time to diagnosis via newborn screening, EveryLIfe Foundation is also working on ways to help various payors, policy makers, and medical professionals communicate more easily. Hartman used her own daughter as an example of it taking over a year to get properly diagnosed. Hartman said, “I’ve worked for the federal government for Health and Human Services. I  have been working with scientists and clinicians my whole life and it still took us a year to get a diagnosis and the real bottleneck was the insurance company.”

For more information, visit EveryLifeFoundation.org.

 

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