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Dr. Cheryl Hannah Advocates for Science-Driven Newborn Screening

 

Cheryl Hanna, MD, a retired pediatric endocrinologist, has been on OPS’s Advocacy Committee since its inception in 2017. At that point, Dr. Hanna had been retired for three years and was still teaching at OHSU, but wasn’t seeing patients anymore. She said that learning legislative advocacy skills seemed like a way to contribute on the state level.

“I have a strong interest in helping kids who don’t have many people on their side, and kids who don’t have a voice,” she said. “I thought that maybe I could learn to have a voice. OPS has made it easy to be part of the advocacy group. There are shining examples of people on this committee who’ve made big differences in kids’ lives.”

Dr. Hanna has more than 35 years of experience working with the Oregon Health Authority’s Newborn Bloodspot Screening Program. So, in 2019, she had to speak up when she encountered an Oregon bill that would have allowed state legislators to mandate which conditions were included on the screening panel.

That 2019 legislation would have directed OHA to add a list of conditions to the panel, including rare neurological conditions not included on the national recommended uniform newborn screening panel (RUSP) for state newborn screening programs. “Newborn screening needs to be guided by science and expertise,” Dr. Hanna said.

With OPS’s help, Dr. Hanna’s advocacy instead led to the creation of the Northwest Newborn Bloodspot Screening Advisory Board, which is an expert panel that recommends which conditions to add or drop from the screening program. She now serves on this OHA advisory group.

During the 2021 legislative session, Dr. Hanna testified against a bill– similar to the 2019 legislation — which would have bypassed the expert advisory process for newborn screening requirements. The bill included a list of conditions that would have been required additions to the screening panel, while ignoring some of the advisory panel’s recommendations and dropping other conditions already approved.  For example, local and national families who had suffered personal losses to Krabbe disease lobbied for this bill and gained a strong Oregon legislator bill sponsor.  Their oral testimony was impactful. Krabbe Disease has not been added to the RUSP,  which is necessary for the NWRNBS Advisory panel to consider addition. Ultimately, the bill was defeated.

“There is a huge emotional charge to this. We all feel compassionate toward families who face bad diseases. As pediatricians, we have to be compassionate, and we also have to stick with science and process in making collective policy decisions.”

Dr. Hanna will again be representing OPS this Thursday as she testifies at a legislative informational hearing about the newborn screening process. “Because of her interests and dedication, Cheryl Hanna has had a huge impact on state legislation and policy,” said OPS Executive Director, Julie Scholz. “She is a testament to the power of what one passionate person can do. Because of the engagement of medical experts like Dr. Hanna, OPS’s legislative reputation has grown exponentially this session, and our testimony is in high demand.”

 

5/24/2021

 

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