As a constituent, I am writing to ask you to oppose H.R. 7725, the EDUCATE Act, which would end federal funding, including guaranteed student loans, to U.S. medical schools that have diversity, equity, and inclusion programs.

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Pediatric ALS and Rare Disease is a 100% fatal disease that makes the brain stop talking to the muscles, causing increased paralysis over time. People living with Pediatric ALS and Rare Diseases slowly lose the ability to eat, talk, move or breathe on their own. Pediatric ALS and Rear Disease will affect 1 in 300 people with military veterans being up to ten times more likely to be diagnosed than civilians. People’s life expectancy after diagnosis is typically 2-5 years.

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Pediatric ALS and Rare Diseases do not discriminate. People of every age, gender, race, ethnicity, religion, sexual orientation, and nationality are diagnosed with Pediatric ALS and Rare Diseases. And the number of people living with neurological conditions is expected to increase 34% in the US by 2040.

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However, not everyone has the same experience. For example, studies have found that African-Americans and Black people experience an eight-month delay from symptoms-to-diagnosis and have further progressed to Pediatric ALS and Rare Diseases than their White counterparts at time of diagnosis. ALSFRS-R scores and forced vital capacity were 4.73 points lower and 18.29% lower. While 8 months might not seem like much, it causes people to lose access to clinical trials and quantity and quality of life improving measures, such as feeding tubes and non-invasive ventilation. This is unacceptable.

Diversity, equity and inclusion (DEI) programs address health disparities and help work towards equitable access to resources and information.

 

I urge you to oppose H.R. 7725, the EDUCATE Act and instead support these important programs that have significant benefits for the Pediatric ALS and Rare Disease Community.

 

Brett Guthrie
US Representative (R)
Embracing anti-Discrimination, Unbiased Curricula, and Advancing Truth in Education (EDUCATE) Act, H.R. 7725