21st Century Cures Act: Chance to improve health outcomes for individuals with Down syndrome

Last December, Congress passed and the president signed into law the landmark and bipartisan Achieving a Better Life Experience (ABLE) Act. The ABLE Act, a long-time legislative priority of our organization, the National Down Syndrome Society (NDSS), allows people with disabilities to save money without jeopardizing benefits, so individuals with Down syndrome and other disabilities can live meaningful, productive and more independent lives in their communities. The House of Representatives will soon be considering another groundbreaking, bipartisan bill that will further promote and enhance the dignity of people with Down syndrome and other disabilities – the 21st Century Cures Act.

This bill will accelerate the process of translating scientific advancements into new treatments and therapies for all different types of conditions and diseases. For NDSS, the ABLE Act and 21st Century Cures Act are two sides of the same coin. The 21^st Century Cures Act will not only benefit patients with life-threatening diseases for which a cure is being sought, it will also benefit conditions, like Down syndrome, for which health outcomes and improvements are being pursued so they may live longer, healthier and more productive lives and achieve a better life experience.

{mosads}Down syndrome is the most commonly occurring chromosomal condition. With nearly 400,000 Americans with Down syndrome in the US, this condition occurs in people of all races and economic levels. One in every 691 babies in the United States is born with Down syndrome. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21, and results in a myriad of physical and cognitive challenges.

Thanks to advances in standards of care and medical innovation, people with Down syndrome are living longer than ever before but still face health complications related to co-occurring medical conditions like childhood leukemia, congenital heart disease, autism spectrum disorders, sleep apnea, epilepsy and Alzheimer’s disease.

Today, as many as 80 percent of adults with Down syndrome reach the age of 60 and many live even longer. For the Down syndrome community, the 21^st Century Cures Act, and its counterpart bill in the Senate, will aid in translating basic scientific discoveries into new therapies and treatments for individuals with Down syndrome. As an example, the first-ever clinical trial on Down syndrome is a drug specifically designed to improve cognitive impairment in the adult Down syndrome population. For people with Down syndrome, a therapeutic that could improve IQ in people with Down syndrome by 10 or even 15 points could be the difference between living dependently with government support or living independently and self-sufficient with limited support.  

Legislation, like the 21^st Century Cures Act, will help make the dreams and aspirations of individuals with Down syndrome a reality much sooner by helping us build a clinical infrastructure that will produce faster and more cost-effective innovations for our community. Our organization calls on members of Congress to support this bipartisan legislation and strongly urges Congress to pass the 21^st Century Cures Act as quickly as possible.  

Weir, MS, is president of the National Down Syndrome Society (NDSS), the largest nonprofit organization in the United States dedicated to advocating for people with Down syndrome and their families, based in New York, NY and Washington, DC.