In the United States, 400,000 individuals are living with Down syndrome, yet funding to further the research for the most common single cause of human birth defects is low and two senators are making a point to change that.
Sen. Sherrod Brown and Sen. Susan Collins proposed two bills that would allocate $6million annually to create six centers of excellence for Down syndrome research. In addition to creating the centers, the bills would create measures to establish three research databases and would require the National Institutes of Health to maintain a Down research plan.
Since 2000, the Children’s Health Act has specifically authorized research for such conditions as autism, epilepsy and asthma, but not Down syndrome.
“Virtually all of us know someone — a friend, a family member or a colleague — that has been touched by Down syndrome. Yet despite its prevalence, research on Down syndrome has failed to keep pace with the research for other common genetic conditions, like autism and epilepsy,” Brown said.
The bill Brown and Collins proposed is part of an effort to level the playing field when it comes to the distribution of research money.
Alternatively called, Trisomy 21, the condition occurs when there is an extra copy of chromosome 21. The extra chromosome affects the way the body and the brain develop.
Traditionally Down syndrome has benefited from fewer federal research dollars as compared to other conditions. Last year alone, more than three times as much was spent on cystic fibrosis research even though that condition affects just 30,000 Americans compared to 400,000 with Down syndrome.
Although many children have mental and physical limitations, they are still able to lead independent and productive lives into adulthood. It is important to recognize that Down syndrome varies from person to person. While there is no treatment for this condition, the lives of those living with Down syndrome are getting to be longer and longer.
It is unclear when the legislation will move forward to Congress. However, the bill does have bipartisan support, a key to getting legislation passed in recent times.