2011 National Institutes of Health Report Shows Down Syndrome Remains the Least Funded Genetic Condition
On Monday, February 13, 2012 the National Institutes of Health (NIH) published the fiscal year 2011 research funding for Down syndrome. The funding numbers decreased from $22 million in 2010 to $20 million in 2011 out of a total $31 billion budget. The 2010 funding levels already equated to Down syndrome being the least funded genetic condition by the NIH, something many Down syndrome organizations have been trying to reverse.
In a joint statement by the National Down Syndrome Congress, National Down Syndrome Society and Global Down Syndrome Foundation, the Down syndrome community expressed its disappointment in the decrease.
We are very disappointed the funding levels for research from the NIH have not increased, but in fact decreased. Prominent scientists believe the research for improving health and cognition is extremely promising.
The Down syndrome community feels strongly about better medical care and outcomes for people with Down syndrome. Mainstream Americans overwhelmingly support federal funding for Down syndrome, as evidenced by a 2011 poll.
While funding for other conditions such as Fragile X and Cystic Fibrosis increased, funding for Down syndrome at the National Institutes of Health is significantly less and has plummeted since 2000, as evidenced by numbers published by the NIH.
People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, childhood leukemia, thyroid conditions, and Alzheimer's disease. Researchers are studying proteins related to human chromosome 21 and Alzheimer's disease that would reduce the level of the protein and lead to improvements in cognition for individuals with Down syndrome. While these groundbreaking developments, supported primarily by private funding, are positive achievements, both government funding and clinical research infrastructure support are vital to our efforts to translate research achievements into real treatments and therapies.
We hope given these realities that research funding benefiting the lives of people with Down syndrome will increase at the NIH. We are grateful for the funding that has been provided so far and will continue to collaborate with the NIH in meeting our collective goals for increased funding.