Federal Spending on Down Syndrome Research Shameful
June 26, 2009
Some of you may already be familiar with these figures, but I think they are worth bearing out again to remind us how woefully inadequate federal spending is on Down syndrome research.
| Condition |
US POPULATION(est.) |
2008 NIH FUNDING Millions $$ |
2008 NIH $ per CAPITA AMOUNT |
|
Cystic Fibrosis |
30,000 |
90 |
3,000 |
|
Parkinson’s |
1,500,000 |
152 |
101 |
|
ALS |
30,000 |
43 |
1,433 |
|
Huntington’s |
30,000 |
51 |
1,700 |
|
Multiple Sclerosis |
4000,000 |
169 |
422 |
|
Crohn’s Disease |
400,000 |
51 |
128 |
|
Down syndrome |
400,000 |
17 |
40 |
|
Fragile X |
17,000 |
26 |
1,529 |
|
Autism |
560,000 |
118 |
211 |
|
Duchenne MD |
45,350 |
22 |
485 |
In testimony presented before the Down Syndrome Congressional Caucus, Dr. Brian Skotko, a nationally known physician, DS advocate and author, noted “research related to DS has decreased from $23M in 2003 to $17M in 2008. With nearly 400,000 people with DS living in the U.S. today, this means that only $40 is being committed in research dollars for each person with DS. By contrast, $3,000 in research money is being allocated to each person with cystic fibrosis, and about $1,500 toward persons with Fragile X syndrome, both far less common medical conditions in comparison to Down syndrome. Since Down syndrome occurs in people of all different races and origins, the lack of funding for research on Down syndrome further contributes to health care disparities.”
Moreover, Dr. Skotko said “while research money on the treatment for Down syndrome has been decreasing, the federal dollars dedicated to developing more advanced prenatal testing for Down syndrome have been nearly matched—if not larger. In 2005, as an example, approximately $13 million was granted by the NIH and the National Institute of Child Health and Human Development (NICHD) to a single study conducted by Columbia University Medical Center for the discovery of a first-trimester Down syndrome prenatal screen. Estimates on how much federal research money has been dedicated to prenatal testing in recent years remains unknown but is likely larger based on the increasing number of studies that are being published on the topic.”
This should be the proverbial clarion call for all of us with DS children or siblings. If there’s any hope of helping them achieve greater meaning and independence in their lives so they can be contributors to society and not just recipients of its largesse, then we must have a much larger and louder voice to ensure NIH takes DS research seriously and backs it up with increased dollars.
A very, very dear friend, who has three children with autism, summed it up poignently during a recent conversation on the issue of NIH funding. She said “Yes, I’m sure NIH reallocated money towards autism, because up until last year, practically zero research was being done on Autism. Unfortunately, he who speaks loudest has the most clout.”
We’ve dedicated ourselves to being a louder voice and to press harder on government for our DS children’s needs. How about you?
July 4, 2009 at 6:49 am
It’s horrible to see the figures in such stark relief, and useless to bury one’s head about it of course. It’s doubly shameful when you have an insight into the world of people with an extra chromosome. We preach to the converted often, and I suppose it’s to remind ourselves that there is something special here, something that is unseen by the majority, and wilfully unseen by a dangerous subset within them. I refer to those who would develop some twisted future of perfection by eliminating the ‘wrong’. So much of it already happens. And you guys feel the brunt of that more than we do in Ireland, because here at least DS survival rates are same as non-DS. (A heirarchy steeped in Catholic anti-abortion theology has seen to that, and I for one am glad of that particular side-effect.) DS is more common on the streets, in the stores and in life in general, which only has the effect of normalising it, in as much as the differences can blend. No room for complacency though. WE still have to fight for most of what we get, and especially now as our govt tries to pull the brake on any spending it can. Good luck with the advocacy.
July 4, 2009 at 8:10 am
I am equally dumbfounded at the clear lack of engagement on the issue by our national DS organizations. Since 2003, these groups presided over the net loss of $6 million or more in federal research monies toward DS — funding that wasn’t cut because of downward economic trends, etc., it was money that was reallocated toward other disease states and health conditions. What all this seems to tell me is that NIH believes no further understanding of the DS condition can result from increasing research funding. Amazing…
July 25, 2009 at 2:51 pm
[...] fact, it would seem we’re actually losing ground as evidence by the loss of approximately $6M in NIH research funding for Down syndrome since 2003. This isn’t funding that was deleted from budgets because of a sliding economy, but precious [...]
August 7, 2009 at 5:18 pm
Looking at the defense budget, all of the waste, and corruption-disgusting-American priorities, we care about saving people-Wow! what a whopper!
May 5, 2010 at 8:03 am
I’m a parent of a 25 year old daughter with DS and the co-founder/ED of Down Home Ranch (DHR), a working farm and ranch in Texas for people with DS and other disabilities. After meeting Dr. Bill Mobley in 2007 my wife and I developed an interest in DS research and just lately have formed a DS Research Group that included a couple of families in Dallas that post the http://www.researchds.org site. We met with Gov. Sarah Palin and Gov. Rick Perry last week with one request: please help us get more NIH funding for DS research. I also had a visit to DHR from Peter Elliott, Dir. of the Down Syndrome Research Foundation in the UK, and he is keen on getting US and UK scientists meeting and talking. I’m thinking those of us supporting DS research to improve lives is substantial and growing–and if we can begin connecting and organizing we can have our own little march on Washington and sit down with the politicians and NIH folks and turn the spigot on.