National Alzheimer's Project Act should include Down Syndrome

As some of you know, NAPA (National Alzheimer Project Act) was signed into law by President Obama in January 2011. The project is divided into 3 areas, research, clinical care, and long term care. NAPA does recognize that Alzheimer’s disease is more common in those with intellectual disabilities, but does not address the very close relationship between DS and AD. Congresswoman McMorris Rodgers would like to remedy that.
NAPA will be having a Teleconference Advisory Council Meeting tomorrow from 1 till 5 PM. The chairs from all 3 subcommittees (Research, Clinical Care, and Long term services) will be present.

I know of two people who will be speaking to the group. One is a sibling of a man who had DS and AD and has passed away. The other will be reading a letter from some in the DS research community (letter embargoed until the meeting). The gist of the comments are that NAPA has omitted Down Syndrome as a specific group with an exceptionally high risk of Alzheimer’s and that DS should be included, specifically, particularly under goal 1 of NAPA (research to prevent and effectively treat Alzheimer’s disease by 2025).

The public may attend the Teleconference by clicking this link.

HHS is seeking input on the draft plan through March 30, 2012. The Congresswoman is submitting a letter and I hope each of you will as well. Inclusion of DS, specifically, in the National Alzheimer’s Project Act will clearly benefit DS. It will most likely benefit others as well.

Karen L. Summar, MD, MS
Joseph P. Kennedy Foundation Public Policy Fellow
Office of Congresswoman Cathy McMorris Rodgers
2421 Rayburn House Office Building
Washington, DC 20515