Thursday, January 24, 2008

National ALS Registry Seeks Support of Senator Obama

A frequent commenter emailed to ask about Barack Obama's position on the ALS Registry Act.

Truthfully, my information is second-hand; something I was told the day of the ALS Walk when walk organizers were asking us to sign letters of support for the registry. It was also mentioned in the newspaper in Mt. Vernon, IL, which is where we participated in the ALS Walk.

However, Gacki said, Senator Barack Obama’s office tells her that the junior senator does not usually sign on to medical-type bills, though she thinks he would cast a favorable vote when the bill comes to the floor. Calls over the weekend to Obama’s Washington D. C. and Marion, Ill., offices were not answered.

According to Barack Obama's website, he supports:


  • Lowering Costs Through Investment in Electronic Health Information Technology Systems: Most medical records are still stored on paper, which makes it hard to coordinate care, measure quality or reduce medical errors and which costs twice as much as electronic claims. Obama will invest $10 billion a year over the next five years to move the U.S. health care system to broad adoption of standards-based electronic health information systems, including electronic health records, and will phase in requirements for full implementation of health IT. Obama will ensure that patients' privacy is protected.



  • Advance the Biomedical Research Field: As a result of biomedical research the prevention, early detection and treatment of diseases such as cancer and heart disease is better today than any other time in history. Barack Obama has consistently supported funding for the national institutes of health and the national science foundation. Obama strongly supports investments in biomedical research, as well as medical education and training in health-related fields, because it provides the foundation for new therapies and diagnostics. Obama has been a champion of research in cancer, mental health, health disparities, global health, women and children's health, and veterans' health. As president, Obama will strengthen funding for biomedical research, and better improve the efficiency of that research by improving coordination both within government and across government/private/non-profit partnerships. An Obama administration will ensure that we translate scientific progress into improved approaches to disease prevention, early detection and therapy that is available for all Americans.


So why he's holding out on the ALS Registry I have no idea.

This is an explanation of the proposed ALS Registry.

Here is a blog written by a person with ALS, and his letter to the editor.

Here is a Wall Street Journal article emphasizing the need for the ALS Registry.

Again, please contact your Senator.

2 comments:

MP said...

ALS SUCKS..I lost one of my best friends a few years ago. I didn't walk but was working..you may have seen me at the registration table :-)

Thanks for keeping the issue alive on your blog. I'll be linking you today!

Rebecca said...

thanks for the info, you rock.