I find it important to sometimes take a look back. The MD CARE Act of 2001 was passed and signed into law in record time.. 11months. It was introduced in February, 2001 and signed Dec. 2001. This legislation put MD on the radar screen of the NIH, Dept. of Defense and CDC. But more than that, it caused a philosophical shift in attitudes, ideas and possibilities. It stimulated reseach and industry interest and insisted on data collection and the development of Standards of Care (Care Considerations). It began to change the negative philosophy (no hope, no help) within the medical community. This legislation made us believers... in change, in possibility, in the promise of treatments and cure. This legislation was 'authorizing' legislation, meaning it had a shelf life of 5 years.
The MD CARE Act expired in 2006. It was on our radar screen and frankly we spent a year strategizing about next steps. It was frustrating to say the least. Given the NIH budget constraints, we knew it was in our best interests to work with our champions in Congress on the reauthorization. While the NIH's interest continued to be strong, there are any number of competing interests and muscle (muscular dystrophy, dmd) could potentially fall off the NIH radar screen or certainly become less of a priority. On February 7, 2008 the Paul D. Wellstone MD CARE Act was reintroduced. Given the current political environment and concerns on the Senate side, the path seemed filled with obstacles. Our families and our champions in Congress continued to persevere, step by step, overcoming hurdles, negotiating, connecting with Member's offices. On September 27, the legislation was passed. 7 months!! Must be some sort of a record. The legislation is now with the President and will soon be signed into law. Passing does not end our advocacy efforts, rather it continues what has been done to date and offers all of us the opportunity to work together to lead the DMD community into the phase of treatments and cure. If you haven't already, please write to your Congressman or Senator and say THANKS one million times over.