Friday, May 8, 2009

More Advocacy...a note from Eddie Esparza, leader of Team IPLEX

All, with his permission, I am reposting a note that Edde originally posted to the ALS-TDI website. His and "Team IPLEX's" unyielding pressure has helped several people get IPLEX, and continues to work towards making it available to other PALS who would like to try it. Below, he gives a good overview of why we need more funding for ALS, and some detail on the shameful level of current spending on this by our Government. Thank you Eddie, you are a true Champion for our cause...

========Begin Eddie's Note=======

As everybody knows, the speed of any research depends (in part) on the amount that is invested into that particular disease's research.

If 100 laboratories worked on a particular problem, not only is the likelihood of success 100 times greater but the research should progress more rapidly. At the present, with NIH spending only $43 million per year on ALS research , we don't have enough of the best scientists in the United States working on the problem. When California starts investing >$300 million per year and New Jersey investing $30 million per year in the area, this will more than double the research in the field. Finally, if the Stem Cell Research Enhancement Act (SCREA) of 2006 were to pass, it would allow NIH to fund derivation of human embryonic stem cell lines.We need more funding for ALS research, but it's not going to happen by itself. At the present, NIH is spending less than $44 million per year on all ALS research, and that includes... rehabilitation.

Does anybody else feel that this is a pitifully/ shamefully small amount/investment? Achieving regenerative and remyelinative therapies for neurodegenerative diseases, spinal cord, etc. and getting them successfully through clinical trials is way more difficult and challenging than flying to the moon. It is estimated that it takes over $800 million to move one therapy from discovery to market. At this rate... well just do the math.

I don't know how true this is, but I recently read that, ALS costs the government (Medicaid, Medicare, etc.) just about, $1 billion per year. If this is true, you would think that the government/ Congress would be more than willing to consider investing 10% of this amount or $100 million per year to develop regenerative and remyelinative therapies. Note that such therapies will most likely be useful other peripheral nerve diseases, not to mention, spinal cord injury, etc.

But like I stated earlier, it ain't going to happen by itself. I will agree that, we are definitely a very small group, but I believe Team IPLEX, has already demonstrated on at least 2 separate occasions, that... "It's never, the size of the dog in the fight,... It's always, the Size of the Fight in the Dog."
Edward W. Esparza
(pals since 2005)

============End Eddie's Note============

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