Erin and Lee-Anne Du Plooy and I met with Kwon Atlas from Senator Bennet’s office last Tuesday, Aug 7. to discuss SR508. We understood that Sen. Bennet objected to co-sponsoring SR 508 because it is a single-disease issue.
MEAction had prepared some great information for us to counteract this. Detailed charts explaining mathematically how ME is the most underfunded of all diseases in the NIH portfolio compared to disease burden, and how the Senate has recently singled out Lyme Disease for attention , provided examples from longer ago, like AIDS, where patient activism called Congress to act.
Also, both our senators supported legislation for people suffering from rare diseases. Since ME is so very common, I was a bit disappointed to have to be at this point with both our senators, but we presented the best case, along with Lee-Anne’s personal story to keep a face and name in front of all the statistics.
We’ll be following up soon with Bennet’s office and will probably have a calling/email push along with that. A similar meeting with our contact in Gardner’s office is in the works.