Ryan Prior meets Senator Bill Cassidy after #MM to discuss new bill for disease-proportionate $$$

[Sasha]

After the ‪#‎MillionsMissing‬ protest, Blue Ribbon Foundation members met with Pranay Udutha, a healthcare aide for U.S. Senator Bill Cassidy. We also got to meet the Senator himself.

Sen. Cassidy is a physician focused on NIH reform to allocate federal dollars for bio-medical research to diseases based on data-driven metrics about the disease's burden to individuals and society.

His arguments for funding are similar to what our advocates have been saying for decades.

Sen. Cassidy's proposals, if passed, would be a great boon to ME/CFS patients and we would all be wise to support his ideas!

https://www.facebook.com/CFSDocumen...661299431396/1161398057224381/?type=3&theater

 

[Snow Leopard]

Very interesting indeed. I would say that we should not be concerned with strict relationship (given the variable measures of disease burden), but any clear outliers should get attention eg ME & CFS are underfunded by an order of magnitude and hence clearly need more attention and research capacity building.

 

[JaimeS]

I agree, Snow Leopard. There should be a move towards hard data, but I think it should be *somewhat* flexible. For example, if there is an outbreak of illness X, more funding might be allocated its way temporarily, in a way that is completely independent of its prevalence or disease burden.

-J

 

[Roy S]

https://en.wikipedia.org/wiki/Bill_Cassidy#Committee_Assignments