@TheRealCShinkle We've seen this in the denial of care for those with digestive tract paralysis, and would hope that others do not experience what we have experienced: https://t.co/1wqM82FVsb
@TheRealCShinkle There are those who protest the impact of big companies in their lives; but what about the impact of big government who might fail to respond at a whim to a citizen with difficulty, and who might not have a check if their power or authority is abused.
@TheRealCShinkle We already see that with the taxes and fees that we pay; does that translate to services that work well and efficiently, and do you have the right to appeal if government fails to resolve or provoke difficulty and concern.
@TheRealCShinkle This is a new "Time for Choosing"? Did that EO noticeably improve the ability of Americans (or NY'ers ) to deal with their government; much like Reagan's speech: https://t.co/fu6nEINVhd, we face a future where government will be a far greater part of our lives.
@TheRealCShinkle Early in the Biden administration, one of the most high profile Executive orders was: https://t.co/Uo5ld4cEpZ, meant to dramatically improve the "customer experience in several federal agencies".
@TODAYshow don’t forget the role that GI dysmotlity can play on the creation or problem of acid reflux. Scleroderma can create the basis for these concerns along with gastoparesis and pseudo obstruction on top of diet
@houmanhemmati I hope that there are not too many more Father's Days like this in the US, and a realization that you can create regulation that provides a foundation of both safety and efficacy.
@houmanhemmati Father's Day is one of those days, that it hits hard, that we currently have a regulatory state, that seems to value more delay and denial of more treatments, rather than one that seeks to improve and provide more treatment pathways for complex and chronic disease
@RainConsulting The sacrifice and the cost of 30 Americans and their families struggling with incurable (and usually untreatable) orphan, neurologic and digestive disease needs to be far more front and center in US policy discussions and not just once a decade #RightToTry