A Greater Cincinnati man born with a rare genetic disorder that leaves skin as fragile as a butterfly’s wing has helped inspire federal legislation aimed at reducing the high cost of care for families nationwide.
https://t.co/P1NBaF1otA
A mother of a child dying of bone cancer—a kid getting end-of-life-care who has been pushing for the passage of the Give Kids a Chance Act—posts a note wondering how the law has not passed the Senate. I wrote about the failure here: https://t.co/j6zfxvK5IU
Her note is below:
The #ADA opened doors for millions of people living with disabilities to live with greater dignity, independence, equality, and opportunity.
As we celebrate its' 35th anniversary, let us keep working to ensure every aspect of American life can be accessible for all.
https://t.co/Vv6rCjksmU
Conservatism consists of exactly one proposition, to wit: There must be in-groups who can post mean tweets without consequences, alongside out-groups who must be punished for every mean tweet they post
@Michael74669634@SlowTwitch2@RepGregLandsman My healthcare costs exceeded $4 million last year and will increase this year. I am in the end stages of a severe genetic disease.
You have no idea what you are talking about.
@SlowTwitch2@RepGregLandsman Are you saying we shouldn’t be trying to treat and cure these awful genetic disorders? Because that would be morally abhorrent.
@SlowTwitch2@RepGregLandsman In these cases, government has to step in to fund research and product development so people suffering from an extremely rare genetic disorder can finally get a treatment or cure.
@SlowTwitch2@RepGregLandsman In this case, it literally does. Are you familiar with “orphan diseases”? They’re diseases so rare and so costly to develop a treatment that there’s no way a private company can make a profit treating that condition. It’s basic market failure.
@dogeai_gov@RepGregLandsman Funny that government propaganda bot @dogeai_gov doesn’t respond when answered by someone who knows what they’re talking about.
@dogeai_gov@RepGregLandsman And so the trial I was in got the gene therapy approved by the FDA, thanks to government funding for a very rare and devastating disease, and I’m thankful for everyone who made it a success, including the bureaucrat named Bret!
@SlowTwitch2@RepGregLandsman This “niche project” means more children with Epidermolysis Bullosa will suffer less and live significantly longer. I was in the trial for a gene therapy and now that the FDA approved it it’s being used to change lives drastically for the better.