jon-nyc, lobbyist
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We’ve made some great progress. We got initial sponsors to get a bill that we authored introduced in the House (“dropped” in the lingo). I (and others) have meetings in the coming weeks to get additional co-sponsors, our goal is to get 100 co-sponsors in this legislative session.
https://www.congress.gov/bill/117th-congress/house-bill/7346
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https://upstatechamber.org/wp-content/uploads/2017/06/bill-e1498759943184.jpgYour new profile pic?
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My personal interactions were with staff of both NY and CT senators and staff of a few reps in NY and CT also. Most of these people have a staff person dedicated to health issues (though they may have other remits too). I'm surprised how knowledgable some of the staff are given their youth.
I meet with NIH and FDA too, including very high levels (especially in FDA), but not for lobbying. (or maybe a different kind of lobbying?)
"You never know what worse luck your bad luck has saved you from."
-Cormac McCarthy -
That's it.
So the standard of care for this disease is infusing the missing protein (derived from donated plasma). If you have private insurance, you get that infusion at home. A nurse comes to your house weekly and gives it to you.
On Medicare, you have to go to an infusion center, which might be a specialized facility or part of a hospital. You can imagine during the heights of Covid people with advanced lung disease having to choose between risking infection at a facility or skipping treatments.
Think particularly of the irony that people with private insurance are the younger healthier ones, the ones on medicare are either old or disabled.
So yeah, this little bill authorizes home infusions to be covered under medicare part B. It's not even that expensive as an addition, given medicare already pays for the most expensive part (the drug).
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Just great. My senators are in the hands of Big-Alpha.
But for realz--good to hear the progress. There's something of a mini-cluster of Alphas in my family...You're likely familiar with one in particular. (he had hiked the Appalachian, the Pacific Crest and the Continental Divide Trail over several years to raise funds/awareness)
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My personal interactions were with staff of both NY and CT senators and staff of a few reps in NY and CT also. Most of these people have a staff person dedicated to health issues (though they may have other remits too). I'm surprised how knowledgable some of the staff are given their youth.
I meet with NIH and FDA too, including very high levels (especially in FDA), but not for lobbying. (or maybe a different kind of lobbying?)
@jon-nyc said in jon-nyc, lobbyist:
I'm surprised how knowledgable some of the staff are given their youth.
Careful, Jon, you risk looking like an old fart with that kind of talk.
I meet with NIH and FDA too, including very high levels (especially in FDA), but not for lobbying. (or maybe a different kind of lobbying?)
Yes, yes, and yes again. These people influence the legislators, too. Well done to meet with them!
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Just great. My senators are in the hands of Big-Alpha.
But for realz--good to hear the progress. There's something of a mini-cluster of Alphas in my family...You're likely familiar with one in particular. (he had hiked the Appalachian, the Pacific Crest and the Continental Divide Trail over several years to raise funds/awareness)
@Rich said in jon-nyc, lobbyist:
Just great. My senators are in the hands of Big-Alpha.
But for realz--good to hear the progress. There's something of a mini-cluster of Alphas in my family...You're likely familiar with one in particular. (he had hiked the Appalachian, the Pacific Crest and the Continental Divide Trail over several years to raise funds/awareness)
Moneymaker!!!! We need to talk.
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Very cool!! Government doing good!!!
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Klaus, lobbyist.
Note quite on the same scale as Jon, but I've been elected as a board member of the Network for Scientific Freedom, which one could classify as the Heterodox Academy of German-speaking countries. There are already around 700 professors in the network, and we are slowly but steadily gaining visibility and influence. The fight is on.
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Klaus, lobbyist.
Note quite on the same scale as Jon, but I've been elected as a board member of the Network for Scientific Freedom, which one could classify as the Heterodox Academy of German-speaking countries. There are already around 700 professors in the network, and we are slowly but steadily gaining visibility and influence. The fight is on.
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Klaus, lobbyist.
Note quite on the same scale as Jon, but I've been elected as a board member of the Network for Scientific Freedom, which one could classify as the Heterodox Academy of German-speaking countries. There are already around 700 professors in the network, and we are slowly but steadily gaining visibility and influence. The fight is on.
@Klaus said in jon-nyc, lobbyist:
Klaus, lobbyist.
Note quite on the same scale as Jon, but I've been elected as a board member of the Network for Scientific Freedom, which one could classify as the Heterodox Academy of German-speaking countries. There are already around 700 professors in the network, and we are slowly but steadily gaining visibility and influence. The fight is on.
Excellent! What kinds of issues will your board address in the next few years?
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Klaus, lobbyist.
Note quite on the same scale as Jon, but I've been elected as a board member of the Network for Scientific Freedom, which one could classify as the Heterodox Academy of German-speaking countries. There are already around 700 professors in the network, and we are slowly but steadily gaining visibility and influence. The fight is on.
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@Klaus said in jon-nyc, lobbyist:
Klaus, lobbyist.
Note quite on the same scale as Jon, but I've been elected as a board member of the Network for Scientific Freedom, which one could classify as the Heterodox Academy of German-speaking countries. There are already around 700 professors in the network, and we are slowly but steadily gaining visibility and influence. The fight is on.
Excellent! What kinds of issues will your board address in the next few years?
@brenda said in jon-nyc, lobbyist:
@Klaus said in jon-nyc, lobbyist:
Klaus, lobbyist.
Note quite on the same scale as Jon, but I've been elected as a board member of the Network for Scientific Freedom, which one could classify as the Heterodox Academy of German-speaking countries. There are already around 700 professors in the network, and we are slowly but steadily gaining visibility and influence. The fight is on.
Excellent! What kinds of issues will your board address in the next few years?
Various issues.
One thing we are doing right now is to build a public annotated database of cases of "cancel culture" in the German-speaking academia. We also try to help the involved people in various ways, including legally, and generally raise public awareness about the dangers of "wokeism" et al through various channels (in addition to the usual social media, we have many members from the social sciences and the humanities who write for newspapers, participate in public debates, publish books etc.).
