jon-nyc, lobbyist
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Today is another lobbying day. I just met with Gillibrand's staff guy who deals with health policy. Lobbying for a carve out benefit for my peeps and for support for two existing bills.
This afternoon I meet with a GOP rep from the Albany area. I think it's going to be him, not staff. He's part of the House rare disease caucus.
On top I'm wearing a bespoke shirt with French cuffs, and a tie. On bottom, sweat pants. Ya rly.
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Today is another lobbying day. I just met with Gillibrand's staff guy who deals with health policy. Lobbying for a carve out benefit for my peeps and for support for two existing bills.
This afternoon I meet with a GOP rep from the Albany area. I think it's going to be him, not staff. He's part of the House rare disease caucus.
On top I'm wearing a bespoke shirt with French cuffs, and a tie. On bottom, sweat pants. Ya rly.
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Bespoke Sweatpants?
https://www.gq.com/gallery/dont-sweat-it-21-tailored-sweatpants-to-buy-right-now
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George - I thought you'd get a kick out of this, we're having anther lobbying day and I'm meeting with Richard Blumenthal's office in 25m.
I'm not his constituent, of course, but our CT-based board member couldn't make it.
(I have Gilibrand on Friday)
"You never know what worse luck your bad luck has saved you from."
-Cormac McCarthy -
George - I thought you'd get a kick out of this, we're having anther lobbying day and I'm meeting with Richard Blumenthal's office in 25m.
I'm not his constituent, of course, but our CT-based board member couldn't make it.
(I have Gilibrand on Friday)
@jon-nyc said in jon-nyc, lobbyist:
George - I thought you'd get a kick out of this, we're having anther lobbying day and I'm meeting with Richard Blumenthal's office in 25m.
I'm not his constituent, of course, but our CT-based board member couldn't make it.
(I have Gilibrand on Friday)
Whatever you do, don’t think about how much Blumenthal looks like a Ferengi.
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Met with a staff person, as expected. I was tempted to say "your boss has to help us, I saved his life in 'Nam"
@jon-nyc said in jon-nyc, lobbyist:
Met with a staff person, as expected. I was tempted to say "your boss has to help us, I saved his life in 'Nam"
@jon-nyc said in jon-nyc, lobbyist:
Met with a staff person, as expected. I was tempted to say "your boss has to help us, I saved his life in 'Nam"
An old boss of mine once told me a story about a representative planning a visit to their company. The day of, the rep was a no-show, and sent a couple of kids from his staff office instead. So, my boss didn't take the visit seriously. (This was when he was fresh out of school.)
"Never make that mistake again," his boss told him. "This is how it works. You need to make those kids give a shit because that's the way to make their boss give a shit. They leave here thinking they wasted their time, and we'll not hear from them again. And you'll make enemies with our entire comms office."
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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).
