Working today
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That is just as problematic as the Squad entries. American Flag, State Flag, nameplate. That’s it.
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That is just as problematic as the Squad entries. American Flag, State Flag, nameplate. That’s it.
The majority of them have just that. And if there’s a sign it’s either ‘welcome we’re open’ or something rah-rah about their state like a state Uni banner.
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@jon-nyc Cool stuff you are doing!!
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No it isn’t realistic to get leadership as a cosponsor for a tiny bill like this.
We met with Vern Johnson, who I believe is the ranking GOP member on Ways and Means. That’s probably a stretch. He probably considers himself umpire not player on things like this and would be unlikely to sponsor us. But it is worth a try. It would be a coup to get him.
They’ll end up, after a lot of drama, with the same formula they use every time they have a trifecta: take away health care and food assistance from low income families and use the money to fund tax cuts for their donors.
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What's it for? Funding for research into your disease?
Education is extremely important.
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No it isn’t realistic to get leadership as a cosponsor for a tiny bill like this.
We met with Vern Johnson, who I believe is the ranking GOP member on Ways and Means. That’s probably a stretch. He probably considers himself umpire not player on things like this and would be unlikely to sponsor us. But it is worth a try. It would be a coup to get him.
@jon-nyc said in Working today:
No it isn’t realistic to get leadership as a cosponsor for a tiny bill like this.
We met with Vern Johnson, who I believe is the ranking GOP member on Ways and Means. That’s probably a stretch. He probably considers himself umpire not player on things like this and would be unlikely to sponsor us. But it is worth a try. It would be a coup to get him.
Then hit up Letlow. She used to work for Tulane Medical School doing education or something and she's lost her husband pretty young due to COVID.
Might be sympathetic. And if you get her, she's real tight with Johnson.
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@Horace said in Working today:
What's it for? Funding for research into your disease?
No, we do a pretty good job of funding research. The bill has to do with standards of care and modernizing Medicare.
In a nutshell, this disease comes down to people missing a functional level of a particular protein (alpha-1 antitrypsin). The current standard of care is to replace that protein by collecting it from healthy people (plasma donors) and infusing it (intravenously) weekly into people with this disease.
If you have commercial insurance (or even Medicaid), you get that weekly infusion at home, it takes about 30 minutes.
But if you are a medicare patient (IOW, elderly or disabled) you have to go into an infusion center for the treatment. In some places there are stand-alone businesses which are infusion centers but in less dense areas they're done in a hospital.
You can imagine that in the early months of covid it was quite stressful for elderly people with lung disease to go to hospitals to get treatment. Many decided to skip their treatment rather than risk it. Even ignoring covid, people with this disease are particularly susceptible to lung damage when contracting any respiratory disease. Especially the elderly and disabled (most of whom are disabled because their lung function is largely destroyed).
What our bill does is instruct CMS (the payor behind Medicare) to create a home infusion option under Medicare Part B for people with this disease. It's just an option ('if you like your infusion center, you can keep it'), not a requirement.
We approached this from a patient care angle, of course, but the more we looked into it the more we realized that it was actually cheaper to do it in the home. The average home infusion for Alpha-1 takes about a half hour, the bill instructs CMS to reimburse up to 2 hours of nursing time (they have to drive to your house and back).
Of course, a nurse in a center can do many more patients in 2 hours - but, the facility charges of the institutional setting make it more expensive.
But the result isn't that surprising, United Health Care isn't paying for me to have home infusions because I'm a great guy and they want me to have a nice day. They did the math and it's cheaper. Medicare hasn't kept up with the times. According to our calculations, the average cost for the administration of a home infusion is $180, in a hospital setting it's more like $380. In a specialty infusion center it's somewhere in the middle.
So the current situation is a breech of common sense - if you have private insurance, which generally means you're younger and more healthy, you get safer care than the people who are most at risk. Add to that the fact that the more risky substandard care is actually more expensive to provide, and this is even more of an obvious error.
Another selling point to certain congressmen is the fact that in rural areas you might have a 2 hour drive to your nearest infusion center/hospital. It's one thing to ask a healthy nurse to make that drive while being compensated for it, it's another to ask the 74 year old with 30% lung function to do it each week, there and back. Or ask the 80 year old to have her son or daughter drive her every week.
So we have a pretty good pitch to both parties - this bill improves health care access (a key Dem priority), especially for elderly (a key GOP constituency) and rural folks (another key GOP constituency), and saves money (a key GOP priority).
So it's not a hard pitch generally. The issue we have is just getting people's attention since it's such a rare disease and so much has been happening in Congress the last year.
They’ll end up, after a lot of drama, with the same formula they use every time they have a trifecta: take away health care and food assistance from low income families and use the money to fund tax cuts for their donors.
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@Horace said in Working today:
What's it for? Funding for research into your disease?
No, we do a pretty good job of funding research. The bill has to do with standards of care and modernizing Medicare.
In a nutshell, this disease comes down to people missing a functional level of a particular protein (alpha-1 antitrypsin). The current standard of care is to replace that protein by collecting it from healthy people (plasma donors) and infusing it (intravenously) weekly into people with this disease.
If you have commercial insurance (or even Medicaid), you get that weekly infusion at home, it takes about 30 minutes.
But if you are a medicare patient (IOW, elderly or disabled) you have to go into an infusion center for the treatment. In some places there are stand-alone businesses which are infusion centers but in less dense areas they're done in a hospital.
You can imagine that in the early months of covid it was quite stressful for elderly people with lung disease to go to hospitals to get treatment. Many decided to skip their treatment rather than risk it. Even ignoring covid, people with this disease are particularly susceptible to lung damage when contracting any respiratory disease. Especially the elderly and disabled (most of whom are disabled because their lung function is largely destroyed).
What our bill does is instruct CMS (the payor behind Medicare) to create a home infusion option under Medicare Part B for people with this disease. It's just an option ('if you like your infusion center, you can keep it'), not a requirement.
We approached this from a patient care angle, of course, but the more we looked into it the more we realized that it was actually cheaper to do it in the home. The average home infusion for Alpha-1 takes about a half hour, the bill instructs CMS to reimburse up to 2 hours of nursing time (they have to drive to your house and back).
Of course, a nurse in a center can do many more patients in 2 hours - but, the facility charges of the institutional setting make it more expensive.
But the result isn't that surprising, United Health Care isn't paying for me to have home infusions because I'm a great guy and they want me to have a nice day. They did the math and it's cheaper. Medicare hasn't kept up with the times. According to our calculations, the average cost for the administration of a home infusion is $180, in a hospital setting it's more like $380. In a specialty infusion center it's somewhere in the middle.
So the current situation is a breech of common sense - if you have private insurance, which generally means you're younger and more healthy, you get safer care than the people who are most at risk. Add to that the fact that the more risky substandard care is actually more expensive to provide, and this is even more of an obvious error.
Another selling point to certain congressmen is the fact that in rural areas you might have a 2 hour drive to your nearest infusion center/hospital. It's one thing to ask a healthy nurse to make that drive while being compensated for it, it's another to ask the 74 year old with 30% lung function to do it each week, there and back. Or ask the 80 year old to have her son or daughter drive her every week.
So we have a pretty good pitch to both parties - this bill improves health care access (a key Dem priority), especially for elderly (a key GOP constituency) and rural folks (another key GOP constituency), and saves money (a key GOP priority).
So it's not a hard pitch generally. The issue we have is just getting people's attention since it's such a rare disease and so much has been happening in Congress the last year.
Good on ya, Jon. You guys have certainly done the homework.
@jon-nyc said in Working today:
The issue we have is just getting people's attention since it's such a rare disease
Didn't you tell me that it's really not such a rare disease? It just hasn't been diagnosed because we're not looking for it?
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Yes only about 10% diagnosed. But even if it were 100% diagnosed it would still qualify as a rare disease under US regulations (<200k). This is important because the Orphan Drug Act provides a lot of incentives for therapeutic development for rare diseases.
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@Horace said in Working today:
What's it for? Funding for research into your disease?
No, we do a pretty good job of funding research. The bill has to do with standards of care and modernizing Medicare.
In a nutshell, this disease comes down to people missing a functional level of a particular protein (alpha-1 antitrypsin). The current standard of care is to replace that protein by collecting it from healthy people (plasma donors) and infusing it (intravenously) weekly into people with this disease.
If you have commercial insurance (or even Medicaid), you get that weekly infusion at home, it takes about 30 minutes.
But if you are a medicare patient (IOW, elderly or disabled) you have to go into an infusion center for the treatment. In some places there are stand-alone businesses which are infusion centers but in less dense areas they're done in a hospital.
You can imagine that in the early months of covid it was quite stressful for elderly people with lung disease to go to hospitals to get treatment. Many decided to skip their treatment rather than risk it. Even ignoring covid, people with this disease are particularly susceptible to lung damage when contracting any respiratory disease. Especially the elderly and disabled (most of whom are disabled because their lung function is largely destroyed).
What our bill does is instruct CMS (the payor behind Medicare) to create a home infusion option under Medicare Part B for people with this disease. It's just an option ('if you like your infusion center, you can keep it'), not a requirement.
We approached this from a patient care angle, of course, but the more we looked into it the more we realized that it was actually cheaper to do it in the home. The average home infusion for Alpha-1 takes about a half hour, the bill instructs CMS to reimburse up to 2 hours of nursing time (they have to drive to your house and back).
Of course, a nurse in a center can do many more patients in 2 hours - but, the facility charges of the institutional setting make it more expensive.
But the result isn't that surprising, United Health Care isn't paying for me to have home infusions because I'm a great guy and they want me to have a nice day. They did the math and it's cheaper. Medicare hasn't kept up with the times. According to our calculations, the average cost for the administration of a home infusion is $180, in a hospital setting it's more like $380. In a specialty infusion center it's somewhere in the middle.
So the current situation is a breech of common sense - if you have private insurance, which generally means you're younger and more healthy, you get safer care than the people who are most at risk. Add to that the fact that the more risky substandard care is actually more expensive to provide, and this is even more of an obvious error.
Another selling point to certain congressmen is the fact that in rural areas you might have a 2 hour drive to your nearest infusion center/hospital. It's one thing to ask a healthy nurse to make that drive while being compensated for it, it's another to ask the 74 year old with 30% lung function to do it each week, there and back. Or ask the 80 year old to have her son or daughter drive her every week.
So we have a pretty good pitch to both parties - this bill improves health care access (a key Dem priority), especially for elderly (a key GOP constituency) and rural folks (another key GOP constituency), and saves money (a key GOP priority).
So it's not a hard pitch generally. The issue we have is just getting people's attention since it's such a rare disease and so much has been happening in Congress the last year.
@jon-nyc said in Working today:
Another selling point to certain congressmen is the fact that in rural areas you might have a 2 hour drive to your nearest infusion center/hospital. It's one thing to ask a healthy nurse to make that drive while being compensated for it, it's another to ask the 74 year old with 30% lung function to do it each week, there and back. Or ask the 80 year old to have her son or daughter drive her every week.
In my part of the world, that's a big deal.
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@Horace said in Working today:
What's it for? Funding for research into your disease?
No, we do a pretty good job of funding research. The bill has to do with standards of care and modernizing Medicare.
In a nutshell, this disease comes down to people missing a functional level of a particular protein (alpha-1 antitrypsin). The current standard of care is to replace that protein by collecting it from healthy people (plasma donors) and infusing it (intravenously) weekly into people with this disease.
If you have commercial insurance (or even Medicaid), you get that weekly infusion at home, it takes about 30 minutes.
But if you are a medicare patient (IOW, elderly or disabled) you have to go into an infusion center for the treatment. In some places there are stand-alone businesses which are infusion centers but in less dense areas they're done in a hospital.
You can imagine that in the early months of covid it was quite stressful for elderly people with lung disease to go to hospitals to get treatment. Many decided to skip their treatment rather than risk it. Even ignoring covid, people with this disease are particularly susceptible to lung damage when contracting any respiratory disease. Especially the elderly and disabled (most of whom are disabled because their lung function is largely destroyed).
What our bill does is instruct CMS (the payor behind Medicare) to create a home infusion option under Medicare Part B for people with this disease. It's just an option ('if you like your infusion center, you can keep it'), not a requirement.
We approached this from a patient care angle, of course, but the more we looked into it the more we realized that it was actually cheaper to do it in the home. The average home infusion for Alpha-1 takes about a half hour, the bill instructs CMS to reimburse up to 2 hours of nursing time (they have to drive to your house and back).
Of course, a nurse in a center can do many more patients in 2 hours - but, the facility charges of the institutional setting make it more expensive.
But the result isn't that surprising, United Health Care isn't paying for me to have home infusions because I'm a great guy and they want me to have a nice day. They did the math and it's cheaper. Medicare hasn't kept up with the times. According to our calculations, the average cost for the administration of a home infusion is $180, in a hospital setting it's more like $380. In a specialty infusion center it's somewhere in the middle.
So the current situation is a breech of common sense - if you have private insurance, which generally means you're younger and more healthy, you get safer care than the people who are most at risk. Add to that the fact that the more risky substandard care is actually more expensive to provide, and this is even more of an obvious error.
Another selling point to certain congressmen is the fact that in rural areas you might have a 2 hour drive to your nearest infusion center/hospital. It's one thing to ask a healthy nurse to make that drive while being compensated for it, it's another to ask the 74 year old with 30% lung function to do it each week, there and back. Or ask the 80 year old to have her son or daughter drive her every week.
So we have a pretty good pitch to both parties - this bill improves health care access (a key Dem priority), especially for elderly (a key GOP constituency) and rural folks (another key GOP constituency), and saves money (a key GOP priority).
So it's not a hard pitch generally. The issue we have is just getting people's attention since it's such a rare disease and so much has been happening in Congress the last year.
@jon-nyc said in Working today:
The current standard of care is to replace that protein by collecting it from healthy people (plasma donors) and infusing it (intravenously) weekly into people with this disease.
Did you get that treatment before the transplant?
Do you get it now?
