First, I'm glad you are able to manage Crohn's Disease with medication. Many are not as fortunate. Some have to undergo surgery to remove sections of the intestine.
Second, don't get me started on American health care and private insurance companies. I have stories to tell, but I'll save that for my own Substack posts. Suffice it to say, having a mental health issue in this country is like being sent to Room 101 in George Orwell's "1984".
I have a prosthetic eye. I want to tell you all about the absurdly expensive and nonsensical way I am billed by the man who made my artificial eye and the intentionally confusing way my health insurance company decides to pay or not pay for whatever services he provides to me. But I have been complaining about it for years and I am tired now. Trust I understand and empathize completely 😅
I'm so sorry for your experience. That sounds like a living nightmare.
Among others, the American system creates unnecessary hardship on people already suffering, i.e. forcing someone with a prosthetic eye to fight billers they've never met. I hope your situation is resolved soon❤️
I really sympathize with your situation having been dealing with Crohn’s for the past year (diagnosed in my 30s) and saw your mention of it recently before fleshing out an article. It’s a horrible feeling both trying to get the coverage you need, and wondering when your coverage will suddenly disappear. I’m fortunate at the moment with Stelara being covered but am not even sure if it’s working, let alone if things will change with my insurance. I was already a socialist when diagnosed, but it makes me feel like I need to talk more about universal healthcare in Crohn’s groups since that might be a way into the conversation.
Solidarity, Mike. It's a horrible disease and medication works different for people. I've found success with Stelara, but then it was taken away. Who knows what's next.
And in your case the really annoying thing is that Remicade (Infliximab) is off patent since 2015 and there are four biosimilar versions of infliximab on the market. So the price of the drug should be decreasing rapidly as it get commoditized, which is kind of happening (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10195719/) although nowhere near as much as it should be - they can manufacture a 100mg vial for considerably less than the $400 shown in Fig 3 of that paper. So it should be getting cheaper, but it isn't, and they are still messing patients like you about in terms of actually getting the infusions.
At least Medicare in the US can now negotiate drug prices with manufacturers. I'm hoping that helps people in the future.
I briefly looked into buying it myself, and was shocked at how insane the price was.
Medicare negotiations are great. I'm hoping (in addition to making prices lower for Medicare patients), it puts downward pressure on the market for non-Medicare patients as well. I doubt it will, but my fingers are crossed.
I feel your pain, Joe. And I'm so sorry you are being put through this mill. I was diagnosed with Type 1 Gaucher's Disease, a lysosome storage disease caused by an enzyme deficiency, requiring one of the most expensive drugs on the market. I'm too private a person to go into the particulars of my story here (plus it's way too long a story) but I know what it is like to be at the mercy of the healthcare industry.
Anyone unfortunate enough to fall ill or be born with an illness should never be put in a position of fighting for available treatment or medication. It is cruel and should be criminal. The way it is now, Pharma controls the rein, price setting including when a drug goes generic and regulating government through lobbying. The American Taxpayer funds the universities and hospitals and scientists that develop and approve these drugs. We pay for the salaries of everyone from the Francis Collins/Anthony Fauci's down to guy in the mailroom. Yet we don't own the patents, and we don't see any profit returned to the taxpayer.
It's okay for Collins/Fauci to get a cut. It's okay for Nancy Pelosi and her ilk to get a cut from insider trading. But the taxpayer who funds innovation? Nah! Lawyers also make a killing defending private medicine. Other world governments negotiate much lower prices for the very same drugs. How come we can't or don't?
The argument from private industry is "Without profit, drug companies will have no incentive to invent new drugs." My response is "If that is your motive, you should not be in healthcare." I assure you, the medical industry will survive without creating billionaire CEOs and billionaire shareholders, and the free market will flow with new companies who actually care about health.
'The argument from private industry is "Without profit, drug companies will have no incentive to invent new drugs." My response is "If that is your motive, you should not be in healthcare."'
This is incredibly well-said, Tina! Not only isn't immoral, but we know people get into medicine for many reasons besides profit-seeking. For example, doctors take oaths to help patients, and (as I understand it) generally abide by it, whether or not there's a profit to be made. There's no reason the other aspects of healthcare can't adopt that same principled motivation.
Personally I am not impressed, for a variety of reasons, by most arguments about how wonderful socialized medicine is int erms of quality. Maybe it is maybe it ain't there's too many factors. Plus I trust a lot of other governments to run things better than the US government.
But I 100% would rather I know I can just walk in without paying for service and get even just halfway decent care at "Northwest District Government Health Station B" than have to spend endless hours on the phone with various billing clerks. Even assuming I know the former care is substandard to the latter.
I dont expect that argument to be very convincing to others. But perhaps someone less ornery than me could craft a message around that. "Get health care outta your hair!" Or somesuch.
First, I'm glad you are able to manage Crohn's Disease with medication. Many are not as fortunate. Some have to undergo surgery to remove sections of the intestine.
Second, don't get me started on American health care and private insurance companies. I have stories to tell, but I'll save that for my own Substack posts. Suffice it to say, having a mental health issue in this country is like being sent to Room 101 in George Orwell's "1984".
I have a prosthetic eye. I want to tell you all about the absurdly expensive and nonsensical way I am billed by the man who made my artificial eye and the intentionally confusing way my health insurance company decides to pay or not pay for whatever services he provides to me. But I have been complaining about it for years and I am tired now. Trust I understand and empathize completely 😅
I'm so sorry for your experience. That sounds like a living nightmare.
Among others, the American system creates unnecessary hardship on people already suffering, i.e. forcing someone with a prosthetic eye to fight billers they've never met. I hope your situation is resolved soon❤️
I really sympathize with your situation having been dealing with Crohn’s for the past year (diagnosed in my 30s) and saw your mention of it recently before fleshing out an article. It’s a horrible feeling both trying to get the coverage you need, and wondering when your coverage will suddenly disappear. I’m fortunate at the moment with Stelara being covered but am not even sure if it’s working, let alone if things will change with my insurance. I was already a socialist when diagnosed, but it makes me feel like I need to talk more about universal healthcare in Crohn’s groups since that might be a way into the conversation.
Solidarity, Mike. It's a horrible disease and medication works different for people. I've found success with Stelara, but then it was taken away. Who knows what's next.
Thank you for sharing this, Joe. I currently have no insurance, and that's a whole other story. Universal healthcare would help in a lot of ways.
Oof, I'm sorry to hear that Eli.❤️
And in your case the really annoying thing is that Remicade (Infliximab) is off patent since 2015 and there are four biosimilar versions of infliximab on the market. So the price of the drug should be decreasing rapidly as it get commoditized, which is kind of happening (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10195719/) although nowhere near as much as it should be - they can manufacture a 100mg vial for considerably less than the $400 shown in Fig 3 of that paper. So it should be getting cheaper, but it isn't, and they are still messing patients like you about in terms of actually getting the infusions.
At least Medicare in the US can now negotiate drug prices with manufacturers. I'm hoping that helps people in the future.
I briefly looked into buying it myself, and was shocked at how insane the price was.
Medicare negotiations are great. I'm hoping (in addition to making prices lower for Medicare patients), it puts downward pressure on the market for non-Medicare patients as well. I doubt it will, but my fingers are crossed.
I feel your pain, Joe. And I'm so sorry you are being put through this mill. I was diagnosed with Type 1 Gaucher's Disease, a lysosome storage disease caused by an enzyme deficiency, requiring one of the most expensive drugs on the market. I'm too private a person to go into the particulars of my story here (plus it's way too long a story) but I know what it is like to be at the mercy of the healthcare industry.
Anyone unfortunate enough to fall ill or be born with an illness should never be put in a position of fighting for available treatment or medication. It is cruel and should be criminal. The way it is now, Pharma controls the rein, price setting including when a drug goes generic and regulating government through lobbying. The American Taxpayer funds the universities and hospitals and scientists that develop and approve these drugs. We pay for the salaries of everyone from the Francis Collins/Anthony Fauci's down to guy in the mailroom. Yet we don't own the patents, and we don't see any profit returned to the taxpayer.
It's okay for Collins/Fauci to get a cut. It's okay for Nancy Pelosi and her ilk to get a cut from insider trading. But the taxpayer who funds innovation? Nah! Lawyers also make a killing defending private medicine. Other world governments negotiate much lower prices for the very same drugs. How come we can't or don't?
The argument from private industry is "Without profit, drug companies will have no incentive to invent new drugs." My response is "If that is your motive, you should not be in healthcare." I assure you, the medical industry will survive without creating billionaire CEOs and billionaire shareholders, and the free market will flow with new companies who actually care about health.
'The argument from private industry is "Without profit, drug companies will have no incentive to invent new drugs." My response is "If that is your motive, you should not be in healthcare."'
This is incredibly well-said, Tina! Not only isn't immoral, but we know people get into medicine for many reasons besides profit-seeking. For example, doctors take oaths to help patients, and (as I understand it) generally abide by it, whether or not there's a profit to be made. There's no reason the other aspects of healthcare can't adopt that same principled motivation.
Personally I am not impressed, for a variety of reasons, by most arguments about how wonderful socialized medicine is int erms of quality. Maybe it is maybe it ain't there's too many factors. Plus I trust a lot of other governments to run things better than the US government.
But I 100% would rather I know I can just walk in without paying for service and get even just halfway decent care at "Northwest District Government Health Station B" than have to spend endless hours on the phone with various billing clerks. Even assuming I know the former care is substandard to the latter.
I dont expect that argument to be very convincing to others. But perhaps someone less ornery than me could craft a message around that. "Get health care outta your hair!" Or somesuch.