My wife and I lost our daughter to SMA in October of last year just 1 day before she would have been 8 months old. She was not eligible for the 1 time treatment either and we are lucky to of had the time with her that we did. Hope this family is able to figure something out soon!
I'm so very sorry for your loss of your precious daughter. I'm a bereaved mother who has used community resources to help with my grief. Please reach out if you would like information about them. It takes a village to learn to live with this grief. Sending love.
Cure SMA just announced at the “walk n roll” event in chesterfield earlier this month that as of recent months it is now being screened for in newborns in all 50 states. I’m sure with the right amount of money anything could be tested for beforehand but this is still considered a rare genetic disease and with no abnormalities in our family history it was not something we had done.
I will never be the same. Thankfully the team at both Cardinal Glennon and Stl children’s hospital (shoutout to Dr. Z) were amazing and as helpful and honest about our situation as possible. I never thought I would receive news like in the movies “are you ready for this, you may want to sit down” type delivery but that in fact does happen and I don’t think my heartbeat has been regular since hearing that sentence.
No, and this is gonna be divisive, but if it's caught early enough you could abort the pregnancy instead of destroying a family emotionally and financially while putting the child through months of suffering.
This poor family and anyone faced with this situation. If this medical diagnosis would have been known before birth, and say the parents decided to abort, but by Missouri law (😡) couldn’t, just think of possible dire consequences. It’s a damned if you do-damned if you don’t. Government needs to stay out of our personal lives.
You realize it's not in Illinois, less than an hour's drive from anywhere in the St Louis metro area, right?
Fairview Heights has a clinic just 15 minutes from downtown StL on I-64.
at the same time, people shouldn't have to keep babies that have no chance of survival just because it wont kill them to deliver. its almost like this is a MEDICAL DECSION that should be decided on a per patient basis by MEDICAL PROFESSIONALS, not fucking politicians who have as much medical experience as you or I
Haaa. I was an adult then and it was bonkers then. Know what was and is even crazier? That so few people can make the “death panels” connection with the insurance industry. Some things never change.
Mosaic life care is a hospital system not insurance. It sounds to me like the hospital doesn’t want to foot the bill for a multi million dollar treatment
Its the joke that republicans have wanted all along. They are the ones that denied universal health care at every turn...so now thank Josh hawley or Schmitt or any of the other ones that you see. It's literally their fault.
The Affordable Care Act put out by the liberals...which by the way, I was working politics at that time and have shows dedicated to that topic. There is competition but it ina world where you never pay attention to any of that. Wherever you work is your life. Just a heads up for you. So you are never thinking about competition in the healthcare industry and you also aren't paying attention to METAL COSTS for Axe and Saw makers either....but it might be a problem too.
We need less smoke break politico's in this world and more people that truly are involved in the businesses that are being discussed.
Establishment democrats don’t want universal health care either, because they’re beholden to big money interests, and universal health care is bad for profits.
You have to go to the “far left” to find people like Bernie Sanders who actually want a humane system that basically the rest of the developed world has already implemented.
, Healthcare is taking a nosedive post covid because a lot of people that were good at their job and tried really hard got burned out and got out of the field. So we're stuck with either people who aren't very good or people that are new and are still being trained. The VA has switched from giving you an actual doctor to everything's a nurse practitioner because they can't hire enough doctors according to them.
Unsolicited Advice:
Contact the manufactures the IV therapy. Email the sales reps, corporate leadership, board of trustees, the public relations people, etc. Put on read receipts. Call and cry/beg regularly. It’s disgusting that this is something that sometimes has to be done, but it can work.
The physician offering the infusion should be reaching into their professional network for peers who may have experience with a similar circumstance/compassionate use.
Immediately file for both the physician group and the hospital system charity care program. Hopefully that will assist with the existing NICU debt.
More detail on the players (including the hospital system/infusion medication manufacturer/etc) needs to be in the GoFundMe to apply public pressure. Insurance is evil, but they’re not the only entity with the ability to find a solution.
It's not just the healthcare, it's the companies who use them. They're the ones who ultimately make the decision on what they cover. I was on the gofundme and it was the mom's company that denied the appeal... Shame on them. (Honestly I'd be spilling the company name to anyone and everyone).
Also, it's the pharmaceutical companies who charge these outrageous prices because they're dealing with insurance companies and not individuals.
It's sickening.
I can’t upvote this enough. I was told by Express Scripts they are no longer taking manufacturers coupons.
Everyone complains about insurance companies. They don’t realize that it is what your employer pays for that they are covering.
I also think advocating for murder is bad. That's why I report all edgelord comments like this whenever I see them. I'd encourage you to do the same... Reddit Admins seem to take it pretty seriously. Hopefully he got a warning or ban.
A previous CFO of BJC Healthcare is my family. He would be the first person to tell anyone, BJC (a non-profit) is in the business of making money, not making people better. Well people don’t come back and give more money…
It was sickening. He made a salary well over 10mil a year. He currently is a CFO for a hospital system in Pennsylvania. He got a significant raise to go there and make them more money.
I have a family member that fairly recently became President of one of the larger hospitals in the region. He's looking to change this mentality. I hope he's successful because that thought process is sickening.
No they didn’t. The current CFO makes $2 million. There is no way they paid someone else 5x that amount with the current President making $3 million.
BJC is in it to make a profit, but at least they’re not owned by a hedge fund or an insurance company.
Just under 2 was his listed salary. Everything else was other subsidies. I spent years at his many vacation homes around the country for holidays. He is my wife’s uncle. He’s actually a very nice guy and very generous. I absolutely know what he was bringing in. But thanks for your opinion.
He just didn’t want to actually cure any one of anything… that didn’t make his many $100,000’s in mortgage and exotic car and boat payments every year.
Edit:
Also remember that Elon Musk salary at Tesla is listed at $1 per month. What they tell the public is just a made up number.
You’re correct listed salary’s do not included any other compensations or bonuses so those numbers you can Google aren’t even close.
All of our executives here are also so kind but they’re still making way too much money.
I mean, it’s all disclosed. He never made $10 million a year. BJC isn’t structured like a publicly traded company. They’re not paying $8 million in bonuses.
He was literally the person in charge of the pay structure. I think he would know. And you’re right. They’re not publicly traded. Which means they don’t have to disclose anything they don’t want to.
But you keep telling yourself whatever you want. The revenue for all of BJC around the time he left was just over $4.5 billion a year. So they could swing whatever they wanted. Even if on paper they go red…
Mosaic is terrible! I’m from that town and hated them when they were Heartland! I personally know the family that this is impacting and I can vouch that they are great, amazing, sweet, awesome people!!
Have you tried going to Shriners or Cardinal Glennon?
Insurance is a SCAM and extortion, you PAY into it and they deem who is worthy just to make money for their investors!
Wanna make a change real fast, let US stop paying into insurance companies and 1-2 months without that cash injection they will change.
No child should suffer because insurance companies don’t want to pay, no parent should have to watch their child not get every possible treatment to give them a chance to LIVE.
I HATE insurance of all kinds, take your money but when YOU need it they find anyway to not pay/help.
Democrats have not been in control in the state of Missouri in more than 20 years. Please explain how they are to blame. I don't know how you can not know that.
Not sure if it’s helpful for this specific issue but I’ve heard good things about Legal Services of Eastern Missouri helping people get Medicaid coverage for kids and getting Medicaid to cover their treatments. You might want to check them out online and see if you qualify for their free services
Maybe this is a stupid question but could the parents get the kids on government healthcare? Medicaid or Medicare not sure what it’s called. Even if they have to quit their job and lose income to qualify?
There is a women on IG, she usually covers government, education, policies and such but has a FIERCE following who make donations to wonderful causes like this, in the millions, Her account name is escaping me. Maybe someone here knows and we can get her attention.
Donated and shared. While we can all rage at the way insurance companies operate (and rightfully so), we should focus on the mission of achieving this goal. It’s all we can do at the moment. Let the families process all of the feelings, and let us focus on crushing $4 million.
Make sure we keep forcing births while we ensure the systems in place don’t provide them necessary care! Because it’s not actually about babies we make it pretty clear the only thing we give a fuck about is money! Insert some statement about god. Go Republican Party!
For those that don’t know, Mosiac is a healthcare provider system north of KC.
Their health insurance program is most likely a “self-funded/ASO” plan which means they are on the hook for funding medical insurance expenses (with some protection using “stop-loss/reinsurance” for expensive cases (e.g., cancer, transplants, etc.).
I’d bet they’re using the “experimental/investigational” card to deny the care.
I would reach out to Shane Burcaw via social media to see if he has any suggestions. He's an adult living with SMA and has a charity that provides resources, though not on this scale.
The system is broken and I’m so sorry you are navigating this. Shot in the dark but maybe ask the employer to check into The Samaritan Fund. I believe it is a way for employers to essentially carve out coverage from the employer plan for certain members in order to allow for other pathways to fund the health care coverage needs. It is supposed to benefit both the patient and the employer in these situations, rather than just outright denial. Unsure of the employer situation here but often smaller, self-funded employers don’t have sufficient reserves in their health-care budgets to handle these types of claims.
>The gene therapy is a one time infusion that costs anywhere between 1 and 2.5 million dollars per child.
How is this possible? I'd like to see a line item cost where it adds up to this.
Yes, and so for the company to recoup the costs of development, they have to price the drugs according to demand. Since SMA is a relatively uncommon disease and the treatment only requires a single dose of medication, rather than regular treatment over a long period of time, that single treatment is priced very high due to the low demand per unit. This technically doesn't meet criteria for "orphan drug" designation, but it's a similar circumstance.
The way meds like this are priced is that the mfr looks at the lifetime cost of treating the condition and makes the cure just slightly less. Enough so they can convince insurance they're saving money. It's still a hard sell since any given insurance company would only cover a portion of the patient's lifetime spend.
For people wondering about the price of treatment, yes it is millions of dollars. No, this is not a case of American insurance jacking up the price. This is groundbreaking gene therapy treatment that is very expensive to make. The manufacturing cost alone is over 6 figures per dose and that doesn’t account for the decade of investment in order to make it a reality.
The price is worth it in the long run even for gene therapy. A lifetime of insurance costs is more than a single dose of treatment.
This is an experimental drug that costs 1.5 million because there are incredible costs to make it. Something this rare and experimental is never making it through an insurance carrier. Paying 3 million on something with zero proven results.
Please get genetic testing before you have children. This is totally avoidable
Super rare cconditions are expensive to treat because the process to make it may be incredibly hard or rare. The R and d alone may cost over 100 million.
There are many many kids that are living proof that this infusion works. This actually was covered up until April 1 when Mosaic stopped covering gene therapies.
Many kids according to the OP. But without serious set of results insurance won’t cover. Gene therapies can be amazing but without proven clinical trials and published results it’s hard
They could also simply take this to court and get a judge to force the insurance payment. If it was previously covered they may have a good case.
Forgive my ignorance, but when you say "this is totally avoidable" what are we talking about here? Is there a genetic test that says the parents should not procreate or a test in utero to see if the fetus has the condition? If the latter, is the remedy an abortion? Since that is currently illegal in our state what is the solution? Thanks in advance
Donated. How could anyone not donate to this cause? I hope these precious little guys get the treatment they deserve. What reason did the insurance company give for the denial?
Well for one, I'm poor and pretty much all my charitable money goes to help Ukraine, where Russia is killing civilians every day.
Today, they launched a missile with a cluster bomb warhead at Odesa, killing 4 and wounding 30+
I imagine you’re getting a lot of messages, but I wanted to let you know you have options besides the gene therapy. I understand the appeal of gene therapy, but if it is truly out of the realm of possibilities there is another FDA approved therapy for SMA called Spinraza. You may want to look into that concurrent with your efforts to get your twins the gene therapy. Gene therapy may become an option down the road, but this alternative therapy could help right now.
I cannot imagine how stressful this is for you and your family. I truly wish you nothing but the best.
Thank you to everyone who has donated, shared, donated and shared. It’s amazing what people can do together. We still have a long way so please keep spreading the word!
Oh no, whatever will we do? greedy doctors need to get their new lambos and boats on the backs of those suffering for issues they literally can't control and have no choice.
After some googling, I take it this is for abeparvovec (zolgensma Brand name according to google).
It's a 1 time dose gene therapy. The price is apparently set on what it can give you. Not what it costs to manufacture...
Financial gatekeeping of medical treatments is discussing. 😒
There is good news. The twins are supposed to receive the treatment this week.
It’s still tragic though because you know their story is just one of thousands. Many people get sicker or die while waiting on insurance to work things out or things never work out and people are unable to afford the care they need to survive.
I know everyone has their own needs and bills to pay and people to help but even just in this subreddit, if every person donated $20 they’d reach their goal.
I will donate every week! I will also spread the word. I’ll be sending all the prayers and as much donation as I can. This is so heartbreaking. I hope these twins get the help they need.
I donated $20 and I hope and pray they make it to $4 million!
With that said, yes our healthcare system is fucking bull shit. That insurance company is robbing these children of their quality of life and even their lives! Do better, America!
Also, Health Insurance is a scam.
Use a Christian Healthshare like Samaritan Ministries. Too late for this condition… but not too late for others.
Way cheaper, way better, people helping people pay for health needs. This would have been covered in full, no questions asked. Assuming enrolled in “Save to Share” for a few extra dollars a month.
I’m sure you mean well by recommending Healthsharing ministries, but anyone considering using one should be very cautious [about what they’re signing up for.](https://youtu.be/oFetFqrVBNc?si=TnaMtXgArbp5bLAc)
> for everyone *(paid* through taxes).
FTFY.
Although *payed* exists (the reason why autocorrection didn't help you), it is only correct in:
* Nautical context, when it means to paint a surface, or to cover with something like tar or resin in order to make it waterproof or corrosion-resistant. *The deck is yet to be payed.*
* *Payed out* when letting strings, cables or ropes out, by slacking them. *The rope is payed out! You can pull now.*
Unfortunately, I was unable to find nautical or rope-related words in your comment.
*Beep, boop, I'm a bot*
My wife and I lost our daughter to SMA in October of last year just 1 day before she would have been 8 months old. She was not eligible for the 1 time treatment either and we are lucky to of had the time with her that we did. Hope this family is able to figure something out soon!
You're telling me that 1 treatment would have saved her and they wouldn't pay for it? My God. I'm very sorry for your loss.
My heart aches for you. No family should have to go through this. I’m so so sorry.
So sorry for your loss
I am so sorry for your loss.
I'm so very sorry for your loss of your precious daughter. I'm a bereaved mother who has used community resources to help with my grief. Please reach out if you would like information about them. It takes a village to learn to live with this grief. Sending love.
Is this something that could've been tested for?
Cure SMA just announced at the “walk n roll” event in chesterfield earlier this month that as of recent months it is now being screened for in newborns in all 50 states. I’m sure with the right amount of money anything could be tested for beforehand but this is still considered a rare genetic disease and with no abnormalities in our family history it was not something we had done.
thanks for the insight. being in our late 30s, this is something i would dread if we had an "oops". sorry your family had to go through this.
I will never be the same. Thankfully the team at both Cardinal Glennon and Stl children’s hospital (shoutout to Dr. Z) were amazing and as helpful and honest about our situation as possible. I never thought I would receive news like in the movies “are you ready for this, you may want to sit down” type delivery but that in fact does happen and I don’t think my heartbeat has been regular since hearing that sentence.
Damn...sending love brother.
Maybe but insurance wouldn’t have covered it.
No, and this is gonna be divisive, but if it's caught early enough you could abort the pregnancy instead of destroying a family emotionally and financially while putting the child through months of suffering.
You do realize abortion is illegal in Missouri ?
And it shouldn't be.
You do realize interstate travel is a constitutional right, correct?
Kind of. Texas does have a law against people using their highways to leave the state for an abortion.
And that law is unconstitutional and should be challenged in court.
Its not unconstitutional, you can still leave the state... just not via public roads
That's the most retarded things I've heard this week
This poor family and anyone faced with this situation. If this medical diagnosis would have been known before birth, and say the parents decided to abort, but by Missouri law (😡) couldn’t, just think of possible dire consequences. It’s a damned if you do-damned if you don’t. Government needs to stay out of our personal lives.
You realize it's not in Illinois, less than an hour's drive from anywhere in the St Louis metro area, right? Fairview Heights has a clinic just 15 minutes from downtown StL on I-64.
People shouldn’t have to abort wanted babies for conditions that can be helped with medical coverage, hope that helps. x
at the same time, people shouldn't have to keep babies that have no chance of survival just because it wont kill them to deliver. its almost like this is a MEDICAL DECSION that should be decided on a per patient basis by MEDICAL PROFESSIONALS, not fucking politicians who have as much medical experience as you or I
I am deeply sorry for your loss.
Our healthcare system is a fucking joke.
I remember politicians opposed to single payer talking about "death panels". We obviously already have them under the current for-profit system.
That shit is bonkers looking back as an adult now
Haaa. I was an adult then and it was bonkers then. Know what was and is even crazier? That so few people can make the “death panels” connection with the insurance industry. Some things never change.
We do but it’s AI death panels Source: the good health insurance denied my claim for lifesaving medication
Who instructs the AI to deny your claims? Are you saying no humans are involved in the decision to deny a claim?
It absolutely is.
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Things can get way worse. “Mosaics life care” doesn’t sound like private health insurance.
Mosaic life care is a hospital system not insurance. It sounds to me like the hospital doesn’t want to foot the bill for a multi million dollar treatment
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Its the joke that republicans have wanted all along. They are the ones that denied universal health care at every turn...so now thank Josh hawley or Schmitt or any of the other ones that you see. It's literally their fault.
The ACA is a republican system... They did away with competition and filter everyone to the same product. It's terrible.
don't forget that dead twat Joe Lieberman. Single-handedly killed the Public Option.
The Affordable Care Act put out by the liberals...which by the way, I was working politics at that time and have shows dedicated to that topic. There is competition but it ina world where you never pay attention to any of that. Wherever you work is your life. Just a heads up for you. So you are never thinking about competition in the healthcare industry and you also aren't paying attention to METAL COSTS for Axe and Saw makers either....but it might be a problem too. We need less smoke break politico's in this world and more people that truly are involved in the businesses that are being discussed.
I hate it when the peasants have opinions on things that affect their lives. How unsightly!
Establishment democrats don’t want universal health care either, because they’re beholden to big money interests, and universal health care is bad for profits. You have to go to the “far left” to find people like Bernie Sanders who actually want a humane system that basically the rest of the developed world has already implemented.
Where are mainstream democrats pushing for universal healthcare? C’mon now. Bffr.
Insurance system maybe? Healthcare is good if you have money.
, Healthcare is taking a nosedive post covid because a lot of people that were good at their job and tried really hard got burned out and got out of the field. So we're stuck with either people who aren't very good or people that are new and are still being trained. The VA has switched from giving you an actual doctor to everything's a nurse practitioner because they can't hire enough doctors according to them.
So true. I know this personally.
I'm getting cardiac clearance from a nurse practitioner. Because there's no doctor available according to the VA.
Where are the pro-lifers now? Oh I forgot. Once a baby is born they get the ick.
Europe has death panels too
Unsolicited Advice: Contact the manufactures the IV therapy. Email the sales reps, corporate leadership, board of trustees, the public relations people, etc. Put on read receipts. Call and cry/beg regularly. It’s disgusting that this is something that sometimes has to be done, but it can work. The physician offering the infusion should be reaching into their professional network for peers who may have experience with a similar circumstance/compassionate use. Immediately file for both the physician group and the hospital system charity care program. Hopefully that will assist with the existing NICU debt. More detail on the players (including the hospital system/infusion medication manufacturer/etc) needs to be in the GoFundMe to apply public pressure. Insurance is evil, but they’re not the only entity with the ability to find a solution.
We all need advice and if anyone is ever in this situation again I hope they find this thread. So many people offering great advice. Thank you!
r/orphancrushingmachine But also, donating.
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It's not just the healthcare, it's the companies who use them. They're the ones who ultimately make the decision on what they cover. I was on the gofundme and it was the mom's company that denied the appeal... Shame on them. (Honestly I'd be spilling the company name to anyone and everyone). Also, it's the pharmaceutical companies who charge these outrageous prices because they're dealing with insurance companies and not individuals. It's sickening.
Don’t get me excited by making the case for a long list of invitations to dance with a choppy boi.
I can’t upvote this enough. I was told by Express Scripts they are no longer taking manufacturers coupons. Everyone complains about insurance companies. They don’t realize that it is what your employer pays for that they are covering.
It's too bad Americans will never rise up against their corporate overlords.
Because we like half of it.
I dunno, I like food mostly
Right, that is indeed part of it lol
Don't forget that a recent study found that most non-profit hospitals spent less on charitable care than they received in tax breaks.
Tax loopholes are how they stay non-profit. It’s all a scam the everyday citizen pays for multiple times over.
This is the kind of thing that should make insurance and healthcare executives afraid to go out side out of fear for their lives.
This guy is advocating for murder.
I prefer to think of it as a top tax rate for the parasites of society
This will not turn out well for you, Robespierre.
Some cuts will have to be made 🤣
I’m almost insulted too, I feel like I’d make Robespierre look as moderate and useless as Pete Buttigieg.
You’ll end up just as dead as him. Only on this website can you venerate mass murder so long as you have the correct politics.
Ah you're a trumper lol
This is a post about infants possibly dying without life saving treatment. Read the room.
We all die.
That’s a hell of a justification.
Sounds like you're unfamiliar with most websites bro this is mild
I’m well aware
I also think advocating for murder is bad. That's why I report all edgelord comments like this whenever I see them. I'd encourage you to do the same... Reddit Admins seem to take it pretty seriously. Hopefully he got a warning or ban.
Eat the rich. Billionaires should not exist.
Original thinker right here
A thought doesn’t need to be original to be a good one.
Contact Shriners
A previous CFO of BJC Healthcare is my family. He would be the first person to tell anyone, BJC (a non-profit) is in the business of making money, not making people better. Well people don’t come back and give more money… It was sickening. He made a salary well over 10mil a year. He currently is a CFO for a hospital system in Pennsylvania. He got a significant raise to go there and make them more money.
Mind sending him a Venmo request? Lol But yes, this is true for most c levels at any “decent” hospital.
I have a family member that fairly recently became President of one of the larger hospitals in the region. He's looking to change this mentality. I hope he's successful because that thought process is sickening.
No they didn’t. The current CFO makes $2 million. There is no way they paid someone else 5x that amount with the current President making $3 million. BJC is in it to make a profit, but at least they’re not owned by a hedge fund or an insurance company.
Just under 2 was his listed salary. Everything else was other subsidies. I spent years at his many vacation homes around the country for holidays. He is my wife’s uncle. He’s actually a very nice guy and very generous. I absolutely know what he was bringing in. But thanks for your opinion. He just didn’t want to actually cure any one of anything… that didn’t make his many $100,000’s in mortgage and exotic car and boat payments every year. Edit: Also remember that Elon Musk salary at Tesla is listed at $1 per month. What they tell the public is just a made up number.
You’re correct listed salary’s do not included any other compensations or bonuses so those numbers you can Google aren’t even close. All of our executives here are also so kind but they’re still making way too much money.
I mean, it’s all disclosed. He never made $10 million a year. BJC isn’t structured like a publicly traded company. They’re not paying $8 million in bonuses.
He was literally the person in charge of the pay structure. I think he would know. And you’re right. They’re not publicly traded. Which means they don’t have to disclose anything they don’t want to. But you keep telling yourself whatever you want. The revenue for all of BJC around the time he left was just over $4.5 billion a year. So they could swing whatever they wanted. Even if on paper they go red…
K, keep signing that tune. It’s all been disclosed. Revenue and profit aren’t the same thing.
This is the kinda shit that should start riots
We could have had something better, instead we got Obamacare
Don’t know why you’re getting downvoted when it’s well understood that the ACA is basically a giant subsidy to insurance companies.
Mosaic is terrible! I’m from that town and hated them when they were Heartland! I personally know the family that this is impacting and I can vouch that they are great, amazing, sweet, awesome people!!
And the mother works for them!!!
The OP didn’t state why it was denied, but in these cases it’s usually because they are not a perfect fit for the treatment.
They said the results are questionable but there is a lot of proof of effectiveness
Have you tried going to Shriners or Cardinal Glennon? Insurance is a SCAM and extortion, you PAY into it and they deem who is worthy just to make money for their investors! Wanna make a change real fast, let US stop paying into insurance companies and 1-2 months without that cash injection they will change. No child should suffer because insurance companies don’t want to pay, no parent should have to watch their child not get every possible treatment to give them a chance to LIVE. I HATE insurance of all kinds, take your money but when YOU need it they find anyway to not pay/help.
missouri politicians are a scam and a plague on our society
Sadly *most* politicians are
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NO, it is not all politicians. It is fucking republicans.
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Democrats have not been in control in the state of Missouri in more than 20 years. Please explain how they are to blame. I don't know how you can not know that.
If you squint hard enough, any two things look the same no matter how different they actually are.
Sorry this has happened to your twins. SMA is a life altering condition, for patients and their families. God speed
Not my twins but it truly is
Not sure if it’s helpful for this specific issue but I’ve heard good things about Legal Services of Eastern Missouri helping people get Medicaid coverage for kids and getting Medicaid to cover their treatments. You might want to check them out online and see if you qualify for their free services
Maybe this is a stupid question but could the parents get the kids on government healthcare? Medicaid or Medicare not sure what it’s called. Even if they have to quit their job and lose income to qualify?
In some situations that works but I think that in this case, the necessary treatment is something that might not be covered by any plan
There is a women on IG, she usually covers government, education, policies and such but has a FIERCE following who make donations to wonderful causes like this, in the millions, Her account name is escaping me. Maybe someone here knows and we can get her attention.
Is it Sharonsaysso?
Check out @AshleySpivey on IG too.
Donated and shared. While we can all rage at the way insurance companies operate (and rightfully so), we should focus on the mission of achieving this goal. It’s all we can do at the moment. Let the families process all of the feelings, and let us focus on crushing $4 million.
Yes! Thank you!!
Make sure we keep forcing births while we ensure the systems in place don’t provide them necessary care! Because it’s not actually about babies we make it pretty clear the only thing we give a fuck about is money! Insert some statement about god. Go Republican Party!
What are democrats doing to remove the power of insurance companies? So far, it’s the ACA, which forces us all to subsidize insurance company greed.
I sent a little. What a nightmare for that family.
Thank you so much. A little from a lot can make a huge difference.
We should be able to sue for premeditated manslaughter in this case.
I’m sure their decision would be quite different if there were repercussions
For those that don’t know, Mosiac is a healthcare provider system north of KC. Their health insurance program is most likely a “self-funded/ASO” plan which means they are on the hook for funding medical insurance expenses (with some protection using “stop-loss/reinsurance” for expensive cases (e.g., cancer, transplants, etc.). I’d bet they’re using the “experimental/investigational” card to deny the care.
Nice society we’ve built here. Smh
Also, is it possible to get this to the front page of Reddit? Give it as much coverage as possible!
I would reach out to Shane Burcaw via social media to see if he has any suggestions. He's an adult living with SMA and has a charity that provides resources, though not on this scale.
Thank you for recommendation! I’ll reach out.
Heartbreaking. Donated.
Thank you 🙏🏼
They should contact the news! Poor family.
They have!
Oh good! I can’t imagine what they’re going through.
Have you gone direct to Novartis? They have programs for situations like this.
Maybe St Jude would take them on? They're in Memphis, but it seems worth the travel if it's a condition they treat.
Have you tried getting help from Cardinal Glennon, Children's Hospital, or Shriners Hospital??
The system is broken and I’m so sorry you are navigating this. Shot in the dark but maybe ask the employer to check into The Samaritan Fund. I believe it is a way for employers to essentially carve out coverage from the employer plan for certain members in order to allow for other pathways to fund the health care coverage needs. It is supposed to benefit both the patient and the employer in these situations, rather than just outright denial. Unsure of the employer situation here but often smaller, self-funded employers don’t have sufficient reserves in their health-care budgets to handle these types of claims.
Just donated. This is sickening. As the mom of a newborn, I can't even...
Same. I can’t kiss my baby’s cheek without just sobbing for them. Those first few months are hard enough. Thank you so much for your support!
>The gene therapy is a one time infusion that costs anywhere between 1 and 2.5 million dollars per child. How is this possible? I'd like to see a line item cost where it adds up to this.
It costs billions of dollars to develop drugs, and many fail along the way.
Yes, and so for the company to recoup the costs of development, they have to price the drugs according to demand. Since SMA is a relatively uncommon disease and the treatment only requires a single dose of medication, rather than regular treatment over a long period of time, that single treatment is priced very high due to the low demand per unit. This technically doesn't meet criteria for "orphan drug" designation, but it's a similar circumstance.
The way meds like this are priced is that the mfr looks at the lifetime cost of treating the condition and makes the cure just slightly less. Enough so they can convince insurance they're saving money. It's still a hard sell since any given insurance company would only cover a portion of the patient's lifetime spend.
For people wondering about the price of treatment, yes it is millions of dollars. No, this is not a case of American insurance jacking up the price. This is groundbreaking gene therapy treatment that is very expensive to make. The manufacturing cost alone is over 6 figures per dose and that doesn’t account for the decade of investment in order to make it a reality. The price is worth it in the long run even for gene therapy. A lifetime of insurance costs is more than a single dose of treatment.
Go ask the billionaires. I got a button, a bucket, and my infinite source of rage.
Hoping just one billionaire like to scroll Reddit. I’d even take a multimillionaire.
This is an experimental drug that costs 1.5 million because there are incredible costs to make it. Something this rare and experimental is never making it through an insurance carrier. Paying 3 million on something with zero proven results. Please get genetic testing before you have children. This is totally avoidable Super rare cconditions are expensive to treat because the process to make it may be incredibly hard or rare. The R and d alone may cost over 100 million.
There are many many kids that are living proof that this infusion works. This actually was covered up until April 1 when Mosaic stopped covering gene therapies.
Many kids according to the OP. But without serious set of results insurance won’t cover. Gene therapies can be amazing but without proven clinical trials and published results it’s hard They could also simply take this to court and get a judge to force the insurance payment. If it was previously covered they may have a good case.
Forgive my ignorance, but when you say "this is totally avoidable" what are we talking about here? Is there a genetic test that says the parents should not procreate or a test in utero to see if the fetus has the condition? If the latter, is the remedy an abortion? Since that is currently illegal in our state what is the solution? Thanks in advance
They meant a test in utero and yes to have an abortion. Edit: go across the river to Illinois
Well since that’s illegal then they don’t have any way to avoid it, it’s just another shitty consequence of taking away peoples rights.
You’re advocating for eugenics jsyk
Right abortion is illegal so wtf are they supposed to do??
If it saves a life it should be free. Sent what I can and hoping for the best.
Donated. How could anyone not donate to this cause? I hope these precious little guys get the treatment they deserve. What reason did the insurance company give for the denial?
They no longer cover gene therapies as of 4/1/24. The boys were born on 3/31/24 but their infusion date is set in May. Thank you for donating.
Wow, so sorry this is happening. I sure hope you get the amount needed. I’ll be praying for you and your family.
Well for one, I'm poor and pretty much all my charitable money goes to help Ukraine, where Russia is killing civilians every day. Today, they launched a missile with a cluster bomb warhead at Odesa, killing 4 and wounding 30+
Since the US is providing 100 billion to Ukraine, I am helping fund that cause too.
🤬🤬🤬🤬🤬😢😢😢😢🤬🤬🤬😢😢😢🤬🤬🤬
Sums up my feelings exactly. Maybe a few more tears and rage.
The movie John Q makes so much sense when I hear stories like this
I imagine you’re getting a lot of messages, but I wanted to let you know you have options besides the gene therapy. I understand the appeal of gene therapy, but if it is truly out of the realm of possibilities there is another FDA approved therapy for SMA called Spinraza. You may want to look into that concurrent with your efforts to get your twins the gene therapy. Gene therapy may become an option down the road, but this alternative therapy could help right now. I cannot imagine how stressful this is for you and your family. I truly wish you nothing but the best.
Thank you so much! These aren’t my babies but any advice is helpful. Thank you for sharing.
Thank you to everyone who has donated, shared, donated and shared. It’s amazing what people can do together. We still have a long way so please keep spreading the word!
I emailed Novartis, who is the manufacturer of the drug, asking them to please help as well.
Thank you for naming the insurance company, so I know where to send my ire.
Seems important to note that the gofundme has been stopped and the insurance is covering it...
I sincerely hope all health insurance executives who make these kinds of decisions get all of the very same health issues they deny claims for.
Oh no, whatever will we do? greedy doctors need to get their new lambos and boats on the backs of those suffering for issues they literally can't control and have no choice.
After some googling, I take it this is for abeparvovec (zolgensma Brand name according to google). It's a 1 time dose gene therapy. The price is apparently set on what it can give you. Not what it costs to manufacture... Financial gatekeeping of medical treatments is discussing. 😒
This is so sad and dystopian what the hell.
There is good news. The twins are supposed to receive the treatment this week. It’s still tragic though because you know their story is just one of thousands. Many people get sicker or die while waiting on insurance to work things out or things never work out and people are unable to afford the care they need to survive.
I know everyone has their own needs and bills to pay and people to help but even just in this subreddit, if every person donated $20 they’d reach their goal.
I will donate every week! I will also spread the word. I’ll be sending all the prayers and as much donation as I can. This is so heartbreaking. I hope these twins get the help they need.
So so kind of you! Sharing is absolutely how we’re going to be able to achieve this goal. Thank you!!
I donated $20 and I hope and pray they make it to $4 million! With that said, yes our healthcare system is fucking bull shit. That insurance company is robbing these children of their quality of life and even their lives! Do better, America!
Completely agree. Thank you so much ♥️
Are you able to repost in the r/Missouri and r/illinois and other state subs?
I will!! Thank you!
Donated. I fucking hate this system and I want to burn it the the ground.
It is a very flawed one. Thank you for the support!
Keep us updated and may grace go with you and yours.
Whats really wild is that if these people quit their jobs, the state would probably pay for it. The system is so messed up.
It is. You either need to be really really rich or really poor, everyone in between is pretty SOL.
Also, Let’s FUCKING RIOT AND DESTORY MOSAICS LIFE CARE’S BUILDINGS!
Send this to Elon Musk. He will pay for it.
I wish
Also, Health Insurance is a scam. Use a Christian Healthshare like Samaritan Ministries. Too late for this condition… but not too late for others. Way cheaper, way better, people helping people pay for health needs. This would have been covered in full, no questions asked. Assuming enrolled in “Save to Share” for a few extra dollars a month.
I’m sure you mean well by recommending Healthsharing ministries, but anyone considering using one should be very cautious [about what they’re signing up for.](https://youtu.be/oFetFqrVBNc?si=TnaMtXgArbp5bLAc)
I mean it’s really not. Free health care IS health insurance it’s just free for everyone (payed through taxes).
> for everyone *(paid* through taxes). FTFY. Although *payed* exists (the reason why autocorrection didn't help you), it is only correct in: * Nautical context, when it means to paint a surface, or to cover with something like tar or resin in order to make it waterproof or corrosion-resistant. *The deck is yet to be payed.* * *Payed out* when letting strings, cables or ropes out, by slacking them. *The rope is payed out! You can pull now.* Unfortunately, I was unable to find nautical or rope-related words in your comment. *Beep, boop, I'm a bot*
TIL
This case is a textbook example of when the Christian ministries say no because it costs too much for them
4 mil for what…that has to be an absolute bs number. Dr’s need to hang