“This Makes Me Sick”: Newborn Twins Given Two Years To Live After Insurance Denies Them Treatment
Trigger warning: Infant illness
Newborn twins, Eli and Easton Reed, diagnosed with spinal muscular atrophy (SMA) after their birth on March 31, 2024, currently face a dire prognosis after the family’s insurance company denied lifesaving treatment.
According to the National Institute for Neurological Disorders and Stroke (NIH), SMA refers to a group of hereditary diseases that can damage and kill specialized nerve cells in the brain and spinal cord (motor neurons).
- Insurance denied coverage for newborn twins' vital spinal muscular atrophy treatment after their birth on March 31, 2024.
- Without treatment, SMA patients rarely live beyond two years; Zolgensma offers hope.
- $359,704 was raised through GoFundMe for Eli and Easton's life-saving treatment.
Motor neurons control movement in the arms, legs, face, chest, throat, and tongue, as well as skeletal muscle activity, such as speaking, walking, swallowing, and breathing.
There is no complete cure for SMA, the NIH states. However, some treatments, such as medications and physical therapy, can help manage the symptoms and prevent complications.
Newborn twins diagnosed with spinal muscular atrophy face dire prognosis amid insurance denial of lifesaving treatment
Image credits: Amanda Reed
For Eli and Easton, from St. Joseph, Missouri, USA, the treatment included the medication Zolgensma, which the family said their insurance company stopped covering just one day before the twins were born.
“Time is of the essence with this … since they don’t have symptoms as of right now,” the twins’ mother, Amanda Reed, told KMBC earlier this week.
A blood test is available to look for mutations or deletions of the SMN1 gene. This test identifies at least 95 percent of SMA Types I, II, and III, and it also may reveal if a person is a carrier, the NIH explains.
Image credits: Amanda Reed
Amanda further explained: “It’s best for them to receive this treatment now because once symptoms start, it’s un-reversible [sic].
“So, time is of the essence, but we are still trying to explore all of our options.”
“I’m holding my heart in my hands,” the twins’ father, Austin Reed, told the Kansas City-based TV station.
He added: “The fact that their life is in somebody else’s hands, whether they get this treatment or they don’t, you know, then that’s somebody else’s choice and that’s hard to cope with that right now.”
Baby boys Eli and Easton were born on March 31, 2024, in St. Joseph, Missouri, USA
Image credits: KCTV5 News
Without treatment, children with SMA don’t usually live more than two years, Kids Health says. With treatment, children with type I SMA are starting to live longer.
Type II begins to affect children between 6–18 months old. Children can sit independently but cannot walk.
Kecia Vant Hof, Amanda’s step-sister, created a GoFundMe page to help raise money for the baby boys. So far, $359,704 has been raised.
Image credits: Austin Reed
The parents’ medical insurance chose to stop covering gene therapy, one of the recognized treatments for SMA, as of April 1, 2024, leaving Amanda and Austin incapable of paying for the lifesaving treatments, Kecia wrote.
“The gene therapy is a one-time infusion that costs anywhere between $1 and $2.5 million per child,” Kecia argued.
On April 27, Kecia informed fundraisers that evidence had been collected to appeal the insurance’s decision, which was eventually denied.
Without treatment, children with SMA don’t usually live more than two years
Image credits: Amanda Reed
“Amanda and Austin are devastated and are at a loss to figure out how to pay for the treatment their children need,” the concerned step-sister informed.
On Tuesday (April 30), Kecia announced that the fundraiser had been stopped “with the great hope, the boys will be able to receive the medication soon.”
And last night (May 1), Kecia wrote: “We had paused the GoFundMe but people have continued to reach out wanting to continue to donate for the boys and their medical futures.”
Image credits: KMBC9
“Many powerful people in the state of Missouri are working so hard to make sure the boys get the medication they need and we appreciate any support/encouragement as we continue this process.
“Again, thank you all so so much.”
“Insurance in this country is disgusting,” a reader commented
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I agree with one of the posted comments. We will stop women from getting abortions, but we're okay with allowing insurance companies to let babies die? Further validates that we're nit pro-life, just pro-birth.
No one is okay with "letting babies die". This story pisses me off more and more every time I read about it. The parents are nothing but lying attention seeking idiots, at this point. They didn't close the fundraiser, it was closed by gofundme while it's investigated for fraudulent claims. The boys qualify for 100% medicaid coverage (yes, even with another insurance policy) and medicaid covers this treatment along with all other ones they need COMPLETELY. There would be absolutely zero cost out of pocket for them, and they've damn well been told this by the people at the hospital as it's standard procedure. It's horrible that the babies were born with this, and it's horrible the family has to go through it. It's going to be a very rough road, but it is covered financially. I can't stand people who use their children's issues as a means to get attention for themselves. Insurance companies suck, they need serious reform, but this isn't really about that.
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This angers me beyond expression. I'm so sick of healthcare being held over our heads like some sort of award that's given to those who are wealthy enough to afford it, instead of it being a human right. But, it's all about profit here in the US. If there's a way for someone to make money, whether it's the insurance companies or the pharmaceutical companies, you can bet they'll squeeze out every penny. And they have an entire government who'll support them in that. I'm disgusted and angry.
In cases like this, America is a weird and horrific place seen from right here in America. Greatest country in the world my American A*s!
Load More Replies...
The boys qualify for medicaid and medicaid covers Zolgensma completely. All they need is a single doctor to tell them the treatment is needed and it's fully covered. So, this story, although it sounds tragic, is not, and the fundraisers created are actually being reviewed for fraud (because they lied). I'm not defending the s****y healthcare system in the US, it's batshit crazy. But this is one case where it's not the system, it's people trying to pull at heartstrings and garner attention for something that isn't true. The boys can, absolutely, get this treatment, at no cost to them in their state. Even if their parents made a c**p ton more money, they'd still qualify for medicaid to cover any expenses an existing insurance didn't cover. The parents may not financially qualify for medicaid, but their boys do, automatically, because of the disability.
Do you have proof of this? Right now you are offering just as much evidence as the people you accuse of lying.
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I guess I'm alone in wondering if it is fair to the babies to extend lives that will never be healthy or reach any form of independence. I know I'm going to get pioed on, but actually think about it before going off knee-jerk emotions. There is zero chance that these children will ever live beyond early childhood, or have any other life than total dependency, probably almost completely unable to move or do anything for themselves, until they inevitably die. How is extending this a win for anyone?
I understand your point of view very well. I was pregnant once, and at my five month ultrasound, we discovered the baby had died. Tests showed she had a genetic condition called Trisomy 13. Barely 10% of those babies survive birth, and those that do, won't live past one year old, and suffer numerous defects which necessitates intense medical intervention. At the time, it was a soul-killing pain and grief. However, with time, healing, and perspective, I am glad she didn't suffer any longer than she did. As a side note: the US government and Fox News are now demonizing women who want to have abortions for this.
Load More Replies...
Some things should NEVER be a matter of "can I afford it". By this point you might just as well be leaving people out for the vultures. Though of course an excellent counter-argument would be that the insurance companies and the health don'tcare system *are* the vultures.
This should be tested for early in the pregnancy (11 weeks). It's not just the barbarity of the health care system. Make these tests available, standard, and free. Protect women's rights to abortion. These poor children should never have been made just to suffer. If we pressure or legally force women into growing and birthing children with such an awful prognosis as a society then we should absolutely foot the bill for the best care possible. Don't force them into the world, but if they come, give them the care they need!
Remember the Terri Schiavo case in 2005, the woman who was brain dead and kept breathing on life support? Remember how rightwing fanatics interfered with the husband's decisions because Schiavo's greedy parents wanted to steal the insurance money being wasted on a hopeless cause? (They would have pulled the plug themselves for the money, they DGAF about their daughter.) [ .......... ] In the EXACT SAME WEEK as Schiavo was in the news, Sun Hudson was being cut off medical care and left to die, just like the twins in the post, because "it was more profitable to kill the kid". The fact that Schiavo was white and wealthy while the Hudson family was Black and poor played a big part in how much media attention each story got. [ https://en.wikipedia.org/wiki/Sun_Hudson_case ]
I have a long healthcare background. The story doesn't name the insurance company, but it's almost certainly United Health or Cigna. Both for-profit, both notorious for nickle and diming you to death, and both will go out of their way to deny claims for the slightest excuse.
Can confirm. I have Cigna and am currently fighting to be tested for an abnormal heart rate. I guess if I have a heart attack first, they might pay.
Load More Replies... The gene therapy costs 1 - 1.5 million everywhere, also in the Netherlands. However, and I'm not saying this to rub salt in already extremely raw wounds, but it's also covered by the base health insurance here since 2021 (Zolgensma, not risdiplam, which costs around 4 - 7 million per treatment). It's insane that lives depend on money like this.
It's not insane. It's a grim calculus that applies in all areas of life. As you point out risdiplam is not approved, likely because it's too expensive. Im sure, like other public health systems, the Netherlands has an agency that evaluates treatments for effectiveness vs cost vs quality adjusted life years. The difference is that public healthcare systems and private is that publics systems make transparent decisions based on utility, but private ones make the decisions based on profit. EG COVID vaccines: Netherlands, recommended for age 60 and over. US, everyone over 6 mos., every year. Evidence vs. profit.
Load More Replies...
How the people who work at health insurance companies sleep at night?
it's some weird dystopian stuff called United States of America.
Load More Replies...
Welcome to the US, where they care more about the baby before it's born..... afterwards, who cares? 🙄sad but true... all insurance companies are concerned about are keeping the big bucks you pay every month or whatever. if they can deny you coverage or treatment, bet your sweet @ss they will....
USA is an awful country to live. Especially for the people with no money.
There is no reason why a single dose of this potentially life saving treatment should cost upwards of $1 million. That is absolutely insane. The pharma companies are just as evil as the insurance companies.
GRRRRRRRR!!! A hundred thousand times shame on their insurance company for denying the twins treatment. This makes me sick beyond sick - and wondering if I can count on the insurance I have through Obamacare. Insurance companies denying coverage for B.S. reasons should be regarded as FRAUD, and treated as such!
please keep on voting republikkkan and keep plebisciting capitalism ..... pro-life you said ?
America's medical system is so incredibly wrong. Insurance companies shouldn't be allowed anywhere near medical - woman should have say over their own bodies, children should be given help they need to survive, poverty shouldn't stop people from getting appropriate care. It's just so totally stupid how a bunch of old men and money whore get so much power over a basic human right
I was skeptical about AnkleByter's claim about Medicaid coverage, but it seems they're right. More details here: https://www.kidswaivers.org/
This is the most purely American story Ive seen in awhile. The people YOU voted for wh**ed very hard to make sure this is American life dont cry about it now.
This makes me angry and sad.. I'm so happy to live in a country where this kind of horror is impossible.
Goddamn America goddamn I hate this stupid red state. And what 10% (at the moment) or BPers voted for something other than "Yes, always" in the pole???
Name the insurance company! Let people know if they have this company's insurance, so they work on dumping them to get another company.
Spinal Muscular Atrophy is a type of Muscular Dystrophy. Muscular Dystrophy is expressed when both parents carry the gene for it and most common in males. Prenatal and natal genetic testing are essential. Spinal Muscular Atrophy is devastatingly painful, including death from the condition and is always fatal. I detest the US health care system. However, intensive understanding and thought is required regarding if extending the lives of these twins is the best course of action for them.
Because they're lying about it not being covered at all. While their existing insurance company may not cover it (and really, not all do, which sucks, but it is what it is), they can get it 100% covered by medicaid, but they'd rather get online and b***h about insurance companies, pull at heartstrings and try to get millions of dollars "donated" to them, because.....they need attention. It sounds crass, but it's true. That treatment is 100% covered by medicaid, and those boys qualify for 100% coverage (yes, even if they have another insurance policy as well). If they name the insurance company, it'll get them even more backlash than they're already getting because their fundraisers are being investigated for fraud. They didn't "close" it themselves, it was closed FOR them, because they lied about not being able to get it covered. Insurance companies suck, no doubt, and they need to be called out on their s**t, but you're not going to accomplish much if you start off with blatant lies.
Load More Replies... I agree with one of the posted comments. We will stop women from getting abortions, but we're okay with allowing insurance companies to let babies die? Further validates that we're nit pro-life, just pro-birth.
No one is okay with "letting babies die". This story pisses me off more and more every time I read about it. The parents are nothing but lying attention seeking idiots, at this point. They didn't close the fundraiser, it was closed by gofundme while it's investigated for fraudulent claims. The boys qualify for 100% medicaid coverage (yes, even with another insurance policy) and medicaid covers this treatment along with all other ones they need COMPLETELY. There would be absolutely zero cost out of pocket for them, and they've damn well been told this by the people at the hospital as it's standard procedure. It's horrible that the babies were born with this, and it's horrible the family has to go through it. It's going to be a very rough road, but it is covered financially. I can't stand people who use their children's issues as a means to get attention for themselves. Insurance companies suck, they need serious reform, but this isn't really about that.
Load More Replies... This angers me beyond expression. I'm so sick of healthcare being held over our heads like some sort of award that's given to those who are wealthy enough to afford it, instead of it being a human right. But, it's all about profit here in the US. If there's a way for someone to make money, whether it's the insurance companies or the pharmaceutical companies, you can bet they'll squeeze out every penny. And they have an entire government who'll support them in that. I'm disgusted and angry.
In cases like this, America is a weird and horrific place seen from right here in America. Greatest country in the world my American A*s!
Load More Replies... The boys qualify for medicaid and medicaid covers Zolgensma completely. All they need is a single doctor to tell them the treatment is needed and it's fully covered. So, this story, although it sounds tragic, is not, and the fundraisers created are actually being reviewed for fraud (because they lied). I'm not defending the s****y healthcare system in the US, it's batshit crazy. But this is one case where it's not the system, it's people trying to pull at heartstrings and garner attention for something that isn't true. The boys can, absolutely, get this treatment, at no cost to them in their state. Even if their parents made a c**p ton more money, they'd still qualify for medicaid to cover any expenses an existing insurance didn't cover. The parents may not financially qualify for medicaid, but their boys do, automatically, because of the disability.
Do you have proof of this? Right now you are offering just as much evidence as the people you accuse of lying.
Load More Replies... I guess I'm alone in wondering if it is fair to the babies to extend lives that will never be healthy or reach any form of independence. I know I'm going to get pioed on, but actually think about it before going off knee-jerk emotions. There is zero chance that these children will ever live beyond early childhood, or have any other life than total dependency, probably almost completely unable to move or do anything for themselves, until they inevitably die. How is extending this a win for anyone?
I understand your point of view very well. I was pregnant once, and at my five month ultrasound, we discovered the baby had died. Tests showed she had a genetic condition called Trisomy 13. Barely 10% of those babies survive birth, and those that do, won't live past one year old, and suffer numerous defects which necessitates intense medical intervention. At the time, it was a soul-killing pain and grief. However, with time, healing, and perspective, I am glad she didn't suffer any longer than she did. As a side note: the US government and Fox News are now demonizing women who want to have abortions for this.
Load More Replies... Some things should NEVER be a matter of "can I afford it". By this point you might just as well be leaving people out for the vultures. Though of course an excellent counter-argument would be that the insurance companies and the health don'tcare system *are* the vultures.
This should be tested for early in the pregnancy (11 weeks). It's not just the barbarity of the health care system. Make these tests available, standard, and free. Protect women's rights to abortion. These poor children should never have been made just to suffer. If we pressure or legally force women into growing and birthing children with such an awful prognosis as a society then we should absolutely foot the bill for the best care possible. Don't force them into the world, but if they come, give them the care they need!
Remember the Terri Schiavo case in 2005, the woman who was brain dead and kept breathing on life support? Remember how rightwing fanatics interfered with the husband's decisions because Schiavo's greedy parents wanted to steal the insurance money being wasted on a hopeless cause? (They would have pulled the plug themselves for the money, they DGAF about their daughter.) [ .......... ] In the EXACT SAME WEEK as Schiavo was in the news, Sun Hudson was being cut off medical care and left to die, just like the twins in the post, because "it was more profitable to kill the kid". The fact that Schiavo was white and wealthy while the Hudson family was Black and poor played a big part in how much media attention each story got. [ https://en.wikipedia.org/wiki/Sun_Hudson_case ]
I have a long healthcare background. The story doesn't name the insurance company, but it's almost certainly United Health or Cigna. Both for-profit, both notorious for nickle and diming you to death, and both will go out of their way to deny claims for the slightest excuse.
Can confirm. I have Cigna and am currently fighting to be tested for an abnormal heart rate. I guess if I have a heart attack first, they might pay.
Load More Replies... The gene therapy costs 1 - 1.5 million everywhere, also in the Netherlands. However, and I'm not saying this to rub salt in already extremely raw wounds, but it's also covered by the base health insurance here since 2021 (Zolgensma, not risdiplam, which costs around 4 - 7 million per treatment). It's insane that lives depend on money like this.
It's not insane. It's a grim calculus that applies in all areas of life. As you point out risdiplam is not approved, likely because it's too expensive. Im sure, like other public health systems, the Netherlands has an agency that evaluates treatments for effectiveness vs cost vs quality adjusted life years. The difference is that public healthcare systems and private is that publics systems make transparent decisions based on utility, but private ones make the decisions based on profit. EG COVID vaccines: Netherlands, recommended for age 60 and over. US, everyone over 6 mos., every year. Evidence vs. profit.
Load More Replies... How the people who work at health insurance companies sleep at night?
it's some weird dystopian stuff called United States of America.
Load More Replies... Welcome to the US, where they care more about the baby before it's born..... afterwards, who cares? 🙄sad but true... all insurance companies are concerned about are keeping the big bucks you pay every month or whatever. if they can deny you coverage or treatment, bet your sweet @ss they will....
USA is an awful country to live. Especially for the people with no money.
There is no reason why a single dose of this potentially life saving treatment should cost upwards of $1 million. That is absolutely insane. The pharma companies are just as evil as the insurance companies.
GRRRRRRRR!!! A hundred thousand times shame on their insurance company for denying the twins treatment. This makes me sick beyond sick - and wondering if I can count on the insurance I have through Obamacare. Insurance companies denying coverage for B.S. reasons should be regarded as FRAUD, and treated as such!
please keep on voting republikkkan and keep plebisciting capitalism ..... pro-life you said ?
America's medical system is so incredibly wrong. Insurance companies shouldn't be allowed anywhere near medical - woman should have say over their own bodies, children should be given help they need to survive, poverty shouldn't stop people from getting appropriate care. It's just so totally stupid how a bunch of old men and money whore get so much power over a basic human right
I was skeptical about AnkleByter's claim about Medicaid coverage, but it seems they're right. More details here: https://www.kidswaivers.org/
This is the most purely American story Ive seen in awhile. The people YOU voted for wh**ed very hard to make sure this is American life dont cry about it now.
This makes me angry and sad.. I'm so happy to live in a country where this kind of horror is impossible.
Goddamn America goddamn I hate this stupid red state. And what 10% (at the moment) or BPers voted for something other than "Yes, always" in the pole???
Name the insurance company! Let people know if they have this company's insurance, so they work on dumping them to get another company.
Spinal Muscular Atrophy is a type of Muscular Dystrophy. Muscular Dystrophy is expressed when both parents carry the gene for it and most common in males. Prenatal and natal genetic testing are essential. Spinal Muscular Atrophy is devastatingly painful, including death from the condition and is always fatal. I detest the US health care system. However, intensive understanding and thought is required regarding if extending the lives of these twins is the best course of action for them.
Because they're lying about it not being covered at all. While their existing insurance company may not cover it (and really, not all do, which sucks, but it is what it is), they can get it 100% covered by medicaid, but they'd rather get online and b***h about insurance companies, pull at heartstrings and try to get millions of dollars "donated" to them, because.....they need attention. It sounds crass, but it's true. That treatment is 100% covered by medicaid, and those boys qualify for 100% coverage (yes, even if they have another insurance policy as well). If they name the insurance company, it'll get them even more backlash than they're already getting because their fundraisers are being investigated for fraud. They didn't "close" it themselves, it was closed FOR them, because they lied about not being able to get it covered. Insurance companies suck, no doubt, and they need to be called out on their s**t, but you're not going to accomplish much if you start off with blatant lies.
Load More Replies...
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