Posted on 05/03/2024 7:42:52 PM PDT by Morgana
An insurance company is coming under fire for denying the coverage of life-saving treatment to a set of twins who will otherwise likely die before their second birthday.
People Magazine reported that Eli and Easton Reed were born on March 31, 2024, and shortly after they were both diagnosed via newborn screening with Spinal Muscular Atrophy (SMA), a progressive genetic disorder that kills nerve cells in the brain and spinal cord. The National Institute for Neurological Disorders and Stroke states that there are different forms, including Types I, II, III, and IV with Type I being the most severe. Without treatment, most children with Type I will die before the age of two as they progressively lose the ability to walk, swallow, and breathe.
However, new hope has come in the form of a single-dose treatment of a medication called Zolgensma, which is being called a “miracle drug.”
In 2021, Live Action News reported the story of baby Joseph Crew Delia who was diagnosed with SMA after birth and was given the one-time IV infusion of Zolgensma, which targets the genetic root cause of SMA and can prevent the deteriorating effects of the condition. The life-saving medication, however, costs $2.1 million. While Crew’s insurance covered $500,000 of it, his parents raised funds to cover the rest. Today, he’s a healthy toddler.
Eli and Easton Reed each need a dose, making the out-of-pocket price tag for their parents $4.2 million — and insurance is refusing to cover any of the cost.
“Time is of the essence with this … since they don’t have symptoms as of right now,” the twins’ mother, Amanda Reed, told KMBC. “It’s best for them to receive this treatment now. Because once symptoms start, it’s un-reversible. So, time is of the essence, but we are still trying to explore all of our options.”
A GoFundMe was created to help raise money for treatment while the boys’ parents appealed the insurance company’s decision. But on April 26, the insurance company denied the appeal.
“I’m holding my heart in my hands,” the twins’ father, Austin Reed, told KMBC.
“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.”
Without the treatment, the deteriorating effects of SMA could set in within six months, causing the boys to never be able to sit independently and likely die of respiratory failure by age two. SMA is progressive and Zolgensma can’t undo damage that is already done.
It stops the disease’s effects from progressing, so the sooner it is administered, the better.
This is so freaking messed up. Why do parents have to fight to save their babies lives?
Messed up is understatement.
Murdering your baby is “health care” and paid
Tranny surgery is “health care” and paid
Saving your child’s like? DENIED!
Bump for later.
I don’t think insurance companies provide unlimited coverage for anything, All companies generally have caps and exclusions.
Its hard also to pain the insurance company as the villian. The insurance company didn’t set the drug price at 2.1 million per dose.
It’s a total side point, but this is why I chose traditional Medicare over a “Medicare Advantage” plan when I hit 65. The Advantage plans offer all sorts of goodies. But they’re run by insurance companies, companies that care way more about money than they care about you.
Just my opinion. Folks nearing 65 should do their own due diligence.
Since this is a genetic disorder, the insurance company may classify the disease as a ‘Pre-existing condition, for members of that family. Thus, the insurers may have limited liability.
Back in the 1980’s I worked processing and paying on health insurance claims. I got familiar with the expected corporate view on certain situations.
Biden wants to cut Medicare advantage.
So when will trandsgender be labeled as such?
That’s because the left’s bloodlust is never satisfied.
He better get Clinton’s ok as he started it.
What is the name of the insurance company that is refusing to pay for their treatment?
Zolgensma, is manufactured by Novartis.
Side note: If the twins were both illegal aliens, would they get the same treatment as the twins and leave the American taxpayers to foot the bill?
Agreed about Advantage plans.
Pls know that if hospitalized, you do get 20% of Medicare pays for. One lifesaving stay can really hurt financially.
If insurance companies did provide coverage without limits, the premiums would be much higher and fewer people would be able to afford the policy. This is an awful situation but premiums were collected with a certain benefit promised and funded.
> One lifesaving stay can really hurt financially. <
Yes. I should have added in my post #5 that I purchased a Medicare Supplement plan to go with my traditional Medicare. The Supplement plan doesn’t have all the Advantage plan goodies. It just covers the traditional Medicare gaps.
You hit the nail on the head. This is how messed up our country has become.
“Messed up” beyond belief. None of us would have ever imagined this.
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