Newborn twins fight rare genetic disease, family says it'll cost millions of dollars to save their lives

[pstokely]

https://www.kctv5.com/2024/04/29/newborn-twins-fight-rare-genetic-disease-family-says-it-costs-millions-dollars/?fbclid=IwZXh0bgNhZW0CMTEAAR1KMMPw1Qpk4UPYfiArEJbWRaQfnEv7Y9xSBREfbv4CiFQyaijLhd0ykvA_aem_AcgADTjy1argXGyLBewFyJobos9whsjLYBAYmp-DWiXApoMh7HF7XV2ZfPeeBFcaJDW5qSpOnjcODwtpj4So54cs

Their life expectancy is one to two years without treatment,” Amanda said. “It’s just been a nightmare, an absolute nightmare.”

The one-dose treatment that would save the boys’ lives is called Zolgensma, a $2.1 million drug. Both boys need it, so double that.

“These infants that receive that IV infusion, Zolgensma, before their symptoms start, like our boys’ symptoms haven’t started yet, studies show they’re living up to normal lives,” Amanda said.

It’s the race against the clock, as symptoms could pop up at any moment.

[Hekate]

1. Question for the drug company: why develop the drug in the first place?

The family is going to have to hold one helluva bake sale for that one single injection

[brer cat]

3. Good question, Hekate. A drug that can only be afforded

by the ultra-wealthy isn't very practicable at all.

[mopinko]

4. because ppl will do anything for their babies.

and it’s a pity ins companies r so short sighted. in so many cases, the alternative available treatments r much more expensive in the long run.
same w cancer drugs- a short course costing millions, or surgeries, and long chemo and radiation and, eventually, hospice. or a lifetime of followup.

there’s a dustup here in il over ozembic funding for medicade. yes, it’s expensive. but so is obesity and diabetes.

[Celerity]

13. But then the couple was blindsided by another nightmare. Their insurance and where Amanda works, Mosaic Life Care, cut

the coverage of the drug just one day after the boys were born.

“Children’s Mercy, because that’s where we would be going for the treatment, tried to ask them if it could be covered since they were born a day before the cut, and they were denied,” Amanda said. After many appeals and proof of success, the company still denied the Reeds.

In a statement, Chief Executive Officer Mike Poore told KCTV5, “Global pharmaceutical companies are putting profitability over affordability, making it impossible for employers like our hospital system to bear the financial burden of these exorbitant drug prices.”

In January 2024, Mosaic’s Health Care Trustees made the gut-wrenching decision not to cover expensive gene therapy used to treat ultra-rare diseases. Covering these treatments could cripple the financial viability of our health system, directly impacting our more than 4,000 employees and the approximately 270,000 people who rely on the health care we provide in small communities across four states.

We are working hard to help find alternative solutions and financial resources to help in this case. Bottom line: Families should not have to focus on the astronomical costs imposed by drug companies, but instead should be able to focus on the care of their children in a medical crisis.”

[riversedge]

2. "Amanda Reed gave birth to Eli and Easton on Easter. Five days later, after regular tests, doctors found the disease..."

They deserve a chance. And I hope the money will be found.


"
Amanda Reed gave birth to Eli and Easton on Easter. Five days later, after regular tests, doctors found the disease.

“They sat us down and told us that there were some very concerning labs that came back on both of our boys; for Spinal Muscular Atrophy,” Amanda said.

SMA prevents muscles from growing. They eventually wouldn’t be able to walk, swallow, or breathe on their own. One in 10,000 babies are born with the disease.

[scarletlib]

5. Where are all the 'every life is precious, every fetus is sacred they must be born" crowd.

Is that life no longer precious after its birth?

[Crunchy Frog]

11. It's critically important that they be born.

Once they're born they become utterly disposable.

[Fla Dem]

6. How about all those billionaires chipping in. It would be "chump change" for them.

[sarisataka]

7. I don't typically go for "the billionaires should..."

But in the interest of highlighting income disparity (not even considering current net worth) comparing Elon Musk making an estimated $333,000,000 daily vs a person making $800 per day ($100k/yr).

Applying a ratio of percentage of gross earning, the equivalent of Musk spending $4.2 million is the same as the $800/day earner spending $5.04.

[Johonny]

8. Proof America's health care system is broken

Their insurance and where Amanda works, Mosaic Life Care, cut the coverage of the drug just one day after the boys were born.

Hey, the place you work wants your kids dead because it's more profitable that way. Shit that happens only in America and Americans tolerate it because . . . ?

[Prairie_Seagull]

9. The answers are out there.

What needs changing is the 'will'. That could be humorous if it weren't so serious.

Humor, I believe, can stop us all from going bonkers in the meantime. Or at least soften the constant barrage of gut punches. Yell, laugh or cry. All completely valid and I have tried all.

Prefer laughter and medication. haha

[Calculating]

10. It brings up the question of how much a life is worth

Most people won't earn 2 million dollars over an entire lifetime of work. So in effect, saving these two babies might require the equivalent of a lifetime of paid labor from several people.

[Crunchy Frog]

12. But how much does it actually cost to make the medication?

That's the real cost, not whatever it is that the pharma company decides it can get away with charging.

And if these babies get the medication in time, they'll likely be normal, healthy, and with a good quality of life.

In the meantime, it's not uncommon for extremely preterm babies to run up NICU bills that are higher than that, for extreme heroic medical treatments whose costs really are that high, only for the babies to end up dying anyway, or surviving with extreme disabilities or lifelong major medical complications. And yet the usual practice is to continue treating for as long as the parents ask for it, or sometimes even against the parents wishes.

I don't think there's nearly as big of a dilemma here as you're suggesting there is.