Matthew Cortland (they): Their odds of survival have meaningfully increased because of this press coverage. Running a press offense is integral for dying children being murdered by an insurer, here Mosaic Life Care:

Their odds of survival have meaningfully increased because of this press coverage. Running a press offense is integral for dying children being murdered by an insurer, here Mosaic Life Care:

Two newborn twins were diagnosed with a rare disease and are in need of a one-dose treatment that would save their lives: Zolgensma, a $2.1 million drug. Their parents’ insurance cut the coverage of the drug the day after they were born

Newborn twins fight rare disease, family says it’ll cost $4.2 million to save their liveswww.wbtv.com New parents in Kansas City are fighting to save the lives of their newborn twins. They said the boys have a rare genetic disease that will cost the family millions of dollars to treat.

This is the CEO of Mosaic Life Care. Mosaic Life Care employs their mom, and, provides their health "insurance" – Mosaic Life Care decides what to cover. They've decided to let the babies die. www.linkedin.com/in/mike-poor...

If you want to reach out via LinkedIn, there you go. There's no amount of attention, no amount of annoying Mike, that's going to hurt these babies. They're already going to die. Unless....

Or give him a call Mike Poore, CEO Mosaic Life Care 5325 Faraon St. St. Joseph, MO 64506 (816) 271-6000

Or stop by.

Wait, the mother of the children being denied coverage works for the insurance company itself? Lady needs to burn the place to the ground like Milton in Office Space.

Sort of, it's a healthcare provider / hospital system

Yiiiiikes.

Based on what I've read, they're self-insuring so 🤷

Isn't this the origin story for Nathan Ford from Leverage?

Yes

They appear to be getting some comments on their Facebook page as well. www.facebook.com/MosaicLifeCa...

thank you dr the frog

this is now in their FB page but I don't have the brain for alt text

I can type it out:

alt (cont) government relations representatives, trustees and leaders who have conducted themselves with integrity to support, love and care for this issue. At Mosaic Life Care, every caregiver works with a servant's heart, and this is one of the finest examples of that value I have ever witnessed.

ty! I'm dealing with a csf leak and my brain power is not at its best. I *think* this means the babies will get the meds though.

These people have names and addresses

Oh that's an extra layer of cruelty that it's also her employer.

Blocking anyone who comes into my replies to advocate for QALYs / DALYs. bsky.app/profile/matt...

I need to talk about the bullshit being spewed in my replies by people who work in medicine/healthcare, who are advocating for QALYs/DALYs as IF THEY'RE NOT ABLEIST AS FUCK Imagine strangers filling out a survey with these sorts of hypotheticals, and their answers? Determine if you live or die 🧵

House GOP hearing on Quality-Adjusted Life Years | Matthew Cortlandwww.patreon.com Get more from Matthew Cortland on Patreon

Quality of Life should only be discussed when it’s the patient (or their healthcare proxy) making a call about the life THEY want to lead. No one else can determine how worthwhile a given lifestyle would be to someone.

I remain shocked that a patient, pharmacist, or physician has never [redacted] an insurance company HQ.

There's a story by Cory Doctorow ("Radicalized") which ends with a grieving husband serving a life sentence and also universal health care.

I also wonder how much of the R&D the drug company is "recouping" was actually funded by the NIH & done at a university...

A very large chunk, actually. There's multiple studies demobstrating that.

A one dose gene therapy is just a miraculous thing to behold.

I live in a country with universal health care. Also here biological medicines for rare conditions are not always provided. Only recently was it decided that a medicine for CF would be covered.

Yeah, private insurance is only one aspect of the problem. Universal coverage doesn't fix the rest of the problems, just one of many.

Yes this. Like, my knee-jerk reaction is, “well at least general medical care and screenings won’t bankrupt you”, which is of course a bad way to look at it, since people who need biologics SHOULD HAVE THEM COVERED UNDER UNIVERSAL HEALTHCARE.

If I was Emperor of America, the very first thing I would do is nationalize the drug companies. I remain angry to this day that the punishment for Purdue Pharmaceuticals in the opioid settlement wasn't the government takinging them over and running them as a generic drug manufacturer.

Like, don’t get me wrong, biologics by nature are kind of a pain in the ass to make, so I would expect them to be more expensive than a traditional med but we are in crazy pants land right now. 😑

Oh yeah. Unlike a lot of drugs, there's a legitimate cost factor to making this particular agent. But it isn't costing $2.09 million to make and ship.

there are medicines that are 50000 dollars per dose where tge question of coverage is decided on an annual basis. I can only imagine what it’s like to live with a condition where survival hangs on an annual review on whether you get the medicine that keep you alive. ->

> cynically a hospital took what the cost of annual treatment against what else it could fund. X hospital beds X no. of nurses X no. of doctors X no. Of surgeries.

I’m not saying this is right, but they have finite budgets (I’m talking about universal healthcare). It’s the trolley dilemma. I work for Medicaid and this is the stuff that has to be considered. It’s awful and not the fault of the providers, it’s big pharma.

That happens in countries with national systems as well, although at least multimillion dollar salaries for executives aren't part of the equation in those systems. The CEO wants a 7th yacht is a factor in those decisions here.

Yeah my coworker has MS… uses a biologic. There’s been some bad stretches. Meanwhile we ourselves are like, okay cool so we are going to get to pay the $1000 deductible PLUS half of the remaining cost of the retinal tear repair for my husband… god knows how much that is gonna run… 😭💸

I'm on TWO (MS and heart disease) and every so often I get the report able what they would cost if I wasn't supremely lucky to have them covered by my insurance. It's unhinged.

Yeah. One of my docs was going through the option of a replacement for my 80k a dose twice a year med and said people swap primarily for cost, it was "only" 40k a dose. I'm so lucky they cover it without review.

Hell, mine isn't even for survival. I'd just be bedbound and in extreme pain without it. It's only $700/monthly dose, but also has to go up for approval every single year. Waiting for that approval is one of the most stressful events and I dread it every time.

Oh hey, Novartis also gets credit for holding the $4.2 million gun to the babies’ heads.

I don’t know. If you develop a single dose gene therapy for a very rare condition, you should be able to charge a lot for it. R&D isn’t cheap, it can’t be prescribed off label and it’s not like they’re buying ad time on CNN. Maybe have a public agency buy the patent.

I mean, drug r&d (and production) for rare diseases seems like a pretty obvious case for something that should be entirely, generously publicly funded, and when a private company comes up with one, they should get some kind of reward in recompense for their patent being automatically voided

You when you offer somebody compensation for something they own, that’s called buying. Which is what I said.

That’s fair, I guess I initially read your statement about “buying” as voluntary, where to my mind, if we’re stuck with the medical system we are, such transactions should be compulsory

reminder that health insurance is specifically and deliberately not supposed to provide health care

www.kmbc.com/article/sain...

Family says coverage for specialized treatment for twins with rare condition obtained before hospital announcement of specialized fundwww.kmbc.com Days after they were born, Eli and Easton Reed were diagnosed with spinal muscular atrophy.

Trayvis, assemble

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