r/TrueReddit • u/theindependentonline • 1d ago
Policy + Social Issues Two brothers have the same genetic disorder. Their insurance only covered life-altering treatment for one of them
https://www.independent.co.uk/news/world/americas/gene-therapy-brothers-insurance-chicago-b2820259.html538
u/theindependentonline 1d ago
Noah and Hunter both have Duchenne muscular dystrophy (DND), the most severe form of the genetic disorder. The disease causes muscle degeneration and weakness due to a mutation in the gene that produces dystrophin, a protein that protects muscle fibers from breaking down.
The disease, which mostly affects boys, gets worse over time. It makes it difficult to walk, run, jump, and play, with children often delayed in reaching milestones like crawling, walking and talking. The boys will likely use wheelchairs when they are teenagers, and life expectancy ranges between 30 and 40 years old.
In March, Noah received pioneering gene therapy to improve his mobility and quality of life through Alison’s health insurance plan. But when Hunter’s application was submitted in late May, authorization for exactly the same treatment was denied.
“The reason on our denial letters is that it's not medically necessary,” the mom-of-three said from her home in Winnetka, just outside Chicago. “It was very blindsiding. They didn't ever deny my other son, it was approved the first go. So I was very taken aback.”
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u/Dugen 1d ago
Arbitrarily denying care because you don't want to pay for it should be illegal. Medical insurance companies are denying care for the benefit of shareholders because fuck you that's why. It seems like there should be government oversight which examines denials and hands out heavy fines for any that are improper.
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u/Kaiww 1d ago
More plumbers are needed.
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u/evenyourcopdad 1d ago
I love how many levels of indirectness are in this statement. I guess it's just two, but still.
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u/Kaiww 1d ago
Considering Reddit mods will ban for saying the L word or anything implying some radical action against fascists but not if someone throws slurs and death threats on marginalized people. 🤷
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u/Dog-Balls6689 8h ago
When the two biggest impacts to healthcare companies in your lifetime are:
The affordable care act
A hunk with a gun.
It’s no wonder why people are cheering on L-man.
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2h ago
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u/NothaBanga 1d ago
If you haven't figured it out, the first plumber was a fluke. School kids were back on the menu immediately.
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u/Zomunieo 1d ago
Why not just get rid of the medical insurance companies and have the government fund healthcare through taxation? It works for most countries and costs less per capital than the US, because all that insurance and litigation is expensive.
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u/Nice_Force_5143 20h ago
The hurdle isn't getting every day Americans on board with this. The hurdle is getting our elected officials on board with this. Our leaders are in bed with the private health insurance giants. (See the media calling for action every day after the murder of the healthcare CEO in New York, while every day Americans were celebrating)
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u/FearLeadsToAnger 3h ago
- Yes
- The reasons it wont be done: it'll kill a huge part of the insurance industry, God knows what economic ramifications that has. Doctors dont want it because they will be paid far less, wages in places with national healthcare are way lower.
I dont see it happening in the US, not properly.
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u/Tasty_Lunch2917 11h ago
This was likely handled by different adjusters and Id say the one that denied needs audited.
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u/anatomizethat 1h ago
This this this!!
I had a claim denied for literally no reason. I had to exhaust the appeals before I could submit a request to the state for independent review. When I did so, I was given space to explain my experience and what factored into my complaint.
But you don't get the independent review without exhausting appeals.
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u/Tasty_Lunch2917 37m ago
People forget a human being is making this decision and it really quite often is a mistake or incompetence when things like this happen.
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u/Imaginary-Method7175 1d ago
I worked for a company that was working an animal trials to try to cure this.
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u/Morberis 8h ago
Ah, now that they've been alerted to their mistake the first time they can try to claw back that money
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u/lego_not_legos 1d ago
Blue Cross's own reasoning makes no sense. If it's denied because it's "not medically necessary" for one, then how could it have been necessary for the other? Such a bald-faced lie.
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u/Conlaeb 1d ago
It has been denied for the older boy. I am assuming when the numbers were punched into a spreadsheet, that the reduced likely lifespan of the older child put them below whatever metric decides whether we receive care. Thank god we didn't end up with government death panels.
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u/thunbergfangirl 1d ago
They are only one year apart - 9 and 10 years old, respectively. I think it’s much more likely the insurer clocked the high cost (over 3 million dollars) of the first brother’s treatment and then changed the plan so it would be excluded.
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u/Conlaeb 1d ago
I'm completely speculating so you could be right. At the end of the day I don't think the reason really matters, I just wanted to lay bare the naked hypocrisy of our institutions.
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u/thunbergfangirl 1d ago
Totally! And it is logical that the insurer would also run the numbers on the relative health and age of the patient - in our for-profit health insurance system, that is. So you are right to bring that up, as well. Wasn’t trying to contradict you so much as add my thoughts.
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u/bzzyy 17h ago
The insurance knew the cost of it before authorizing the treatment for the first brother, though.
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u/thunbergfangirl 16h ago
True, but it wasn’t excluded from the plan yet. I’m assuming that this specific gene therapy is so new that BCBS had never covered it before. This specific therapy was approved by the FDA in 2023, so, pretty recently.
When it popped up as a claim on BCBS’ end they probably had no choice but to cover it because it wasn’t yet excluded from the plan. Then, after covering the therapy and paying out, BCBS clocked the high cost and decided to update their coverage to exclude this type of gene therapy.
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u/bzzyy 15h ago
It's not excluded from the plan now. It's a covered service with specific guidelines for medical necessity. A healthcare provider is not going to give this drug to anyone without explicit approval that it will be covered and paid for by the insurance. I think it is covered but they had more patients than expected so they made the medical necessity criteria harder to reach.
The insurance does not have to automatically cover all medical services that aren't explicitly excluded.
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u/thunbergfangirl 15h ago
“A few weeks ago, after digging through health insurance paperwork, Alison and William claim that after Noah received approval from BCBS in November 2024 for Elevidys, the insurance firm “quietly” updated company policy on January 1, 2025 to exclude the children’s specific DND mutation from coverage for the gene therapy.”
So, sounds like the plan was updated in January to exclude the specific DND mutation this family has. If that is related to medical research on the specific genetic variant in any way, it is not mentioned in the article.
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u/hahnwa 1d ago
Can't wait for AI to take over
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1d ago
What makes you think AI didn’t make this decision
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u/CarbonQuality 1d ago
Pretty sure it was sarcastic lol
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u/unclefisty 1d ago
Thank god we didn't end up with government death panels.
It was funny watching people scream about these while knowing it would be red state politicians that would create said death panels.
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u/Wild-Breath7705 5h ago edited 5h ago
The problem is that we want there to be “death panels”. Any community resource (like a healthcare fund, whether it’s created privately for profit or by taxes) needs to be managed to ensure effective use. There’s lots of people who think essential oils will cure cancer, but we probably shouldn’t be buying them the most expensive essential oil for treatable cancers (or, much more reasonably, there’s desperate people who want to try experimental and often absurdly expensive treatments for their disease despite a low likelihood of success which becomes a complex moral and practical issue).
Every good healthcare system will sometimes say no to requests to treatments for diseases a person is dying of (hopefully only for treatments that they don’t believe will work, but someone might question if we are willing to pay 5 million dollars to extend someone’s life for 6 months which obviously might be incredibly valuable to the person but it is 28,000 dollars per day and I suspect many people would be willing to give up six months of their life for 5 million dollars). The right people to be making the decisions for this are not privately insurance companies. It’s likely red states would have very poorly managed universal healthcare (and be unwilling to tax enough to pay for the necessary treatments while rejecting many claims that should be funded), but the issue that was used to scare up opposition to Obamacare is a general feature of any insurance (made worse, not better, by private companies)
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u/ComprehensiveDay9854 1d ago
There’s still plenty of time. This the only the first year of a new world order.
L10 Actuary, well stated 🫡
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u/hcsteve 1d ago
The details are buried at the end of the article. The insurer updated their plan to exclude coverage for this treatment for this condition. It sounds like this happened during a plan renewal, when they also make all sorts of other changes. Could this decision have been impacted by the fact that the insurer had already paid a $3.2M claim for this family and they thought there could be another one on the way? Maybe. There also seems to be some new debate about the efficacy of this treatment for older children. If there really is no solid evidence that the treatment is effective, then it’s not an efficient use of resources to continue paying for it.
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u/Nicksomuch 1d ago
The banality of evil.
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u/hcsteve 1d ago
I don’t think insurance companies are great - but this decision seems to me like a legal and rational one within the regulatory framework that we have established. Simply blaming the “evil” insurance companies is facile. I think a single payer system would be superior for a lot of reasons, but I could easily see this situation playing out exactly the same way under single payer.
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u/sirsleepy 1d ago
"Lawful evil" is a thing.
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u/hcsteve 1d ago
Sure it is. But it’s an overly simplistic description of what’s happening here.
The insurer can decide whether to cover some specific treatment when defining their plan. If they covered this treatment, their expected medical costs would be higher, and they would have to charge higher premiums to cover those costs. (Keep in mind that many/most Blue Cross/Blue Shield plans are non-profit, so we can ignore the possible motive of higher profits for shareholders). Higher premiums mean that some people (or companies) might choose less expensive plans, or forego coverage altogether. Some of those people who forego coverage will end up with problems that could have been caught early at a routine checkup. Some of them will die (sooner than they would have otherwise) because these problems went undiscovered.
So as someone making these kinds of decisions, you have to make a choice - do you cover this procedure of dubious efficacy that might improve quality of life for a handful of people, or do you try to keep costs lower so that you can provide broader coverage to more people? I don’t think this is a simple ethical question.
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u/sirsleepy 1d ago edited 1d ago
Yeah, I understand all that, but that doesn't really make it lawful neutral.
It's not just that they don't pay for expensive new treatments that makes health insurance distasteful to me. I find the entire institution to be the definition of "practicing medicine without a licence." For many people they ultimately end up making medical decisions for them, including as you've mentioned being unable to afford preventative care (and in my personal experience they're happy to not pay for that anyway).
Genetic interventions like the one here are going to be expensive at first. That's just how medical innovation tends to go. But I don't see the cost coming down if no one can access it. And to be frank DMD is relatively prevalent among genetic diseases so it's fairly disheartening from my point of view to see coverage denied.
Remember last year when Anthem BC/BS wanted to limit anesthesia duration during surgeries? Remember when that same week a certain guy got shot and they immediately realized that was a bad idea?
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u/Total-Yak1320 1d ago edited 13h ago
There was a ProPublica article a few years ago that hit close to home and is semi-relevant to this thread. Michigan has a law requiring insurance companies cover clinically proven cancer drugs. The insurer in the article tried to use semantics to evade the law by classifying CAR-T cancer treatment as “gene therapy” and then excluding all “gene therapies”, despite wide consensus in the medical community, and other insurers in the state covering it under state laws.
My mom passed from lymphoma in late 2016, the FDA approved the first CAR-T drug in 2017. We actually personally knew an exec that fought like hell to get her insurance to approve it since it was considered experimental at that point and they finally did, but it was too late [I will forever be grateful for him]. Was that lawfully neutral? I guess.
Was it lawfully neutral for the same insurance company to deny the man in the article CAR-T therapy despite Michigan’s law and after it had been approved by the FDA with consensus in the medical community regarding its use in certain chemo-resistant cancers? I don’t think so.
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u/hcsteve 1d ago
Genetic interventions like the one here are going to be expensive at first. That's just how medical innovation tends to go. But I don't see the cost coming down if no one can access it.
This is a great point. But it’s not economically rational for insurers to cover very high cost things that they are not required to cover. Saying “these companies are evil, they should be better” is not effective. Insurers operate rationally within the bounds that we (the people/government) impose. If we collectively decide that these bounds should be different, then we should change them.
A regulation that required insurers to cover this procedure would probably drive down the unit cost through higher volume. For what it’s worth, a single payer system might drive down the cost even further by bringing more leverage to price negotiations. My point is just that blaming “evil” companies is missing the real root cause - the structure of our healthcare payment system in general.
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u/redroserequiems 19h ago
Aka "disabled people should die for the economy because the economy is more important than human life."
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u/hcsteve 19h ago
Economics is nothing more than the study of human behavior in markets. Using economic terms to explain behavior doesn’t come close to implying that “the economy is more important than human life.”
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u/hennell 1d ago
They're not clones, there could be many differences between their conditions and suitability and need for treatment.
Not that it should matter, healthcare should be working for the health of the patient not run as a profit making system where refusing treatments improves the bottom line. But their reasoning doesn't have to be illogical, just cruel and profit focused.
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u/bag_pigeon 1d ago
after digging through health insurance paperwork, Alison and William claim that after Noah received approval from BCBS in November 2024 for Elevidys, the insurance firm “quietly” updated company policy on January 1, 2025 to exclude the children’s specific DND mutation from coverage for the gene therapy.
The insurance company changed the rules so they didn't have to approve treatment
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u/Strange-Style-7808 1d ago
I am curious which Arkansas BCBS policy they have. My partner worked there in this area for a decade. If they had any of the plans tied to the state government, Walmart, or Tyson, those employers set the policy, BCBS just administers it.
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u/Flaky-Wallaby5382 1d ago
Wait wait… maybe the criteria is set in stone and one met and other didnt.
Eg length of diagnosis time, prognosis, location etc
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u/Loyal-Opposition-USA 1d ago
Nobody wants health insurance, we want health care. Health Insurance companies are the “death panels” the Republicans warned us about during the Clinton presidency.
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u/GeekAesthete 1d ago
Just to be clear, the “death panels” were consultations with your doctor over end-of-life care, and they were during the Obama Administration.
Obamacare originally required that health insurance pay for patients and their families to have a sit-down with doctors when making vital decisions over end-of-life care. Sarah Palin dubbed these “death panels” to make it sound scary, and the requirement got dropped.
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u/toastedzergling 1d ago edited 1d ago
You're being extremely generous to think that Republicans have such a narrowly scoped definition of "death panels" limited to the Sara Palin comment from the
20122008 campaign. It's really not nuanced at all and instead is a bludgeon of a comment to convey the sentiment "gov't run healthcare is bad"3
u/ThemesOfMurderBears 1d ago
What are you even arguing? I did not see mention of scope or breadth of usage. That person was pointing out that the phrase came out of the Obama administration. You are also not correct about when it originated, as Sarah Palin did not run in 2012. She was picked by John McCain in his run against Obama in 2008.
In terms of the scope, I haven't heard the term used much since then. It was a catchphrase to demonize the Affordable Care Act, which passed. There have been no death panels, although the rallying against the ACA has continued to this day.
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u/Loyal-Opposition-USA 1d ago
Well, yes, “death panel” was established as a term in 2008-2009, but there was a very similar discussion about “government bureaucrats deciding who lives and who dies” when the Clintons were proposing universal healthcare in 1993. Thank you for the correction.
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u/fuckedaccountant3976 10h ago
Now we have corporate bureaucrats deciding who lives and who does to optimize shareholders returns.
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u/Proud-Delivery-621 1d ago
I was growing up and watching the news during that time. The "Death Panels" were pretty much always described as oversight panels deciding whether or not people should get life-saving treatment. Whatever the term originated from, that's what Republicans were using the term to mean.
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u/GeekAesthete 1d ago edited 1d ago
Yes, that's exactly what they tried to make them sound like. I'm just clarifying what [perfectly benevolent] element of Obamacare they were trying to misrepresent, and where the term actually came from.
The logic was "this involves people sitting down and talking about a patient's death, so let's make that sound malevolent and scary."
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u/bitchyfluff 1d ago
Hospitals are struggling to get by, reimbursements for care are decreasing, patients are paying more for less, and insurance companies are growing fat off the teat.
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u/MittRomney2028 1d ago
European healthcare isn’t funding this treatment either. They generally fund considerably less treatments than America’s health care system.
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u/draft_final_final 1d ago
These are kids of a physician and a finance executive living in one of the richest suburbs of Chicago. If they’re getting fucked over by their health insurance plans what chance do you think the rest of the country has?
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u/coldgator 1d ago
Not saying it doesn't suck that BCBS did this, but the treatment costs $3 mil and these people obviously have money. Couldn't they take out a loan?
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u/therhubarbman 1d ago
They pay their premiums, they are policyholders. The insurance company can drop their coverage, but we cannot ever hope for a country where they decide what they'll cover based on income. "Ah you made 54k last year? Great, we'll just have you pay for that vitally necessary surgery!"
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u/coldgator 6h ago
I'm not saying that at all. Of course they should get coverage. But they are literally not getting a treatment for their kid that their other kid got. If I had any resources at all I don't think I would just sit around and wait for the insurance company to cave while the kid gets worse.
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u/marcnnm 1d ago
This is what you all keep voting for.
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u/yourmomlurks 1d ago
So I am a liberal and its not like any of our elected officials are doing anything, either. The medical insurance industry lobbies both sides.
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u/Nice_Force_5143 20h ago
I got banned on r/inflation for calling out a redditor for blaming the voters for the electoral loss and not the candidate. Sure there will always be vote blue no matter who people, but there are people in the margins that are tuned into this kind of stuff. The OP was rattling off how the democratic leadership under Biden passed infrastructure bills and codified LGBT rights in congressional law. But failed to comprehend that these things do not help every day Americans like the children in the Article. We need a real FDR new deal candidate who will be the champion of the people.
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u/yourmomlurks 16h ago
Exactly. Dems willfully ignored that voters wanted a border plan. And the student loan thing did not help the elitist image.
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u/Nice_Force_5143 15h ago
The most frustrating part about the student loan thing is they gave up so easily. They had the presidency, congress both house and Senate, and they still capitulated when a judge said they can't do it. Trump takes every case up to the supreme Court while the Biden admin basically said "welp, guess we can't do it guys! Maybe next time ;)" it was very frustrating.
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u/yourmomlurks 15h ago
Yeah feels like dems can only do things that big money wants but if it has to do with the things they campaign on that the people want all of the sudden its impossible and arms are jello.
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u/Randomfacade 1d ago
oh so both sides are the same? why are you helping trump? (/s)
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u/yourmomlurks 1d ago
Right? For everything the right does for him i feel the dems work twice as hard for him. Hey democratic leadership can you accomplish or pass anything? Something? Them: TRUMP IS BAD.
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u/1_048596 1d ago
The alternative will not be achieved by voting but something close to a general strike, or at least health-care-sector wide militant union pressure.
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u/Randomfacade 1d ago
it’s all you can vote for unless you’re voting third party
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u/AzureMage0225 1d ago
Democrats have been running on public health care since the 70’s. Just because they don’t want to ban all private insurance doesn’t mean they support this.
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u/H_Mc 1d ago
This. It’s absolutely infuriating that the pro-universal health care folks have been brainwashed to think Obamacare (the original version) was bad … somehow.
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u/Randomfacade 1d ago
disingenuous as always. but the "pro-universal health care" folks obviously have to be brainwashed because they believe Obamacare isn't universal health care.
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u/H_Mc 1d ago
It’s not universal healthcare, but it’s a huge step over what we had. It would have been an even bigger step if the right-wing propaganda hadn’t worked so well.
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u/Randomfacade 1d ago
sure, it’s like saying getting stabbed in the arm is better than getting stabbed in the chest. it might be an improvement but not by enough.
the ACA is still the law of the land and this kind of denial of care is legal and always has been, thanks to right wingers like Joe Lieberman
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u/Fratil 1d ago edited 1d ago
Every Republican and every Democratic who voted in the primaries for Clinton and Biden are responsible for this. Mainstream democrats do not want to fix this, and they do not allow democratic mechanisms that would let it be fixed. That's why Hillary was constantly anti-universal healthcare, and it's why Biden pretended to be more progressive there than he was before back-pedaling during his presidency. And further why he led to the undemocratic selection of Kamala Harris who then also backed off supporting universal healthcare prior to the general election.
The patterns don't lie, and neither does the data around what is objectively best for the people in this country that works for the rest of the world. Every person who is not voting for progressive or leftist democratic candidates supports our current insurance system and is reaping what they sow, end of story. There is no other group vocal about this or trying to take action on it whatsoever no matter how much the die-hard neoliberals try to claim they'll fix the system without replacing it.
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u/JudasZala 1d ago
“A vote for the third party candidate or not voting is an automatic vote for the opposition!” — Party partisans
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u/coltaaan 1d ago
While I am vehemently opposed to the two-party system, pretending that both parties are acting in good faith when one is openly and unabashedly taking an axe to America, the constitution, the global economy, and our reputation on the global stage helps no one.
In fact, I’d argue it actively hurts opposition and third parties even further, since the whole point is to avoid electing a fascist in the first place. But once everyone gets it into their mind that both parties are just as bad, they either abstain from voting or they give equal weight to both parties. Once a fascist is elected, they will then work to undermine future elections.
This is factually evidenced by the continued butchering of the voting rights act which SCOTUS (with its conservative majority) has all but killed over the last 9 months. As well as the gerrymandering that has plagued red states for decades because they never implemented independent redistricting like CA did years ago when Arnold was governor.
All that to say, if I have a floor covered in feathers that need to be cleaned up, with the option of either a mop or a broom, I’m not going to choose the mop or let the mess remain because I can’t get a vacuum cleaner instead. Because I know that tackling the problem even a little with the broom will help alleviate the problem much quicker in the future and might somehow pave the way for a vacuum one day. But if I chose the mop, well then I’d just have a feathery and wet floor.
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u/BecalMerill 1d ago
I want this comment stickied at the top of every political post on every sub. Well said.
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u/phaberman 1d ago
This is probably poor timing in trying to get coverage for this therapy. Approved in March when they got it for their first son, but by May and certainly June, the landscape changed.
Look into Elevidys, the gene therapy mentioned in the article. I've been following this a bit.
There were some deaths that occurred in the spring/summer after it was approved. The drug can be a miracle for some, but there are large risks and valid questions of the efficacy data given small sample sizes for rare genetic disorders like DND.
The FDA asked Serepta to stop shipping product but they refused to pull it from the market.
I'm not sure what the right thing to do is on this, It can really save/improve lives of patients with limited alternatives, but it's not without severe risks and not all patients will benefit.
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u/flaron 18h ago
I’ll tell you as someone with a family member with DND, we’re willing to go for moonshots because this disease is progressive and even minor benefits mean more years lived.
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u/phaberman 15h ago
Ya it's a heartbreaking situation to be in. Even with the safety and efficiency concerns, I think the risk profile is still favorable enough to keep it on the market as an option.
AAV vectors can be problematic though and are still gen 1 gene therapies just coming into the market.
I hope the next-gen gene editing platforms can resolve the issues but those are still years away and these patients don't have that kind of time.
Whether insurance providers will continue to cover elevidys, I'm not sure, probably a case by case basis, but hopefully they will. A lot of the comments in this sub are not really informed. It's not even approved in the UK and EU yet and most single payer systems would not cover these kinds of therapies.
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u/amiwitty 1d ago
Let's guess which wonderful country this is before even reading the article. Any guesses?
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u/Elvarien2 20h ago
There is a fix for this problem Reddit doesn't want me to speak out loud.
We need copycat events.
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u/NorthStarTX 19h ago
“To protect our member’s privacy, we do not publicly discuss individual cases,” a Blue Cross Blue Shield spokesperson said. “We do want our members to know that medical experts, including doctors, are involved in reviews to ensure the treatments and services our members receive are evidence-based and not duplicative."
The fact that they need to mention that their process to deny you the thing they're paid to provide now also includes at least some doctors says everything it needs to about what that process is actually used for.
Also it's kinda rich to claim that they're protecting member privacy by refusing to talk about what the member brought to the press.
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u/planet_janett 19h ago
“The reason on our denial letters is that it's not medically necessary,”
I love when insurance companies deem what is medically necessary when they themselves have zero medical training whatsoever.
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u/victorkiloalpha 1d ago
This is actually pretty complicated. Whether or not the treatment works is heavily disputed and unclear. And if someone tries this one, a future, better version may not work because you develop antibodies.
The science behind this is evolving rapidly, and the FDA is caught between its traditional rigorous evidence requirements and parents desperate for hope against a death sentence.
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1d ago
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u/AutoModerator 1d ago
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1d ago
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u/AutoModerator 1d ago
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u/ifyousaysu 17h ago
The ceo who forced the parents to make such a decision in the first place should pay….
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u/Euphoric-Wasabi-6256 15h ago
This happened to us as well with BCBSTX. Two boys, same genetic disease with a monthly shot. One was approved immediately and one took half a year of fighting to finally get approved. Ironically, the one they denied has more severe illness and is more affected. It was so dumb that it was funny because it really made me realize that one was just the victim of the denial algorithm randomly singling him out.
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u/Key-Sand-9256 9h ago
Get one kid cured but report invalid results
Switch kids just tell them to call themselves their other names
Cure second kid
Profit
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u/Odd-Concept-1850 1h ago
Seems obvious but I dug into it and didn't see mention ed, have these people made any attempt to reach out to the drug company directly and ask for the drug?
https://www.sarepta.com/about-us/contact-us
If they did, they should shame them publicly with their response (or lack of one) on these articles/ social media. Name and shame them so they get bad press.
From my experience a good amount of these companies have a way to get the drug free if you can't afford it by reaching out directly.
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