Twins fight rare genetic disease, family says it’ll cost millions of dollars to save their lives

[@sandreawhite7534]

Get a lawyer. This policy was canceled AFTER they were born. This has got to stop with these greedy insurance companies. They qualified!!!

[@openlybookish]

This price tag is unethical. Shame on the insurance company for denying this claim regarding such a rare disease and on the manufacturer. IMO this should be tried as criminal.

[@monicascott2354]

$2.1 million? That's greedy and stupid. Thanks.

[@stacycamacho59]

A daily NICU stay in 2003 was $100K. So imagine today.

[@luvghd]

This drug is free in Australia and our hospital stays are free, so confused as to why the USA is so backwards.

[@nadogrl]

@@luvghd- Nothing is free. Someone always pays.

[@luvghd]

@@nadogrl yeah we pay our taxes which we gladly pay, our taxes are only a fraction higher than the USA and we get so much more than you do 😊

[@vsoraya]

@@luvghd Backwards, and greedy.

[@V.E.R.O.]

WTH! What is it made of and how did the manufacturer come up with the 2.1 million price tag?! It's outrageous, egregious, preposterous!

[@happycamper1372]

Overseas it would be $12.00. Only the USA gets hosed by the pharmaceutical companies.

[@emm6890]

Insurance company should definitely pay for this medicine especially since they were born before coverage for the drug was cut off.

[@lindseywagner7510]

Sounds like a lawsuit to me

[@WiseWoman6]

That insurance company could help this family if they really wanted to!!!!They are just Greedy, Money Hungry mongrels!! Those beautiful children deserve a chance to live a full, happy, healthy, fulfilling life. I pray someone intervenes & helps this precious family. You all are in my thoughts, prayers & heart ❤️🙏🏻

[@rezotydnic]

The pharmaceutical company is the greedy one!!! That's a lot of money for the insurance company to absorb.

[@bettysmith4527]

Wow, what is the point of finding a cure for a disease if no one can afford it?! Very sad for these poor babies and their parents!

[@jblovsoccer]

It shouldn't cost anything to save a child 😢😢😢

[@nancyfarkas3592]

the drugs are not cheap. Someone has to pay for them

[@DogGran]

@@nancyfarkas3592they’re not millions of dollars 😂 America is insane

[@PinkieJoJo]

Ok. Are you going to pay for their care then? It’s easy to say things should be free until you are the one being asked to pay.

[@lindagrible3235]

@@nancyfarkas3592 How about the pharmaceutical companies reigning in THEIR costs and putting PEOPLE over PROFITS??????????

[@luvghd]

It doesn't in Australia this drug is free of charge. Clearly, our government cares more.

[@stacieshman6250]

That cost is a crime in its self. There is absolutely no reason for it to be that high! Shame on that pharmaceutical company!😡

[@amihill2691]

The drug companies who are making record profits should donate this drug to these two babies.

[@jaimeadametz1949]

Insurance companies make me sick to my stomach!!! My prayers go to Eli And Easton! I’m praying for a miracle God please help those beautiful babies🙏🏻❤️🙏🏻🙏🏻❤️

[@averageamericangirl6819]

It’s insane that cost is a factor.

[@WiseWoman6]

I can't even begin to understand why they would deny these beautiful babies 🥲🥲

[@OctaviaBoesWifey]

I don't know why it's so expensive, that is just horrible.

[@melindaescamilla4128]

Money hungry insurance don't care about no one just making money to pocket even if it is innocent babies discusting.

[@OctaviaBoesWifey]

@@melindaescamilla4128 even our government. A guy in Texas has a cure for Cancer and they tried so many times to out him in jail. So it’s self pay and it’s expensive. And Israel has a cure and none of their babies die from cancer from what I have heard. Every time someone makes a cure they’ll government buys it out and let’s ppl die. It’s sickening. No one deserves this especially innocent children.

[@nonuser1532]

Agreed. It should be about stopping the hereditary disease.

[@lynncollver6067]

Lord Jesus please give them a miracle visit and heal them . Light be. Amen ❤️

[@duchessduke7142]

Amen!

[@clarehagley2165]

The drug company should donate the drugs for these twins.

[@eileenmcdonald1599]

Are you going to pay those that designed the drug? There is no guarantee it will even work never mind be a cure

[@nonuser1532]

Why? So they can perpetuate the disease?

[@cherylholub3100]

​@eSaid it would work if symptoms aren't seen yet.ileenmcdonald1599

[@cherylholub3100]

​@@eileenmcdonald1599Said with out symptoms it would work.

[@bettysmith4527]

@@eileenmcdonald1599 It has actually been studied at BCH and it found to not cure it, but stop the progression. Obviously no one knows if the effects will last forever. It's too bad the parents cannot find a study so that the boys can get it for free!

[@ms.marciasweebeeschannel354]

The insurance company made a "gut-wrenching" decision? Those insurance companies make unbelievable amounts of profits.........they could save the lives of those boys tomorrow. Yet tomorrow may be too late. :( God bless those baby boys and their family.

[@U-TubeAddict]

Both the pharmaceutical company and insurance company are greedy AF. The pharmaceutical company that prices a life saving drug for millions of dollars AND the insurance companies who cut coverage for those in need. Greedy greedy people

[@wendysnyder6443]

Power corrupts & absolute power corrupts absolutely! The more money companies have, the more powerful they feel they can become until they think they’re untouchable. They soon fail to take notice of anyone else, especially if they’re in need. Greed becomes the green eyed monster that eats them alive. In the end, they’re not happy.

[@mm-ln9sw]

insurance companies care about making money, not saving lives. same with pharma. there needs to be regulation, they should not be allowed to do this

[@user-ov4wr5yu4r]

Where is the explanation of why this one time treatment costs 2 million for a single dose?

[@br6480]

Welcome to the drug companies. They’re going to say they need to recoup their money from R&D.

[@pagecinnas8498]

The explanation is in the corporate salaries and bonuses. Source: the incredibly lavish life my bff of 50+ years lives, courtesy of her big pharma executive husband.

[@electrodynamicorb6548]

It’s a rare condition duh

[@junglesuperstar9270]

@@electrodynamicorb6548so what ?

[@OctaviaBoesWifey]

The insurance company should have to pay bc the boys were born while they had coverage for this.

[@irenedavo3768]

Why so expensive?

[@irenedavo3768]

Drug Company should give it free!

[@OctaviaBoesWifey]

@@irenedavo3768 I looked up the go fund me and it seems they are getting it paid for. So that’s good.

[@eileenmcdonald1599]

The boys were not given the diagnosis until after the coverage was cancelled

[@eileenmcdonald1599]

Its not exactly easy to make. And how do you think it even was developed? People get paid for their work to come up with treatments. Nothing is free

[@christinebee9781]

There are so many wealthy people in this country to whom $4 million is nothing. Taylor Swift comes to mind. Jerry Seinfeld. Bill Gates.

[@stephlau87]

Please, everyone pray for these beautiful babies! God can do the impossible, praise be to Him!

[@TaTa-wv2qz]

Hogwash. If the insurance company can approve all of the covid gene therapy shots. The insurance can approve this.

[@eileenmcdonald1599]

The government has paid for those.

[@truthhurts5158]

Covid is not a gene therapy get educated

[@openlybookish]

Amen!

[@prairiesunflower]

It's cruel to charge people that much for a treatment that will save them.

[@rosah.901]

Beautiful boys, sending love and support and prayers for healing

[@MsSnailspace]

this is a ridiculous price!! seems things have gotten far away from healing and more into greed! praying for these boys and their parents!!

[@tinyginger]

Well if it’s ultra rare, then you are not paying for many kids with these insurance companies. So much for trying to be pro life when companies won’t even support life out of the womb.

[@aloysiusdevanderabercrombi470]

One in ten thousand is not ultra rare. Why don't they take the babies to Children's Mercy?

[@ghostlyrose8946]

As a mom of twins, my heart breaks for these parents. Sue the insurance company. This outrageous!

[@nonuser1532]

What's outrageous is people wanting to perpetuate this hereditary disease.

[@malanamarie5206]

@@nonuser1532nazi

[@julieross9368]

This is where those Billionaires could and should step up. Hopefully one of the mega rich will see their story and save those babies.

[@pegs1659]

If a doctor prescribes a medicine, then the insurance company should have to pay for it. Insurance companies should not hold peoples lives in their hands. They have been given too much power! They get their money every month! Either take that power away from them or implement National Healthcare so that its not a question of whether someone has to come up with millions of dollars to save a loved one.

[@eileenmcdonald1599]

Guess again

[@tiffanythomas82]

This is wrong on so many levels. Godbless this family❤

[@Anonymous6716]

A life is a life and every life is precious!

[@ltlwlwl5057]

What is that medication made of..... Unicorn Tears and Rainbow dust?

[@jryland6]

DESPICABLE, REASONING BY INSURANCE COMPANY!!!!!!!

[@nonuser1532]

I agree. They should refuse the treatment in order to stop this hereditary disease.

[@nameisprivate5429]

How the hell can an insurance company cancel their policy! Tell me WHY one medication costs 2mil for one IV bag. My daughter had leukemia……even with blue cross blue shield insurance we owe a quarter of a million over the span of 5yr In Just copays and gene therapy we tried when she relapsed. The drugs that show the most Primise carry the biggest price tag because big pharma won’t make money if ur cured. MAKES ME SICK. I hate insurance companies and I hate big pharma for making peoples misery into profit.

[@peggygreeby5065]

Why can't the pharmaceutical company donate two doses to these babies? They make billions of dollars each year, they'd never even miss four million, that's just a drop in the bucket for them. As for the greedy insurance company, sue them!

[@annandrews84]

In Australia $31 because we have a pharmaceutical benefit scheme and thus drug was recently approved for babies under 9 months with no symptoms.

[@ReineDeLaSeine14]

it is cheaper in the long run to cover this therapy than it is for lifetime care for someone with SMA

[@cherylholub3100]

Start a Go Fund Me. If people know the story they will give.

[@melindaescamilla4128]

Prayers for your boy's and insurance is being taken from people that are really very sick and given to other's that don't qualify but keep fighting to get what you're babies need God bless your family Amen. ❤❤

[@Platinumpuppy]

My Twin and I have problems with our immune system. It was found with genetic testing. But, having your best friend born with you so that you can be together is amazing. Please help these boys!

[@moonoggin]

Someone needs to do a study and find out just what is inside this drug they need. Families should not have to be letting Insurance companies decide on their babies lives. Prayers a way will be found. What is this drug called?

[@diamondz4lfye313]

Oh hell no! Sorry for the language but this is horrible! The way things are done in our healthcare system right now should be illegal! You mean to tell me they can be cured, can live a normal life but only thing that’s halting that is the cost of treatment!? It should be ILLEGAL to deny someone life saving treatment. I pray to God they are able to get this treatment.

[@ilovegameslibb2917]

Omg! What a price tag on human lives 😢 they need a millionaire to help. I know they have it to help these babies.

[@Katia-y6m]

It's insane that insurance won't cover this

[@patyoung2042]

The drug company should split the cost with the insurance!

[@zebrasavant1188]

Do they have a GoFundMe page

[@Leilani_Sweet]

Insurance company has to pay for it as the children were born BEFORE the cut off.. Get you a lawyer guys and fast

[@gm2282]

Those poor babies someone out there has to help them please

[@ontoyoualways9183]

Wow! Can you imagine being the one denying this medication? Unbelievable

[@javagirl]

It should be a crime to deny such treatments to begin with, let alone their health insurance company should be sued. The drug was covered at the time of their birth!

[@FVWhimsy2010]

WHY is that treatment so expensive? Someone needs to explain this medical price gouging...

[@Sunflowers_and_sunshine]

Please support this family with prayers, love and donations.

[@MsArtistwannabe]

Universal insurance is need in our country. An insurance company canceling is disgusting and heartless.

[@ItsGluetimeyall]

I so wish I had the money to give them!! Heart breaking, recent lottery winners with the huge jackpots would step up.

[@nonuser1532]

Why do you want to help perpetuate this hereditary disease?

[@FFlores79]

If they are denied the drug and live even a year with the quality of life they are describing rhey qill for sure exceed 4.2 million in cost with hospitalizations. What happened to do no harm?

[@SL-ud7tf]

Wow but they can give you free shots. In fact they'll pay you to take shots. May God help provide for this family. Be blessed and strengthened little ones ✝️💛🙏

[@susancarroll7697]

Can they be treated at St Judes?

[@Angelluvs05]

I think it’s sickening that if a cure is available, that it is offered at such a ridiculous price tag 💔 A life is a life, every life is a blessing & anything to avoid long term suffering, not to mention avoid adding more medical fees should be readily available 🥺 Prayers for both these boys & their parents & family 🙏🏻🙏🏻🙏🏻 The amount of heartache & stress they’re facing,,, can only imagine

[@annabrahamson4320]

Greedy drug companies too!!!

[@lindagrible3235]

There's something INCREDIBLY WRONG with a health care system that makes so much money and PROFIT off of illness and disease. Though they all blame each other, there's enough greed to go around with many (though not all) in the medical community, including doctors, hospitals, pharmaceutical and insurance companies. It's tragic that human pain and suffering is all BIG business.

[@gennesamann4323]

That is so awful for insurance to do that and wicked price in the first place!

[@rezotydnic]

How ridiculous is this! No drug should cost that much! Big greedy pharmaceutical companies are disgusting.

[@KittieKind]

Why is the drug so expensive?

[@eileenmcdonald1599]

Years and years probably decades of research and development. You do know it takes many people and a lot of equipment to come up with these drugs for treatment. Plus not everyone reacts the same to them. There is no such thing as a guaranteed cure

[@KittieKind]

@@eileenmcdonald1599 that I understand. But! That was research. They get funds for research. Once a drug is developed, the cost comes down. It is not up to the user to pay for research. The user pays for the cost of production. So unless they have to get ingredients from the deepest part of the ocean, I cannot fathom 2.1 million dollars. Do you have any idea what that would cost in my 3rd world country? The exchange rate was a couple of weeks ago; 1:18. Work it out. What is the use of doing the research giving money to labs and the drugs are kot available when needed. In general. My cousin recently died of breast cancer because our government medical system is not interested to assist. They wouldn't even do a mastectomy.

[@minimaladjacent]

Greed, capitalism...instead of universal Healthcare like the rest of the modern world.

[@cynthiablandford6213]

They will get it!!❤❤❤

[@kaykrause4469]

It should not cost that much. No meds should cost that much. Make them pay.

[@silviafady76]

They are so beautiful, I hope they got the treatment. Which company is it letting two babies die??? 😢😢😢😢

[@wendyhughes2234]

So sorry about your heartache and dilemma. 💔💔 May Abba Father [God] bless and keep you and your family, Sweet Babies. ❣👶👶❣ And give you His Peace. And fortitude for your mama to take care of you. ❣🤱❣May you grow from strength to strength. ❣❣❣❣

[@mypeeps333]

There's no excuse for this cost of medical in the United States !

[@ejwis1]

It should be free.

[@bres.3449]

Matthew 11:28-30 [28]Come unto me, all ye that labour and are heavy laden, and I will give you rest. [29]Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. [30]For my yoke is easy, and my burden is light.

[@amandasmith7043]

Saddening 😞

[@askew9976]

Absolutely outrageous. No reason for this. It’s apparent that the insurance company knew about their testing positive for that condition and canceled them!

[@BetsyRoberts-u8e]

Parents, please appeal to those who can help your boys: Jeff Bezos, Bill Gates, Warren Buffett, and other billionaires. They can afford it!

[@DeKKH]

These greedy pharmaceutical companies and insurance companies!!! Such trash 😡

[@jeanrichardson2044]

It would be great if Elon Musk, or Jeff Bezos sponsored them, it would be just loose change for them. The insurance company are short sighted, without treatment these kids are going to be very expensive. I would sue the insurance company.

[@hillerps]

I had the same thoughts.

[@thatgardeninggirl2864]

Too bad we can't make billionaires like Elon musk or Jeff bezos donate some of their millions to help

[@eileenmcdonald1599]

You can do as you wish with your earnings. Just as they can.

[@thatgardeninggirl2864]

​@@eileenmcdonald1599Well, unfortunately I'm not a billionaire. I like to spread love and kindness everywhere I go I've gave a couple of people that live on the street tents and a little bit of money. I do what I can. If I was a billionaire no one would be homeless. That's for damn sure

[@kdc-nb5fw]

Nah. These guys are too busy fighting for their political choices to care about human lives. They will only be happy if they can make more money than they can possibly spend in a few lifetimes. They are addicts, addicted to money.

[@ashleyervin602]

Imagine a world where money matters more than lives...........oh wait

[@eileenmcdonald1599]

Imagine no money ever spent on trying to find treatments. Then most would sadly die

[@moonbuni59]

Could the Shriners hospital help?

[@lornamartin1128]

There so many wealthy people in USA who should help! Im helpless I mostly pray 🙏🙏🙏🙏❤️

[@tarab7773]

If you are reading this comment, i hope u donate to the gofund me. Even if its just five dollars, that means something

[@nonuser1532]

I would rather not help perpetuate this hereditary disease.

[@scarlettt3234]

God have mercy!

[@charlenejones2736]

God bless those babies boy and momma and daddy 💕😇😇😇😇 your friend Michael Paul from Lindsay Cal.

[@al2670]

These insurance demons are heading to Hell for these types of decisions.

[@marjanf56]

insurance companies play games..in massachusetts epi pens went from $1 with insurance per shot to$100 with no warning

[@moonbuni59]

Obamacare did that

[@lward9675]

Mosaic life care? Everyone should change from this company. What good is insurance if they refuse to cover medical costs?!

[@shrettajames2931]

Praying

[@annettemelendez6250]

Keep wasting $$ on space travel... seriously!? This is way more important!!! Just unbelievable that these choices have to be made!!! The coverage needs to just cover the meds!!!

[@Trund27]

Insane amount of money. Ridiculous.

[@annmarie8574]

Insurance should cover this treatment if I had the money I would pay for it myself. So many millionaires and billionaires in this country cannot one of them step forward and pay this to save the lives of these two babies?

[@starsbars8708]

What's the gofundme page?

[@ef6601]

This is HORRIFIC! End stage capitalism. Can they quit their jobs and get the kids on Medicaid? Honestly if it was my child, I might consider relinquishing custody just to get them the medication. Time is off the essence!

[@kaistockman6443]

I met someone who had to get divorced because they couldn’t afford treatment for something and their insurance wouldn’t cover it. Only in America. 😢

[@melindaescamilla4128]

It's so horrible what medicaid is doing to people who are so sick please need prayers for my nephew and brother in-law thank you God bless everyone Amen. ❤❤

[@EB-fs7jf]

They should move to the UK where it is covered under NHS!!

[@popgems]

If they lived in a European country, it would be covered and we wouldn't be seeing such a despicable news story.

[@Jdjustsaying]

Surely the pharmaceutical industry that made hundreds of millions during COVID could donate the money 😢

[@genamartin229]

Horrifying.

[@hiddenhand6973]

God bless the donors and those praying!

[@lindanorris2455]

why does it take soooooooooooooo many newscasters to report on one story?

[@beth9317]

Shame on the drug maker and the insurance company they could come up with a more reasonable price that the insurance would pay

[@Juanita621]

Shame that the state lottery don’t offer the jackpot as a donation for these babies… all about money.

[@kaistockman6443]

If we had universal healthcare the profit incentive would be gone and more things would be covered. 700,000 claims are denied every single day! 😢

[@PinkieJoJo]

And you would be waiting months for care and not actually get the care you think you would.

[@eileenmcdonald1599]

People keep blaming the government. When its insurance companies calling all the shots.

[@nonuser1532]

Universal health care is the healthy paying for the sick. Not my responsibility.

[@kaistockman6443]

@@nonuser1532you already do that with your insurance now it’s just that you also pay for a CEO’s million dollars in compensation. The money would actually go to helping people instead of profits.

[@kaistockman6443]

@@PinkieJoJo but you would not because you could go anywhere. I had a sleep test last August. The next available appointment wasn’t until this May for the follow up! But if I could go anywhere, I wouldn’t have to stay in network and I could have gone to a different doctor where I could have gotten an earlier appointment.

[@hollypatrick1050]

our taxes probably paid for the research