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Children's Hospital sues Saudi prince for $3.5 million for care of two-year-old with rare disease

Boston Children's Hospital is suing a Saudi prince it says has reneged on a commitment to pay for the care of a baby with a rare disease that can only be treated with an incredibly expensive drug.

The girl, now about two, has spinal muscular atrophy, a genetic disease that affects muscle strength and movement. According to the hospital's suit, filed in US District Court in Boston today, Prince Abdelilah bin Abdelaziz bin Abdulrahman Al Faisal Al
Saud read about her case and agreed to pay for her treatment at Children's with Sprinraza - a drug so expensive that since her being admitted in November, 2017, her care has cost more than $4 million.

The hospital identifies the girl as "Jane Doe" and says she is not American, but otherwise does not identify her or her parents.

The hospital says the prince did make an initial $750,000 payment - in the form of a check handed over by the prince's Egyptian-born doctor, Hamdy Dawoud, also named in the suit. But since then, the prince and doctor have refused repeated entreaties and then demands from the hospital for additional payments - even after the prince visited the girl in the hospital on a visit to Boston and promised to make good on his debt, but, the hospital says, managed to slip out without paying anything.

The prince visits Boston regularly for care at Brigham and Women's Hospital - and Children's says it agreed to take the baby as a patient in part because of assurances from doctors and officials at Brigham and Women's.

Ramy Ibrahim, an International Patient Coordinator at BWH, stated that the “reason [he is] involved is because the guarantor is a member of the Saudi Royal family (a patient of [BWH]) and he will be the one paying for [Jane Doe’s] treatment.” A Senior Director at BWH, Kerin Howard, later explained to [a Children's official] that Ibrahim, at the Prince’s request, coordinates health care for the Prince’s family and friends.

Dr. Camp, a thoracic surgeon at BWH, described himself as the “Prince’s surgeon and family friend,” and told Saul that he is also involved in helping to coordinate care at the Prince’s request. He stated that the Prince pledged to pay for the patient’s care and explained that the Prince “is entirely serious about paying the cost personally, and has the means.”

Children's says the girl remains at the hospital. She is now doing well enough she no longer needs intensive care, but without a guarantee of payment, no less costly rehab hospital would take her.

PDF icon Hospital's complete complaint171.44 KB


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Such a hellhole until your sick daughter needs our expertise and medicine.

I'm glad doctors don't have borders. A shame that welchers don't have them either.

Voting closed 40

When it comes to the morality of healthcare and the profiteering off people's very lives, yes - America can be a hellhole. I wonder if after Norway's national health service labelled the cost of the Spinraza drug "unethically high", the marketing department over at Biogen were giving themselves job-well-done high fives.

Voting closed 29

Because developing drugs for rare conditions is free?

Voting closed 15

The research and development cost up to hundreds of millions on many of these treatments. That's why they are expensive until they have become commoditized. Most people who aren't aware of that would learn it with about 5-10 minutes of research into the issue. But....greed, health, lives blah blah blah.

Voting closed 14

Yes, the drug is expensive, but do you know what's more expensive? 1.5 years of inpatient care, especially for babies and at "list" price.

Voting closed 12

Probably wouldn't have covered the cost either.

They might be better at giving the vast majority of care to their citizens, but the flip side of containing costs is that they are adverse to spending money. I remember reading a while ago that the UK's NHS wasn't covering preventative care such as mammograms. My hope is that that has changed.

Voting closed 10

I recall reading a globe article - not about this child - that featured a case referred to children’s from abroad. I think the story was about families hosting foreign patients, but one aspect I picked up on was that there was a slight delay in care until mass health could be arranged. It would be a huge drain if top hospitals essentially import the neediest cases, who then establish residency and become eligible for mass health. It looks like eventually, that’s the direction this case is going, too. Someone may pay for the initial bills at Franciscan children’s to get them to accept the patient, but then it will turn to the taxpayers...

Also, another example of elite non profit institutions catering to the whims of the rich. While I am glad the child is getting treatment, I can guarantee that if it were a child in my working class family, with an unpaid bill at children’s, they would have kicked us out long before the debt reached millions, right or wrong.

Voting closed 28

I wonder if the story was about some girl from Chelsea who was dirt poor and had to have the same treatment, the outcome would be different.

As people keep saying.. very soon Healthcare is going to be for the rich and connected only.

Voting closed 17

We don't know how rich or poor the girl's family is.

It does sound like she's not part of the Saudi royal family, since it says the price read about her case.

Voting closed 8

Biogen is only able to collect a measly $125,000 per dose for this medicine - when it came out, an analyst wrote "We believe the Spinraza pricing decision is likely to invite a storm of criticism, up to and including presidential tweets.” Never mind that Biogen claimed that “We are working to help ensure no patient will forgo treatment because of financial limitations or insurance status." Good one!

We need to remember that they have high licensing and developmental costs that they need to recoup, including the $14 million/yr. that they pay their little oh-so-worth-it CEO Michel Vounatsos.

And Children's conveniently ignores that the overwhelming majority of the $4 million in charges are their own absurd and unjustifiable costs including ICU.

Not to mention that Children's now has their $1,000/hr. attorneys at Ropes and Gray on the case. Groan

The real issue here is the number of millionaires and billionaires who are capitalizing off the illness of a poor little toddler girl. If I were the prince and I saw where my $4 million was actually going, I might have some second thoughts as well.

Voting closed 24

Biogen spent $42 MM on executive compensation. It's total operating expenses were $5.7 Billion, including $2.7 Billion on research. If you slash executive pay to zero, you're not going to get cheaper drugs; you'll just get mismanaged companies.



Voting closed 20

and the $7 billion in EBITDA off $13 billion in revenue, as well as the 24% effective tax rate, are cringeworthy.

If you prevent pharmaceutical companies from gouging consumers, then what you'll end up with is a more-than-reasonable rate of return, instead of a criminal one.

But it's always edifying to hear from the small fry willing to carry water for their corporate overlords, please do carry on!

Voting closed 11

You can have all the money in the world, but if you're a sleazeball a-hole under it all, no amount of money will change that.

Voting closed 12

Revoke the Prince’s Visa and see how fast he coughs up the money.

Voting closed 14

This one hits close to home and my heart aches for this poor little kid. She must have the Type 1 version of SMA given her age when it started. Many kids with Type 1 don’t make it past 2 years of age. Spinraza didn’t get approved by the FDA until December 23, 2016, a date I will never forget. So she is lucky both that the drug was available just before she was born and that this prince said he would pay for it. These two things likely saved her life. That he is now reneging on the deal is so shameful. But the cost of Spinraza ($750,000 the first year, $375,000 annually thereafter) is staggeringly high. For my family, Spinraza made the difference between hope and despair but always with the lurking fear that insurance could stop covering it and then what? That feeling must be so much more acute for this girl’s family. Spinraza was developed in part with federal money and yet Biogen is charging so much for it. I feel so grateful that the drug exists that it’s hard to criticize the system that produced it. But if a drug is so expensive that people can’t access it, what good is it? There has to be a better way. I just hope this child (and all children with SMA) continues to receive the care she needs, one way or another. No one’s life should be at the whim of a Saudi prince, or an insurance company, when a drug exists to save it.

Voting closed 50

This is exactly the type of patient Children's wanted to attract when they insisted on paving over Prouty Garden.

Voting closed 18

Had his mother die because she could not afford a hospital. As Mayor he established that no one would be turned away from Boston City Hospital based on their ability to pay. Even today an occasional foreigner will turn up at Logan Airport with "Boston City Hospital" pinned to their garment.

Voting closed 8