Move over, Scrooge.
A Brooklyn family is facing a Christmas spent n the hospital with their 3-year-old daughter hooked up to a feeding tube — because a big pharma company won’t give her a three-week supply of a miracle drug for cystic fibrosis that generated $1.3 billion in sales last year.
Little Cleo Kennedy was prescribed Orkambi in September, as soon as it was approved for use by kids in the US.
Her doctor, Hossein Sadeghi of Columbia University Medical Center, said Cleo needs the drug because it’s the only one that treats her age group and the specific genetic mutation she has that causes cystic fibrosis.
But her dad’s insurance provider refused to pay for the $272,00-a-year treatment, and her mom’s — which will — won’t begin covering Cleo until Jan. 1.
Boston-based drug company Vertex, which makes Orkambi, does offer “bridge” supplies of its pharmaceuticals to some kids, but on Friday rejected a request to help out Cleo, mom Laura Ball told The Post.
Ball said the company told her that Cleo — who in the meantime is taking high-powered antibiotics and getting breathing treatments — didn’t meet its “criteria,” without explaining why.
“We’ve been looking forward to this drug coming out for so long because it would stall her decline and keep her healthy,” Ball said.
“What they’ve come up with is phenomenal. I just want my daughter to get on it.”
And because cystic fibrosis, which attacks the lungs, is a progressive disease, “time is not on our side,” she added.
Meanwhile, Cleo’s weight has dropped to just 29 pounds because CF keeps her body from absorbing enough calories, and if she doesn’t start taking Orkambi in the next few days, she’ll have to be hospitalized with a feeding tube.
“We have plans for Christmas and she’s looking forward to it, but it’s hard to know what the next few weeks will hold,” Ball said.
Cleo’s dad, Justin Kennedy, works for the city’s Department of Design and Construction and the toddler’s currently covered by insurance provided by his union, DC37.
Ball said the union’s Med Team took until last week to rule that it wouldn’t pay for her Orkambi prescription, and Ball, who works for a non-profit, immediately filed papers to add Cleo to her Aetna policy.
But the family can’t afford the $20,000-plus to buy Orkambi until the new coverage kicks in, she said.
Ball noted that a few weeks’ supply of free Orkambi would be a drop in the bucket when compared with the years that Vertex will get paid for the drug once her insurance starts covering Cleo.
“It’s not just one year that we’ll be contributing to them, it’s ongoing,” she said.
“I am grateful to them for their research and the drugs that have come out, but I can’t believe they’d allow this gap in coverage to happen.”
Vertex is hardly strapped for cash. The company reported raking in $129 million in profits in the third quarter of 2018 alone. Its revenues for that period were $783 million —$282 million of which came from sales of Orkambi.
The company projects as much as $3 billion in revenues this year.
And Vertex can be generous when it wants — in 2015, the company came under fire for paying CEO Jeff Leiden $45.8 million the year before.
Vertex spokeswoman Sarah D’Souza said: “Due to privacy protections we can’t comment specifically about individual patient situations, but we do have assistance programs in place for eligible patients who need additional help.”
A DC-37 spokesman blasted the drug maker.
“With their skyrocketing prices, Big Pharma continues to cause real pain and anguish for working families. There’s one reason why these drug prices are so high — greed. This has got to stop,” Chris Policano said.
D’Souza did not respond to a request to discuss Cleo’s situation if her mother waived the privacy protections.
Additional reporting by Ruth Brown and Bruce Golding
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