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Kerry Pearl remembers the pharmacist stocking up on the medicine her 4-year-old son needed to help him breathe.
“He literally looked at me like, 'I can't give you this,'” she recalled. “My poor boy is at home, he hasn't slept all night, and when he wakes up with a cough, you have the answer, and the insurance company has the key here.”
The asthma medication was fluticasone, the brand name is Flovent. In young children with asthma, they use it daily as a preventative medicine so their airways don't become too inflamed when triggers — viruses, cold air, pollen — can trigger an asthma attack.
She said that as an infant, Pearl's son would spend all night before starting and would sometimes gasp when he talked. With the medication, the asthma was finally under control.
But Flovent's creator, British pharmaceutical giant GSK, removed In January, the brand-name drug and its replacement — an approved generic form other than the brand name — did not have the same insurance coverage. He expenses Hundreds of dollars a month without it. The move left families like Pearl in turmoil.
Asthma drugs may be more expensive across the board until the Senate Health Committee, chaired by Sen. Bernie Sanders, opens up. Examination In the situation in January.
Not long ago, three major asthma inhaler makers, including GSK, pledged to cover out-of-pocket costs for some US patients for $35.
The problem, doctors and parents told , is that those promises don't apply to the daily inhalers used by young children with asthma.
“The progress that has been made with the out-of-pocket cap is great, and it makes many of us feel optimistic overall that kids still can't get their hands on a preventative asthma inhaler,” he said. Dr. Robin CohenA pediatric pulmonologist at Boston Medical Center.
It is a condition that puts children at risk for asthma. Visits to the ER.
There are three inhalers in this category that children with mild asthma can use, Cohen explained. They're called metered-dose inhalers, and they're attached to a device called a spacer — basically a face mask that connects to the dispenser. This allows the drug to be given as an aerosol that only small children can inhale.
“A kid just has to breathe into a face mask and we know they're going to get the medicine,” Cohen said. Other devices in the category, she explains, “require the patient to initiate a strong deep breath and then hold the breath for 10 seconds.”
That's not the case. Toddlers and young children Can be taught to do.
Since GSK took its brand Flovent off the market earlier this year, the remaining three options have become more expensive and harder to find.
The approved generic version of Flovent, fluticasone, is sold by a different company, Prasco Laboratories. So GSK A promise A monthly out-of-pocket cost of $35 applies to all asthma and COPD products and does not apply to generic fluticasone.
But generic brand Flovent isn't as widely covered by insurers as it is, likely because it doesn't come with manufacturer rebates to lower net costs. Pharmacy benefit managers, who make decisions about how drugs are covered by insurance, told that the approved generic brand is more expensive than the branded version.
Doctors like Cohen and Christy SadreameliA pediatric pulmonologist at Johns Hopkins observed this last year. One solution was to try to switch children to an alternative, Asmanex, but that drug is now available. lack of as a result.
“It was worse than we expected,” Sadremeli told . “I have very few tools for this people.”
A third inhaler in this category is called the Alvesco, and it doesn't have extensive insurance coverage, Cohen said — probably because of its higher list price. Sadreameli cited data showing that he spends more than $300 a month before insurance coverage; Asmanex is less than half.
“We all know a kid who has struggled because of this,” Cohen said.
Julie Leach's 13-year-old daughter, Abby, has a rare condition called cerebrocosmandibular syndrome that restricts her lung development, and was doing well on Flovent until it was discontinued.
And insurance coverage for these drugs can lead families through bureaucratic odysseys to get their children the breath they need — a process they must go through every month.
Her insurer recommended that Abby use the drug Pulmicort instead of the generic Flovent. Abby's doctor, Sadreameli, said that since Abby has a tracheostomy tube in her airway, she should stick to metered-dose inhalers that can be used with spacers. Sadremeli and her team spent time working with Leach's insurer to agree on a solution and settled on Alvesco.
“Then the insurance came back and denied it, and I was like, 'No, no — that's all you've allowed,'” Leach told .
It took a month to work, but Abby didn't have any medication. When insurance finally approved the drug, a patient assistance coupon with a $65 co-pay was applied when Leach's secondary Medicaid coverage should have come with nothing.
“It took me another maybe two weeks to call all these people” to get rid of the coupon, Leach said. “Meanwhile, she's not breathing… I'm really scared because she's never been out of breath. So I didn't know how her lungs would respond without medication.
Every month, when Leach goes to fill her prescription — just one of the more than 12 medications Abby needs — she holds her breath.
Some insurers offer coverage options; OptumRx, one of the major PBMs, told that it allows children 5 and younger to get the approved generic Flovent without prior authorization, which is an additional step required for some drugs. For other patients who need it, he says, “their caregiver just needs to indicate that a spacer is needed.”
However, when a physician prescribes a drug, it's not always clear which PBM a patient has, Sadremeli said, and they often run into obstacles. And, Cohen said, out-of-pocket costs can still be high even with coverage.
Alvesco and Asmanex are made by Covis Pharma and Organon, which are not among the companies that have pledged $35 for asthma and COPD drugs. Besides GSK, two other manufacturers did. Boehringer Ingelheim And AstraZeneca.
Organon told it is working tirelessly to increase Asmanex availability, saying it will offer savings coupons to already privately insured patients to pay “up to $15” for each prescription.
Approved generic fluticasone maker Covis and Prasco did not immediately respond to 's questions about whether they plan to implement the price changes.
For parents like Leach and Pearl, the lack of help for children is incredibly frustrating.
“I don't know why we treat children like a minority,” Pearl said. “Kids need to breathe just like adults.”