Winston Hall, 9, needs growth hormone to manage symptoms of Prader-Willi syndrome, a genetic disorder. A shortage of medication contributed to behavioral problems that led to him being kicked out of school.
Bridget Bennett for NPR
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Winston Hall, 9, needs growth hormone to manage symptoms of Prader-Willi syndrome, a genetic disorder. A shortage of medication contributed to behavioral problems that led to him being kicked out of school.
Bridget Bennett for NPR
Dr. Jennifer Miller has authored dozens of studies on rare endocrine diseases over the past two decades. Hundreds of patients travel to Gainesville, Florida from all over the United States to see her and receive treatment.
But today his office is flooded with faxes, emails, text messages and phone calls that have little to do with his life’s work. Miller, a professor of pediatric endocrinology at the University of Florida College of Medicine, has research articles in his inbox that need just a few finishing touches before being published in medical journals. She has no time for them.
A shortage of growth hormone — along with how insurance companies are handling the problem — has consumed almost every free minute she had over the past six months.
Norditropin, the most commonly prescribed growth hormone, fell into short supply in the fall of 2022. It is still in short supply a year and a half later, despite assurances from Novo Nordisk, the drug’s manufacturer, that supplies would stabilize in 2024. As people try to switch to other brands, a ripple effect has also caused shortages of these products.
Children feel the effects of drug shortages
For Miller’s patients, 500 of whom suffer from a rare condition called Prader-Willi syndrome, it has been devastating. Without the injectable medication, they are always hungry, leading to blood sugar and behavioral problems, weight gain and other complications.
“These children are suffering. And it’s not good,” she said. “It’s overall a terrible situation because they’re eating more, they’re gaining more weight, you know, and they have a ton of behavioral problems. And that’s been a huge problem for us to not be able to growth hormone for some of these people for more than six months now.
Growth hormone is prescribed for conditions such as failure to thrive due to hormone deficiency, short stature due to various genetic conditions, and Prader-Willi syndrome. Sometimes this is only necessary during the child’s growing years. But for others, like Prader-Willi’s patients, it’s a lifelong treatment.
“People think, ‘Growth hormone. Oh, that’s bad, isn’t it? It’s for growth. Who cares if you don’t have it?’ But that’s not the point,” Miller says. “They experience real physiological consequences from not taking growth hormone. And to me, that’s just not acceptable.”
Prior authorizations make the problem worse
To make matters worse, insurance companies force patients and clinicians to jump through additional hoops to obtain the drug, even when there is a shortage.
Most insurance companies require pre-authorization for growth hormone, which means that health care providers must justify their prescription to the insurance company before the insurance company will cover the drug, allowing so the pharmacy can deliver it to the patient. The process can take days or weeks, which is tedious, but is only necessary once or twice a year for most families.
Now that medications are in short supply, patients and doctors are turning to injector pens of every size and brand available. This causes insurance companies to request a new prescription and prior authorization every time patients have to switch gears and request a different pen size because their usual size is out of stock.
“We’re just changing the size of the pens because that’s what’s available at the moment,” Miller says. “So we spend all day doing these prescriptions and prior authorizations. And then by the time the prior authorization is processed, 48 hours later, it’s often available as well.”
Karen Van Nuys, a health economist at the University of Southern California who has studied prior authorizations, says they have increased significantly for all kinds of drugs over the past 10 years. “As you can imagine, doctors hate this process,” she says. “It takes a huge amount of time on their part, it prevents them from doing more patient-centered work, and it causes delays.”
Now that growth hormone is in short supply, this becomes particularly tedious.
Some families say they obtained five pre-authorizations in a month before they could receive pens. Others were asked to ask their doctors to return their prescriptions multiple times, only to be told there was no medication. And some paid for drugs they never received.
Hillary and Jeff Hall were able to source Omnitrope, a growth hormone, from Mexico. But the drug cost $1,400 and was not covered by the Las Vegas family’s insurance.
Bridget Bennett for NPR
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Hillary and Jeff Hall were able to source Omnitrope, a growth hormone, from Mexico. But the drug cost $1,400 and was not covered by the Las Vegas family’s insurance.
Bridget Bennett for NPR
Hillary Hall, who lives in Las Vegas, spent hours on the phone trying to get growth hormone for her 9-year-old son, Winston Hall, who has Prader-Willi syndrome.
“I’ll get it in a month, and then they’ll say, ‘Oh, well, we don’t have that pen now. Now we need a new prescription and a new pre-authorization,'” he says. She. “It’s not an overnight process. It’s something that takes a few weeks. And then by the time they mail it to me, you know, we’re talking three weeks.”
Winston couldn’t get growth hormone for three months. The behavioral consequences have become particularly serious.
“He was kicked out of school once a week for the last three weeks,” Hillary says.
“He has a hard time getting through the day without having tantrums and things like that,” said his father, Jeff Hall. “They send him home because he had a breakdown and, you know, he likes to tear things off the walls.”
They ended up going without their insurance and buying Winston a 30-day supply of growth hormone from Mexico for $1,400.
Challenges remain, despite some improvements
Novo Nordisk says it is “taking all possible measures” to increase supply, which it says has become more consistent since the shortage began. It also says it is working with insurers and specialty pharmacies to simplify their drug dispensing processes.
The company said in an email to NPR on March 20 that it was temporarily discontinuing one of its pen sizes to focus on others. She expects supply issues to continue for at least a few months.
NPR asked the three major pharmacy benefit managers, which manage prescription drugs for insurance companies, why they still require new prescriptions and prior authorizations every time a patient changes during the shortage.
Members of the Hall family pose for a photo at their Las Vegas home: parents Hillary and Jeff and children Winston (left to right), Maggie and Walker.
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Members of the Hall family pose for a photo at their Las Vegas home: parents Hillary and Jeff and children Winston (left to right), Maggie and Walker.
Bridget Bennett for NPR
In an emailed statement, CVS Caremark defended its decision to maintain prior authorization for growth hormone. The release states that prior authorization can help reduce costs for employers who sponsor their employees’ health plans and that the Food and Drug Administration does not consider different brand names interchangeable, requiring a new prescription when the patients change brands because one of them is out of stock.
Express Scripts said it has provided plan sponsors, such as employers, with some options to help patients with drug shortages in general: “This may include recommendations for additional preferred alternatives in the formulary and, in some cases , pre-approval of alternatives for affected drugs to minimize additional steps for prescribers and patients » The company did not specify what it was doing specifically to address the hormone shortage. growth, but added that the company was in contact with manufacturers and hoped the shortage would be resolved “in the coming weeks.”
Optum Rx said it has “achieved several…
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