When Jacqueline Vakil needed a refill for Flovent, her 4-year-old son’s asthma medicine, she couldn’t get it. The drugmaker GSK had stopped making the popular inhaler, back in January.
To make matters worse, Vakil’s insurance provider wouldn’t cover the alternative drug their doctor suggested.
“It got to the point that I was on the phone constantly with our doctor to try to find a substitute,” Vakil says.
All the while, her son James was up at night coughing. She tried Vicks VapoRub, a humidifier, and steam from a hot shower to help soothe his deep cough.
"He couldn't sleep at night with the cough,” she says. “He would go to school and his school would tell me that he's having a constant cough there as well."
Vakil spent hours talking with her pediatrician, the pharmacist and her insurance company trying to find a replacement. At first the insurance company suggested a dry powder inhaler, but it didn't work for her son because the breathing techniques required were too difficult for a 4-year-old.
"The whole process was frustrating because I felt helpless," Vakil says.
Finally, after seven weeks, James’ pediatrician, Dr. Joannie Yeh at Nemours Children's Health in Media, Pa., helped find a medication that worked for James and was covered by insurance.
Yeh says that even when things go smoothly it can take days to find new medication, leaving her patients feeling frustrated and scared.
“And of course parents are also working,” she says. “They can’t spend all day looking for medication and calling around.”
Yeh says some of her patients have ended up in urgent care or the emergency room because their asthma got so bad.
That’s what happened to 9-year-old Trey Currie, who lives in Philadelphia.
Trey used to use Flovent to control his asthma, but his mother Shante Currie says they were no longer able to get the medication after it was discontinued. Then in late April, Trey had an asthma attack at home that left him coughing and wheezing. Even a short-acting rescue medication didn’t help.
"You could see his ribs because he was struggling so hard to breathe," Currie says.
Trey was in such bad shape, she says, she took him immediately to the Children's Hospital of Philadelphia, where he went to the intensive care unit.
"He had to get on a breathing machine and to get an IV,” Currie says.
Currie and Trey’s father stayed by his side during the two days that he was in the ICU. The doctors didn’t want to send Trey home without an asthma medication, but because Flovent was no longer available, it took them two days to work out an alternative that the insurance plan would cover.
Doctors at the Children's Hospital of Philadelphia reported in May that admissions to intensive care for children with asthma were up 50% in March and April compared to last year. They also said at least seven children have died in the Philadelphia region this year due to uncontrolled asthma, which is significantly more than in previous years.
"When asthma deaths are totally preventable, one kid ... dying is just one too many," said Dr. Tyra Bryant-Stephens, medical director of the community asthma prevention program at the Children's Hospital of Philadelphia.
Pediatrician and health researcher Dr. Chén Kenyon says there are probably some other factors contributing to the increase in asthma-related hospitalizations and deaths. Still, he says this shouldn't happen because there are effective medications that can prevent asthma attacks.
"This has been a source of just friction and frustration ... in terms of not being able to get families medicines that we know are effective for reducing asthma attacks," he says.
The reasons GSK stopped making Flovent and why alternatives weren’t covered are complex.
Pharmacy benefit managers, middlemen that decide what medications insurance plans will pay for, decided not to cover generic asthma medications that could have worked as alternatives for patients like James and Trey.
The trade association for pharmacy benefit managers, the Pharmaceutical Care Management Association, referred questions to Alex Brill, economist and founder of an economic policy consulting firm Matrix Global Advisors, which has consulted for the Pharmaceutical Care Management Association.
Brill said this all started because a new law went into effect this January that would have penalized drugmakers for big price increases in drugs for Medicaid patients, and the drugmaker GSK chose to stop making Flovent instead of risking a penalty. GSK worked with another company to make a generic version of Flovent. But Brill says the generic version costs more, and pharmacy benefit managers did not want to pay more, so they didn’t cover it in many insurance plans. The end result of the negotiation stalemate is that patients lost out.
Brill says the pharmacy benefit managers’ goal is to try to bring health care costs down. Most people would like to see the costs of drugs decrease, but people also don’t want health insurance to cost too much, he explains.
" And so we're trying to ... work in between those two objectives," Brill says.
Patients in other parts of the country are also experiencing similar problems finding alternatives to Flovent. Dr. Christopher Oermann, is a pediatric pulmonologist at Children’s Mercy Kansas City. He says doctors have been bracing for the impact since GSK announced they would discontinue Flovent last year.
“It was just as big a disaster as we thought it was going to be,” he says.
In a statement, drug maker GSK said they discontinued the popular inhaler only after making sure there would be an authorized generic version, and that they continue to work with that company to make sure that version is available to young patients.
Oermann says the situation has improved since the beginning of the year. Medicaid programs in Pennsylvania, New York, Texas and Mississippi have made changes so patients can get alternative drugs more easily. And some private insurers have done the same.
But now some of these alternative drugs are experiencing shortages.
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