When Jacqueline Vakil needed a refill for Flovent, her 4-year-old son’s asthma medicine, she hit a wall. The manufacturer, GSK, had stopped making the inhaler in January, leaving her scrambling for alternatives.
To make matters worse, Vakil’s insurance wouldn’t cover the alternative drug their doctor suggested.
“I was constantly on the phone with our doctor to find a substitute,” Vakil said.
Her son James struggled with night-time coughing despite efforts with Vicks VapoRub, a humidifier, and steam.
“He couldn’t sleep at night,” she said. “His school reported constant coughing as well.”
Vakil spent hours communicating with her pediatrician, pharmacist, and insurance company. Initially, her insurance suggested a dry powder inhaler, but James, at four years old, couldn’t manage the required breathing technique.
“I felt helpless,” Vakil admitted.
After seven weeks, Dr. Joannie Yeh at Nemours Children’s Health in Media, Pa., found a medication that worked and was covered by insurance.
Dr. Yeh noted that even under ideal circumstances, finding a new medication can take days, leaving patients and parents frustrated and scared.
“Parents are also working,” she said. “They can’t spend all day looking for medication and calling around.”
Some of her patients ended up in urgent care or the emergency room due to deteriorating asthma conditions.
Trey Currie, a 9-year-old from Philadelphia, had a severe asthma attack in late April after Flovent was discontinued. His mother, Shante Currie, took him to the Children’s Hospital of Philadelphia, where he was admitted to the ICU.
“You could see his ribs because he was struggling so hard to breathe,” Currie said.
Trey needed a breathing machine and an IV during his two-day ICU stay. Finding an alternative medication covered by insurance took those two days.
The Children’s Hospital of Philadelphia reported a 50% increase in intensive care admissions for children with asthma in March and April compared to the previous year. At least seven children have died from uncontrolled asthma in the Philadelphia region this year, significantly more than previous years.
“One kid dying is just one too many,” said Dr. Tyra Bryant-Stephens, medical director of the hospital’s community asthma prevention program.
Dr. Chén Kenyon, a pediatrician and health researcher, suggested other factors might contribute to the rise in hospitalizations and deaths. However, he stressed that effective medications exist to prevent asthma attacks.
“There’s friction and frustration not being able to get families medicines that reduce asthma attacks,” he said.
The reasons behind GSK’s decision to stop making Flovent and the lack of insurance coverage for alternatives are complex.
Pharmacy benefit managers, who decide which medications insurance plans cover, chose not to cover generic alternatives that could have helped patients like James and Trey.
According to Alex Brill, economist and founder of Matrix Global Advisors, the issue began with a new law in January penalizing drugmakers for significant price increases for Medicaid patients. GSK chose to stop making Flovent to avoid penalties. They collaborated with another company to make a generic version, but it cost more, and pharmacy benefit managers opted not to cover it.
Brill explained that pharmacy benefit managers aim to reduce healthcare costs, balancing drug price reductions and affordable health insurance.
Patients nationwide face similar issues. Dr. Christopher Oermann, a pediatric pulmonologist at Children’s Mercy Kansas City, anticipated the problem since GSK’s announcement.
“It was as big a disaster as we thought it would be,” he said.
GSK stated they discontinued Flovent only after ensuring an authorized generic version was available, continuing to work with the company to make it accessible.
Dr. Oermann noted improvements since the beginning of the year, with Medicaid programs in several states and some private insurers making changes to ease access to alternative drugs. However, some of these alternatives are now experiencing shortages.
