Pete D’Angelo and his wife were told last summer their 6-year-old son had a serious tree nut allergy.
The couple researched the market for epinephrine auto-injectors that could be used to save their son’s life during a severe allergy attack.
So, the couple opted for a generic epinephrine auto-injector that their health insurance plan would cover at no cost to them.
However, when D’Angelo went to register his son for kindergarten in a New York public school, he was told the generic version wasn’t acceptable.
Teachers had not been trained on those devices.
So, D’Angelo shelled out about $500 for a packet of two EpiPens, one for the school nurse and the other for his son’s classroom.
“It’s not cheap, but the peace of mind it affords is worth it,” D’Angelo told Healthline.
D’Angelo said the price is a bit of a burden, but his family can absorb the cost.
Other parents of children with severe allergies aren’t as fortunate, especially with the Auvi-Q device returning to the market this week with a listed price of $4,500.
“I can’t see it being easy on anyone,” said D’Angelo.
Nobody pays full price
The listed price for the epinephrine auto-injectors can be misleading.
Tonya Winders, president and chief executive officer of the Allergy & Asthma Network, said it’s similar to the sticker price on a new car.
It’s more of a starting point.
Winders said companies like Mylan, which manufactures the EpiPen, and Kaleo, which produces Auvi-Q, negotiate exclusive deals with insurance companies and pharmacies.
The overall price is usually lowered through rebates and discounts.
A patient will pay a certain amount at their pharmacy and their insurance will pay an undisclosed amount to the manufacturer.
Winders said it’s been reported that Mylan gets $274 for each EpiPen packet while the remaining $334 goes to the pharmacy and other entities.
However, Winders added, a consumer might never know how much their insurance company actually paid because the exclusive deals keep those figures secret.
“There’s not a lot of transparency,” she told Healthline.
Officials at Kaleo said in an email to Healthline that the company has an “access program” that allows most consumers with insurance to pay nothing for their Auvi-Q product.
Even if a consumer’s insurance plan doesn’t pay for the device, Kaleo officials said the company absorbs the cost.
Company officials added that households without government or commercial insurance that earn less than $100,000 a year also pay nothing.
People without insurance pay a cash price of $360.
“Kaleo believes that the most important price is the price to the patient,” Mark Herzog, vice president of corporate affairs, told Healthline.
The burden on families
D’Angelo notes that whatever a family pays for an auto-injector, it is an ongoing cost.
The devices usually expire about a year after they are purchased, so they need to be replaced annually.
In addition, parents need to buy two packets. One for their child’s school and one for their home.
He says there is also paperwork to fill out and hoops to jump through to make sure their child is safe at school.
“It’s not made easy,” he said.
Winders said the annual costs can be a financial burden for some families, especially since the devices are considered to be an essential commodity.
During a severe allergy attack, you don’t have time to drive to the pharmacy or the emergency room.
“These are not luxury items,” Winders said. “They are lifesaving devices.”
Winders and D’Angelo said it’s difficult to know if a family’s insurance costs will rise if they are purchasing epinephrine auto-injectors on an annual basis.
“It goes up every year anyway,” said D’Angelo.
Winders said having the auto-injectors is like having life insurance.
You hope you never have to use them, but they are there if you need them.