Families fearful of life-saving drug shortage: ‘I’m still waiting for that refill’

Local families are fearful to send their children to school because of life-saving allergy drug shortage

Families fearful of EpiPen nationwide shortage

CLEVELAND, Ohio (WOIO) -A lifesaving drug is on back order. EpiPens are used by children and adults to reverse the effects of a severe allergic reaction from food, bee stings, or other allergies. Right now, the drugs are on a nationwide shortage, with no known date of when more will be available.

"His face was swollen. His eyes were swollen. His lips were swollen,” said Samantha Licker.

It was a mom’s worst nightmare.

“He couldn’t catch his breath. He just kept coughing, coughing, coughing,”she said.

Her then, 3-year-old son was in the hospital with a severe allergic reaction.

“We learned the hard way that he will have anaphylaxis if he ingests dairy," said Licker.

It happened to her son Chase a few years ago. He was in the hospital for two days.

Now, two years later, Chase is heading to Kindergarten. It’s a day, that came close to never happening.

“It’s just really scary knowing that’s the only line of defense he has and that it needs to with him at all times," Licker said.

That line of defense is a life saving, auto inject-able drug, called an epinephrine pen. It’s used by millions of kids across the nation.

The drug that once saved Chase’s life comes at a high cost, and now, it also comes with a wait list.

“The pharmacy just said it’s in process and they didn’t really give me any information beside that,” Chase’s mom explained.

Right now, the FDA lists EpiPen, the most widely used brand of auto inject-able epinephrine on a nationwide shortage, with no known date of availability. The parent company, Mylan states the reason for the shortage as “manufacturing delays.”

“Before there was a shortage, I was able to get three boxes at a time. Then, I was able to get two boxes and this past time, I was only able to get one box," Licker said.

In 2017, the FDA sent Mylan a warning letter stating they were violating good standing manufacturing practices. They also received a warning letter in November 2018 for sanitary conditions of the company’s West Virginia plant.

The FDA told 19 News they can’t impose any fines on the company for having significant shortages.

“Shortages are always possible and unfortunately, I’ve seen that over the course of my career," said Dr. Samuel Friedlander, Adult and Pediatric Allergy Specialist with University Hospitals.

Dr. Friedlander is also monitoring the drug shortage.

”I have many patients that are at risk of anaphylaxis or life-threatening allergy," he said.

According to the CDC, between 1997 and 2011, food allergies in children increased by 50%.

Other generic versions of EpiPen may be available. There is a newer version called Auvi-Q, but not all insurance carriers allow patients to get the generic or other brand name versions of the drug. Some of the other versions also don’t supply children’s dosages of the drugs.

19 News called a handful of local pharmacies in Northeast Ohio to check on their supply. Most didn’t have EpiPens in stock. When asked when they would get them in, pharmacists couldn’t tell us. Whether you pay with insurance or not, costs can be upwards of $300-$600 dollars.

“What I tell my patients is if they show up to the pharmacy and they get a number or answer that doesn’t seem correct. They should really contact their provider and see whether there might be a better option," Dr. Fiedlander explained.

The organization, Food Allergy, Research & Education estimates U.S. families spend a combined $25 billion each year caring for children with food allergies. That includes hospital and doctors visits, and of course, epinephrine.

For Chase, his allergy is so severe he needs EpiPens in his home, school, car, and anywhere else he goes.

“Every time we leave the house, it’s like, do you have your shoes on? Do you have your epipen?”his mom said.

Because of the shortage, the FDA approved EpiPen’s to be used up to four months past their expiration date. It’s only for certain pens and 19 News found some local school districts won’t accept the expired pens.

The changes are leaving many parents like Chase’s confused and upset about the rules.

“Not only nervous, but angry, like if you have a milk carton and it says the expiration date, it’s not like you’re going to use expired milk, so, should we be using expired life-saving medication or does that mean it’s actually not expired and it’s just the drug company’s way to get us to keep buying them?" questioned Licker.

Right now, Chase’s family is still waiting on another refill. In the meantime, they’re looking at other options. including the possibility of a trip to Canada where EpiPens are given without prescriptions and at a fraction of the cost.

You many be eligible to receive EpiPens at a discounted price. Click here for more information.

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