Patients spend hundreds for life-saving medicine that reportedly costs $1

EpiPens could mean the difference between life and death for people with severe food allergies.

According to national reports, the actual drug only costs about $1, but many patients pay hundreds for the prescription.

Those reports said that in 2004, EpiPens cost about $50. Now, they're more than $300.

Parent: "Life-saving medicines that people have to have"

Tracy Bush's son, Devin, is 15 years old and so allergic to certain foods that one bite of the wrong thing could kill him.

"Every single time he leaves, I bite my nails," she said.

Like an estimated 3.6 million other Americans, Devin Bush carries a set of EpiPens.

"It's a no-brainer. He doesn't leave the house if he doesn't have both EpiPens," she said.

Tracy Bush qualified for a deal on Devin Bush's medicine but still worries about patients in general.

"These are life-saving medicines that people have to have," Tracy Bush said.

Company's response

Action 9 investigator Jason Stoogenke reached out to Mylan, the company that makes EpiPens.

The company released the following statement:

"Mylan does not set the final retail cost of its products charged to patients. One would have to look across the many parties that constitute the distribution channel as they all play a role in the ultimate access and retail price of prescription drugs in the marketplace."

"With changes in the healthcare insurance landscape, an increasing number of people and families are enrolled in high deductible health plans. This shift, along with other insurance landscape changes, has presented new challenges for consumers, and they are bearing more of the cost. This is not an easy challenge to address, but we recognize the need and are committed to working with customers and payors to find solutions to meet the needs of the patients and families we serve."

"Epinephrine auto-injectors are not filled on a monthly basis, requiring refills upon expiration, approximately every 12 to 18 months."

Mylan does offer discounts for patients who qualify for its assistance program, but when Stoogenke asked Mylan how many people qualify, it wouldn't say.

LINK: Apply for assistance

The assistance program also offers a $100 discount card for eligible patients.

Little competition

Mylan EpiPens make up 90 percent of the epinephrine auto-injector market. There's more competition on the horizon but not yet.

According to published reports, the U.S. Food and Drug Administration recently rejected a drug that would compete with EpiPens.

"The FDA can neither confirm nor deny the existence of an application. You may wish to ask the company for more information," a FDA spokesperson told Stoogenke.

The alleged company, Teva Pharmaceutical Industries, didn't respond to questions either.

University of North Carolina at Charlotte professor Jennifer Troyer specializes in health care, especially drug pricing issues.

"I think we have this problem with all life-saving medicines in the United States right now," she said.

She said it's hard to balance what's good for patients with what's good for drug companies.

"They're intended to make a profit. They also do a lot of investment into drugs that don't pan out, and so, when they have something that does really pan out, they tend to raise prices on those things more than what we think is fair," Troyer said.

Awareness group acts

Stoogenke also reached out to the awareness group Food Allergy Research and Education.

The group released the following statement:

"We don't have insights on the rationale for epinephrine price increases, and questions on pricing of epinephrine auto-injectors should be directed to the manufacturer, insurers, pharmacy benefit managers and intermediaries that all play a role in the cost of epinephrine for patients. FARE believes that all these entities need to justify the increased cost of epinephrine to consumers. While FARE does not have a role in setting prices, we work to ensure that the patient's voice is heard as part of this process and try to ensure that all individuals have access to this medication."

"FARE's position is that no individual in need of life-saving epinephrine should ever be without this life-saving drug due to a lack of accessible, affordable options. This is a fast-growing and overwhelming problem for our community.

While the expansion of Medicaid coverage in many states has meant an increase in the number of previously uninsured patients who are now able to get coverage for epinephrine, in other parts of the insurance market, the number of health plans with high out-of-pocket costs is rising rapidly, meaning more people will likely have issues with epinephrine purchasing in the coming years.

We have advocated for increased transparency regarding pricing and better insurance coverage for epinephrine. We have also encouraged additional manufacturers to enter the market with the hope that competition will create lower-priced options and improve patient access and compliance.

None of these efforts will provide immediate relief, however, so FARE is in the preliminary stages of exploring approaches for urgent assistance for those in the community who need better access to epinephrine now."

Social media response

Within hours of Action 9 posting this topic on Stoogenke's Facebook page, dozens of viewers commented.

Many wrote they were able to get discounts, making the price as low as $10.

But, many also commented how they have to spend hundreds for EpiPens. In cases where families have multiple members with food allergies or have to have EpiPens at various locations (school, camp, after-school programs, etc.), some report spending more than $1,000.

One viewer pointed out this petition campaign she recommended patients support:

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