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Families discuss costs of life-saving medicine as lawmakers propose new legislation

Several families are applauding steps to tackle the price of life-saving medicine as lawmakers propose new legislation to provide transparency in pricing. Democ...

Several families are applauding steps to tackle the price of life-saving medicine as lawmakers propose new legislation to provide transparency in pricing.

Democratic State Reps. Dan Frankel and Austin Davis of Allegheny County proposed legislation Monday that seeks to set limits that lower what Pennsylvanians pay for medically necessary drugs such as epinephrine auto-injectors and insulin.

Read more about the legislation here.

Angie Lankford is the Development Manager for JDRF, an organization that seeks to improve the lives of those living with Type I diabetes.

Her own son, Trey, was diagnosed on June 10, 2011. At first, his family thought he had the flu. Days later, Trey was rushed by ambulance to the hospital after a doctor ordered him to have his blood sugar tested. Lankford's son is now a freshman at the University of Akron majoring in business. But, he will be insulin-dependent for the rest of his life.

"I never thought I'd be able to send him 5 hours away to school when he was first diagnosed. I had to sleep in the room with him when he was first diagnosed. Like, it's terrifying. You're afraid they're going to die," she said.

Lankford now works with JDRF (Juvenile Diabetes Research Foundation) to help people across the area living with Type I diabetes. She said the group's advocacy department spends time with local representatives talking to them about the need for cheaper insulin and predictable pricing.

"My first few months all I did was have nightmares about how I was going to keep my son alive and how he was ever going to afford this life," said Lankford.

Lankford said with her son away at college, he also worries about the cost of insulin once he graduates and is off his family's insurance.

"He will often make comments like, well I have to have a high paying job. I have to make good money. I can't just do something I love or am passionate about because I have to make money in order to stay alive," she said. "It's sad that he feels that kind of pressure at age 18 to know that he has to have a high paying job because he can't afford his medication to stay alive otherwise."

Lankford said JDRF is holding a seminar for employees regarding insulin affordability. The group also holds educational sessions focused on Type I diabetes care and management. To learn more on that, anyone can register online.

Priscilla Allen also knows what it is like to raise a child who relies on life-saving medicine. Two of her three sons have food allergies and rely on epinephrine auto-injectors in emergency situations.

"Food allergies are so so unpredictable," she said as she showed FOX43 the drawer and backpack of medicine she makes sure stays fully stocked at all times. "You just never know how many. Especially because I have two kids. What if both of them have a reaction at the same time?"

Allen said she finds help from other families online as she works to maintain the health of her two children. She admits, she used to use EpiPens but switched to a generic version when she said the cost of the drug became too expensive for her family. She adds, she is concerned over where prices could head in the future for epinephrine and how easily available the drug will be in the future.

"The cost just keeps going up so how much more can it go up," she said.

Allen adds, one box of the drug is usually not enough for families who have children who attend school as epinephrine shots need to be close by the child in case any issue should arise.

She hopes any bill pushed through the state would control costs and provide more access to epinephrine shots in places like schools.

"It's so much easier having 2 two packs because as you can see, I keep one in the diaper bag. I keep one in the kitchen so in that way if one gets left somewhere by mistake I always know I have one here at home." she said. "If your child is in school you definitely need 2 two packs because you need one to be at school and one to be at home."