NEW YORK — Instead of slumber parties and hanging out with her friends, at 13 years old Amanda Di Lella was instead worrying about her blood sugar and giving herself insulin injections.
Di Lella grew up in Miami, Florida, and tells PIX11 she saw the struggle to afford the expensive vials of insulin first hand, especially during a time she remembers her parents being unemployed.
“Insurance dictated a lot of what my parents did. If there wasn't good insurance, my parents couldn't take that job because they had a child counting on them at home that needed this great insurance for all of these supplies to stay alive,”recalls Di Lella.
Rationing insulin became a reality for her family and while it is a dangerous decision, it is one too many Americans make.
According to the American Diabetes Association, approximately 25% of those living with the disease in the United States take less insulin than they are prescribed. The problem doesn’t end there. Soaring prices has even forced diabetes patients to travel to Canada or Mexico for the drug, purchase it on the black market and in some extreme cases skip taking insulin altogether. This can lead to long-term health complications and even be deadly.
The unaffordability of the drug has even led freshman Congresswoman Alexandria Ocasio-Cortez (D-NY) to weigh in. She represents constituents in both Queens and the Bronx, where diabetes cases are the highest in New York.
PIX11 cameras caught up with Ocasio-Cortez a few weeks ago.
“I was just in Jackson Heights this morning listening to families who are talking about they are literally forced to choose between getting their medicine or making their rent check on time. It is getting out of control,” she said.
Dr. David Lam, an endocrinologist at Mount Sinai, said he sees the problem firsthand and says it crosses all socio-economic lines.
“What upsets me the most? Patients who were doing wonderfully and then out of embarrassment, maybe fear, they never tell me that in the last three months they haven’t been able to get their insulin. Diabetes went from well controlled to uncontrolled,” explains Dr. Lam.
An average vial could cost $300 to $500. Some are even paying nearly $1,000 a month for the life-saving medication, and despite the creators of insulin intending the drug to be accessible for all, the average price nearly tripled between 2002 and 2013.
Diabetics rationing their lives for dollars is too dangerous a gamble, but bi-partisan efforts to make insulin affordable appear to finally be underway in Washington.
In April 2019, The House Committee on Energy and Commerce, where local New Jersey Congressman Frank Pallone, Jr. is chair, held a three-hour hearing on the rising costs of insulin. The hearing brought together drug manufacturers, insurance companies, health care advocates and politicians to collectively work on a solution.
The reason for the rising cost is a complex one that begins with where insulin is made. Savings or rebates, experts say, is often passed off to what is known as Pharmacy Benefit Managers or PBM’s and insurance companies, but never to the consumer.
Dr. Aaron Kowalski, JDRF’s president and CEO, testified to that very point weeks ago at the Congressional hearing. He believes one solution is quite simple —to bring the list price of the drug itself down.
“We feel that people with diabetes should pay the net price. That these rebates need to be passed on and really eliminated,” explains Dr. Kowalski.
For Type 1 diabetes sufferers like Alex Seenan, who lives in Brooklyn, limited access to insulin is a matter of life and death.
“This is just another thing that shows the control of your body isn't yours. You’re dependent on insurance companies and political leaders on how you can manage your disease and your body,” Seenan said.
For now, millions of Americans dependent on insulin continue to wait for Washington to act.
American Diabetes Association’s Center: Call 1-800-DIABETES
To learn more about the complex insulin supply chain, click here.
If you’re interested in signing the effort to make insulin affordable, click here.