Elizabeth Pfiester, 30, is a medical refugee, of sorts.
It’s a term that makes her cringe, but consider this: Pfiester was born and raised in Illinois. She now lives in England where she can afford to live with Type 1 diabetes. If she moved back to the U.S., she’d have trouble paying for the drugs and equipment necessary to keep her alive.
I’ve written about diabetes for years—the new pumps, the new kinds of insulin, the so-called external pancreas. I focused on advances in endocrinology, leaps in our ability to control and attempt to cure this hormone ailment. But until recently, I’ve ignored the cost. That’s because I started noticing tweets and Facebook posts by diabetes-activists (I didn’t even realize there was such a thing).
So I called up friends and relatives who either have the illness or care for someone who does.
My cousin, whose teenage son has Type 1 diabetes, told me that battling with the pump companies and insulin-making companies and insurance is a full-time job. She knows their numbers by heart. So many mothers told me the same thing. They want their child to have a back-up pump because if the one they have fails, the consequences could be fatal.
That got me thinking that if you’re going to have this condition, you better be really rich or have the moxie and time to keep fighting to get the drugs you or your loved one needs to survive.
Another friend put it this way to me via email:
Welcome to my world. Pharmacy, glucose monitor, pump people and insurance folks hate me. Some black comedy for ya..
“Sorry Mr H we can’t ship the insulin”
‘Oh why is that”
” Hope needs her doctor to update her prescription”
“Ummm excuse me why would that be, she’s had Type 1 diabetes – for about 9 plus years. So did I like miss it?”
“Miss the flippin’ front page article that they cured Type I Diabetes – other than checking to see if Hope is dead—I imagine you would not want to ship to a dead person – how is her prescription ever going to change?”
“Well maybe if she changed her diet and exercised she wouldn’t need so much insulin”
“She’s Type 1 not Type 2”
“There’s a difference?”
And so it goes, .9 years every month some other nuttiness. And yes every year premiums go up, deductibles and co-pays go up and the prices for the drugs go up. And every year quarter by quarter need to get reapproved for everything. It’s idiocy.
Next week, on September 30th, Pfiester, who runs an organization called T1International, is flying in from the U.K. for the second annual rally outside of the headquarters of Eli Lilly in Indianapolis. Last year, about 30 people showed up but it was a powerful day, launching several state groups where activists have since gotten insulin price on legislative agenda and continue to push it to the mainstream.
“First and foremost,” said Pfiester, “people should be able to afford to make a choice to take whatever is available and best for their health. Right now, there is a two-tiered system. Those who have good insurance coverage or who can afford it by other means get analog insulin that enables them more flexibility and less unpredictability in blood sugar levels.”
There are older, cheaper forms of insulin but, Pfiester, who used that insulin when she was young, explained that older insulins cause more dangerous highs and lows of blood sugar levels.
Nicole Smith-Holt, is among those planning to speak at the September 30th demonstration. Her son died last year because he couldn’t afford his insulin. He was 26 and was no longer on his parent’s insurance. When he got to the pharmacy, he was shocked by the cost of his insulin. He left the pharmacy without buying any and attempted to ration what he had left. He was found dead in his apartment.
Smith-Holt is not alone. Kevin Houdeshell, 36, died four years ago because the pharmacy did not have his prescription and he could not reach his doctor. It was the afternoon of New Year’s Eve.
The families showing up to the protest next week want to ensure that these tragic stories will never happen again. Those involved with T1International are determined and optimistic. “People who were never active and engaged before are now meeting with legislators, getting commitments from them to tackle drug pricing issues,” said Pfiester. “With tragic stories getting more traction every day, I think the fact that patients are rising up to put an end to corporate greed is something worth amplifying.”
If you want to join them, here’s the EVITE: https://www.eventbrite.com/e/indianapolis-insulin4all-demonstration-tickets-48870082733