My son died from rationing his insulin
Democrats’ drug pricing plan won’t help uninsured
My son Alec had just turned 26 when he died from rationing insulin in 2017. After his birthday, he was no longer eligible to be covered by my health insurance. The pharmacist told him he would have to pay $1,300 for his supplies. Within a month, I got a call that no parent wants to get.
I wish everyone had the chance to meet Alec. He was loving, caring, goofy, compassionate, adventurous, generous and persistent. His hugs are one of the things I miss the most.
But my son was not the only one. Since 2017, at least 12 people have died from rationing insulin, according to T1International. Insulin rationing is real. The price of insulin in the United States has tripled just in the past decade. A quarter of patients with Type 1 or 2 diabetes skip or reduce doses because of cost. The daily requests that I see on social media asking for help, asking for insulin and supplies, continue to grow. People are struggling to stay alive.
That is why the House Democrats’ proposal, the Lower Drug Costs Now Act of 2019, is so important. It would finally allow the government to negotiate prices for certain drugs, including insulin. Democrats are working to deliver on a promise that President Donald Trump broke.
If enacted, the legislation could make a real difference, but it still does not go far enough. The current draft only benefits people who have health insurance. It does not lower prices for the uninsured, for people like Alec.
My son wasn’t diagnosed with Type 1 diabetes, which can appear at any age, until he was 23 years old. It is not preventable, and there is no cure. More than 7 million diabetic Americans take insulin, and too many of them are stuck without insurance like my son.
Job didn’t offer insurance
Alec worked full time as a restaurant manager, but his workplace did not offer insurance. His $35,000 annual salary put him above the income limit for Medicaid in Minnesota, but he was still not able to afford the sky-high premiums and deductibles of private plans.
We looked into the Affordable Care Act, but the options were so expensive that he’d end up paying for his insulin out of pocket. Alec decided not to sign up for insurance, which would just be another monthly cost, as he continued to look for a better option.
About 30 million people under age 65 do not have health insurance, according to the Centers for Disease Control and Prevention. They are among the most vulnerable in our health care system and deserve the most support, not the least. We cannot leave them behind. We must have insulin available for all who need it, not just for some.
Expanding the bill to cover people who do not have insurance is a simple fix to the House proposal.
There is no reason why insulin should be so expensive. In 1996, Eli Lilly sold insulin for $21 a vial. Today, it sells the same vial for $275. Prices, profits and executive pay are all increasing. The three companies that control most of the world’s insulin market know they can effectively charge whatever they want since every single Type 1 diabetic has no choice. If they want to live, they have to find a way to pay.
In a new study on drug pricing published in the journal Neurology, one executive, who was not named, said, “The rationales for the price increases are purely what can maximize profit. There’s no other rationale for it.”
Although the study evaluated the pricing decisions for multiple sclerosis, not insulin, it isn’t difficult to imagine the same logic of price gouging applies to the nearly 100-year-old drug.
I was arrested
Corporations will continue to put profits over people. Their claims about supposedly applying profits to research and innovation should not limit us.
I have spent the years after Alec’s death advocating for affordable insulin. I have marched in the streets with inspiring patient groups, worked with legislators and even met with pharma executives. This year, I was arrested in front of the Eli Lilly headquarters in Indianapolis saying the names of people who have died rationing insulin.
Why? Because I had to plan my 26year-old son’s funeral. I had to find a way to come up with more than $12,000, the price of his funeral. I had to say my final goodbyes way too early.
I am doing everything I can to make sure no other parent has to experience the same tragedy.
Now, our elected representatives must do their part. Congress must find a way to lower drug prices for everyone.
Nicole Smith-Holt is an advocate for affordable insulin and a charity ambassador for T1International, a nonprofit for those impacted by Type 1 diabetes.
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