My daughter would still be alive if it weren't for the high cost of insulin

I am a mother of two children with Type 1 diabetes. My eldest daughter, Antavia, was diagnosed with Type 1 diabetes at the age of 16, and my youngest daughter, Antanique, was diagnosed at the age of 12.

In 2017, Antavia began to ration her insulin because she could not afford the $1,200 price tag for a 90-day supply on her minimum wage job. She died in her sleep at age 22 after she went into diabetic ketoacidosis, or DKA.

If there is not immediate action taken on rising prescription drug costs, I could lose two daughters to the greed of pharmaceutical companies.

Antavia worked at Cincinnati’s Paul Brown Stadium as a seasonal concession worker. The job was perfect for her because she loved people. Antavia always had a huge grin on her face, and her friends called her “Smiley.” I did not know about this nickname until her memorial service, but I was not surprised. Antavia had the ability to light up a room. I raised my daughters to be kind, independent, and to know the value of hard work. Unfortunately for Antavia, working hard could not save her life.

Antavia’s job did not offer health insurance, and although she made just over $1,000 per month, she did not qualify for Medicaid. Antavia had insurance through my employer and Ohio’s Bureau For Children With Medical Handicaps, which helped cover the cost of her insulin. When she aged out of BCMH at age 21, the price of her insulin became unaffordable. Under my plan, a 90-day supply of insulin cost $1,200 before meeting our deductible, and after the deductible was met, it cost $500 — not including copays. How can any young adult afford that? Antavia certainly could not.

When Antavia started to run low on insulin, she had no choice but to borrow insulin from her younger sister and grandfather until they didn’t have any they could spare. She began to eat less to reduce her insulin needs. This, of course, was dangerous and unsustainable solution. As a result of this rationing, Antavia had so little insulin in her body that it triggered fatal DKA. In the wealthiest country in the world, I don’t think anyone should go without life-sustaining medication, but that is the reality for many Americans.

Trump promised to address price gouging and even said he would “get drug prices so far lower than they are now, your head will spin.”

My head is spinning, but it is not because he has addressed the rising costs of prescription drugs. It is because he decided to appoint a former pharmaceutical executive, Alex Azar, to head the Department of Health and Human Services.

During his tenure at Eli Lilly and Company, Azar increased the price of insulin by more than 300% over just five years. I find it hard to believe that he has any interest in lowering the cost of insulin — or any drugs — for everyday Americans. It costs most pharmaceutical companies between $3.69 and $6.16 to manufacture a vial of analog insulin, yet most Americans are paying, on average, $300 per vial.

If pharmaceutical companies were held accountable, my daughter would still be here. I believe that pharmaceutical price gouging should be illegal in the United States, and I have taken my fight to Congress and protested outside the corporate offices of pharmaceutical companies.

Trump campaigned on using the federal government to negotiate lower drug prices, but pharmaceutical executives managed to talk him out of it in just one meeting. Despite the immense media coverage on drug prices and stories of people dying from rationing their medications, insulin prices continue to surge.

My youngest daughter Antanique is an outgoing 19-year-old pre-law student at the University of Toledo. Like any parent, I am excited for her to pursue her career. I am also fearful for when she turns 21 and ages out of BCMH. When Antanique graduates, she will have insurance, but the deductibles and copays are likely to be astronomical. I worry that she will be forced to choose between tuition, diabetic medical supplies, and the medication that keeps her alive.

After my testimony in January before the House Oversight Committee, Chairman Elijah Cummings (D-MD) said, “This is a matter of life and death. We have a duty to act now.”

He is right. Unfortunately, my daughter Antavia needed someone to act two years ago.

On Sept. 14, I am participating in a vigil for families who have lost loved ones due to the immorally high cost of insulin. I hope that my participation shows how rising prescription drug prices is a life or death issue for people across the country.

I miss my daughter every single day. That’s why I will continue to fight until all Americans can afford the prescription drugs that keep them alive.

Antroinette Worsham is the Founder and CEO of T1Diabetes Journey Inc. She is a proud mother and resides in Cincinnati, Ohio. 

Worsham will be speaking at a vigil hosted byT1International #insulin4all advocates for those who’ve lost their lives due to insulin rationing. The event will be held on Saturday, Sept. 14 outside of the Eli Lilly Headquarters in Indianapolis.