For three years, University of Florida Health Shands physician Frederick Southwick noticed an increase in patients experiencing diabetic ketoacidosis, a diabetes complication known as DKA and which can lead to a coma or even death.
Southwick, also a UF professor of medicine since 1991, said that the patients consistently told him that they had stopped taking insulin. They just didn’t say why.
Earlier this year, Southwick, who turns 73 Wednesday, founded the Gainesville chapter of the Right Care Alliance after the national organization approached him by email. Based also in Boston, Denver and Washington, the alliance is a coalition of doctors and patients that, its website states, seeks to “put patients, not profits at the heart of healthcare.”
Southwick said his work with Right Care helped him understand that the DKA patients he observed simply couldn’t afford insulin. DKA also necessitates intensive care, which Southwick estimated to cost between $10,000 to $15,000 or higher.
“When you make insulin unaffordable, people suffer and they die,” he said.
The local and national Right Care organizations are campaigning for greater affordability of insulin products, which all Type 1 diabetics and 7.4 million Americans need. The price nearly tripled in the past 15 years, according to an Endocrine Society statement published this month.
Wednesday is World Diabetes Day, according to the International Diabetes Federation.
Shaun Adams first experienced diabetic ketoacidosis when he was 13.
“The first time was terrifying,” said Adams, now 19 and a Sante Fe College freshman studying network infrastructure. “I woke up with absolutely no strength or energy.”
He was diagnosed with Type 1 diabetes in 2011.
Even with his father’s insurance, four vials of Humalog, a fast-acting brand of the drug, costs Adams about $225 to $250 a month.
Last month, Adams’ yearly insulin prescription expired without notice, for reasons he still doesn’t know, he said.
Until he gets more of it, he’s rationing his insulin, and eating less to keep his blood sugar lower as he staves off incredible hunger, constant thirst and shortness of breath.
“I’ve honestly just been trying to ignore the hunger by keeping myself busy,” Adams said.
“I’m not going to wake up one day and then not need insulin,” he said, adding, “It’s honestly kind of ridiculous that it costs so much for something people need for living.”
The Florida Diabetes Camp, which is based in Gainesville, relies on donations from pharmaceutical companies to offer its programs for youths with Type 1 diabetes. Every year, the camp receives insulin shipments that value roughly $800,000, enough to provide a week’s worth of doses for each child, according to its executive director, Gary Cornwell.
Stephanie Yedo, a former camper, said working as a volunteer counselor there has helped her to avoid paying for insulin for three years. Yedo, 23, a Santa Fe College junior majoring in special education, said she otherwise would have had to depend on her father to help pay for it. Previously, she spent almost $300 a month for the insulin she needs.
Meanwhile, Yedo is still paying off debt incurred from when she was in a hospital with DKA six years ago.
“My mom was also just diagnosed with Type 1 diabetes, and I think we would have been struggling if I don’t get insulin from camp,” she said.
Ashby Walker, a sociologist and director of health equity initiatives at UF’s Diabetes Institute, said that people are feeling a heightened sense of urgency about the cost of insulin.
“The stories that we’re hearing from our patients, our friends, our loved ones … are growing in number,” Walker said. “There’s a growing awareness that this is something we cannot ignore.”
During focus groups conducted by UF, adults with Type 1 diabetes often list the cost of insulin as a barrier to improving their overall health, she said.
“It’s really a social justice issue,” Walker said. “Whether or not I have Type 1 diabetes, or you have Type 1 diabetes, it has to be everybody’s issue collectively.”