When Rena Rossi 41 was diagnosed with a rare form of diabetes at age 36. the first thing she did was find other people living with the illness. The easiest way to do this was through social media and online groups dedicated to diabetes.
What one might expect from the groups he joined. and the accounts he followed: information about various tools and drugs. and posts about tough days and triumphs.But something else surprised him: thousands of posts.
asking for an arsenal of survival supplies for diabetics.Right away, Rossi said, she knew she’d help when she could.“I knew I was going to share when I saw a need. That’s how the community works,” said Rossi, a Rhode Island teacher.And share what she does.
Without looking elsewhere, online communities dedicated to people living. with diabetes often become platforms where those who need insulin. and other diabetes supplies can connect with those who have more.
Sometimes, used equipment — such as insulin pumps and glucose monitors — is on sale at deeply discounted prices. Other times, people like Rossi have extra insulin that they will donate to people who can’t access it.
“I’ve sent it to friends in Colorado, Florida and Seattle and to people I don’t know,” he said. He usually hides it in a packet of applesauce.It is illegal in the United States for anyone who is not a doctor to give prescription medical supplies or drugs. but the huge barrier to accessibility has led. to a thriving underground trade in diabetes supplies.
In 2021, 1 in 5 adults who use insulin reported rationing their supply — skipping, delaying or using less than needed — to save money. Even with insurance, diabetics can have steep copays for insulin.
In his State of the Union address on Tuesday, President Joe Biden called for extending that cap to everyone.
“There are millions of other Americans who don’t or don’t have Medicare, including 200,000 young people. wth type 1 diabetes who need this insulin to survive,” Biden said.
“Insulin is not a drug that you can go without for two to three days,” says Dr. Laura Nally. A pediatric endocrinologist at Yale Medicine who. Is researching how people cope with difficult access to insulin.
But insulin is not the only financial burden for a person with diabetesTo track blood sugar levels and automatically deliver small doses of insulin. Equipment can cost thousands of dollars per year.
“If someone has type 2 diabetes, they may be on the pill,” says Michelle Leachman. Medical director of the Intensive Diabetes Education and Support Program at the University of Utah. In Salt Lake City
Not much through research either.Leachman led the only research on this topic. The study, published in 2019 in the Journal of Diabetes Science and Technology, surveyed. About 160 people who traded in diabetes supplies. About 60% donated supplies at some point. And about 40% received supplies from others in the community.
“Insurance doesn’t necessarily protect you from engagingBe very expensive and difficult to access.
Nally, who has had type 1 diabetes since childhood, said that “for about a month every year. I have to go back and forth with insurance and durable medical equipment companies to get my supplies.”
Insurance typically provides only a 30-day supply of sensors for continuous glucose monitors. Which automatically check blood sugar levels. Leaving people without critical equipment if the sensors are damaged.
“If you have an insulin pump that talks to your continuous glucose monitor, you can’t use that either. That’s a huge safety risk for patients,” says Nally.
Or insurance may cover a piece of equipment required for a specific piece of technology.
While he was still on his parents’ insurance, Eric Doods, 31, who had type 1 diabetes as a teenager
