When Rena Rossi, 41, was diagnosed with a rare type of diabetes at age 36, one of the first things she did was find other people with the disease. The easiest way to do this was through social media and online diabetes groups.
The groups he joined and the accounts he followed had what one might expect: information about different equipment and medications and posts about hard days and triumphs.
But something else surprised her: thousands of posts calling for the arsenal of supplies people with diabetes need to stay alive.
Right away, Rossi said, he knew he would help when he could.
“I knew I was going to share when I saw a need. That’s how community works,” said Rossi, a teacher in Rhode Island.
And share did.
«I’m at the point now where I’ve gotten messages on Instagram from people I’ve never heard of because people know I know people who have stuff,» she said.
With nowhere else to turn, 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, are for 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 sent it to friends in Colorado, Florida and Seattle and I sent it to people I didn’t know,” he said. He usually hides it between packages of applesauce.
Insulin can be expensive even for people with insurance
It’s illegal for people who aren’t prescribing doctors to give someone else medical supplies or prescription drugs in the US, but daunting barriers to accessibility have led to a thriving underground trade in diabetes supplies.
In 2021, 1 in 5 adults who use insulin reported that they rationed their supplies (skipping, delaying, or using less than needed) to save money. Even with insurance, people with diabetes can have high copays for insulin.
The Inflation Reduction Act took steps to reduce those costs, capping the monthly out-of-pocket cost of insulin to $35 per month, but the provision applies only to people with Medicare, leaving millions behind.
In his State of the Union address Tuesday, President Joe Biden called for extending that cap to everyone.
“There are millions of other Americans who don’t have or don’t have Medicare, including 200,000 young people with type 1 diabetes who need this insulin to stay alive,” Biden said.
“Insulin is not the type of medication that you can go two or three days without. People have to get insulin somehow,” said Dr. Laura Nally, a pediatric endocrinologist at Yale Medicine who is researching how people cope with difficult access to insulin.
But insulin isn’t the only financial burden for someone with diabetes. Glucose monitors, glucose strips or sensors, and insulin pumps are needed to track blood sugar levels and automatically deliver small doses of insulin. The equipment can cost thousands of dollars each year.
“If someone has type 2 diabetes, on top of that, they can have pills,” said Michelle Litchman, medical director of the Intensive Diabetes Education and Support Program at the University of Utah in Salt Lake City. «People can’t take care of themselves.»
It is not clear how widespread the diabetes trade is; Rossi estimated that there are thousands of people involved.
There isn’t much in the way of research either.
Litchman led one of the only studies on the subject. He study, published in 2019 in the Journal of Diabetes Science and Technology, surveyed about 160 people who had exchanged diabetes supplies. Nearly 60% had donated supplies at some point, and nearly 40% had received supplies from other community members.
“One of the things that surprised me the most is that people who were insured were also doing this,” he said. «Insurance doesn’t necessarily protect you from having to engage in this type of activity, because even with insurance, the copays can be outrageous and add up.»
In the event that someone runs out of insulin before a new prescription is due, getting more medication can be extremely expensive and difficult to access.
Read more about insulin costs in the US.
Nally, who has had type 1 diabetes since childhood, said “every year for about a month, I have to contact insurance and durable medical equipment companies over and over again to get my supplies.”
Insurance typically covers only a 30-day supply of sensors for continuous glucose monitors, which automatically check blood sugar levels, leaving people without vital equipment if the sensors are damaged. “If you have an insulin pump that communicates with your continuous glucose monitors, you can’t use that either. It’s a huge safety risk for patients,» Nally said.
Or the insurance may cover only part of the equipment needed for a particular piece of technology.
While still on his parents’ insurance, Erik Douds, 31, who was diagnosed with type 1 diabetes as a teenager, had a prescription for a continuous glucose monitor made by a company called Dexcom, one of the leading providers in The U.S. Its insurance would approve one part of the instrument, the sensors that attach to the body and read a person’s blood sugar level every few minutes, but not the transmitter, which transmits that information to the phone or screen. insulin pump of a person.
“I had boxes and boxes of sensors, but I couldn’t use them without the transmitter. That was the first time this started,” Douds said. «I needed a solution for this and I didn’t know where to find it.»
America’s Health Insurance Plans, or AHIP, a trade group that represents insurance companies, did not respond to a request for comment from NBC News.
Douds learned about the supply trade while living in New York City, after joining an online MeetUp group for people with diabetes.
She first connected to the network in 2017 when she was cycling across the US. Because insurance coverage changes by state, she often ran out of the diabetic supplies she needed. Douds remembers meeting someone he met online, a prominent diabetes blogger, in a California parking lot to get transmitters for his glucose monitor.
Right now, it’s easier for me to get medicine from the diabetes community than it is to figure out America’s insurance system.
“Asking for help saves lives in our community,” said Douds, who was traveling to India in March 2020 when the pandemic travel restrictions were imposed. He decided not to go. The decision was partly because it was easier for him to access insulin in India than in the US. estimated average spot price of a single vial of insulin in the US according to the Rand Corporation, a public policy think tank. Insulin prices vary by manufacturer and type, so prices can be hundreds of dollars per vial for cash-paying patients.
Upon returning to the US, Douds began working as a full-time freelance videographer in Denver. For nearly two years, he has struggled to find affordable health insurance because he has no health benefits through work.
“Right now, it’s easier for me to get medicine from the diabetes community than it is to figure out America’s insurance system,” he said.
People use cryptic messages and hashtags to trade on social media
Annalisa van den Bergh, 31, of New York City, first made her way into the diabetes community at age 20, through the same MeetUp group as Douds. She has always been insured and said that the times she has used the commercial community is not because of the cost of the supplies, but because her insurance would not cover replacements if her equipment was damaged or malfunctioned.
“I have given and received Dexcom sensors and insulin vials and have sent vials and pens to people in states across the country,” he said, noting that most posts requesting supplies are for Dexcom insulin or supplies and occasionally for Dexcom supplies. popular insulin pump. Omnipod brand.
Assistance programs or coupons are available for some of the equipment of both brands, although these discounts are limited to people who earn less than a certain income.
Van den Bergh said Facebook groups are a great way to trade, but she prefers to post on Instagram and Twitter, using cryptic messages and specific hashtags that people in the community know to look for. Posts are usually republished and disseminated internationally. She has always been able to get what she needs.
“The diabetes mutual aid community is more trusted than any insurance or doctor I have ever had,” he said. “We literally keep each other alive.”