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From May 2021 onwards, Rebecca Dotson overcame type 2 diabetes with the help of mutual aid. Without the right resources (monitoring equipment, insulin, and other medications), poorly managed diabetes can be fatal. It can also lead to complications, including expensive hospitalizations and amputations. In the U.S., insulin is on average 7-10 times more expensive than abroad, and for the uninsured and underinsured, the consequences can be dire.
A few months after she was first diagnosed, Dotson, a former nurse, A group called Mutual Diabetes Aid distributes funds, insulin pens and other supplies to people in need across the U.S., including Dotson, who currently receives insulin and funds to cover her insurance copays about twice a month from the organization.
Dotson, who lives in Pennsylvania, is battling advanced osteosarcoma and suffers from excruciating pain, but knowing there’s a place to help her manage her diabetes has lightened her burden some, if not entirely.
“My diabetes medications are some of the most expensive and sometimes difficult to obtain,” Dotson said.
It’s estimated that one in six Americans who use insulin are skimping on their insulin because of cost, which could lead to death.
Mutual Aid Diabetes (MAD) is entirely volunteer-run and was born out of a desire by people with diabetes to help others in their community (about 40 million people in the U.S. have some form of diabetes) survive until the next day when insulin and other diabetes medications and supplies were unavailable. Unlike many patient-centered groups, they do not receive funding from pharmaceutical companies.
An estimated one in six Americans who use insulin skimp on it because of cost, which can sometimes lead to death. Research shows insulin skimping is more common among black, middle-income, underinsured and uninsured people. Allie Marotta, one of MAD’s co-founders, knows what it’s like. When Marotta, who lives in New York, was 26, she was dropped from her parents’ health insurance. Marotta was an independent contractor working in theater and didn’t receive health insurance through her job.
“I was uninsured at one point and was skimping on insulin,” Marotta said, “and was taking donations from the black market for my own use.”
Marotta then began helping others get needed supplies through donations via direct messages on X/Twitter. Marotta and others wanted to make the process of soliciting donations more accessible, so they created MAD.
An important part of MAD’s work is engaging the diabetic community. The group has community partners, as well as donors of insulin and other supplies. MAD connects them with people with diabetes, donates insulin and other supplies, and sends them directly to diabetics who need help, while distributing funds directly to diabetics who need them as quickly as possible. This model is primarily diabetics helping diabetics, which fits in with the disability rights motto. You can’t say anything about us without saying usBoth sides of the process involve people with the disease.
MAD has seen an increase in requests for both insulin and continuous glucose monitoring devices, which cost between $100 and $300 per month. In April of this year, MAD received 52 request forms for assistance (which allow people to request multiple supplies at once), up from seven in April 2021.
Marotta says MAD wants to make the check-in process as stress-free as possible, because by the time patients reach out for help, they’re often in a crisis. Diabetics in need fill out a simple form, and volunteers text or email them to help them get their medication, either directly or through their insurance if possible. There’s a wait of at least 48 hours, though, and it’s not a substitute for emergency care.
“If you need direct medical care, we always encourage people to go to the emergency room,” Marotta said.
That happens often. Misconceptions The belief that people with type 2 diabetes do not need or benefit from using insulin, even though type 2 diabetes often begins with insulin resistance. According to the MAD manifesto, fatphobia, anti-Black racism, and classism often contribute to this belief.
Fatphobia also impacts the medical experience for people like Dotson, who put off seeing an endocrinologist for that reason: “I was scared that they would say it was my fault because I was fat,” she says.
Some pharmaceutical companies have implemented low-cost insulin programs, but most of these programs are limited to people with type 1 diabetes and do not cover people with type 2 diabetes or other forms of diabetes, such as cystic fibrosis-related diabetes or latent autoimmune diabetes.
Donating is not only a “cool moment of mutual aid; Building relationships with fellow diabetes patients for a moment.”
“Almost all manufacturer patient assistance programs require you to have type 1 diabetes,” Marotta said, “sometimes described as insulin-dependent diabetes, which creates a loophole for people with type 2 diabetes.”
Big Pharma isn’t the only one making questionable policy decisions regarding diabetes care. “Insurance companies have similar clauses that don’t cover continuous glucose monitors (which Type II diabetics also need) unless you have Type I diabetes,” Marotta says. “The requirement to test your blood glucose instead of a continuous glucose monitor is pretty outdated.”
The United States has taken steps to make insulin more affordable through the Inflation Control Act, which caps the monthly cost of insulin for Medicare members at $35. But some insulin and other supplies, such as injectable insulin that is not used in traditional insulin pumps, are only covered by Medicare Part D, meaning patients must pay more.
Earlier this year, Dora Mendelson recently switched to a new insulin pump. When she saw a social media post from MAD about people looking for their old pumps, she immediately decided to redistribute her own. She then joined MAD as a volunteer.
“The people that I actually sent the supplies to wrote me letters expressing their gratitude and saying it really was a lifesaver,” Mendelson said. “Not only was it a wonderful moment of mutual aid, Building relationships with fellow diabetes patients for a moment.”
Mendelson, who lives in Washington, D.C., said she was attracted to mutual aid because of the challenges she faced while seeking treatment as a graduate student in Canada, including long wait times to see a specialist and being forced to switch pumps.
Sally Carmona learned about MAD through a disability activist and saw the group highlighting a GoFundMe campaign for diabetics trying to leave Gaza to get insulin and other diabetes supplies, and raising awareness on social media about the challenges people with diabetes face. of Guardian As reported in February, aid trucks loaded with insulin have been entering Gaza, but Doctors Without Borders’ medical coordinator for the region said, “Because of the airstrikes, patients are unable to reach the insulin stores.”
“As someone who has enjoyed the privilege of having good health insurance my whole life, I need to do all I can to help those who haven’t had access to the care they need for diabetes and to ensure access to health care for everyone,” Carmona said.
