Dan Walker was diagnosed with type 1 diabetes (T1D) as a teenager more than a decade ago in 2008. He sees plenty of people with diabetes (PWDs) having a difficulty time to afford the medications and supplies they need to survive.
The New York twenty-something knows he’s lucky to have a good paying job with insurance that allows him to afford these essentials.
That’s why he feels a responsibility to give back whenever he can. He donates money through GoFundMe campaigns, sends insulin pump and glucose monitoring supplies directly to people in need, and shares calls for help on social media.
Some might call it “mutual aid,” while others may refer to it as the simple act of helping out fellow PWDs who need it most.
Whatever one calls it, there’s a growing need for this peer-to-peer support and sharing that is now being filled by a black market for diabetes supplies.
For the first time, advocates are trying to morph grassroots efforts into established groups focused on providing mutual aid for diabetes.
“I’ve gotten a lot out of the community myself through emotional support and practical advice, and I feel a great satisfaction in — but also a responsibility to — do what I can to help others,” Walker tells DiabetesMine.
“Much can and must be done to improve the systems that are failing so many of us in terms of access to supplies and medical care, but in the immediate term mutual aid is an important way to help fill the gap.”
The idea of mutual aid networks certainly isn’t new. They have long been a tool for historically marginalized groups to join together in solidarity to support each other, Bloomberg reports.
Educator, abolitionist and organizer Mariame Kaba tells Bloomberg that tens of thousands of mutual aid networks and projects emerged around the world since the COVID-19 pandemic began.
Historically, one of the more memorable mutual aid network examples was the Black Panthers movement in the 1960s. The movement set up a free breakfast campaign to directly address malnourishment in Black communities. It was so successful, it eventually expanded to providing shoes, medical services, legal aid, and childhood education programs nationwide.
Similar efforts still exist because people believed that the powers-that-be aren’t helping as they should. So, people take it upon themselves to help each other out.
Mutual aid networks can focus on anything, really, from community fridges, to sharing information, to even particular skill sets like writing, policy review, data analysis, or website development.
In the D-Community, we hear of strangers meeting in empty parking lots or at local coffee houses to swap needed supplies. Many also donate to the hundreds of online crowdfunding campaigns created over the years for diabetes help, and GoFundMe even has a specific “diabetes financial assistance” page to guide people through setting up their requests.
With the persistent insulin pricing crisis in the United States, the number of PWDs in need surged in the past decade. So, these grassroots and black market exchanges ballooned, even though exchanging prescription items remains technically illegal in this country.
And yet, it’s not nearly enough. Social media connections and crowdfunding campaigns don’t generally do more than alleviate one family or individual’s needs for a short time.
Now, two new groups hope to do something about that, developing a more systematic approach for providing mutual aid in the D-Community.
Both began taking shape in 2020, with the COVID-19 pandemic exacerbating the community’s needs and challenges; many PWDs began losing jobs and health insurance.
One new effort to know about is a grassroots group calling itself Mutual Aid Diabetes, or MAD for short. Many people volunteering to coordinate and operate this nonprofit effort live with diabetes themselves and have ties to the #insulin4all group that advocates for insulin affordability.
Per the group’s website, “Mutual Aid Diabetes recognizes the inequity and injustices created and perpetuated by the systems we rely on to survive… We intentionally seek to create a platform for those in our community who have been systemically erased from the conversation around insulin and medication access, especially members of the diabetes community who are (but not limited to) Black, Indigenous, Latinx, type 2, LADA, MODY, type 3C, CFRD, fat, incarcerated, immigrant, un/under-documented, trans, and who have co-occuring disabilities.”
“MAD aims to create a leadership team that is reflective of our community, including those suffering from the insulin crisis, while acknowledging that those who have the resources to take on leadership positions have privileges and access to resources that the diabetes community as a whole often do not.”
In a Diabetes Connections podcast interview in March 2021, MAD leader and T1D Emily Miller from Philadelphia explained that their work is all community-based on a voluntary basis.
They share social media posts for fundraising campaigns, and help connect individuals who need help accessing insulin or can’t afford a doctor’s visit copay. While Miller says they don’t require documentation or proof of someone’s need, they do organically connect and do some “vetting” to determine the need and priority level.
“It takes a lot of strength and vulnerability to ask for help. So, if we can extend some grace and empathy toward everyone who’s out there asking for help, I know we’re going to see a lot of those requests,” Miller said in the podcast.
“We are here to help each other. What do we owe to each other? Hopefully it’s that community feeling, knowing that you are going to be caught if you fall, or if there’s a crack we are going to help fulfill that, and catch you when you’re at that low point.”
To learn more about MAD or get involved yourself, go here.
The other new group developing a mutual aid organization for the D-Community is called ReciprocAid. It’s based in San Jose, California, and limits its focus to that part of the country (at least for now).
A youth-led effort, ReciprocAid was established in summer 2020 after a group of students took a school project concept beyond the classroom. They worked under the mentorship of longtime T1D and healthcare design strategist Justus Harris. The students aimed to create an organization that could make diabetes supplies more accessible to people who couldn’t afford the high costs.
“Mutual aid works within the community, in solidarity,” Harris says. “It’s one of the tragedies of the medical system, that people often aren’t so concerned about how to use their medications correctly, but even just having them.”
While it’s still in the early development phases, ReciprocAid aims to create a support system through peer-to-peer supply exchanges, or even establish a legal clearinghouse for supply donations to community clinics. The hope is to work with local clinics on creating a legal framework for medication distribution, as well as providing information and resources as needed.
“One perspective we have is that it’s possible to work with existing organizations committed to serving people who may be in a gap in the healthcare system — such as community clinics, where there’s a type of building on an existing supply chain relationship,” Harris told DiabetesMine.
“There’s more structure there, than doing things exclusively through social media. Not to say it can’t work, but we’re really looking at how we can be geographically specific.”
Harris expects the team to develop a pilot in 2021 and become an official nonprofit org while working with others in the community already serving people. ReciprocAid is not exclusive to T1D but instead aims to help people with any form of diabetes who need the assistance most, he adds.
To ask for, or provide help, you can sign up with ReciprocAid here.
This is a tricky question and the answer may depend on a whole host of factors.
The way that a mutual aid effort works and where it operates are key concerns. Another concern is whether the group has a 501(c)(3) tax status, recognizing it as an official nonprofit organization.
People who study mutual aid efforts — particularly those relating to healthcare and involving prescription items, like insulin or diabetes supplies — say it often comes down to state laws and pharmacy boards, which dictate what’s allowed within a state.
Attorney Michael Haber is a clinical law professor at Hofstra University in New York. He’s a nationally recognized legal expert in mutual law. He says the federal government allows someone to authorize another person to pick up a prescription item for them. Still, pharmacists often need to use professional judgment in allowing that or not.
“I’ve recommended to mutual aid groups that they set up policies to provide some basic documentation to pharmacists,” he said, noting that a signed letter, email, or description of the mutual aid group can work. “Any documentation clarifying that the person who received the prescription for the medication allows the mutual aid group to pick up the prescription on their behalf can be helpful.”
But certain medications — such as those considered controlled substances or more highly regulated products like insulin — can be subject to stricter distribution laws. That complicates what mutual aid groups can do, he says.
Harris recognizes those state-specific regulations, which is why ReciprocAid focuses on one jurisdiction in the California Bay Area to start.
“(The legal concern) is significant and liability is real,” Harris notes.
Both MAD and ReciprocAid indicate that they work through these legal questions, but neither made any public statements yet on specifics.
Diabetes advocate Manny Hernandez lives with T1D himself. He co-founded TuDiabetes and the Diabetes Hands Foundation back in 2008, and was an early adviser to ReciprocAid.
“I was really drawn to this idea and I see a ton of potential,” he says.
Reflecting on his earlier years running the TuDiabetes forums, Hernandez recalls the frustration of dealing with the known exchange of diabetes supplies among members.
“If there was a post made on the public forums, by policy we’d have to take it down,” he says. “But I’m positive 1-to-1 exchanges took place, and it remained an unsolved problem then.”
Creating these new mutual aid efforts “is a step in the right direction, ultimately rooted in something that fundamentally needs to be solved,” he says. “These are societal inequities, things that are wrong at a systemic level.”
In Connecticut, Stephanie Nickerson has helped out with the new MAD group in recent months. She’s lived with T1D herself for 14 years. Even with good insurance covering most of her diabetes supplies, she’s turned to the community for help in the past.
Most of the time, she says she received help from fellow PWDs she knows personally to help cover short stretches of time between supply refills. And when she has any extra supplies on hand, Nickerson says she offers them to those who may be in a similar situation and need help.
“I absolutely feel like we need to pay it forward and help others,” she says. “Especially living in a county with for-profit healthcare, the burden can be a lot to bear on one’s own. This has also built a community of people who know and support each other however possible.”
That’s the same mantra Walker follows in New York, in paying it forward whenever he can. He says he feels fortunate to be in a position to help out at times.
“The extra supplies and funds I’m able to send to fellow people with diabetes can help ensure someone doesn’t have to ration, choose between other essentials and diabetes supplies, and in some cases literally be lifesaving,” he says.
“I am proud to be a part of such a supportive community and am very thankful to the organizers of MAD for providing this infrastructure for greater mutual aid dispersal.”