President Biden is touting the Inflation Reduction Act, which caps the out-of-pocket cost of Insulin for diabetic Medicare patients at $35 per month (MSN), as proof that his administration “won” against for-profit pharmaceutical companies (MSN). While major insulin manufacturers have recently instituted price cuts, a critical drug for diabetic patients has been in short supply. Ozempic, prescribed to lower insulin resistance, has been out of stock nationwide after people began taking it off-label to cause weight loss (MSN). And even with the price drops, U.S. insulin will remain several times more expensive than it is in other countries (HHS). Thanks to inequality and corporate greed, grassroots organizers are forced to fill in the gaps created by the healthcare industry of the world’s wealthiest nation. The ARD spoke with Emily Miller from Mutual Aid Diabetes, a group providing life-saving resources to keep community members safe and alive.
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Q: How did Mutual Aid Diabetes start?
During the early months of the pandemic, diabetics who had been doing informal mutual aid got together to make it a little bit more official. We started formalizing Mutual Aid Diabetes as a non-means-tested way of providing immediate support that doesn’t require people to apply for patient assistance programs or Medicaid when people need Insulin today.
My involvement in Mutual Aid Diabetes came about through trying to create the least hierarchical and most liberation-centered practice possible while acknowledging the fact that a lot of our peers who need support have been traumatized by the systems they’ve interacted with. We’re taking a different path so people don’t feel harmed or invalidated and feel supported and cared for instead.
Q: Why is this necessary?
The cost of Insulin and supplies in the United States is astronomical. Insulin for All activists pressured politicians by saying that the cost of Insulin is killing people. That pressure from activists onto politicians turned into pressure on these companies. All the major three insulin companies are now decreasing their prices of Insulin—and it’s still more expensive to get Insulin in the United States than anywhere else in the world. Insulin and diabetes supplies, test strips, syringes, and insulin pump supplies, are a cash cow for these companies because we will die without it. It’s pay or die. Most people will pay and put themselves into debt rather than take the risk of dying. So at least one in four people who are under or uninsured are rationing their Insulin or supplies to stay alive. I spend at least two or three days a month on the phone fighting with insurance companies, medical supply companies, and pharmacies to get access to the things I need.
Q: What are the consequences of inadequate access to medical supplies?
Straight up, people die. Probably the most well-known example is Alex Smith, a diabetic in Minnesota who died a couple of weeks after his 26th birthday. He no longer had access to insurance, though he was about to qualify for insurance through a new job. He was rationing his Insulin, and he died. If you don’t die from rationing your Insulin, you are probably going to have significant complications later on in life, like vision loss, neuropathy, or limb loss. People starve themselves because they don’t have enough Insulin to eat, so disordered eating happens.
There’s also just the trauma of knowing you don’t have what It needs to survive for the next couple of days or weeks because a system is profiting off of you. This is ongoing trauma that can create mental health impacts like PTSD, depression, and anxiety.
Q: How has the misuse of ozempic affected issues of access?
Ozempic is prescribed for Type II diabetes to reduce insulin resistance, allowing your body to use Insulin more effectively. Because celebrities and people who are able to pay for it can often find doctors to prescribe it off-label for weight loss, we’re seeing a significant shortage, so diabetics who need it are not able to obtain it.
I identify as a fat diabetic. As a fat person, I use more Insulin. When we leave fat diabetics out of the conversation around the misuse of Ozempic, we aren’t talking about the people with the greatest need for these medicines. When we leave lower-income and underinsured diabetics out of the conversation, we aren’t talking about the people with the least access.
Q: What’s the solution?
We at Mutual Aid Diabetes pride ourselves on allowing the community member who’s requesting aid to know what is best for them. So if you say, “I need money,” we’re going to work to get you that money. If you want us to boost your GoFundMe or need peer support so you can get access to insulin supplies, we’ll get you the support you need. To support Mutual Aid Diabetes, volunteer with us, donate, or make recurring donations on Patreon.
We need universal access to basic health care. Frederick Banting, the guy who discovered Insulin, sold the patent for Insulin for $1 because he wanted Insulin to be accessed by anyone who needed it. People just need access to life-saving medication, without means-testing, without checking insurance, without all the hurdles and barriers that we have to jump through.