Failing to achieve a GoFundMe goal can be a death sentence for diabetics.
MISSISSIPPI, USA — GoFundMe began as a place to support social and similar causes, but now families battling diabetes are using the fundraising platform as a last-ditch attempt to cover the skyrocketing price of their life-saving drugs and supplies.
“My mom needs insulin to live,” Zoë Massery of Ward, Arkansas, pleaded in her fundraiser. “I don’t know what I would do without my mom. I am 16 years old and still need my mother. I see the stress that my mom and other people have of wondering if they are going to be able to get the stuff they need to live along with tons and tons of other bills.”
Her mother, Courtney, is one of more than 9 million Americans dependent on insulin in the United States. Deep South states like Arkansas, Mississippi, Alabama and Louisiana have some of the highest diabetes rates in the country. The Massery family is among the many desperate to find funds somewhere to cover the costs of drugs and supplies that keep them alive.
There are approximately 3,728 campaigns still present on GoFundMe that mention both “insulin” and “diabetes.” Almost 1,000 GoFundMe accounts mention insulin pumps. Even after insurance, some campaigners reported that they needed $7,500 out of pocket for their insulin pumps. Monthly sensors for glucose monitors can cost around $250. Others express urgency to raise funds for their monthly supply of insulin, which for some costs $1,600.
Crowdfunding, which raises small amounts of money from a large number of people, occurs predominantly through posting social media and online platforms like GoFundMe.
Zoë Massery created a GoFundMe campaign on Feb.11 titled, “Help our mom with her diabetic supplies.” The teen had witnessed insulin prices fluctuating throughout different presidencies, as well as sacrifices her family made to afford it. Her frustration motivated her to surprise her mother, Courtney Massery, with a fundraiser to alleviate costs.
Courtney Massery was diagnosed with Type 1 diabetes in 1985, when she was a year old. Her pancreas ceased producing insulin, a hormone instrumental for regulating blood glucose levels. Massery, now 38, said pharmaceutical companies continue “gouging” insulin prices to where diabetics can’t afford it.
However, Massery’s feelings were mixed after learning of her daughter’s project.
“I appreciated her trying to help me,” Courtney Massery said. “I hate that my 16-year-old even has to think about doing something like that because it has become so hard for us to live paycheck to paycheck. And I have a choice: Do I get my insulin pump, or do I get food and groceries? Everything just costs way too much.”
When Zoë Massery started the GoFundMe page, her mother was paying between $140 and $170 for her monthly insulin. This price does not include other monthly diabetic costs, such as blood glucose monitors, censors and insulin pumps. Courtney Massery said there was a time where she paid $20 for insulin, but she hasn’t seen a price that low since 2013.
Courtney Massery said the most that she spent on her monthly insulin was in 2019. She had three insurance plans, but still paid $1,300 out-of-pocket. That is about $300 more than the average American family pays for a mortgage. In fact, even with her husband’s income and her disability checks, the family had to choose between Courtney’s medicine and their house. The Masserys’ church stepped in to help with mortgage payments during this period.
Massery said the price pharmaceutical companies charge, as well her insurance coverage, changes yearly. She described the “teeth-pulling” process of getting these companies to cooperate and communicate with her pharmacy. There were times in 2020 where the mother of two resorted to eating less and rationing her insulin so she could buy groceries.
“Big Pharma I can’t stand,” Courtney Massery said. “And I hope they’re standing in front of God and I’m right behind them and I’m watching them all go to Hell. And I’m a Christian. I don’t understand anyone who is a Christian and can justify it and sleep at night.”
GoFundMe and Fickle Funding
Zoë Massery listed $2,000 as her campaign goal and challenged 600 people to donate $5. After six months, her GoFundMe campaign did not receive any money. Failing to achieve a GoFundMe goal can be a death sentence for diabetics.
In March 2017, Shane Patrick Boyle’s death sparked headlines after he fell $50 short of his $750 goal for insulin. Boyle moved from Texas to Mena, Arkansas, to take care of his ailing mother. This move across state lines disrupted his prescription benefits. He succumbed to diabetic ketoacidosis while rationing his last vial of insulin, which made his blood acidic.
Even if diabetic patients reach their goal, some realize they cannot access the funds. Grady Moffett, 41, of Mobile, Alabama, began a GoFundMe called “Health and Diabetes.” Diagnosed with Type 1 diabetes, he started a campaign for his one-month supply of insulin after unexpectedly losing his Medicaid benefits. Once Moffett’s campaign received $117 of his $200 goal, he discovered other obstacles.
“I’m in dire need of hope,” he said. “I haven’t even been able to withdraw the money off of my GoFundMe account because I don’t have a bank account or debit card or credit card to put on the account.”
His disability benefits restrict his assets. However, he is allowed to have a Cash App. He registered his Cash App as $SlimGrady41 because he is a fan of Eminem and is a reference to the rapper’s song “The Real Slim Shady.” When GoFundMe denied his Cash App card, Moffett turned to Mutual Aid Diabetes for help.
MAD Money and Donor Burnout
Mutual Aid Diabetes is a community-led, grassroots organization that connects people with diabetes internationally through the internet. The group began formally taking diabetic, mutual aid requests on March 22, 2021.
“MAD doesn’t want to exist, but we exist because we have to,” Emily Miller, a MAD leadership team member, said. “Unfortunately, we’re doing the labor that [pharmaceutical] companies and [nonprofit] organizations are refusing to do by providing material support by way of peer support, nonprescription sharing and outreach to the community.”
MAD has over 1,600 followers on Twitter and over 2,100 followers on Instagram. The group also boosts Cash Apps and Venmo accounts, as well as GoFundMe campaigns, for people with diabetes who need immediate funding.
As of Aug. 11, MAD has accepted 114 mutual aid requests. Forty-nine of these requests asked for help obtaining insulin, and 57 asked for help obtaining insulin supplies. Furthermore, 43% of these requests had to be filled through peer…
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