Claire Rogers is a 23-year-old digital marketing specialist who has type 1 diabetes. She was diagnosed in 2014 and takes long-acting insulin to manage her diabetes. In October, Rogers turned to a Facebook support group for others with type 1 diabetes to vent about the cost of her medication and how much of a financial burden it was.
She told them she wouldn’t be able to afford any more until her next payday. Members of the group reached out for her contact information to donate some of their insulin and within two weeks Rogers had enough insulin to last her for more than a year.
The cost of insulin has skyrocketed, leading some to “spread out” their insulin to cover them for as long as possible — a dangerous practice that has killed people. According to the American Diabetes Association, around 25 percent of patients don’t take their insulin as prescribed because of costs.
“As I got each delivery, I felt so grateful and couldn’t help but get emotional,” Rogers told The Mighty. “The last package had the most insulin and was filled with over a year’s worth of long-acting on its own. I truly can’t explain how special it was to experience what I did, and I can’t tell you how much it will help me over the next year financially.”
While Rogers’ story shows the strength and willingness of the diabetes community to help one of their own, turning to the internet for medical supplies or money to pay for care doesn’t work for everyone. Even when it does work, it’s not a sustainable solution.
Simply put, the cost of medical care in this country is too steep. The U.S. spends about twice as much on medical care than other higher-income countries. While we spend more, we have one of the lowest life expectancies and the highest infant mortality rates compared to other countries of similar economic status. We spend more because our drugs, treatments and tests are more expensive.
When we tout successful crowdfunding campaigns as “heartwarming” acts of kindness, we miss the reality of the situation. That crowdfunding is seen as an acceptable way to make up for private insurance and government-subsidized health care’s failures. Relying on GoFundMe, other crowdfunding sites or the sheer goodwill of others is not sustainable, nor should it be the norm for Americans simply trying to pay for health care.
For Sasha Kochurova, 23, and her family, a GoFundMe campaign was needed to pay for her mother’s stage 4 breast cancer treatment. Since her mother lives in a small Arkansas town with limited cancer treatment resources, the family needed to travel to MD Anderson in Houston, Texas to receive care.
GoFundMe says it’s the “leader in online medical fundraising.” More than a third of campaigns on its site go toward medical costs. People crowdfund for many health reasons — cancer treatments being the top cause.
“I knew from the very beginning of her diagnosis that we’d have to set up a GoFundMe,” Kochurova told The Mighty. “I distinctly remember talking on the phone with her about her bills from the biopsies and doctor visits and we were talking about paying for them. She said, ‘We’ll figure it out because like how do other people pay for their medical stuff?’ and I replied, ‘They don’t. They max out their credit cards and crowdfund.”
The average amount each medical campaign on GoFundMe raises is $2,600, according to data on its website. The average payout is a drop in the bucket compared to how much it costs to live with an illness or disability. The cost of chemotherapy varies greatly depending on the type and stage of cancer. For a marketplace plan under the Affordable Care Act, out-of-pocket maximums are capped at $7,350 for an individual plan. Family plan maximums are double that, and the maximums only apply to services and treatments the plan covers.
Kochurova’s mom’s first mammogram was free because insurance covers yearly mammograms for healthy individuals. The second one she needed after the first came back with abnormalities wasn’t. It’s an extra burden no one should have to carry, Kochurova said, adding:
Should I go figure out if I have breast cancer or, like, buy groceries for the month? That’s screwed up. That is now how the system should work. You should be able to be proactive about your health and well being. You shouldn’t sit out on therapy just because you can’t afford it. You shouldn’t have to not wear glasses just because you don’t have vision insurance through your work. You shouldn’t have to pick between a mediocre hospital and best healthcare professionals based on coverage. You shouldn’t skip important medication dosages because you can’t afford it this month. That is not okay.
Donations rarely outpace the costs of treatments, missed work, childcare and the other expenses that add up when you’re too ill to work. Most people who donate, donate once. It’s enough to make someone feel like they’ve made a difference — I did when I donated $200 to my friend, Kochurova’s, GoFundMe Page.
That “good feeling” of helping someone can blind us into thinking we’re making a substantial difference. While this may be true in some circumstances, one donation to one person doesn’t fix how expensive it is to be ill or disabled in the U.S. Crowdfunding doesn’t strengthen our health care system, it normalizes exorbitant bills.
Kochurova’s mother was able to take her first round of donations, which totaled about $5,000, to travel to Houston, begin her treatment as well as pay past medical bills.
Without the donations, Kochurova said she’d probably have to max out her credit cards, and paying for necessities like the house and car would have been nearly impossible. The donations have bought them time, but in 2019, when Kochurova’s mother’s out-of-pocket maximum resets, they’ll face new bills they’ll have to juggle on top of old bills, the cost of traveling out of state, taking time off work and other expenses.
Sure, GoFundMe allows us to feel like we’re making a difference. But the money we cobble together is rarely enough to cover everything a person needs. Donations should be there to help us in our times of need, not the safety net we rely on to receive life-saving care.