“It just looked like she was a good eater,” says Keely Edgington, recalling her baby, Lula’s, big belly. But when Lula went for her nine-month checkup, the doctor saw it as a red flag. After some tests, Keely and her husband, Beau Williams, learned Lula had an advanced form of cancer called neuroblastoma, with a nine-centimeter tumor—the size of three strawberries—located on her left adrenal gland just above her kidney.
How to prepare for your kid's first hospital visit The couple, who run the Julep Cocktail Club bar in Kansas City, fell into a blur of doctor’s visits, chemotherapy, MRIs and other scans to track the tumor’s progress. “It was absolutely a shock to the system,” says Keely.
As small business owners, Keely and Beau have health insurance through the Affordable Care Act, but their deductible, or amount they had to pay out of pocket before their insurance plan would cover costs, was $13,000 in 2016, the year of Lula’s diagnosis. Since then, Lula has thrived, and now, two years later, she shows “no evidence of disease.”
Financially, though, her parents have spent about $30,000 on medical and related expenses, and Lula’s scans are set to continue for a few more years. “I stopped working and we were in and out of the hospital for about four months,” says Keely. “We still had to pay our bills, and every single meal had to be purchased for that time. It was absolutely ridiculous that there weren’t better resources, and it’s absolutely frustrating that our system is so far behind.”
Funding the journey
The family turned to medical crowdfunding to pay their expenses. The first year, they had a campaign on MedGift, an Atlanta-based crowdfunding platform, that raised $28,000. “We have an amazing community,” Keely says. “People were so generous and they just saved us.” The online campaign has raised more than $38,000 to date.
In Lula’s second year of treatment, which included ongoing MRIs and other scans to monitor the cancer’s retreat, as well as surgery to remove the majority of the tumor (due to its size and characteristics, the entire tumor could not be safely removed), the family raised $5,000. This year, they have raised $2,000, but their insurance deductible under the Affordable Care Act has risen to $14,000.
“People get ‘giving fatigue’ and I get ‘asking fatigue,’” says Keely. “But each time Lula needs her scans, it costs $29,000. We meet the deductible each year with the first scan.” The family foresees maxing out their deductible for the next three years as the scans continue, then “hopefully, life will go back to how it was before.”
The state of crowdfunding
More people like Keely and Beau are turning to crowdfunding websites to help raise money for expenses not covered by their health insurance plans. “With rising healthcare costs and widespread inadequate coverage, the burden of major medical expenses is falling more and more on the shoulders of individual Americans,” says Maly Ly, the chief marketing officer of YouCaring, a site that calls itself the leader in online fundraising. “Although many of those fundraising through YouCaring have medical insurance, significant medical hardship often leaves them unable to pay for high deductibles, continuing costs, special procedures or medically necessary travel.”
According to a 2017 Federal Reserve study, 44 percent of all Americans can’t afford $400 in an emergency, and 25 percent have skipped medical treatments in the past year due to cost. Ly says the personal crowdfunding industry has grown 50 percent every year since 2011. Crowdfunding campaigns related to medical issues have comprised about a third of all the money raised on GoFundMe, the world’s largest social-fundraising platform, according to the site’s CEO, Rob Solomon. Since its inception in 2010, GoFundMe has raised more than $5 billion through 50 million donors.
“Access to insurance is a huge issue, and many people are falling through the cracks,” says Solomon. It’s not just Americans, either. “Medical campaigns actually make up a larger percentage of active campaigns in our biggest markets outside the US, such as in Canada, Australia and the United Kingdom—all places with socialized healthcare.”
How to make a successful crowdfunding campaign
To have a successful campaign, it’s important to tell a great tale. “Most important is telling the story of what is happening in the child’s or family’s life,” says Solomon. “Providing background on medical treatment, and pictures and video is very powerful. He also advises funders on how the child is progressing in their healthcare journey.
“Fundraisers must be active, engaged and willing to put in time and effort,” says Ly. Fundraising pages should have a clear and realistic initial goal, along with a well-written description of the situation and a detailed explanation of how donations will be used to help.
Keely says a family friend established Lula’s initial MedGift campaign, which helped them immensely. “The first time around, it was hard to think of raising money when we were emotionally distraught. If you can, get someone else to do it for you.” Getting outside help also makes it more likely to be successful. According to Ly, fundraisers launched on behalf of others are 20 percent more effective than those launched by the recipient.
Once the campaign has been set up, share it with friends and family online to spread the word and encourage donations. People with extensive social networks are more likely to reach larger numbers of potential donors.
For Lula, it’s been a big help. “People’s generosity was surprising,” says Keely. “It’s easy to be jaded whenever you ask for help, but it was wonderful to see how many people shared or re-shared our story.”