The pros and cons of crowdfunding for cancer care.
First comes the life-changing diagnosis: cancer. Then comes phase two. After absorbing the news and taking a crash course in cancer treatment, patients and families face another major hurdle: the cost of treatment and how it may harm their financial well-being.
Miguel Perez, vice president of mission and brand for Pelotonia, recalls the sheer volume of bills his late sister received when she was dealing with breast cancer. “I remember thinking, with everything else she has to deal with … how can the amount of these bills even be real? I called it ‘funny money.' ”
To help defray the high costs of cancer treatment, many patients and their families are turning to crowdfunding, using online platforms to solicit donations and support in their journey through a major illness. One of the largest crowdfunding platforms, GoFundMe, began in 2010 and has raised about $5 billion through 50 million donors, according to its website. Medical causes make up a significant share of the crowdfunding efforts. Donations to individual cancer patients ranged from $766 to more than $1 million, according to the site.
Crowdfunding platforms like GoFundMe and CrowdRise promise users they can set up a campaign site in less than 60 seconds. Online giving, they say, is efficient, secure and goes directly to the people asking for the money.
Some crowdfunding operations charge a fee ranging from about 3 to 8 percent of each donation; others have goal requirements. GoFundMe gives donors the option of adding a “tip” to their donation to help keep the platform running.
Those in the cancer community generally applaud crowdfunding efforts, not only as a way to raise much-needed funds but to foster a sense of community and support during a difficult time. They also point to some pitfalls: the loss of privacy, no third party to vet the requests and a concern about crowdfunding becoming a popularity contest that may benefit those already at an advantage.
Pelotonia's Perez saw the positive effects firsthand when a good friend—a single mother earning an hourly wage—used crowdfunding after she was diagnosed with cancer. “She didn't want to do it. Her dad set it up, and within a couple days, they had raised $13,000,” Perez recalls. “She was just baffled. She said, ‘I didn't realize people cared about me that much.' ”
Perez says the effort “brought a lot of comfort and a sense of community. She would post updates and get feedback. … I do believe it changed the outcome of her entire year.”
Beyond the Casserole
Bev Soult, president and CEO of the Cancer Support Community's central Ohio office, says crowdfunding appeals to people's innate desire to be helpful. “Many of us feel, ‘What can we do besides take a casserole?' Crowd-funding is a way to feel like I'm doing something tangible.”
Those engaged in crowdfunding also experience the “bandwagon effect,” says Debbie Beyer, director of development and marketing for the group. “It's like the Ice Bucket Challenge. Everyone wants to be part of riding the wave.”
In addition, Soult says, “It opens the door to more support and conversation. It gives you a sense of empowerment. That itself is life-changing and a positive thing.”
Even with insurance, the costs of cancer care can run in to the tens of thousands of dollars annually. A course of radiation treatment alone can cost between $10,000 and $50,000, says Dr. Praveen Dubey, vice president and medical director of cancer services at OhioHealth.
Add to that the indirect costs—loss of income, travel, hotel stays and care giving—and it's no wonder that a cancer diagnosis can take an enormous financial toll. “Your entire savings may be at risk,” Dubey says. “It's very, very anxiety-provoking.” The Cancer Support Community's research institute examined the “financial toxicities” of the disease and found that patients experienced “clinically significant” levels of anxiety over cost.
The 2017 Cancer Experience Registry report contains insights into the far-reaching effects of living with cancer, from a survey of nearly 2,800 of the registry's 12,000 members. Among those surveyed, some reported having to deplete savings, borrow against retirement plans, liquidate assets and foreclose on their homes. Others reported postponing appointments and weighing less effective but cheaper treatment options.
And The Fred Hutchinson Cancer Research Center in Seattle found that people with cancer are more than twice as likely to file for bankruptcy as people without the disease. Organizations like the Cancer Support Community and the American Cancer Society can help patients and families defray some of the costs associated with cancer care through free or reduced-rate hotel rooms, assistance with utility payments or paying for groceries, for example.
The Cancer Support Community itself does not fund individuals but links them with helpful resources. Soult says even with assistance, the dollars may not be enough. “We endorse whatever people need to do to bridge that gap.”
“We encourage and applaud [individual crowdfunding] campaigns,” says Ben Kaplan, senior director of digital products at the American Cancer Society. “We view it as supplemental.”
Kaplan says the cancer society doesn't view crowdfunding as a distraction from the larger fundraising organizations. In fact, the ACS works with platforms such as GoFundMe and CrowdRise, and some individual sites may contain an option to donate to the society as well.
Most people who contribute to crowdfunding campaigns have at least a distant link to the recipient. Still, Soult and others advise potential donors to do their homework before hitting the “donate” button. “You do have to be cautious about who is on the other end of the ask,” Perez says.
A Level Playing Field?
Some medical ethicists have expressed concern that crowdfunding may not level the playing field when it comes to access to health care. In an article published in the Hastings Center Report, Jeremy Snyder, associate professor in the Faculty of Health Sciences at Simon Fraser University in British Columbia, considered whether people with more “popular” diseases, and who are more adept at using social media, may have an edge.
Other factors, such as the recipient's physical appearance, online communication skills and social connections, also might skew the ability to fundraise, the article said. “You do have to have a certain wherewithal to engage in an activity like crowdfunding,” Dubey says. “You need to have some resources to even get in the game.”
Dubey says he is keenly aware of the financial implications of treatment when he counsels patients. “I do have that discussion with people. I want them to understand what they're getting into beforehand. If I am proposing a treatment, I don't want to unwittingly hurt them financially.”
The Cancer Support Network survey found that many patients had not discussed costs with their care teams. That may change, Dubey says, as more practices include financial counselors as an integral part of the care team at the early stages of treatment planning. “We think [costs] should be on table before the fact rather than after the fact.”
With the number of crowdfunding campaigns growing daily, might potential donors experience “charity fatigue”? Perez hopes not. “I'm forever an optimist. I think there's room in this world for all of us to seek help. We have to use the tools we have to survive.”
Laurie Allen is a freelance writer.