THE KINDNESS OF STRANGERS
Patients battling rare or aggressive diseases are turning to crowdfunding campaigns to cover the cost of experimental, often expensive, out-of-province treatments. Charlie Fidelman examines the growing phenomenon.
“HelpSaveMatthew because even a hero sometimes needs help.”
That was one of several heartfelt pleas in an emotional crowdfunding video created for Matthew Schreindorfer, 27, who died last week after months in a Montreal hospital battling a rare and aggressive blood cancer. He had hoped to get well enough to use the money to cover travel and medical expenses for an experimental anti-cancer clinical trial in the United States.
Now suspended, his latest crowdfunding page had raised a total of $379,257, more than halfway to its $700,000 goal. (The accumulated funds in Schreindorfer’s account will be shared between research and patients, his wife Katia Luciani said in a Facebook post following his passing.)
A first HelpSaveMatthew campaign brought in nearly a million dollars in just a few weeks. An earlier clinical trial was successful, but Schreindorfer’s cancer came back. Fundraising continued until his dying breath: the weekend Schreindorfer died, a Montreal restaurant held a charity spaghetti dinner for him.
As news of his death spread last Monday, a barrage of comments flooded onto his widely shared Facebook page. Thousands of people he had never met mourned and offered condolences on the loss of a hero, a friend, a son and a husband.
Crowdfunding — online solicitation from strangers asking for donations, no matter how small — has become ubiquitous. Several new funds appear daily for personal projects, business ventures, art exhibits, scientific research and nonprofit causes. From weddings and vacations to saving animals and orphans, crowdfunding is a growing phenomenon worth billions of dollars. And it is an opportunity for ailing patients, who can often leverage the emotion of a good story.
But should you go online to fund your own health care? On one hand, it might present a viable alternative in places like the United States where health coverage is far from universal, and people have gone bankrupt paying for medical care. On the other hand, some critics say the hotbed of Internet crowdfunding raises questions about accountability and what it means for the sustainability of public health care.
According to 2015 statistics, the global crowdfunding industry raised $34 billion (even though an estimated half of online campaigns fail to raise the necessary amount to succeed). Traditionally used to fund startup businesses, contributors are offered rewards for their donations, for example, early access to a video game. The rationale is that the right cause — and tapping into the right crowd — increases the chances of success, said Brett Caraway of the University of Toronto’s Institute of Communication, Culture, Information and Technology.
“If you’re an entrepreneur, it’s like your idea is on trial,” Caraway said, “and if the campaign fails, it’s an indicator the idea is not worthwhile.
“Think of that from the perspective of someone trying to raise money for a surgery.”
Online appeals for health crises, however, bank on something more than just logic or reason. They tap into a social network held together by emotional bonds. They rely on such “rules of behaviour” as reciprocity and altruism, Caraway said. “‘They would do it for me if I was down and out.’ There’s an obligation to return the favour,” he said. With total strangers, the reward is doing good for the community. “We’re social beings, not isolated creatures, we need to belong, and crowdfunding uses those dynamics.”
But crowdfunding has deterrents, research suggests, including its extremely public nature, Caraway said. “It requires you to almost be like a marketer: you have to create a campaign, get the materials together, make your case, publicize it and try to raise funds. That’s a very public process.”
Crowdfunding is a kind of competition for attention, said patient advocate Durhane Wong-Rieger, head of the Canadian Organization for Rare Disorders. “It requires some really passionate people to make it happen. But no one in Canada (with its universal access) should have to fundraise for medically necessary care.
“Many of us are quite compelled to donate when there is a disaster, but one disaster after another, we’re going to give up,” she said. “Just from a matter of policy and sustainability, how will this work in the long run? It’s not a sustainable approach.”
Schreindorfer’s campaign hit all the right notes. He was a young man who had married his high school sweetheart, Luciani. He was just back from their honeymoon in 2014, looking forward to starting their life together, when illness struck: acute lymphoblastic leukemia, an especially aggressive cancer. The only glimmer of hope was an experimental but promising clinical trial at New York’s Memorial Sloan Kettering Cancer Center, and it cost a fortune.
Despite the disease’s devastating effects, the couple posted dozens of updates and intimate photos illustrating their progress on a blog Luciani maintained in French and English on Facebook, Youcaring and at HelpSaveMatthew.com. Their cheerful faces shone in shots from the wedding, cuddling in a hospital bed amid medical tubing, giving a thumbs up during a bonemarrow transplant, and holding a $10,000 cheque to benefit the Leukemia and Lymphoma Society of Canada.
The cancer came back following the treatment in New York, but Schreindorfer never gave up. In his last blog post on Feb. 4, he wrote that his doctors were worried the leukemia was gaining the upper hand, affecting his kidneys, liver and lungs, and invading his central nervous system. He thanked everyone for their support: “It really helps us get through our days, encourages us and gives us hope that we will one day have a normal life with a beautiful family to enjoy it with . ... We will get there, I promise you that!”
In August, Schreindorfer and his wife flew to Maryland. He was accepted into a four-month clinical trial run by the National Institutes of Health. It did not work, Luciani told the Montreal Gazette in early February. “We knew there was only a 60 per cent possibility it would work,” she said, “but we had to try it.”
Schreindorfer had been in Maisonneuve-Rosemont Hospital since December, trying to push the cancer into remission so he could participate in another drug trial, this time in Seattle, specifically targeting the gene driving his illness.
‘They would do it for me if I was down and out.’ There’s an obligation to return the favour. We’re social beings, not isolated creatures, we need to belong.