BUT WHAT IS THE TRUE COST?
“It’s been tough. We’ve had a lot of negative discussions (with doctors) but we refused that route,” Luciani said last month. “And Matt has made it clear he wants to do everything in his power to beat this.
“We know it’s possible, so that’s what we hold onto.”
Inspired by Schreindorfer’s story, another Quebec man battling the same virulent cancer that felled Schreindorfer earlier this month launched a crowdfunding campaign hoping to raise $800,000 to pay for a clinical trial in Boston. “I saw that he died — how sad. I read about him when I got sick two years ago,” photographer Mathieu Grégoire, 29, told the Montreal Gazette in an interview from his hospital bed in Quebec City.
After two years of radiation and chemotherapy, Grégoire got the all-clear from his hematologist just before Christmas. With his cancer in remission, he flew to Beirut, Lebanon, in mid-January expecting to cross into Syria for a photojournalism project, but returned home almost immediately because he was feeling ill. The diagnosis was grim: the cancer was back. Because chemotherapy no longer works for him, he’s getting blinatumomab, an immunotherapy drug. He hopes the drug will drive the cancer into remission so he can get a bone marrow transplant in Quebec.
His crowdfund, maintained by his partner Marjorie Chabot, currently has two updates and a dozen photos, including pictures of his daughter Maya, 5. It has raised $24,500 since Feb. 21, largely from Grégoire’s community in Thetford Mines.
“I’m overwhelmed by the rapid response on social media and moved that people are so generous,” Grégoire said, but he worries his campaign will suffer from donor fatigue. “Merci, merci, merci for your interest. I’m very touched.”
Apart from that charity fatigue, donors to crowdfunds have legitimate concerns about accountability. E-commerce on platforms like PayPal and Kickstarter have made it easy to transfer funds and rewards, said Toronto’s Caraway. “But what you don’t have is a structure in place for accountability,” he said. “It’s not easy to survey what happens after a transaction takes place. So how are people using these funds?”
When Ashley Anne Kirilow, 23, shaved her head, plucked her eyelashes and said she was dying of cancer in Ontario in 2009, she collected thousands of dollars with her bogus charity. Anecdotal evidence and media reports suggest dubious or fraudulent campaigns exist. But the extent of illegitimate crowdfunding is impossible to gauge, Caraway said. Crowdfunding platforms are loath to speak of it because it would hurt their bottom line, he added.
Nonetheless crowdfunding continues to ramp up, projected to grow to more than $300 billion by 2025 according to industry research.
While some of the most successful areas for crowdfunding are in scientific and medical research, patient advocate Wong-Rieger said she’s concerned patients and families go crowdfunding for individual medical treatment because they “feel left behind by public health” without realizing how hard that route can be.
In India, for example, crowdfunding for a diagnosis is quite common, Wong-Rieger said. “There is absolutely the understanding that no one can afford it. There isn’t the money for it. So you go out there and you raise the funds, and if you can raise funds, you can get access,” she said.
In countries where health care depends on charity, individuals rely on the church and benevolent associations. “But it’s not the same here,” Wong-Rieger said. “We don’t have the sense here that ‘I have to beg for it ... rely on donations,’ in order to get what is necessary care.”
Wong-Rieger, who has two children with medical conditions, said she also understands the desperation of patients and their families.
“I would never want to take away someone’s hope,” she said. But her organization never posts requests for crowdfunding because the merit of therapies cannot be verified. (For example, a clinical trial in Seattle featuring immunotherapy for aggressive leukemia was recently suspended because five patients died.)
Jaxon Pursch — or Jax the Warrior, as his parents call him on his GoFundMe page — is an eightmonth-old infant from Saint-Eustache with severe tracheomalacia, a malfunctioning windpipe. It makes his breathing sound like a truck is rumbling by. He also stops breathing momentarily when he cries.
Jaxon was diagnosed with a severe form of the condition at four months old, following several emergency room visits and hospitalizations with one viral respiratory infection after another.
Officials at the Centre hospitalier universitaire Sainte-Justine say Jaxon’s condition is common in young infants because their windpipe cartilage is soft and tends to compress during coughing or crying. But it will improve with time as the baby matures. In October, Jaxon had surgery that attached part of his windpipe to the sternum.
Initially, his parents, Marylène Fortin and T.R. Pursch, both 36, were ecstatic. He’s a seasonal worker and she owns a $7-a-day daycare. Jaxon’s repeated trips to the hospital put a huge strain on the blended family of 10 (seven of the children live at home).
But they claim Sainte-Justine abandoned them after the operation failed to help their son. So they launched a GoFundMe campaign last month with a goal of raising $100,000, titled, “help Jaxon on his road to recovery.” The parents want a consultation with a medical expert in the U.S.
“The operation failed my son,” Pursch said. “In fact it made it worse. He never stopped breathing before and now he stops breathing all the time. I can see his eyes go white and his upper lip goes tense before he catches his breath.
“They gave us training in CPR” in case the baby needs resuscitation, “which hasn’t happened yet, thank God.”
The hospital recommended an oxygen machine to ease breathing during viral infections, but the parents say that’s not good enough.
“That’s our biggest frustration … they’re not giving us answers or solutions. The operation was their solution,” Pursch said. “Now go home, thanks, if you get sick, come back. Are we supposed to live like this?”
Experts at the Montreal Children’s Hospital share the same outlook with Sainte-Justine’s, Pursch said, so their goal is to get Jaxon another surgery in Boston. An expert there was recommended by one of the surgeons who operated on Jaxon. And it’s the recommendation on Facebook by parents of children with such problems, he added.
“We are working desperately to raise the funds to save this sweet little boy, who fights every day to breathe and stay alive,” the campaign says. “As you probably already know, medical care in the United States are at the family’s expense, along with all food, lodging, and travel costs. The money raised will allow us to pay for Jaxon’s surgical evaluation and meeting with the specialists.”
Despite repeated infections, Jaxon continues to thrive, gain weight and grow normally, his parents said. They are also seeking a consultation at the Hospital for Sick Children, affiliated with the University of Toronto.
Jaxon’s page raised $14,000 in six weeks. A few years ago the family started an online fund to pay for their home renovation, but it went nowhere, Pursch said. Jaxon’s campaign started slowly but really took off with media involvement, he added.
That is what is called targeting “influencers,” where savvy funders use the media and patient lobby groups to spread the word, says Neil Seeman of the Institute of Health Policy, Management and Evaluation at the University of Toronto.
The web has long enabled patients, families and caregivers to share stories and lobby for change, he said, and that goes back to online chat groups and message boards in the 1990s that were popular with people with sensitive or stigmatized health issues like HIV/ AIDS, cancers and mental illness.
“As digital-marketing savvy and access to the web grows globally, this activity will only increase steadily,” he said.
Despite what Jaxon’s parents believe, the baby doesn’t need another surgical intervention, said Dr. Marc Girard, director of medical affairs for Sainte-Justine Hospital. He noted that the entire team — pneumologist, surgeon, pediatrician — treating Jaxon evaluated the boy and concluded he got the optimum treatment available based on scientific evidence for children with his condition.
“We advocated a wait-and-see approach” while his windpipe matured, Girard said, because no surgery is without side effects.
“We explained the situation to them and we thought they understood that it’s a question of time,” Girard said. “The condition is temporary, although temporary can be long for parents. But when we know nature will do a better job — with a little patience — we’re going to propose that. This is what the scientific literature tells us to do.”
Girard said he can’t endorse procedures that are not evidencebased. “I’ve been told there’s one surgeon who has a different surgical procedure which may, perhaps, improve (Jaxon’s) condition … but none of this data been published scientifically. Maybe in 15 years it will be a treatment of choice. But right now it isn’t.”
Crowdfunding for such unconventional treatments is often inspired by the desperation of parents, he added.
“I won’t name all the therapies people have tried,” he said. “They’re seeking a somewhat miraculous solution with much hope. We don’t want to take away their hope. But as professionals we have to have to set the record straight.”
The operation failed my son. In fact it made it worse. He never stopped breathing before and now he stops breathing all the time. I can see his eyes go white and his upper lip goes tense ...