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Why medical experts are increasingly concerned about crowdfunding websites

NOTED logo NOTED 6/11/2018 Nicky Pellegrino
Photo/Getty Images © Bauer Media Photo/Getty Images

With some patients spending thousands of dollars, there’s growing concern at the use of crowdfunding sites to pay for unproven medical treatments.

Janelle Brunton-Rennie had just become a mother for the first time when her husband, Kurt, was diagnosed with an aggressive blood cancer. Initially, his treatment for B-cell non-Hodgkin lymphoma seemed to be going well. But then, after the scan that they had hoped would confirm he was in the clear, they got the devastating news that Kurt had five rapidly growing tumours.

“Immediately, he went from a 90% chance of beating it to a 10% chance,” says Brunton-Rennie. “And 10% is not good enough. I wasn’t going to sit on my hands.”

She started looking for a back-up plan. The answer seemed to be travelling overseas for an emerging immunotherapy treatment called CAR T, in which the patient’s T cells – the white blood cells that play a central role in immune function – are modified so they will attach themselves to cancer cells and kill them.

Facing a medical bill of hundreds of thousands of dollars, Brunton-Rennie turned to crowdfunding website Givealittle. More than $200,000 was raised. “That meant we didn’t have to sell our house and everything we own,” says the Auckland PR executive. “We’ve been able to refinance and use the Givealittle money to help pay treatment costs.”

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Kurt, who is aged 41, is in Boston where he has been accepted on a CAR T trial and is undergoing treatment. His Givealittle appeal has closed but there are dozens more ill people with pages on the crowdfunding site looking for help, ranging from paying for cancer drugs not funded by Pharmac to seeking contributions to cover living expenses or finance bucket-list adventures. A proportion are trying to raise money to cover the costs of alternative therapies.

Givealittle has no restrictions on the types of treatments people can seek donations for. Its priority is to prevent fraud and money laundering and ensure funds go to the place stated. But, internationally, there are concerns large sums are being raised for therapies not backed by science that could potentially be harmful. Research published recently by the BMJ showed that crowdfunding for unproven treatments has soared. Websites such as GoFundMe and JustGiving have opened up a new source of cash for those offering non-conventional approaches such as vitamin C infusions, alkaline therapy, extreme dietary regimes or coffee enemas in private clinics located in places such as Mexico, Turkey and Germany.

a person holding a baby: Kurt Brunton and daughter Sage. Photo/Brunton-Rennie family collection © Bauer Media Kurt Brunton and daughter Sage. Photo/Brunton-Rennie family collection

The figures, gathered by the Good Thinking Society, a UK charity that promotes scientific thinking, showed that since 2012, more than 540 appeals have raised more than £8 million ($16m) in the ULK for unproven therapies. By far the biggest beneficiary of those funds was the Hallwang clinic in Germany, where a variety of experimental and conventional cancer treatments are available at a high price.

The society’s Michael Marshall was prompted to do the research after seeing numerous stories in the UK press about people investing tens of thousands of pounds on unproven therapies. “I started following up a few of their stories and often they died a few months later,” he says.

Marshall is concerned many sufferers are spending their last days at these clinics, then dying and leaving their families in debt. He is now lobbying for crowdfunding sites to be more proactive about vetting appeals. His suggestion is they should have a list of key words that would red-flag “quackery” and then partner with a cancer charity or university research department to assess whether a treatment is legitimate before allowing the appeal to go ahead. “I totally understand the motivation of patients,” he says. “Someone is telling them they can help their problem. But it can cost a huge amount of money and be a miserable way to spend the last few months of your life.”

Brunton-Rennie remains hopeful the CAR T trial at Massachusetts General Hospital will be the answer for Kurt. The couple should have some idea how well the treatment is working by mid-November. If the news isn’t good then she won’t give up. She will be looking at other back-up plans, including alternative therapies, if they seem to be Kurt’s best chance of seeing his daughter, Sage, grow up. “When you’re faced with losing someone you love, you’ll do anything and everything,” she says. “Knowing there is a treatment overseas and not being able to access it would be the most heartbreaking thing I could imagine.”

This article was first published in the October 27, 2018 issue of the New Zealand Listener.

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