Crowdfunding treatment — when survival is a popularity contest

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CrowdfundingIt’s increasingly popular to try to fund expensive medical treatments — or alternative therapies — by appealing online for donations. It can be a heartbreaking process, reports The Guardian.

It writes that Heather Bellamy’s March appointment at the Queen Elizabeth Hospital in Kings Lynn hadn’t gone well. She had been diagnosed with acute myeloid leukaemia five years before, in December 2014; now, her doctor explained gently, she had run out of options on the UK‘s National Health Service (NHS). Bellamy, 48, would be starting a chemotherapy drug called azacitidine that could extend her life expectancy from two months to six. Her doctor asked if she had a bucket list. “I felt crushed,” she remembers.

The Guardian reports that speaking one month on, Bellamy – a senior practice nurse and a mother of four from Downham Market in Norfolk – isn’t chasing her dreams of bungee jumping or swimming with dolphins. Instead, she is fundraising online for an experimental cancer drug, enasidenib, which has been approved by the US authorities but is not available on the NHS.

So far, a GoFundMe page set up by her niece has raised more than £36,000 – a considerable sum, but not enough. The enasidenib treatment costs nearly $25,000 (£19,600) a month; if Bellamy is to make it to the US, she will need to raise at least £250,000. Crowdfunding may be her last chance.

The report says in the US, it is common for people without health insurance to try to cover their medical bills on GoFundMe and other platforms by publicising their story and the amount they hope to raise. It is less prevalent in Britain because of the provision of universal healthcare, but the BBC says crowdfunding has raised £20m for patients in the UK in the past year. Figures published by the British Medical Journal show that at least £8m has been raised in the UK since 2009 for cancer treatment with an alternative health element alone.

A campaign in 2014 for Mike Brandon, a cancer patient in Bristol, raised more than £450,000 for experimental therapy in the US and was widely hailed as a success when Brandon returned to the UK “cancer-free”. (As of 2017, Brandon was in complete remission and had even returned to work.)

In 2017, nearly £1.4m was raised by the family of Charlie Gard, a boy born in August 2016 with a rare genetic disorder, whose case dominated headlines for months. But, the report says, for every #charliesarmy there are many more online causes that don’t come close to their targets.

Successful crowdfunding campaigns tend to follow a formula. They are written on behalf of a clearly deserving beneficiary (mothers, children and sole breadwinners are at the top of the hierarchy) who has cancer or a genetic condition – anything debilitating, urgent and not their fault. Appeals are made in the language of conflict: the sick struggle valiantly, they are heroic in battle, they are brave.

When we reduce complex medical cases to online popularity contests, there are winners and losers, says Nora Kenworthy, an assistant professor at the University of Washington Bothells School of Nursing and Health Studies near Seattle in the report. “It’s a bit Dickensian – there are the struggling masses and the one heroic, perfectly good person who gets funding and gets plucked out of poverty. Crowdfunding is popularising a new sort of economic marketplace, where people are essentially marketing themselves … it’s normalising the idea, at least in the US, that, in order to get essential health services, you need to compete with all these other people to be the most deserving, the most needy, the most compelling.”

It is certainly the case that crowdfunding can be used to get around shortfalls or sluggishness in the healthcare system. Eli Hill, a 19-year-old student in Southampton, is trans and is fundraising on GoFundMe for top surgery. Hill has been saving, but his salary as a part-time care assistant won’t cover the estimated £4,000 cost. He says the three-year wait for surgery on the NHS is not an option. “I wear a binder every day, which is not good for my physical health, as it’s restricting my breathing and my ribs. It’s not good for my mental health, either, which I already struggle with … Having a body I just completely hate is really detrimental.”

But, the report says, going public with his cause has come with its own challenges. Hill says there was some backlash from Twitter users who said he shouldn’t be asking for donations while paying for new tattoos. “It’s scary, because you’re putting yourself out there and you never know what people are going to say. And having to make yourself vulnerable really sucks. It’s like: why should I have to tell everyone my trauma?” In five months, Hill has raised only £205 of his £4,000 goal.

Much of the time, crowdfunding doesn’t work: Kenworthy’s research (with her collaborator Lauren Berliner) shows that fewer than 10% of pages reach their financial targets. The people behind them tend to be highly literate, tech savvy and well connected in PR or media. “The successful campaigns involve a tremendous amount of labour to set up and keep the momentum going,” says Kenworthy. “It seems like this thing where you just write a story, take a selfie, post it online and get a bunch of donations, but that’s very misrepresentative of the kind of labour and expertise that goes into these successful campaigns.”

Abdurzak Hadi, 40, is adamant that, for most people, crowdfunding is a waste of time. The report says the London taxi driver set up a GoFundMe page for his son Mohamed to undergo experimental therapy for leukaemia in the US, but he raised only £18,460 of his £540,000 target. Mohamed died in February, aged 12. “When you do crowdfunding, it’s not like it will advertise itself,” Hadi says. “You have to have a team behind it. I don’t think it helps by any means.” He had spent hours updating the page, promoted it on the radio station LBC and the website Business Insider, and even paid for Facebook advertising, but, the report says, most donations came from Hadi’s family, friends and colleagues, who would have given anyway. Watching the page into which he had poured his energy and personal heartbreak fail to move the public was profoundly dispiriting, he says. “I felt like people were inhumane. You put in all this effort and not a lot of people donate.”

Even successful crowdfunding can leave people open to exploitation by unscrupulous operators, the report says. Regulatory bodies such as the National Institute for Health and Care Excellence ensure that only evidence-based medicine is available on the NHS; through crowdfunding, patients can circumvent these gatekeepers with untested and sometimes dangerous therapies, often offered abroad, that they may have researched themselves.

“You see people who are very sick and very desperate … who are trying to look beyond the answers that are being given to them by evidence-based medicine,” says Professor Jeremy Snyder, an expert in crowdfunding at Simon Fraser University near Vancouver. “People are essentially trying to make money off them and their desperation.” Snyder recently co-authored a paper on cancer patients’ crowdfunding for homeopathy and other alternative treatments. In a third of cases, the patients had been told their cancer was terminal, but they wanted to keep trying options nonetheless. “From an ethics perspective, what’s concerning is that you’re essentially throwing away other people’s money.”

Patients often waste not only funds on treatments that may not work, but also something more precious: time. “In a lot of these cases, people could have benefited from palliative care, pain management and more time with their family,” says Snyder.

The report says the family of Gemma Nuttall, who had breast cancer, spent thousands of pounds on ozone treatment and vitamin infusions at a German clinic, raised through crowdfunding, loans and a house sale. Nuttall’s family claim they paid for six rounds of treatment at £60,000 a pop, but it didn’t work – she died in October 2018. Speaking recently, Nuttall’s mother, Helen Sproates, questioned the decision to pursue the exhausting and expensive treatment. “I do think to myself: should we have done the bucket list, spent the last few months of Gemma’s life with her daughter, trying to be happy and make memories?”

The report says her comment exposes the fault-line at the heart of the crowdfunding debate. Healthcare is a human right and no one should have to raise money for their own survival. But when someone’s odds are incalculably bleak, you can’t blame them for pursuing every option, no matter how fraught or how slim the chance of success.

With enasidenib already approved in the US, Bellamy is not pinning her hopes on a pie-in-the-sky solution, and researching new treatments makes her feels like her old self. “When I’m looking for the up-to-date research and answers and things like that, that’s when I’m the nurse.”

The Guardian report

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