When survival is a popularity contest: the sorrow of crowdfunding in the health sector | Life and style

HThe appointment of eather Bellamy in March at the Queen Elizabeth Hospital in King's Lynn was unsatisfactory. Acute myeloid leukemia was diagnosed five years earlier in December 2014; now, her doctor explained gently, she was short of options on the NHS. Bellamy, 48, would begin a chemotherapy treatment called azacitidine that could extend her life expectancy from two months to six years. Her doctor asked her if she had a list of buckets. "I felt crushed," she recalls.

A month later, Bellamy – an office nurse and mother of four from the Downham market in Norfolk – does not pursue her dreams of bungee jumping or swimming with dolphins. Instead, she is collecting money online for an experimental cancer drug, enasidenib, which has been approved by US authorities but is not available on the NHS.

Until now, a GoFundMe page created by her niece has raised more than £ 36,000 – a huge but insufficient amount. Enasidenib treatment costs almost $ 25,000 (£ 19,600) a month; If Bellamy has to go to the United States, she will have to raise at least £ 250,000. Crowdfunding may be his last chance.

In the United States, it is common for people without health insurance to try to cover their medical bills with GoFundMe and other platforms by publishing their story and the amount they hope to collect. It is less prevalent in Britain because of the provision of universal health care, but the BBC said crowdfunding has raised £ 20 million for UK patients over the past year. Figures published by the British Medical Journal show that at least £ 8 million has been collected in the UK since 2009 solely for the treatment of cancer with an alternative health element.

A campaign in 2014 for Mike Brandon, a cancer patient in Bristol, raised more than £ 450,000 for experimental treatment in the United States. This success was widely hailed when Brandon returned to the UK "cancer free". (In 2017, Brandon was in complete remission and had even returned to work.)

In 2017, the family of Charlie Gard, a boy born in August 2016 and suffering from a rare genetic disease, raised nearly 1.4 million pounds sterling. His case hit the headlines for months. But for every #charliesarmy, there are many other online causes that do not get close to their targets.

Successful crowdfunding campaigns tend to follow a formula. They are written on behalf of a beneficiary who clearly deserves (mothers, children and the sole breadwinner who is at the top of the hierarchy) and who has cancer or genetic disease – all which is debilitating, urgent and without fault. The calls are launched in the language of the conflict: the sick struggle valiantly, they are heroic in combat, they are brave.

When we reduce complex medical cases to online popularity contests, there are winners and losers, says Nora Kenworthy, badistant professor in the faculty of nursing and health studies at the University. from Washington to Bothell, near Seattle. "It's a bit Dickensian: there are mbades in difficulty and the only heroic and perfectly good person who receives funds and is drawn from poverty. Crowdfunding is popularizing a new type of economic market, where people are essentially selling … it's standardizing the idea, at least in the US, that to get essential health services, it's necessary to compete with all these others be the most deserving, the most needy, the most convincing. "

There is no doubt that crowdfunding can be used to address gaps or weaknesses in the health system. Eli Hill, a 19-year-old student from Southampton, is trans and raises funds on GoFundMe for advanced surgery. Hill has made savings, but his part-time care badistant salary will not cover the estimated cost of £ 4,000. He says that waiting for three years for surgery on the NHS is not an option. "I wear a schoolbag every day, which is not good for my physical health because it limits my breathing and my ribs. It's not good either for my sanity, what I'm struggling with already … Having a body that I hate completely is really detrimental. "

But publicizing his cause has come with his own challenges. Hill says some Twitter users have responded by saying that he should not ask for donations by paying for new tattoos. "It's scary, because you go outside and you never know what people are going to say. And having to be vulnerable is really bad. It's like, why should I tell everyone my trauma? In five months, Hill has raised only £ 205 on a goal of £ 4,000.

Crowdfunding generally does not work: Kenworthy's research (with collaborator Lauren Berliner) shows that less than 10% of pages are meeting their financial goals. The people who compose them tend to be very literate, to master the technologies and to have good relations in public relations or in the media. "Successful campaigns involve a tremendous amount of work to build and maintain momentum," says Kenworthy. "You seem to be writing a story, taking a selfie, publishing it online and collecting a lot of donations, but it's not quite representative of the kind of work and expertise you need. to these successful campaigns. "

Abdurzak Hadi, 40, is adamant: for most people, crowdfunding is a waste of time. The London taxi driver has created a GoFundMe page for his son Mohamed to undergo experimental treatment for leukemia in the United States, but he has only collected £ 18,460 on a £ 540,000 target. Mohamed died in February, at the age of 12. "When you participate in crowdfunding, it's not like it's advertising," Hadi said. "You must have a team behind. I do not think it helps in any way. "

He had spent hours updating the page, promoting it on the LBC radio station and on the Business Insider website, and even paying for Facebook advertising, but most of the donations came from family, friends, and family. Hadi's friends and colleagues, who would have given anyway. Watching the page in which he had put all his energy and personal sorrow fail to move the audience was deeply discouraging, he said. "I felt as if people were inhuman. You make all these efforts and few people donate. "

Even successful crowdfunding can leave people open to exploitation by unscrupulous operators. Regulatory agencies such as the National Institute for Health Excellence and Care ensure that only evidence-based medicine is available in the NHS; Thanks to crowdfunding, patients can bypbad these access controllers with untested and sometimes dangerous treatments, often offered abroad, which they themselves have been able to study themselves.

"You see very sick and very desperate people … seeking to go beyond the answers provided by evidence-based medicine," says Professor Jeremy Snyder, a crowdfunding expert at Simon Fraser University near Vancouver. "People are essentially trying to make money with their desperation." Snyder recently co-authored an article in the Lancet Oncology journal on crowdfunding cancer patients for homeopathy and other alternative treatments. In one-third of cases, patients had learned that their cancer was terminally ill, but they wanted to continue trying solutions. "From an ethical point of view, what is worrying is that you essentially throw out the money of others."

Patients often waste not only funds for treatments that may not work, but also something more valuable: time. "In many of these cases, people would have benefited from palliative care, pain management, and more time with their families," says Snyder.

The family of Gemma Nuttall, suffering from bad cancer, has spent thousands of pounds in ozone treatments and vitamin infusions in a German clinic, thanks to crowdfunding, loans and for sale of a house. Nuttall's family claims to have paid six treatments at £ 60,000, but it did not work – she died in October 2018. Speaking recently at the BBC, Nuttall's mother, Helen Sproates, has questioned the decision to continue this expensive and exhausting treatment. "I thought to myself, should we have done the list of things to do, spend the last months of Gemma's life with her daughter, try to be happy and create memories?"

His comment exposes the flaw at the heart of the debate on crowdfunding. Health care is a human right and nobody should have to raise money for their own survival. But when the chances are calmly incalculable, you can not blame them for exploring all the options, whatever their probability.

Enasidenib is already approved in the United States, Bellamy does not rely on a miracle solution, and the search for new treatments gives it the impression of being as before. "When I'm looking for recent research, answers, etc., I'm a nurse." She only gets moved once during our conversation, when she talks about the possibility of not being badisted. at the wedding of his niece.

Crowdfunding can also rebadure people. The day of our conversation, Bellamy participates in a sale of car boots organized in his honor, the proceeds of the sale being intended to cover the costs of his treatment. his sister and brother-in-law took collection buckets to a local Tesco. "It's not just about money," she says. "I mean, yes, money is important. But this positive feeling really comes from knowing that all these people are working so hard to get the treatment I need to keep me alive. "