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Here in the United States, we don’t have socialized healthcare because we hate the idea of paying for someone else’s medical bills. So instead, we pay for other people’s medical bills when they post on websites like GoFundMe and JustGiving. Somehow it’s just not fun unless you know the person involved is about to die or go bankrupt, or possibly both.
Unfortunately, other countries with more sensible healthcare opportunities aren’t immune from desperate people posting on crowdfunding sites to help with medical expenses. The difference is that while in the US most of the people are raising money just to see a real doctor or afford a real treatment, the people in places like the UK have exhausted their options with legitimate doctors, and are now desperately trying to find “alternative” treatments to save their lives. Sadly, this often means that they’re playing into the hands of quacks and charlatans.
The Good Thinking Society, a non-profit established by Simon Singh a few years back, has just published an investigation in the British Medical Journal looking at the extent of the problem, and it’s pretty bad. Since 2012, Brits have raised about $10 million for bunk cancer treatments, most of which are going to quacks abroad. The most famous recipient here in the US is the Burzynski Clinic, which skeptics have long tried to get shut down. The clinic is based in Texas and is run by Stanislaw Burzynski, who charges patients hundreds of thousands of dollars to treat their cancer with completely unproven techniques, at times telling patients things like “the cysts forming in your tumor is evidence of the tumor dying because of treatment,” when in fact that’s a common occurrence in tumors that are alive and well.
While the Texas Medical Board and the FDA have attempted to shut him down since as early as the 1990s, Burzynski continues to escape justice and bankrupt people dying of cancer.
Edzard Ernst points out that crowdfunding sites do have standards, such as not allowing people to raise money for terrorism, and so he says they should do a better job of cracking down on quackery. The sites themselves think otherwise, with a spokesperson from JustGiving telling the BMJ “We don’t believe we have the expertise to make a judgment on this.” And it’s a fair point…it’s much easier for a layperson to understand why funding ISIS is wrong than it is for them to know why funding antineoplaston cancer treatment is wrong. Not only is the medical terminology tough, but it’s hard to tell someone with cancer that they can’t raise money because you and your platform don’t believe the treatment they want will be effective. All these people hear are success stories–even if they’re completely made up out of whole cloth, they believe them because it’s what they want to hear.
And incredibly, the BMJ spoke with someone who did get ripped off by a cancer quack and who still doesn’t regret it even though they now realize that it was bogus. Sarah Thorp raised money for her dying sister to be treated with coffee enemas at a clinic in Mexico. She spent $21,000 on three weeks of treatment before they realized it was a con and left (I’m sorry, before they became “disillusioned” and left), and her sister died within the year. But she still says that the clinic gave her sister hope, which is what she needed to keep going after the NHS told her she was done for.
That’s so relatable, because the medical establishment in any country can sometimes feel depersonalized and cruel. Sometimes doctors are overworked and unable to spend time with patients. Sometimes they miss things, and sometimes, especially with women and minorities, they dismiss concerns as hysteria and exaggeration.
So much of this problem can be fixed by fixing our healthcare system, and it’s incredibly troubling to see a place that already has way better healthcare than we do here in the United States still facing some of the same problems we have. It’s better, but it still has a long way to go.
And that’s what I think the solution is. Sure, let’s get sites like GoFundMe to weed out people who are being taken advantage of by obvious con artists and quacks, but at the same time let’s build a better healthcare system that allows patients to feel truly heard, and to feel like people instead of customers or damaged products. “Hope” and “comfort” shouldn’t cost tens or hundreds of thousands of dollars. They should come free with the other services.