I’ve been writing about alternative medicine (i.e., quack) cancer clinics for a very long time now. Regular readers will recall some of them: The Burzynski Clinic, Hallwang Clinic; Clínica 0-19, and several others. These clinics vary considerably in what they offer, with some offering mainly alternative therapy, some offering unproven conventional therapy (such as Clínica 0-19, which offers unproven intra-arterial chemotherapy injected into brain), some offering only alternative therapy (e.g., the Gerson Intitute or the Hippocrates Institute), and some offering a combination of conventional therapy, unproven experimental therapy, and quackery like homeopathy. An excellent example of this particular quack model would be Hallwang Clinic in Bavaria in German, which is known for offering experimental therapeutics outside of the auspices of a clinical trial plus every quackery known to man. How do these quack clinics manage to charge exorbitant sums of money? Crowdfunding, unfortunately. This brings us to an article published yesterday by the BBC on this very topic, Hallwang and crowdfunding. It begins with the story of Gemma Nuttall.
When Gemma Nuttall developed cancer, her family raised thousands of pounds online, with the support of actress Kate Winslet, to send her to a German clinic. But there was no happy ending – and fears remain that crowdfunding puts new pressure on vulnerable families.
Gemma Nuttall was a victim of ovarian cancer. It’s a heart-breaking story:
Doctors saw the first signs of Gemma Nuttall’s tumour when she went for a pregnancy scan.
Everyone thought it was nothing at first – a cyst or a glitch in the monitor.
But a month later she was told it was ovarian cancer.
Gemma decided to delay chemotherapy until her daughter Penelope was born – and for a while life returned to normal.
Then the headaches started.
The cancer had spread to her brain and in spring 2017 she was offered palliative care and given months to live.
Nuttal was only 28 years old and had just had a baby. It’s entirely understandable that the diagnosis of a terminal cancer was devastating to her and her family. No new mother wants to face a situation in which she won’t be able to care for her baby and see her daughter grow up—or even see her make it to grade school.
Enter the quacks. there are a lot of quack clinics out there, and Hallwang is among the quackiest. Worse, it’s one of the more expensive quack clinics. Get a load of this:
Helen found a clinic in Germany, the Hallwang, that offers alternative therapies such as ozone treatment and vitamin infusions alongside drugs not available on the NHS.
The clinic does not publish survival rates but its website includes testimonies from former patients treated there with apparent success.
It was one of these testimonies that caught Helen’s eye.
But the decision to take Gemma to the Hallwang brought a bigger pressure. The bill for just one trip was €108,000 (£93,000), with future visits needed for “top up” treatments.
This is a very common characteristic of these clinics. They claim high rates of survival for deadly cancers. Stanislaw Burzynski, claims much better rates of survival for deadly brain cancers than conventional treatment, but when he was finally forced to publish his results they were not very impressive at all. His slightly (not hugely) higher rate of published survival could easily be explained by selection bias, in which the patients who can make repeated trips to his Houston clinic are likely to be healthier and have less aggressive disease than those who cannot—or their survival is not better than conventional therapy at all. The same is true of the quacks at Clínica 0-19. They claim much higher rates of survival for the deadly brainstem cancer diffuse intrinsic pontine glioma (DIPG), but base it on anecdotes alone. When they finally published their survival statistics, it was as an abstract at a meeting for which the abstract was hard to come by, and their survival statistics were not as impressive as claimed, easily explainable by confirmation bias, and the horror its patients and families faced was beyond belief.
And don’t even get me started on all the quack stem cell clinics, although most of them don’t claim to treat cancer. In any event, charging huge sums of money for therapy that is ineffective or no more effective than conventional therapy is the sine qua non of these clinics.
This characteristic frequently leads to discussions like this among patients and families considering traveling to them:
“It was like getting hit by a sledgehammer,” Helen said. And the process of deciding what to do and how to do it had been “horrendous”.
Helen said: “You have to really sit down as a family and say, ‘If we do this, if we end up destitute with nothing and it doesn’t work, where are we going to be?’
“You have to decide what you are going to do about it. And then you have to live with the consequences.”
Acting on these discussions then often leads to extreme financial distress, which leads to crowdfunding. Nuttall’s family took out loans and sold a house, but it wasn’t nearly enough. So they turned to crowdfunding. Ironically, Genma Nuttall wasn’t happy about this decision:
Helen’s decision to go public and crowdfund led to “quite big rows” with her daughter.
“We are a private family. Gemma was quite shy and didn’t want to get involved with any of it and nor did I to be honest,” she said.
“But we needed a high profile to get more funds to get her to Germany.”
Families have been ripped apart by this pressure to fundraise. They feel obligated to “do everything possible,” which leads to the quack clinics in the first place, and families who quite sensibly opt for palliative care are sometimes unfairly pressured by their family and portrayed as having “given up,” as the story points out:
Some relatives say their families have been ripped apart by the pressure of trying to meet rising bills.\
The parents of one young child with terminal cancer told BBC News they had deliberately made the decision not to raise money for treatment overseas but to “make memories” with their daughter instead.
But they had been constantly harried by other family members to reverse the decision.
Can you imagine the cruelty of this? You have a child with a terminal illness. You’ve made a heart-wrenching decision that what is best for your child are palliative care and spending as much time as you can with him. Then your family puts pressure on you to take your child to one of these quack clinics. They have all the best intentions, but their hectoring inevitably adds to the already horrific burden the parents are bearing as they care for their dying child. All cancer patients face some of the same thing, with adult cancer patients often being told by their friends and family that they should try this quack or travel to this clinic. Here’s a hint: This does not help them, however benign the intent. It adds to their distress.
Even worse: Well-meaning celebrities getting involved. Their celebrity serves basically as a huge advertisement for the clinic. In Nuttall’s case it was Kate Winslet:
Gemma’s crowdfunding campaign raised £16,000 – a large sum but still nowhere near enough for a first round of treatment.
Then, out of the blue, an email arrived. Helen thought it was fake at first. It was from someone saying they worked for Kate Winslet.
The actress, who had read Gemma’s story, wanted to help.
Winslet raised money herself and media coverage boosted the wider crowdfunding campaign.
“I’m so unbelievably grateful,” Helen said. “We were very, very, very lucky.”
Thanks to Winslet, Gemma was able to make seven trips to the Hallwang.
As I discussed before, in February 2018, Nuttall reported herself to be cancer-free, as this story describes, appearing on the BBC alongside Kate Winslet to thank her for saving her life.. Hallwang, of course, recommended continuing treatment:
The Hallwang advised her to keep returning for “maintenance” treatments, costing £20,000 less than she had been paying before. But the money was beginning to run out.
And Helen had to choose between paying for continuing treatment or saving the remaining money in case the cancer returned.
“It’s like spinning plates,” she said.
“If I stop doing it, are they going to smash to the ground or stay up there?
“I beat myself up now as to whether I made the right decision.”
They decided to stop the treatment.
Unfortunately Nuttall’s cancer recurred in May in her spine. She became so ill that traveling to Germany again was not an option. She died last October, and, according to this article, the video of Nuttall on television talking about how her life had been saved by Kate Winslet’s donation, of coure, remains on the Hallwang’s website. I confirmed that it is still there this morning. Here is the video:
Gemma Nuttall’s mother Helen wants the video taken down, but that’s not how quack clinics work. Testimonials, once made, often circulate on social media and remain on the clinics’ websites long after the person making the testimonial has died of her disease. It’s a vicious cycle:
Helen wants it taken down, along with testimonies from other patients who have died.
“They are not here anymore, so to use them to get more people to go is absolutely wrong,” she said.
The person who initially inspired her to take Gemma to the Hallwang “is not turning out well”, she said.
“And that’s what happened with Gemma. She’s inspired a lot of people. But Gemma hasn’t turned out well,” Helen said.
Same as it ever was. It’s how these clinics operate. They use testimonials to draw patients in, and crowdfunding is how patients who are not wealthy manage to come to these clinics. In 2019 that is the business model of these quack clinics.