Back in 2009, I discovered cancer quack Stanislaw Burzynski. I didn’t pay a lot of attention to him, however, until three years later, when he was attracting patients from the UK and all over the developed world, thanks to medical propaganda film disguised (poorly) as a documentary, Burzynski The Movie: Cancer Is Serious Business. After that, I started looking into his treatment, substances that he had discovered in the 1970s and dubbed “antineoplastons,” in great detail and determined that there was no evidence that they have significant anticancer activity. It’s not my intent to rehash my many, many discussions of Stanislaw Burzynski’s antineoplastons, how many times he’s slithered away from justice, and how he’s still taking advantage of the families of desperate cancer patients.
One thing that struck me right from the beginning is how much Burzynski’s treatments ended up costing patients and families hundreds of thousands of dollars; indeed, the mean seemed to be around a quarter of a million or so in the cases I examined. How did the families raise this much money? Besides selling possessions, the most common way that much money was raised was through crowdfunding, using Facebook and sites like JustGiving, GoFundMe, and YouCaring, the last of which has recently been acquired by GoFundMe. Parents of children with cancer or adults with cancer and/or their families would set up Facebook and GoFundMe pages, and, because of the generosity of strangers, were often able to raise tens, even hundreds of thousands, of dollars in a manner of weeks. As I became more interested in cancer quackery, I saw the same story repeat itself for other quack clinics, such as Hallwang Clinic and other German quack cancer clinics, quack stem cell clinics, and, most recently, Clínica 0-19 in Monterrey, Mexico, which treats children with diffuse intrinsic pontine glioma (DIPG) with an unproven (and secret) combination of chemotherapy agents administered every few weeks intra-arterially to the tumor plus a secret form of “immunotherapy,” leading parents from as far away as Australia to rack up hundreds of thousands of dollars in medical expenses.
For all of these cases and clinics, the story follows what to me is now an all-too-familiar trajectory. A patient is diagnosed with a deadly cancer, often (but not always) brain cancer. A grim prognosis is given by conventional oncologists. Understandably, the patient (or, in the case where the patient is a child, the family) searches for alternatives online. Because there are so many quacks online, they inevitably find one or more quack clinics. They contact the clinic and either get a phone consultation or travel to the clinic, where they are told that the quack can provide something better, that might even be able to save the patient’s life. The patient and/or family decide to go for it, but learn that it costs tens of thousands of dollars per treatment, plus travel and lodging expenses, and that insurance or, in the case of the UK or other countries with universal health insurance, the government won’t pay. So they drain their savings, often sell their house and/or car, and eventually run out of money, leaving crowdfunding as the only option to continue treatment. Given how many people I’ve chronicled doing this, I’ve often wondered how much is raised in aggregate, given that crowdfunding seems to be baked into the business models of these clinics.
Last week, BMJ published an investigation that starts to answer that question. The title of the article by Melanie Newman is apt, “Is cancer fundraising fuelling quackery?” Full disclosure: I was interviewed for the article.
Is cancer fundraising fuelling quackery? The answer is yes.
The investigation published in BMJ is an excellent example of skeptical activism doing some real good, as it’s the result of work by The Good Thinking Society, a UK charity founded by Simon Singh and for which Michael Marshall (whom I got to meet at NECSS in July and at QEDCon last October) serves as Project Director. Basically, The Good Thinking Society perused the UK GoFundMe and JustGiving sites in order to find cases of medical fundraising for alternative treatments and then estimated how much money had been raised.
Newman reports the results of their work:
Doctors face difficult conversations with patients with metastatic cancer for whom NHS treatment has failed. A growing problem is how to advise patients who opt to pursue expensive, experimental treatments in the private sector, including orthodox therapies given in unproved combinations and doses but also alternative therapies with no evidence behind their use. The BMJ today publishes figures that show how crowdfunding for alternative cancer therapies has soared in recent years (tables 1 and 2). The figures, collected by the Good Thinking Society, a charity that promotes scientific thinking, show that since 2012 appeals on UK crowdfunding sites for cancer treatment with an alternative health element have raised £8m (€9m; $10m). Most of this was for treatment abroad.
JustGiving’s own figures show more than 2300 UK cancer related appeals were set up on its site in 2016, a sevenfold rise on the number for 2015.
The phenomenon has allowed less well-off patients to access expensive, experimental treatments that are not funded by the NHS but have some evidence of benefit. But many fear it has also opened up a new and lucrative revenue stream for cranks, charlatans, and conmen who prey on the vulnerable.
Remember that these are figures from just two UK crowdfunding sites GoFundMe and JustGiving, although they are by far the largest sites. The figures are broken down in more detail by year of fundraiser, crowdfunding site, and country where the clinic of treatment was located. Table 1 breaks the money raised down by location, and you can tell right away at a glance that, far and away, most of the money raised was for clinics in Germany. Given that this is the UK and Germany is a quick flight or a less quick train ride away, it doesn’t surprise me that more money was raised to go to Germany than anywhere else, especially in light of all the German clinics that combine conventional medicine with alternative medicine (i.e., quackery like homeopathy and naturopathy) and unproven drugs that might or might not be legitimate experimental therapeutics. Even less surprisingly, the single biggest beneficiary of this largesse is the Hallwang Private Oncology Clinic. Newman explains:
The largest sums by far in Good Thinking’s dataset, accounting for £4.7m of the £8m identified, were ostensibly raised for trips to the Hallwang Private Oncology Clinic in the Black Forest of southern Germany. The clinic claims that some people have used Hallwang’s name to raise money but have not then proceeded to treatment and, in some instances, have done so without ever contacting the clinic.
The Hallwang carries out diagnostic tests on patients’ tumours and treats them with a combination of experimental immunotherapy, peptide vaccines said to train the immune system to attack cancerous cells, and unproved therapies such as vitamin infusions.8 Drugs offered include bevacizumab, which inhibits growth of tumours’ blood vessels, and pembrolizumab and ipilimumab, two members of a new class of biological therapy known as checkpoint inhibitors. All three drugs have proved benefits for certain types of tumour.
Costs are high: a patient was recently quoted more than €100 000 for an initial 10 day visit.9 However, the clinic states it offers intensive treatment monitoring, with a nurse to patient ratio of 1:2, in a highly private setting and in extremely challenging situations. It says many of its patients arrive with serious complications such as sepsis, tumour associated bleeding, or bowel obstruction, which it treats and manages. It also says that its innovative treatments are purchased at a high price, and because the costs are not met by any third parties such as insurers or charities, they have to be paid by patients. It insists patients only pay for and are given treatments after thorough discussion and with the patients’ explicit approval and consent.
Of course, an exposé of Hallwang Clinic published earlier this year by Lindsay Gellman argues otherwise. Gellman found that Hallwang’s business practices are arguably predatory and exploit the seriously ill. The clinic even often continues to use patient testimonials on its website after the patients have died!
Cancer quackery in Germany thrives because Germany has a long history of embracing “unconventional” therapies and outright quackery like homeopathy. Gellman notes in her exposé that German insurers typically reimburse patients for homeopathy and that German law extends robust protections to “certified” practitioners known as heilpraktikers, who are trained in homeopathy and other alternative medicine and are permitted to treat patients with non-infectious diseases, like cancer. Interestingly enough, these protections date back to the Nazi era, when the Nazi regime, in an attempt to regulate a growing group of “natural healers”, legitimized them but forbade the training of new heilpraktikers. The idea was to phase them out and push medical doctors to incorporate “natural healing” into their practices. Not surprisingly, after the war, the ban on heilpraktiker training was reversed. These days, unfortunately, in Germany alternative treatments are now gaining popularity with real medical doctors, many of whom have begun to seek out such training as an add-on to their medical training, and the heilpraktiker and homeopathy lobbies are very influential politically.
Even worse, big pharma is in on it. Hallwang, for instance, is owned by Hallwang Clinic GmbH, in which drugmakers have a significant ownership stake. For example, the company’s CEO Albert Schmierer, a pharmacist by training, personally holds a roughly one-quarter ownership stake in the Hallwang Clinic, and serves as the CEO and owner of Dr. Zinsser Pharmaceuticals, a medical-products company, and runs Rappen-Apotheke, a pharmacy that specializes in homeopathy and is located near the clinic, according to its website.
Of course, another country with a large share of UK crowdfunding for medicine is Mexico. This is not surprising, given the existence of so many quack cancer clinics in Mexico, including Clínica 0-19 in Monterrey and the numerous clinics in and around Tijuana, conveniently just over the US border. So, the basic answer is that, yes, crowdfunding is fueling quackery, but what to do about that? The answer is a bit more complicated than you might think.
Blurred lines
Before this investigation by The Good Thinking Society, I knew there was a problem with crowdfunding for quackery, as did pretty much any proponent of science-based medicine who paid attention to this issue. The question was: How big is the problem? In starting to answer that, The Good Thinking Society has done a great service. The question, now that we have an inkling of the scope of the problem (I’m guessing that it’s much larger than what this investigation shows, given the limitations of the investigation), is what to do about it. The issue is more complicated than it might sound on the surface. Remember, crowdfunding has, as Newman pointed out, allowed less well-off patients to access expensive experimental treatments with some evidence of benefit that are not currently funded by the NHS. Any solution that doesn’t take that into account could end up doing harm.
Here’s what The Good Thinking Society suggests:
Good Thinking wants the crowdfunding sites to vet cancer appeals and “reject outright proposals that refer to specific drugs that have been discredited, extreme dietary regimes, intravenous vitamin C, alkaline therapy and other alternative treatments.” Marshall says: “If a fundraiser is for treatment for a serious or life threatening condition such as cancer, it ought to be reviewed before it is sent live, especially if it contains terminology that raises red flags for quackery.”
Edzard Ernst, professor of complementary medicine at Exeter University, supports the move, pointing out that crowdfunding organisations already reject appeals involving violence or illegal activity. “Crowdfunding for a terror attack is out of the question,” he said. “Crowdfunding for cancer quackery is not any better and must be stopped.”
I, of course, agree that this sort of a system would be valuable to protect patients and cut off a lucrative revenue stream for quack cancer clinics. However, implementing such a system would not be easy. Indeed, here’s what I said in the article:
Working out how best to protect patients and donors—while supporting their informed choices—will be no simple task for the crowdfunding platforms, as David Gorski, a US surgical oncologist who campaigns for evidence based science, explains.
“I support the concept of not allowing crowdfunding for treatment at quack clinics but must admit that I struggle to see how it would work in practice for some of these centres,” he said. “How would they deal with clinics that offer conventional treatments alongside quackery?”
Alternative centres do not usually publish data on treatment efficacy but instead provide testimonials, in which patients often describe being given a short time to live before starting the treatment that “saved” them. “Patients often don’t understand that not enough time has passed to say with any confidence that they are survivors,” Gorski explains.
Let me elaborate a bit by referring to what Christian Ottensmeier, professor in experimental cancer treatment at the University of Southampton, was quoted as saying in the article. He notes that 20-25% of patients going to Hallwang might receive some benefit taking the immunotherapy drugs, which Hallwang often uses for diseases in which they have not yet been adequately tested and for which efficacy has not yet been determined (which is why the NHS and insurers won’t pay for them). The problem, of course, is what the practitioners at the clinic are telling patients about the chances that these drugs will work for them. As The Good Thinking Society’s investigation shows, many of the patients using the crowdfunding sites have an overly optimistic view of their prospects for long-term survival:
Anastasia Leslie’s Buy Another Day GoFundMe page said she was told by the Hallwang that “all of the ovarian cancer patients (approx 20 to 25 per year in the last 15 years) … are still alive, doing well and in remission.” Despite apparently spending £100 000 in just one week10 at the clinic, her death was announced on the funding page within months of her first trip to Germany. Her appeal raised £155 000.
Rekha Banerji’s appeal for her daughter Rebecca, who had stage 4 breast cancer, said: “Although in the UK, this is a hopeless case, the German doctors are extremely confident Rebecca will gain full remission.”11 The appeal raised £14 645, but her daughter also died within months of starting treatment, according to her GoFundMe page.
Ottensmeier also noted that for “For “a much smaller sum you can buy the same immunotherapy drugs and have them administered in the UK.” So there is profiteering to consider.
Banning fundraising for quackery is easy for clinics like the ones in Tijuana offering the Gerson protocol, which consists of 13 big glasses of fresh juice, dozens of supplements, and five coffee enemas a day. That’s obviously quackery, and crowdfunding sites should not fund it. Ditto Burzynski, who’s had 40 years to demonstrate anticancer activity due to his treatment and has thus far failed as he’s spent the last 20 years abusing the clinical trial process, using it as a recruiting tool more than anything else. On the other hand, for clinics that offer conventional therapy along with their quackery, it’s basically impossible to assure that any money raised goes for conventional or off-label treatments that might have benefit; so the most straightforward solution would be to ban fundraising for any clinic that offers quackery like homeopathy, regardless of what other treatments the clinic offers.
As of now, though:
GoFundMe, the platform that features most prominently in Good Thinking’s dataset, said it is already “taking proactive steps” in the US to make sure users of its site are better informed and will be doing the same globally over the coming months.
“Ultimately, we’ll be monitoring content of this kind more closely in order to provide tailored advice,” a spokesman said. But JustGiving told The BMJ, “We don’t believe we have the expertise to make a judgment on this.”
There are a lot of doctors practicing science-based medicine out there who would be happy to help, I bet. I’d also make another proposal that even JustGiving could implement immediately while trying to figure out a more rigorous solution: Crowdfunding sites should require that patients using them to raise money for treatment identify the clinic or hospital to which they plan to travel. That requires no expertise whatsoever in adjudicating whether a given clinic is a quack clinic but would at least allow skeptics like me to identify campaigns for quackery at a glance and write about them if we so choose.
The role of the media
Newman also mentions the role of the media in this problem, noting:
Newspaper and TV reports on people with cancer drive donors to the crowdfunding sites, sometimes attracting the attention of celebrities, who boost funds. They also encourage others to seek the same treatment. “These reports may look like uplifting human interest stories, but the reality can be much darker,” says the Good Thinking Society’s Michael Marshall. “They rarely highlight the dubious and pseudoscientific nature of some of the treatments involved or just how many of the success stories actually ended in tragedy.”
This was something I noticed right away when I first started paying attention to Stanislaw Burzynski in a big way. In particular, the British tabloid press loves—loves!—to publish these stories. The reasons are obvious, particularly in the case of children with cancer. Such cases lend themselves to a narrative in which a heroic patient with cancer (or a heroic mom or dad of a cute child with cancer), faced with doctors saying that there is no curative treatment (which is also often portrayed as no treatment), decides to risk everything and spend everything to go to an alternative clinic. There’s also a political element, as Newman notes:
Many stories follow a familiar narrative: a tragic patient, with everything to live for, is on the mend after “miracle” treatment denied them by the NHS. Gemma Nuttall is one example. The Daily Mail and ITV 1415 reported the young mother was now “cancer free” in February 2018, a few months after treatment at the Hallwang clinic, which was funded in part by film star Kate Winslet. Sadly, a recent update on Gemma’s GoFundMe page said the cancer had returned. This has not been reported.
Many of Britain’s tabloids are—surprise! surprise!—rightward leaning politically, but even if they weren’t the narrative of a parent denied the treatment that she believes will save her child’s life by a faceless insurance company or government agency, only to find it somewhere else and be willing to raise hundreds of thousands of dollars to save the life of her child, is an irresistible human interest story. Such stories can lead to huge donations, as was the case when Edie Molyneux, a girl with DIPG whose family had taken her to Monterrey for treatment, received an anonymous donation of £250,000. Other headlines blare “18-year-old new mother with terminal brain cancer flies to Mexico for experimental treatment in desperate bid to save her life“. Moreover, outlier survivors are publicized with headlines like “Girl, 7, whose family sacrificed everything and moved to Mexico for £350,000 brain tumour treatment, becomes one of longest-surviving UK patients EVER… but they’re still terrified of losing her“, and all the children and patients who died deriving no benefit from the quackery often never appear in the headlines again.
Celebrities not infrequently glom on to such cases, usually with the best of intentions, as Kate Winslet did. Sometimes they promote the clinic, as Fabio Lanzoni promoted the Burzynski Clinic or even do charity concerts, as UK star Peter Kay did for Billie Bainbridge to help pay for trips to the Burzynski Clinic, and an Ebay auction to raise money for her included a guitar donated by Radiohead.
It’s not just tabloid press, either. Last week, I saw a horrifying example of publicizing quackery as though it were “experimental therapy” in The Washington Post in a story by Petula Dvorak entitled, “How much would you pay for one more day, one more month with someone you love?” I immediately recognized it as a story about a girl with DIPG whose parents took her to Clínica 0-19 in Monterrey:
If someone you love is dying, how much are you willing to pay for just one more day with them?
Doing the math, Melany Knott figured it cost about $1,100 a day. That got them 21 months.
“No regrets,” Knott said. “I wouldn’t change a thing. And I won’t wonder about anything.”
The Knott family auctioned off chain saws, goats and guns to raise some of the $695,000 they spent. They raided their savings, college funds, maxed credit cards and doubled down on the double shifts. They did fundraisers at the county fair and ran online tote bag sales to pay for untested treatments offered at a medical clinic in Mexico.
This was not the battle for a cure to their 13-year-old daughter’s monstrous, fatal brain cancer.
Yes, the Knott family spent nearly $700,000 on Dr. Alberto Siller and Dr. Alberto Garcia’s unproven treatment. Unfortunately, this story frames the Knott family’s decision as a brave gamble to have just a little more time with their daughter rather than what it really is, the story of a family taken in by quacks. I was not happy when I read the story:
The clinic, of course, is almost certainly @019Clinica, where two quacks have been taking advantage of desperate families of children with DIPG with an unproven treatment. 2/ https://t.co/LpoVPAqbYw
— David Gorski, MD, PhD (@gorskon) September 14, 2018
The @019Clinica protocol, such as it is, is a secret “make it up as you go along” combination of intraarterial chemotherapy and an unspecified immunotherapy. 4/ https://t.co/x05pNS1yuY
— David Gorski, MD, PhD (@gorskon) September 14, 2018
Worse, there is harm. Children have been harmed, and parents have been stranded in Mexico, unable to leave because a medical flight is too expensive but racking up $2,000 a day. The tales are horrifying. 6/ https://t.co/LYCCofGG0I
— David Gorski, MD, PhD (@gorskon) September 14, 2018
So @washingtonpost and @petulad‘s portraying @019Clinica with the question, “How much would you pay for one more day, one more month with someone you love?” without acknowledging the lack of evidence for its treatments and financial toxicity to the families is irresponsible. 8/8
— David Gorski, MD, PhD (@gorskon) September 14, 2018
And something I thought of after wrapping up:
Oh, one last thing. Never, ever refer to what @019Clinica is doing as “experimental therapy.” It’s not. Drs. Siller and Garcia are not testing a therapy in clinical trials. They’re selling it without evidence to the desperate parents of dying children. 8a/8
— David Gorski, MD, PhD (@gorskon) September 14, 2018
Now here’s the problem. Dvorak clearly doesn’t “get” why I found the framing that she chose for the story so troubling:
Maybe it’s your tweet that is misleading, Dr. I mentioned your concerns a couple times, including this paragraph. Making bigger leaps without deep, scientific reporting is journalistic malpractice. My readers are smart enough to draw their own conclusions. pic.twitter.com/8Dp0xe1RSJ
— Petula Dvorak (@petulad) September 14, 2018
To which I responded:
The mention of concern about no science is minimal compared to the totality of the article and is immediately followed by, “But the Knotts were willing to gamble. One more day. One more month with their child. Maybe, one more year, even?” Overall narrative is as I described it.
— David Gorski, MD, PhD (@gorskon) September 14, 2018
You see the problem? Dvorak thought that her article was acceptable because she spent one sentence in an ~1,100 word article mentioning that there was no scientific rationale for the treatment, while peppering the article with passages like this:
Would Knott do anything differently?
All that flying, the fundraisers, nearly $700,000 gone. She has three other daughters, all in their teens, one in college.
Nope.
The U.S. doctors told her to “go home and make memories,” she said. But Kaisy — the little girl who always won big awards showing her giant livestock — is a fighter. And Knott was going to fight for every single day.
“You do anything for your kid,” she said.
And:
“We were looking for quality,” she said. “And the Mexican treatments were less invasive and gave her quality.”
She thinks that American doctors gave up too fast, giving her eight months to live after the first diagnosis. And she said they were timid about treating her after the Mexican infusions, refusing to buck decades of traditional radiation therapy.
There’s also a passage mentioning how well Kaisy did—for a while.
Here’s one thing I have trouble understanding. The Mexican therapies are anything but “less invasive”. They involve repeated puncturing one of the femoral arteries and the snaking of a catheter up to the arteries feeding her brainstem in order to inject chemotherapy every few weeks, which for most children requires general anesthesia (although at age 12 Kaisy might have been able to cooperate without general anesthesia). Also, the risk of repeated angiographies include kidney failure. The protocol in some cases involves placing an Ommaya catheter into the cerebrospinal fluid so that chemotherapy can be infused intrathecally. These can get infected and in at least one case I’m aware of in Monterrey contributed to the death of a girl with DIPG. This is about as invasive as you can get without doing brain surgery to try to remove the tumor, which is almost never done for DIPG because it’s impossible to remove most DIPG tumors completely without damaging the brainstem. Radiation therapy and steroids, the standard of care, are far less invasive than the protocol used by Drs. Siller and Garcia.
This brings us to the one issue I have with Good Thinking’s recommendations, and that’s what to do about the press:
“If the media want to report on medical fundraising stories, they should seek the advice of qualified medical experts,” Marshall said.
This is not the problem. The vast majority of stories I’ve seen about cases like Kaisy’s do quote at least one medical expert or at least acknowledge there is no evidence for the treatment being discussed. The problem is that the medical expert or the expression of doubt is usually used as the “token skeptic” and buried somewhere in the middle of the text. Sometimes, as Dvorak did after noting that the therapy has no evidence to support it, reporters even use consensus medical opinion as a foil, immediately pivoting to a “but…” and going on to portray what the family is doing as a brave gamble rather than what it is, an unfortunate desperate family being taken advantage of by quacks.
Until we can overcome this tendency in the reporting of these stories, crowdfunding, be it by existing companies or new companies that spring up in the future, will likely continue to be a major revenue source for quack clinics.