I hate to end the week on a down note, but it can’t be helped. I only learned about this late Wednesday night, after I had already finished yesterday’s post. So I’ll cut straight to the chase. Annabelle Potts has died:
Longtime readers will remember when I used to blog about cancer quack Stanislaw Burzynski a lot more often. One of the recurring types of posts that I did, with great sadness, was to note the deaths of various patients whose families had been the most outspoken advocates for Burzynski. You might remember these names, such as Amelia Saunders, Billie Bainbridge, Rachel Mackey, McKenzie Lowe, and many others. These were the patients who rose to fame (or at least social media fame, which back then was just becoming a thing) through either their crowdfunding campaigns to raise the money to travel to Houston to be treated with Burzynski’s antineoplastons or his thrown-together “personalized gene-targeted therapy” for whatever deadly cancer they had happend to be unfortunate enough to be diagnosed with or for having appeared in one of the two propaganda movies made to lionize Burzynski as a pioneering researcher rather than the quack that he is. The reason I did this was not to be morbid, nor was it to “dance on their graves.” I had (and have) nothing but empathy and sympathy for the families of these patients and their struggles to deal with a terminally ill family member. Rather, it was to make sure that their deaths did not go unnoted, because one of the problems with alternative cancer cure testimonials, such as the ones provided by many of Stanislaw Burzynski’s patients is that they can take on lives of their own and outlive the patients who provide them, leading new patients astray and thus endangering their lives. I also wanted to provide closure to my blogging about their stories, given that they were usually patients whose glowing testimonials about Stanislaw Burzynski were used to help him sell his cancer quackery and/or to be weaponized against regulators trying to shut the Burzynski Clinic down.
Many of the patients in the stories I’ve blogged about over the years had brain cancer, the majority of which were diffuse intrinsic pontine glioma (DIPG), a tumor of the brainstem that is nearly always fatal and, although rare overall, more common in children. It’s true that there are a handful of long term survivors of DIPG reported in the medical literature, and there are occasional patients who show dramatic responses to conventional therapy (and even spontaneous regression), but, by and large, the prognosis for DIPG is very, very dismal. The mainstay of therapy, radiation, is strictly palliative. It will sometimes shrink the tumor, but won’t eliminate it, and the tumor starts growing again not long after. The added survival time is rarely more than a few months.
Now, unfortunately, there is a new quack joining Burzynski to prey on these patients and their desperate families. Or should I say “quacks”? I’m referring, of course to Clínica 0-19 and the two doctors there, Dr. Alberto Garcia and Dr. Alberto Siller, whose practice is the Instituto de Oncología Intervencionista. They both operate out of Hospital Angeles in Monterrey, Mexico. I’ve done a four part series on the quackery at Clínica 0-19 (part 1, 2, 3, 4). So I won’t go into the details explaining why what Drs. Sillar and Garcia do is quackery. If you’re interested, read part 2. Then read part 4, in which I look at the best evidence they can provide for their treatment. (Hint: It’s pretty thin gruel.)
Like Stanislaw Burzynski, Drs. Garcia and Siller use patients to promote their quackery. As happened with a number of Burzynski patients throughout the years, credulous and glowing news accounts of patients whose family see Clínica 0-19 as their “last hope” show up in British and Australia tabloids (and sometimes even in US news papers). Crowdfunding efforts flood the Internet, because Drs. Garcia and Siller charge a lot of money, with bills for patients’ families reaching the six figure range fairly rapidly, with at least one patient’s bills reaching the high six figure range. Like the case for Burzynski, families sell their possessions, drain their bank accounts, max out their credit cards, and devote nearly all their time to fundraising because most of them are not rich enough to come up with $300,000 cash in a matter of a few months or less. Annabelle Potts was just such a patient whose family took her to Monterrey. For instance, here’s a story about her from February last year. Note the headline, Little Annabelle Potts and her family have found hope with brain tumour treatment in Mexico:
But Annabelle’s battle is far from over. Her family know she isn’t cured, and even though Australian doctors don’t support the findings from Dr Siller and Dr Garcia in Monterrey, Annabelle’s parents believe they are their best shot at buying time until there is a cure.
So that means every six weeks, they cough up $30,000 from anywhere they can find it, sometimes through Facebook fundraising, and Adam takes time off work as a carpenter to fly Annabelle from their Canberra home to visit Clinica 0-19.
Often the struggle is described in heroic terms:
Although last Tuesday was gruelling and at times painful for Annabelle, she barely complained. For the four hours News Corp Australia spent with her preparing for and undergoing two scans, her dad was a calm, solid and gentle presence for the little girl with whom every day is a bonus.
When asked how he was handling it all so well, he said it was far from their worst day in Monterrey.
Such a spin is understandable. No one, other than the parents actually suffering through the ordeal of seeing their child diagnosed with a terminal illness. We can only imagine, and the parents are brave and determined. They go to incredible lengths to raise the vast sums of money required to get their children treated in Monterrey and are there with their children every step of the way, like Annabelle Potts’ father. It’s that inspiring parental love and devotion that Drs. Garcia and Siller take advantage of. It’s that same parental love that lead reporters astray covering these quacks, resulting in stories portraying their quackery as “experimental” treatment rather than a proprietary thrown-together concoction of expensive targeted treatments injected directly into the arteries leading to the brainstem combined unproven dendritic cell immunotherapy. Never mind that Dr. Garcia drops the old quack excuse of “we’re too busy taking care of patients to do clinical trials” and has refused to let international experts travel to Monterrey to evaluate his methods and help him set up a proper clinical trial. To reporters, the human interest angle, particularly the hope, is the only angle they care about. They don’t really care if the treatment is a legitimate experimental therapy or not.
Even in death, the Australian press is still spinning her story the same way. For instance, here’s 9News:
Canberra girl Annabelle Potts, who has been travelling to Mexico for experimental cancer treatment, has died, her family has announced.
The brave five-year-old travelled to Mexico several times to treat a rare cancer called Diffuse Intrinsic Pontine Glioma (DIPG).
Next up, the “she was told to go home and die” part of the testimonial:
She was diagnosed with the cancer two years ago.
Her battle with the illness and her family’s fight to find a cure had captured the nation’s hearts.
Doctors in Australia had refused to operate on the cancer, citing the size and location of the tumour.
Instead her parents were told to “go home and make some memories with Annabelle”.
This is always followed by the family’s refusal to give up, which is portrayed as brave and the family’s efforts to raise money to pay for the quackery laudable:
But her family did not give up, instead going to Mexico for experimental treatment.
Her fight also came with the added difficulty to paying the bills for her treatment.
Flying to Mexico, where her treatment was unsubsidised, cost her family about $33,000 each time.
But the generosity of strangers helped ease the financial burden of the trips.
The families’ efforts are brave and laudable, but the fact that they are also misdirected and placed in the service of quackery cannot be denied. As for the fundraising for quackery, I’ve referred to this as quacks taking advantage of the generosity of strangers. Crowdfunding has become part of the business model of many cancer quacks. Certainly, encouraging families to take advantage of the sympathy people naturally feel for a child and family in this situation leading to their generosity is part of Dr. Garcia’s and Dr. Siller’s business model.
Another newspaper, The Daily Telegraph, used one of the challenges that Annabelle Potts’ family used to raise awareness of brain cancer:
Just 10 weeks ago Annabelle Potts challenged everyone to suck on a lemon and pull a face in an attempt to raise awareness for “the little kids with bumps in their head”.
The five-year-old had the most devastating of all childhood cancer, diffuse intrinsic pontine glioma, or DIPG.
Yesterday morning she died in the arms of her loving parents Kathie and Adam two years after she had been diagnosed with the brain stem tumour which is always fatal and mostly affects children.
Then, the same narrative:
When Annabelle was diagnosed in December 2016, her parents were told she had just nine months to live and, Kathie and Adam Potts were told to go home and make memories.
In the face of no treatment on offer in Australia, the Canberra family flew to Mexico to trial experimental chemotherapy at a secretive clinic in Monterrey. After 10 rounds at $30,000 a pop, Annabelle’s tumour had shrunk to the point it could no longer be detected. That was March 2018 but the joy was short-lived.
The tumour came back.
For over two years, the Potts have tirelessly campaigned for more money for research, challenging doctors, writing to politicians and facilitating Annabelle’s Lemon Face Challenge.
As I pointed out at the time, the tumor hadn’t really shrunk to the point where it couldn’t be detected. It appears that Drs. Garcia and Siller share another trait with Stanislaw Burzynski, overly optimistic readings of brain MRIs.
Then, here’s the kicker:
On the morning of her death, the Potts finally received what they had been pushing for.
The news report is referencing this:
While it’s a fantastic thing that the efforts of Annabelle Potts’ family have led to the Australian government appropriating funds for DIPG research, it irks me to see real experimental therapies, like CAR-T immunotherapy and polo kinase 1 targeting, being mentioned alongside Clínica 0-19’s concoction, as though they were equivalent.
I end this post, as I end all such posts, by emphasizing that I am not criticizing the parents, who clearly love Annabelle Potts with an intensity that led them to go to incredible lengths to save her life. No child deserves this fate. No family deserves this fate, and I have nothing but sympathy for them. I am, however, calling out the quacks, Drs. Garcia and Siller, for taking advantage of that love by selling false hope to the tune of $30,000 (AUD) per treatment, not just to the Potts family but to dozens of families. I’m calling out the media for hammering all these stories into the same narrative of loving families who had been told to “take their child home and make memories” but refused to give up and instead found an “experimental” therapy, while either not mentioning or very much underplaying the utter lack of evidence for the therapy. Indeed, I just saw another example the other day using that very narrative for Lucy Moroney and Edie Molyneux, both of whom were treated in Monterrey for DIPG and died recently. (They reporter even described Dr. Garcia and Siller’s treatment as “revolutionary” and “pioneering”!) I’m calling out the crowdfunding platforms that make stories like that of Annabelle Potts so depressingly common these days. I’m calling out media outlets who then spin the story of the child’s inevitable death when it happens into a tale of triumph, rather than what it is, the story of a family victimized by unscrupulous doctors..