Last summer, I learned about a particularly awful pair of cancer quacks whose patients had been making the news in Australia and elsewhere. I’m referring, of course, to Dr. Alberto Garcia and Dr. Alberto Sillar at Clïnica 0-19 in Monterrey, Mexico, who claim to have much better results than conventional treatment for a particularly nasty form of brain cancer known as diffuse intrinsic pontine glioma (DIPG). Indeed, one might say that it’s their specialty, and dozens of families of children with this horrific cancer have made the trek to Monterrey to the tune of tens of thousands of dollars per visit and hundreds of thousands of dollars total per patient to have their child undergo Drs. Garcia and Siller’s invasive interventional radiology procedures to inject chemotherapy straight into the brainstem an unproven dendritic cell immunotherapy. I’ve described why these two are quacks in my usual detail in a three part series (part 1, 2, 3); so I won’t go into detail. Rather, I plan on discussing two incidents that led me to revisit these two particularly pernicious quacks.
Many of the patients in the stories about alternative cancer cure testimonials that I’ve deconstructed 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 not eliminate it, and the tumor starts growing again not long after. The added survival time is rarely more than a few months.
This brings me to what led me to revisit Clínica 0-19; a famous patient with DIPG from Australia, a girl named Annabelle Potts, has died:
Longtime readers of SBM and my not-so-secret other blog might remember how I frequently used to blog about cancer quack Stanislaw Burzynski. One of the recurring types of posts that I used to do 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 happened 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.
That’s one reason why I’m took note of the death of Annabelle Potts. Another reason is to point out how the media are complicit in enabling cancer quacks. I will then contrast how these two cancer quacks are portrayed by the media with a story sent to me by the parent of an actual patient who traveled to Monterrey. Some of this I’ve discussed over on my not-so-secret other blog. Some I have not.
Annabelle Potts and the media
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 newspapers). 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, knows what they are going through. We can only imagine, and the parents are often 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 with 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. Also, as I recently ranted (a little bit) about, I very much object to the false dichotomy. If there is no curative therapy, we’re told, then the choice is between quackery (albeit not properly described as such) and nothing (i.e., “going home to die”). There is, of course a third and entirely appropriate option, palliative care and, when the time comes, hospice. Palliative care and hospice are not “doing nothing”, and, although they are basically “going home to die”, they are a means of actively making sure that a patient with an incurable terminal condition can live out the last weeks and months of her life with as little suffering as possible.
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 good thing that the efforts of Annabelle Potts’ family have led to money being appropriated 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 quackery, as though they were equivalent.
A child’s story: The reality behind the quackery
In response to my three-part series in June, I received several emails from actual relatives of patients whose parents had taken their children to Clínica 0-19. Their stories, as you might imagine, were heart-wrenching, every bit as much as that of Annabelle Potts or another patient whose plight made the news, Annabelle Ngyuen, an Australian girl of Vietnamese descent whose parents took her to Clínica 0-19 and who was treated in Hospital Angeles in Monterrey, the main hospital out of which Drs. Garcia and Siller operate. As you might recall, this Annabelle suffered a number of complications while in Monterrey that landed her in the ICU at Hospital Angeles. There, she stayed, racking up $2,500 a day in hospital charges and her parents unable to fly her home to Australia because a medical airlift would cost $220,000.
Unfortunately, none of these parents were willing to have their story told publicly, and, as soon as I mentioned that I knew a reporter who was interested in doing a story on Clínica 0-19 and asked if they would be willing to speak with her, they ghosted me. It didn’t matter that, by the time this had happened a few times, I prefaced my request with ironclad guarantees that if they said no I would honor their wishes and never reveal their identities; they ghosted me just the same, to the point where I stopped asking. There was one exception, one parent who was willing to write up an account of her story and give me permission to post it, as long as I preserved her anonymity. I never asked her about speaking to a reporter, because it’s been months since I’ve been in with any reporter interested in this story, but she did give me permission to post her story, and here it is, unedited other than to correct minor typos (English appears not to be her first language):
My husband and I had one of the worst experiences in our lives with these doctors. They were totally arrogant, and what they are doing seem to be clearly unethical and unacceptable.
It’s hard for us to write about this because we don’t want to take hope away from all the parents that are here from different countries, I think they are doing the best they can to save their children…and as you said we can’t blame them. I’ve been there, and of course as a parent we do EVERYTHING for our kids. But the doctors seem to be taking advantage of the families’ situation just to make money.
We don’t understand why they don’t officially publish anything on their works, investigations and findings if they are certain that it works. They have been doing it for twenty years!!!
In our case didn’t work at all, our daughter had a brain tumor, not DIPG, but anyway it didn’t work.
She passed away. The doctors lied to us about many things and besides the intra-arterial drugs, they carried out other procedures neither discussed nor authorized by us.
They physically reviewed my daughter just once before the treatment because I asked them to…and never visited her after the treatment! I told them that she was doing really badly after the treatment and they didn’t seem to care at all! They just sent another doctor…and never went to see my daughter again. They didn’t answer my calls, they just didn’t care! We requested the list of the drugs that were used during the treatment to be able to review them with the doctors originally in charge of my daughter’s case, but they strongly refused to share their “magic formula”.
We are worried about all these kids and families that are coming from other countries because there is a lot of publicity about this. I have been doing some research and noticed that the treatments seem to just buy some time to the patients.
I repeat, it’s really hard for me to write about my experience, I don’t want to disappoint all these families that have done a tremendous effort in providing the best to the their children with the hope to save them.
But I think the families should know more about these doctors and the so-called treatment…
Very important too, we felt truly mislead about the MRI results which were apparently manipulated with contrasts and angles to show us supposedly that the brain tumor was reduced after the treatment.
They told me the tumor was a lot smaller, (actually that was the only visit from Dr. Siller at the hospital without looking at my daughter) but we ordered another MRI a week later just to realize that the tumor was even bigger and our original doctors confirmed the unfortunate interpretation of the images.
Our daughter was in a really bad shape after that treatment and she remained hospitalized for many many days to make her stable.. Of course with different doctors that really helped her a lot.
I don’t want to get anyone upset, but I had to let you know.
Maybe I’m wrong because I don’t have the information of all the international patients.
But I felt that I had to tell you my personal experience.
I don’t know how to help those families, they have to know about this…
As I said, this account is difficult to read. It tears me up to note how concerned this mother is with not taking away hope from other parents of children with DIPG or other brain tumors traveling to Monterrey to be treated by Drs. Garcia and Siller, of not upsetting them. After living through a tragic experience that most of us can only imagine with horror, she doesn’t want to cause distress in others living the same experience now. I must admit that I have a hard time understanding this perspective, but then I recognize that I’ve never faced what she has faced, nor have any of my relatives or friends. Unlike her, I don’t face these situations through personal experience. I approach them from the perspective of a skeptic and consumer advocate trying to warn other parents of what I consider to be fraud. As I’ve said many times before, I don’t blame the parents who take their children to Monterrey. Faced with the impending death of a child whom they love, they’re desperate and will grasp at any straw of a chance that might save their child’s life. I place the blame squarely where it belongs, on Dr. Garcia and Dr. Siller.
Also note other aspects of this mother’s story. First, there’s the unwillingness on the part of the quacks to interact with the patient’s family once their child’s condition starts deteriorating. How often have I heard that before, particularly about Stanislaw Burzynski? As long as the patient seems to be doing well, particularly if he’s doing better than the average patient with the cancer he has, quacks will be all jovial and happily interact with the patient. Once the disease begins its inevitable progression and the patient’s clinical situation deteriorates, they disappear. They don’t return phone calls. They farm out the patient’s care to one of their lackeys, as Drs. Garcia and Siller did here, or they basically ghost the parents.
I’ve also heard the part about misreading MRI scans before, too. You might recall that about Stanislaw Burzynski. In stories about patients treated at the Burzynski Clinic, I frequently heard of how Burzynski had told parents and patients that MRI scans showed much better results than they did. One example was the case of Amelia Saunders. Burzynski told Amelia’s parents that the formation of cysts in her tumor meant that his treatment was working when, as I discussed long ago, it didn’t necessarily mean anything of the sort; it could have meant that the tumor had simply outgrown its blood supplies and its center was dying. There are other examples of Burzynski telling parents and patients one thing about their CT or MRI scans and physicians at home telling the them something quite different; in all cases, Burzynski’s interpretation was unjustifiably optimistic.
This mother’s account is also consistent with the accounts of other patients of Drs. Garcia and Siller that I’ve read, such as Annabelle Ngyuen, where they gave the parents unrealistically optimistic interpretations of her brain scans and only provided a few images, nowhere near enough to determine whether Annabelle’s tumor had actually shrunk. They also used the wrong kind of scan to evaluate DIPG properly. Even worse, Dr. Garcia told Annabelle’s mother that she had been cured, but that if they stopped the treatments the tumor would grow back and she would die. (Hint: That’s not what “cured” means.) Still worse yet, when the tumor started progressing again, Dr. Siller recommended increasing the frequency of treatments in order to “get it under control,” thus extracting more money out of the parents.
This mother’s observation of the arrogance of Drs. Garcia and Siller rings true, as well. You might remember Dr. Garcia’s excuse for why he hasn’t done clinical trials. It’s the same excuse that quacks have used from time immemorial (or at least since the era of randomized clinical trials began), namely that he was “too busy treating patients” to do proper clinical trials. Meanwhile, Dr. Siller was quoted in a laudatory article that featured both Annabelle Potts and Annabelle Ngyuen thusly:
The pair is scorned by the international medical community, some of whom label them as cowboys preying on vulnerable parents of dying children. They question their science, the drugs they use, and the scans they use to judge tumour size.
“I told an Italian doctor…’if you have something to give your patient getter than what we are using, feel free’,” Dr. Siller said.
Now that’s some arrogance and callousness. I’ll also quote again an email from a relative of a father of a child with DIPG who had traveled to Mexico for a consultation but ultimately decided not to have Drs. Garcia and Siller treat their children that I received after my original posts on the topic:
Prior to my relative travelling to Mexico I assisted him in preparing a list of approx 20 questions for Drs Siller and Garcia including requesting details of all the drugs that would be administered, specific outcome data on all patients they had treated, why their results weren’t published etc etc. The final question was on the ethics of withholding their treatment protocol from international colleagues and thereby precluding children being treated in their own countries without the costs and social disruption frequent trips to Monterrey entail. The answers to the questions were grossly inadequate and the final question made Dr Siller annoyed. My nephew, a lawyer, decided this treatment was not appropriate for his daughter and they returned to Australia. His daughter died in January this year.
As I said at the time, given that Drs. Siller and Garcia won’t answer these questions, I suspect that they know their treatment is unethical and probably doesn’t work. Also, quacks tend not to like to be questioned too closely (just look at how Stanislaw Burzynski reacts to criticism). Certainly, the abstract they published (which was hard to find) isn’t good evidence, as I will now discuss. Perhaps this is the answer to this mother’s question about why they haven’t published their results; their results are…underwhelming.
The best evidence they can muster?
It turns out that Dr. Siller and Garcia had presented their results in an abstract at a Mexican conference not long before I wrote my original three posts about them, their clinic (Clínica 0-19), and their practice Instituto de Oncología Intervencionista (IDOI). However, I couldn’t find the actual abstract, search as I might. A few months ago, a reader let me know that the abstract could be found, having been published in Immuno Mexico 2018, XII Congress of the Latin American Association of Immunology and XXIII Congress of the Mexican Society of Immunology, and I’ve been meaning to discuss it ever since. The abstract is on page 369 and entitled “Super-selective intraarterial chemotherapy in the primary management of diffuse intrinsic pontine glioma: 2-year experience from an institution in México” by Alberto García, Alberto Siller, Paola García, and Sixto Trejo.
I’m going to reproduce the entire abstract because that will make it easier to discuss:
Introduction: Diffuse Intrinsic Pontine Glioma (DIPG) is an aggressive tumor in the pons with a median overall survival of 9 months, ≥90% of patients won’t survive 2 years after diagnosis.
Super-Selective Intraarterial Chemotherapy (SSIAC) is a delivery method that allows higher drug concentrations at the tumor site while exhibiting only mild systemic toxicity due to relatively low levels of the agent in circulating blood.
Aims: The presented study focuses on our experience treating patients diagnosed with DIPG using SSIAC with a non-protocolized, individualized set of Chemotherapeutic drugs.
Experimental strategies: Eligible subjects are under 18 years of age, with a radiological diagnosis or proven DIPG biopsy, excluding those whose tumor extends beyond the pons or with the presence of metastasis.
Initial evaluation and follow-up consist of MRI, PET/CT and Lansky play-performance score.
Results: From March 2016 to April 2018, 62 patient’s clinical and radiological conditions were evaluated and treated by our team with intraarterial chemotherapy. A median of 7 intraarterial procedures per patient were performed. With age ranges between 2 and 17 years, 8 years on average, 22 male and 40 female, with a median of survival after the diagnosis of 489 days and counting.
The follow-up range for these results has a median of 6 months. A median of Lansky score 60% before treatments and a median of 80% after treatments.
45 are with stable disease, none with progression of the disease and 2 of them in remission, all presenting response to treatment. 17 deaths related to treatments prior to our intervention.
Immunological parameters were taken into account to perform the treatments.
Conclusions: Given the inconsistent efficacy of radiotherapy and the limitations of systemic chemotherapy, innovation in adaptable therapeutic methods is a necessity
Patients with DIPG can benefit from being treated with SSIAC, resulting in radiological improvement and better quality of life.
My reaction? Simple: That’s it? These are the fantastic, miraculous results that justify charging families five figures a pop for treatment? Let’s explain why these results are not that impressive, at least as published in the abstract. (Maybe their poster or talk had more information, but somehow I doubt it.) First, though, let’s look at the description of the treatment itself, which is basically bare bones. It’s not unexpected that Drs. Siller and Garcia don’t list the chemotherapy agents used; they never do. Indeed, getting that information out of them has proven to be…challenging. I only obtained such information because a medical oncologist from the UK asked for some information and one patient’s family provided me with a list of drugs used, and my information was not necessarily generalizable because Dr. Siller touts his “individualization” of treatments, which basically means making it up as he goes along. Oh, wait. He objects to that characterization? Until he can describe how he picks one set of chemotherapy drugs for one patient and another for a different patient using a scientific rationale, I will continue to characterize this concoction this way. More odd, no mention of “immunotherapy” is made. The abstract says “immunological parameters were taken into account,” but there’s no way of knowing what the heck that actually means. In any event, this entire conference is an immunology conference. Without the immunotherapy there wouldn’t have been much reason for this abstract even to be submitted to this particular meeting.
One part I found depressing to contemplate was where the number of treatments patients undergo was listed: A median of seven intra-arterial treatments per patient. That’s a median of seven general anesthesias, at least for children too young to cooperate under local anesthesia with sedation; seven angiography procedures, each with its attendant risks of bleeding, unnecessary radiation dosing, kidney failure due to the intravenous contrast dye, and the actual chemotherapy injected. What is not mentioned in this abstract is whether these seven intra-arterial treatments include seven intrathecal treatments as well, given that many of the descriptions I read from parents involved intrathecal chemotherapy as well. (Remember, Parker Monhollon’s cascade of complications began after the insertion of an Ommaya reservoir, a catheter system for infusing drugs into the cerebrospinal fluid.)
But what about the reported results? I find it interesting that the authors didn’t say how they analyzed survival (Kaplan-Meier?) Did they use an intent-to-treat analysis to estimate responses and survival? The authors estimate a median survival of 489 days for their treated patients. That’s basically 1.34 years, or roughly 16 months. The most frequently quoted median survival for DIPG treated conventionally is less than a year, but with a fairly wide range among studies, as summarized by the DIPG Registry. Considered this way, an estimate of 16 months for median survival is at the high end of existing reported studies. It’s superficially impressive but nothing that much out of the ordinary, and that’s if you actually believe that Drs. Siller and Garcia calculated median survival correctly, a contention that, given their history, I am understandably quite skeptical of.
What raised my eyebrows even more was the part where Drs. Siller and Garcia stated that there were 17 deaths “related to treatments prior to our intervention”. Oh, really? How was it adjudicated for each patient who died that the cause of death wasn’t tumor progression or complications from IDOI’s treatment? Now that, if anything, is a determination that would need to be made by an outside doctor, because doctors actually using an unproven “experimental” treatment like that of IDOI can be automatically assumed to be biased, too invested in the therapy to be neutral. That doesn’t go just for this treatment, but any experimental cancer treatment. Let’s just put it this way. Any of those 17 patients who received even one round of the IDOI treatment should be counted for purposes of determining median survival. My guess is that, were that to be done, the survival of this group of patients would not be so impressive. Worse, as has been the case before when Dr. Siller has said that he prefers that patients who come to Clínica 0-19 have not had radiation and requires that the patient be off steroids prior to his treatment.
Then there’s the issue of “stable disease”. Stable disease means disease that isn’t progressing. Let’s just say that I don’t have a lot of faith in IDOI to use appropriate imaging interpretation to decide whether a given DIPG is progressing or not, given what I just discussed earlier in this post. Also, nowhere have I seen evidence that a competent neuroradiologist is interpreting these scans, and I’ve noted in the past that IDOI often orders PET-CT scans instead of the preferred imaging modality for DIPG, MRI. Dr. Paola Garcia, for instance, is on the IMED Hospitals Oncology Service and appears to be a palliative care doctor.
It was also pointed out to me that the IDOI changed its website, adding this about its treatments for DIPG:
A European Society of Pediatric Oncology (SIOPE) and the International Society of Pediatric Oncology (SIOP) collaborative report, which gathers records of Diffuse Intrinsic Pontine Glioma (DIPG) and was published in July 2018, reveals that the average survival rate in more than 700 cases is 11 months.
As of mid-2018, IDOI has treated 67 patients with an average age of 9 years diagnosed with DIPG. After treatment, the median survival was 18 months. Just over 70 percent of the patients had over 1 year of survival and almost 20 percent more than 2 years of survival. The Institute continues to advance and improve.
IDOI stands out as an institution by virtue of its statistics, since it has almost 10 percent of the SIOPE and SIOP patient registry, and for obtaining more favorable patient outcomes on average.
So this sounds as though they added five more patients to the mix, to bring the total up to 67.
In any event, although these numbers sound at least better than average compared to the usual results obtained treating DIPG, there is a lot of reason to doubt that IDOI and Clínica 0-19 have made any sort of breakthrough. One thing, again, is the general shadiness of Dr. Siller’s excuses about why he hasn’t published his results or protocol in the peer-reviewed literature or allowed international DIPG experts from Australia to visit Monterrey, audit his results, and help him set up a clinical trial to test whether his protocol actually improves outcomes for DIPG patients compared to the standard of care.
Another major potential confounder is that there could be considerable selection bias in the patients treated by Drs. Siller and Garcia; i.e., patients whose families can bring them to Mexico are not like typical DIPG patients. First, they are wealthy enough or sufficiently involved and ambitious enough to raise a lot of money very fast to pay for expensive treatments and trips to Monterrey. Such children are likely to be healthier and in better shape from a general health standpoint. Next, the treatment involves long international flights to Mexico every few weeks for treatment. All other things being equal, a child who can tolerate such frequent travel to a distant city is likely to have less advanced disease than a child who cannot. Finally, there’s the requirement that a child receiving this therapy be off steroids for several months. A general use for steroids in neuro-oncology is to control the brain swelling around a tumor. The skull is a closed space, and the swelling caused by brain tumors can cause a dangerous increase in intracranial pressure that can, if allowed to progress too far, kill quickly. Thus, any patient who can tolerate being off steroids for prolonged periods of time, even a period as short as a few weeks, almost certainly has a smaller and/or less aggressive tumor. Ditto any child who can go without radiation therapy long enough to get to Mexico and receive this intra-arterial chemotherapy. The bottom line is that there’s nothing in Dr. Garcia and Dr. Siller’s results that can’t be explained by selection bias and failure to do an adequate intent-to-treat analysis.
The price of pediatric cancer quackery
I end this post, as I end all such posts, by emphasizing that I am not criticizing the parents. The parents of Annabelle Potts, Annabelle Ngyuen, Parker Monhollon, Lucy Moroney, Edie Molyneux, the unnamed child whose mother gave me permission to publish her account, and all the dozens of other children treated by Drs. Garcia and Siller in Monterrey clearly love their children with an intensity that led them to go to incredible lengths to try to save their lives. 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 $20,000-$30,000 per treatment, not just to the Potts family but to dozens of families thus far and counting. I’m also calling out the crowdfunding platforms that make stories like that of Annabelle Potts so depressingly common these days.
Finally, I’m calling out the media for shoehorning 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 media outlets who then spin the story of the child’s inevitable demise when it happens into a tale of triumph, rather than what it is, the story of a family victimized by unethical and arrogant doctors who to me are more accurately described as quacks.