Over the past couple of weeks, I have been writing about a clinic and doctors (Drs. Alberto Siller and Alberto Garcia) whose activities selling an unproven cancer therapy to desperate families of children with diffuse intrinsic pontine glioma (DIPG) for huge sums of money astounded even me. This is remarkable because, remember, I’m the blogger who’s written at least a couple of dozen posts about cancer quack Dr. Stanislaw Burzynski and his antineoplastons, the very prototype of profit generation from an unproven and almost certainly ineffective treeatment. Indeed, it was the resemblance of so many of the stories that I came across of children with DIPG whose families took them to Monterrey in Nuevo Leon, Mexico to Clínica 0-19 to the stories of Burzynski patients that first led me to take notice. The desperation, the false hope, the parents crowdfunding to raise the $300,000 or more plus travel expenses that it cost to undergo the combination of intra-arterial chemotherapy and “immunotherapy” all combined to give me a serious sense of déjà vu.
The only difference was that, in this case, what Drs. Alberto Siller and Alberto Garcia are doing through their Instituto de Oncología Intervencionista (IDOI, or the Institute of Interventional Oncology) at Hospital Angeles involves more invasive treatments than Burzynski’s, including multiple cerebral angiographies (with the attendant sedations and anesthesias necessary) and the injection of up to 11 toxic chemotherapy drugs directly into the brain. Last week, I explained why, based on what I learned of the protocol, this treatment is highly improbable, with doses of chemotherapy too low to do anything even accounting for being injected directly into the arteries leading to the brainstem and a dendritic cell-based immunotherapy that can’t possibly result in a sufficient number of dendritic cells to do anything. Unsurprisingly, this combination therapy is completely unproven, and Drs. Siller and Garcia have never even bothered to publish their protocol or survival statistics, blithely dismissing criticisms based on their failure by saying they’re “too busy saving lives” to publish. The details are here, for anyone who is interested. This week’s installment will, instead of detailing more about why I consider what Drs. Siller and Garcia are doing unethical and almost certainly quackery, focus more on patient stories. If you remember the stories of Burzynski patients, you’ll get the same sense of déjà vu that I have. Then I’ll conclude with some feedback that actual parents sent me and why it is that parents are willing to spend so much money and effort pursuing a treatment that almost certainly does their child no good and has demonstrably harmed some children.
I also want to point out that I do not blame these parents in this, nor do I intend to criticize them. A fuller explanation is in the concluding segment of this post.
Annabelle Nguyen’s DIPG story
In my first post in this series, I discussed the case of Addy Joy Sooter, a four year old girl from Arkansas who recently died of DIPG after an 18 month course, mainly because an image that her father took of Addy Joy’s older brother comforting on her deathbed went viral a month ago. That image led me to the Sooters’ story, which led me to news stories that mentioned an “experimental treatment” for DIPG in Monterrey without much description, which led me to figure out the name of the clinic and the doctors, which led me to investigate their claims. In my second post in the series, I briefly discussed Annabelle Nguyen, a four year old Vietnamese girl living in Australia, who a few months ago had been touted by Dr. Alberto Siller and his supporters as an example of a complete response, a girl with no evidence of disease (NED), and how the family is now stranded in Mexico because Anabelle’s tumor had recurred and she has lapsed into a coma. Her story is sad and deserves to be considered in more detail.
Perhaps the most succinct description of Annabelle’s initial course comes from a combination of her GoFundMe page and the website that comes up number one for any Google search of “DIPG Monterrey,” Making DIPG History in Monterrey. As I described in both posts, it’s a highly biased website run by a naturopath named Kim Beauchamp, who insinuated that my description of her site as a “fan site” was libelous, a characterization that made me laugh. In any event, here is what happened beginning in August 2015:
Annabelle was diagnosed with DIPG less than a month before her 3rd birthday. Her parents noticed that she was walking differently, wobbling from side-to-side and leaning forward. She also initiated a new bedtime routine of screaming and rubbing her eyes uncontrollably.
They were living in Vietnam at the time, and Annabelle’s first MRI was inconclusive, so they flew to Australia for an emergency follow up scan, which showed a tumor in her brainstem. The medical care in Australia was par for the course for DIPG treatment: radiation, and wait for the inevitable. Annabelle completed 30 rounds of radiation, and then the family returned to Vietnam, where Annabelle’s father Trung took a job with the family business.
The family returned to Vietnam in January 2016, but by May of that year:
While living in Vietnam, Annabelle was treated using acupuncture, Chinese medicine, and qigong. She’d been faring quite well, until a routine scan in May showed that Annabelle was in progression. At this point, Sandy and Trung sought out other options.
They learned about Mexico the way a lot of other families have—through social media. After selling most of their belongings to afford the first treatments, Sandy brought Annabelle to Monterrey, leaving Trung and Annabelle’s 2-year-old sister Alyssa behind. They arrived in Mexico on May 22nd, and Annabelle had had two IA treatments and one immunotherapy at the time we visited with them.
Here we see the extreme similarity to the stories of Burzynski patients with DIPG and other brain tumors. There’s the diagnosis and the shock at how grim the prognosis is. Then there’s the initial conventional treatment. Then there’s the recurrence, after which the family finds the clinic, in this case Clínica 0-19, through the Internet and social media. These days, I suspect that most patients are finding this clinic through Beauchamp’s website, given that it is usually the first hit for Google searches of “DIPG Monterrey” and always high on the list of related searches. Then comes the financial sacrifice, which often involves selling the family home, as the family of an Orlando boy named Alan Vasquez did.
Then there’s the fundraising. So. Much. Fundraising. The fundraising happens on Facebook. It happens on GoFundMe. It happens in the media, particularly in tabloids like the Daily Mail, which frequently post glowing stories about children like Nguyen that help their families to raise still more money. Just like the Burzynski model, Clínica 0-19’s business model relies on the existence of these crowdfunding sites. Without them, few families could manage to fundraise so prodigiously. Crowdfunding sites like GoFundMe and YouCaring are a testament to the inherent generosity and goodness of many people, of their desire to help their fellow human beings, but there’s a dark side. That dark side is that the existence of such fundraising platforms makes the proliferation of clinics like Clínica 0-19 possible and far more profitable given that before only the rich could afford such clinics. It also makes the existence of quack stem cell clinics so much more lucrative, given the prodigious amounts of money that can be raised, as shown in a recent study.
The story continues:
Though Annabelle’s tumor has only shrunk by a small percentage since starting treatment, it shows less contrast, meaning that the cancer cells aren’t as active. This might not seem like a big deal, but this tumor grows aggressively, sometimes killing children in a matter of days to months after diagnosis. So anything that helps slow it down, makes it less active, and shrinks it even minimally is cause for celebration.
Here again, we see another aspect of the story reminiscent of Burzynski patients. Remember Amelia Saunders? Burzynski told her parents that cysts forming in the tumor were a hopeful sign that her DIPG was responding to therapy. I had to explain that they weren’t. Solid tumors, as they grow, not infrequently outgrow their blood supply, so that the central part of the tumor dies and liquefies, which can look more cystic than the rest of the tumor. At this point in the story, I’m getting the same vibe, a lot of handwaving and representing findings as more hopeful than they are, and the same thing could have been happening here. Also, tumors remodel as they grow, and unless the shrinkage is very clear, small differences in size could be misinterpreted as tumor shrinkage when in fact the tumor has not changed.
Then, early this year, stories started appearing about Annabelle, stories like “Australian girl, 5, is miraculously HEALED of cancer thanks to revolutionary treatment in Mexico after doctors gave her just weeks to live when she was diagnosed with an ‘incurable’ brain tumour.” (Yes, it’s the Daily Mail.) The article was horrible, complete with captions like “Annabelle Nguyen (pictured) has been cured of a fatal brain tumour Diffuse Intrinsic Pontine Glioma (DIPG) according to her parents.” It appears to have been largely based on this post by the parents on January 24:
The family shared images from the scans with the newspaper, and you can see them above and in the article. I’m not a neuroradiologist, but first of all there are nowhere near enough images to tell whether the tumor has responded to treatment. (Again, this is a classic Burzynski move being emulated here by Drs. Siller and Garcia.) Second, there’s no way of knowing that what happened with Amelia’s tumor isn’t what’s happening here. Yes, it’s better to have low (or no) PET activity on a PET-CT scan than to have high activity. However, there are a lot of caveats. MRI is the preferred diagnostic imaging test, because, as is explained here, the findings on CT scan can be rather subtle. (Indeed, look at the CT shown here and tell me that it isn’t very similar to Annabelle’s CT.)
Also note this:
Contrast enhancement is seen in the minority of DIPG, and when present is typically mild. There may be some indication of necrosis, and the basilar artery is commonly engulfed by tumor. Hemorrhage and calcification are uncommon.
In other words, these tumors typically don’t light up a lot on MRI. If you look at the PET scans on the same page, you’ll also see that the tumors there are dark (the center part of the images). So, basically, these images don’t tell us anything one way or the other about whether the treatment worked. Yet Dr. Alberto Siller told the family:
Here it is: The tumor that was in Annabelle’s pons is no longer visible on any scan, and there is ZERO tumor activity anywhere in her brain. Because of some residual inflammation, they are not able to say for certain that there is no evidence of disease (NED), but they did say that this is the “most perfect report they have seen.”
Without going over the complete set of images of every scan with a qualified neuroradiologist and properly comparing the last few scans with proper measurements according to RECIST criteria (for anyone interested, this is what I mean), I can conclude nothing of the sort. However, that didn’t stop Dr. Siller from telling the parent that, despite her worsening symptoms, Annabelle really was cured:
So what about the scary symptoms? The PET scans also helped determine the cause of those. Annabelle has some hypoxia (low oxygen) and inflammation in the region surrounding the previous location of the tumor, which are likely causing her balance problems and headaches. She also has an infection in her nasal passages that could be contributing to her symptoms. Both of these issues are treatable, and we are already planning how to address them with her doctors.
Now the reality sets in. We know for certain that this treatment is saving Annabelle’s life. But it is expensive, and we are out of funds. Please, please find it in your heart to help her in any way you can. We would never beg for ourselves, but we are begging for our daughter. We chased this treatment to the other side of the world, and Annabelle has to continue it, especially now that we know it’s saving her. Stopping now would mean certain death, and we cannot let our child die.
Can you imagine the horrible burden that was laid on Annabelle’s parents in late January? Because of Dr. Siller, they truly believed that their daughter was cured of an incurable brain tumor but that if they stopped the treatment the cancer would come back and she would die. Thus, they had to keep going with their prodigious fundraising…indefinitely. Again, at this point, I ask: Even if the CT-PET scan were as Dr. Siller claimed, how do they know how long to continue the treatments? They don’t, because they haven’t done anything even resembling a clinical trial. As for the “hypoxia” and “inflammation,” again, without seeing the full set of images I have a hard time commenting, but I can say that my Burzynski quack sense was tingling something fierce as I read that passage. It’s very possible that Drs. Siller and Garcia were mistaking tumor for inflammation. In any event, this story got plastered all over the UK and Australian tabloid media, with claims that Annabelle had been cured, or at least that her tumor had shrunk away to nothing, all based on this Facebook post.
Three months later, Annabelle’s symptoms started worsening again and she started becoming hypoxic, leading her to be placed in a hyperbaric chamber and to be scheduled for another scan on April 28:
Unfortunately, the news was not good:
Basically, Annabelle’s tumor had recurred—again, I doubt that she was ever rendered NED—and begun to progress, with an additional tumor in her pons, and both tumors extending into her cerebellum. What did Dr. Siller and Garcia want to do?
In our discussion with the doctors about our next steps, they said that they want to move her treatments up to every three weeks. They feel confident that they can get the tumors under control by doing this.
Based on what evidence did they want to do this? Again, none. Any competent oncologist would at this point recommend switching to palliative care, to spare the child as much suffering as possible, but not Dr. Siller. Worse, this new plan heightened the burden and horror placed on poor Annabelle’s parents:
Of course, this brings up many concerns for us. We are worried about the possibility of side effects from treatment. While the drugs target and kill tumor cells, they can also cause unwanted effects, including inflammation. But this is a risk that we have to take.
Which leads us to our second concern: finances. We have been struggling to fund each treatment, and pushing them even closer together means we have to raise more money, faster.
I wish I could express the absolute terror that this brings us. Without this treatment, Annabelle WILL die.
I know it’s so much to ask. I know that we ask again and again. But I have to keep asking.
I am on my knees begging you to please keep supporting our precious daughter. She was on her way to beating this beast before, and I know in my heart that she can do it again. But we simply cannot do it alone.
Here, my sadness and empathy for Annabelle and her parents was mixed with pure rage at Dr. Siller for wanting to double down on a treatment that has no reliable scientific evidence of efficacy, thus cranking up the pressure on this poor couple to come up with ever-increasing sums of money because they believed that doing so would mean the difference between life and death for their daughter. Dr. Siller wasted no time, either. The next treatment for her was on May 1. Three days later:
Yes, poor Annabelle became unresponsive and needed the surgical insertion of a shunt to drain the fluid accumulating in her brain’s ventricles. After the procedure, she was basically unresponsive, in a coma. She underwent an EEG, which showed very low activity. A few days later, Annabelle suffered a collapsed lung, most likely a ventilator-related complication:
A week and a half after her treatment, Annabelle underwent another CT scan:
According to her mom, this showed widespread inflammation. It’s at this point that I can’t help but begin to suspect that the treatment was the cause of Annabelle’s acute deterioration that was overlaid on her previous slow deterioration. Meanwhile, the bills kept coming in, $18,000 for the shunt surgery and her time in the ICU up to that point, with, as I mentioned last week, $2,500 per day in hospital charges.
Annabelle’s Facebook feed becomes increasingly hard to read after this point, full of updates with no change in her condition interspersed with news stories and desperate pleas for funds and posts like this, where her mother resists pleas to “let her go”:
It’s here that we learn from a new GoFundMe page that the cost to bring Annabelle home to Australia would be $220,000 USD and that is the goal of the fundraising page. As of Friday, Annabelle’s condition hadn’t changed:
I’ll update this post when new information becomes available about Annabelle.
Parker Monhollon versus DIPG
Parker Monhollon was a girl from Silver Lake, Kansas, who was diagnosed with DIPG at age 8 in January 2016 and, sadly, passed away almost exactly a year ago in Monterrey. I’m presenting her case because she suffered quite a few complications during the course of her treatments, thus illustrating that Dr. Siller’s treatments are not only unproven and very likely ineffective, but also not benign. Her story is documented on Making DIPG History in Monterrey, her Facebook page, and her parents’ Parker Loves Life website. It also turns out that, like Amelia Saunders did in the UK, Parker became somewhat famous because of her plight. She got to meet Eminem in Detroit through the Make-A-Wish Foundation, for instance, and a campaign was started to get her onThe Ellen DeGeneres Show.
Parker hit social media like a true child of the Internet age, announcing her diagnosis in a YouTube video on January 16, 2016:
Who wouldn’t be saddened by such a video and want to help this girl? The video got some press attention, leading to the Twitter hashtag #ParkerLovesLife to trend and a number of local celebrities, such as Kansas City Royals pitcher Chris Young making an answering video. Meanwhile, Parker posted near daily updates to her Facebook page Parker Loves Life, some from Memphis, where she and her parents had gone to seek treatment at St. Jude’s Children’s Research Hospital.
Here’s her story:
About a week before Christmas, 2015 Amanda and Danny started to notice that Parker’s eyes were looking different, the left one would stray toward the nose when it should’t [sic] be. She asked her sister to check them out on Christmas day and it was decided to get her an eye exam. Amanda had the eye appointment made for January 19, 2016. Meanwhile Parker’s school nurse had contacted Amanda about concerns with Parkers vision. Amanda told her that an appointment has been made for two weeks from then. The next week the school nurse called again and her and Amanda both agreed that Parker’s eyes looked worse and Parker had complained of headache and some double vision by now. Amanda was able to get her in to see Dr. Hefner on Tuesday January 12,2016 and he told Amanda his recommendation is an MRI, to just rule out anything and then hopefully start vision therapy and possibly an eye surgery if needed.
The MRI was finally done on January 15, 2016. A very long 3 days when your [sic] told your child needs an MRI. Parker was able to do the MRI without sedation which we all thought would get us out of there in plenty of time to take her for her IHOP blueberry pancakes, since she had to go with out food until the MRI at 10:30a.m. They originally planned to sedate her for it so this was great news when she didn’t need sedation because she was so brave and laid still so well for it.
Mom and Aunt Missy were waiting for them to discharge us so we could get Parker those pancakes. This is when our world changed forever. The Pediatric Oncologist and Pediatric Intensive Care physicians came to Amanda and said they needed to speak in private. A Brain Tumor was the diagnosis. A phone call to Dad who arrived and was also given the news. We left there thinking an upcoming surgey, [sic] but needed to wait and hear back from a neurosurgeon for their plan.
The next day, Saturday January 16, 2016 we received the news of the type of brain tumor, a DIPG. Now the battle has begun to fight this monster and your support, thoughts, and prayers are very appreciated. #parkerloveslife
Parker underwent radiation at St. Jude’s Hospital, immunotherapy in Germany, a biopsy of her tumor at UCSF—which ended up disturbing the cells and spreading the cancer to her spine, and re-radiation beginning in October of 2016. In November, Parker asked her mom to look into other treatments, as her right side was becoming weaker. That’s when Amanda discovered Monterrey.
Then began the complications, but even so Parker kept making videos with her parents, for instance here before another round of treatment:
Notice how puffy she’s become, almost certainly from a lot of steroids. Of course, this makes me wonder if at this time Dr. Siller still required patients to have been off steroids for months before he would treat them. It turns out that she was on a steroid taper when this happened:
There was leakage from around the stitches of her Ommaya reservoir. An Ommaya reservoir is a catheter system for infusing drugs into the cerebrospinal fluid. It involves a semi-permanent catheter and a reservoir placed beneath the scalp that can be accessed much like a Mediport. Ultimately, as all too often happens when the incision fails to heal, the reservoir became infected:
Of course, Parker didn’t need an Ommya for the simple reason that there’s no good evidence that the Clínica 0-19 protocol is effective and no good clinical trial evidence that using such a system to infuse chemotherapy prolongs the lives of DIPG patients. Consequently, this was an unnecessary complication, much as Mediport and other catheter infections were unnecessary infections suffered by Burzynski patients.
Parker was basically in the hospital for three weeks without having had any treatment for her cancer because of the complications from the Ommaya reservoir that required placement of an external shunt, and she was having problems with her Mediport, which had been placed a year before, to the point where it had to be replaced. Then, she developed pneumonia and had to be placed on a ventilator, and her left eye couldn’t be closed all the way:
Because of the multiple complications and prolonged hospital stay, this next post started to sound a lot like Sandy Nguyen’s posts:
The family’s financial situation was grim:
Our daughter continues to fight and we love her beyond words. However, the fact remains that with all the love in the world we can not continue to stay in Monterrey, Mexico. We are simply out of money due to the 2+ month stay in the hospital. One month in a regular room and another in ICU. Plus, multiple minor surgeries, antibiotic, pneumonia treatments and now a bladder infection.
We plan to get her well enough to travel home. Then we will continue care in KS which will cost us more money. However, the hope will remain that we will keep her well enough to continue another treatment. We are not giving up, we just don’t have the funds to have another treatment after we pay the doctors and hospital bills. She is such an inspiration that we have seen and continue to see…
Unfortunately, it wasn’t long before Parker developed a recurrent pneumonia:
By then, the hospital bill had climbed to six figures. While this is much less than the bill would have been for such a stay in a US hospital, health insurance wouldn’t cover this, leaving the family on the hook for the whole bill. Interestingly, the doctors there decided to do a tracheotomy, G-tube, and Nissen fundoplication to address her recurrent pneumonias. The doctors must have thought they were due to gastroesophageal reflux and subsequent aspiration of stomach contents. The operation basically involves wrapping the upper part of the stomach around the esophagus to make it harder for gastric fluid to reflux up into the esophagus.
The last two posts are beyond sad. The family was still in Mexico. Their daughter had deteriorated, suffering many complications that had cascaded from the initial insult from the infection of the Ommaya reservoir. On July 5, 2017, Parker’s mother Amanda posted that she basically knew her daughter was going to die. Then, she posted this video. I warn you. It’s hard to watch a mother in such distress describing what has to be one of the worst situations imaginable:
In this video, Ms. Monholland revealed that Parker no longer had any brain activity (i.e., she was apparently brain dead) but that the hospital wouldn’t disconnect the life support because, according to her, Mexico doesn’t allow advanced directives or Do Not Resuscitate orders. That meant, according to here, that they were just going to wait until Parker’s heart stopped.
Doing a little searching, I discovered that it’s not true that Mexico doesn’t have a law permitting advanced directives (it passed one in 2008) but that it is true that the law is not well known. It is also true that palliative care is a big problem in Mexico, with few public healthcare institutions offering it, particularly for children. A review of palliative care in Mexico suggests that the doctors there did not give Amanda Monhollon and the rest of the family accurate information when they informed them that Parker’s life support could not be removed after the child’s neurologic function had ceased or even after she had lapsed into a coma with a terminal cancer. That appears to be a hospital policy, not a law in Mexico. I try not to be cynical, but, try as I might not to, I can’t help but wonder if it isn’t a policy that allows the hospital to recover a few days more of hospital charges.
Parker died the next day.
Ever since I first started learning a lot about DIPG seven years ago as I explored Stanislaw Burzynski’s quackery, I’ve come to hate the disease. What I hate even more, though, are doctors like Burzynski and, of course, Drs. Siller and Garcia, who in my view take advantage of the powerful love that someone like Sandy and Trung Nguyen or Danny and Amanda Monhollon have for their daughters, a love that leads them to do everything in their power to save their daughter’s life, even at the expense of essentially bankrupting themselves, raising their other daughter largely in a foreign country, and ceaselessly begging for money because they believe it’s the only thing that will keep their daughter from dying. Add to that the likelihood that the complications from the Ommaya reservoir infection started a cascade of complications that resulted in Parker’s deterioration and distinct possibility that the last treatment that Annabelle underwent on May 1 might very well have been, given her slow deterioration at that time, what tipped her over the edge into a coma, trapping her and her parents in Mexico until she dies, and my disgust knows no bounds.
This is particularly true given Dr. Siller’s arrogance. I will remind you of something he was quoted as saying in an actual positive news articles on him:
“I told an Italian doctor… ‘if you have something to give to your patient better than what we are using, feel free’,” Dr. Siller said.
I also learned from someone who wrote me that Dr. Siller does not like patients’ parents who are a bit too…inquisitive. Basically the story that was related was that a relative had a child with DIPG and went to Clïnica 0-19 for a consultation. Here’s the story as related to me in an email with permission to post it as long as I anonymized everything:
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.
All of these questions were entirely appropriate. If Dr. Siller can’t or won’t answer them for potential patients, he cannot be said to be giving them true informed consent, which is also incredibly arrogant, paternalistic, and unethical, so much so that I strongly suspect that Drs. Siller and Garcia know that what they’re doing is ethically unacceptable and quite possibly know that their treatment does no better for DIPG than conventional therapy and possibly even worse.
I emphasize again here that I do not blame the parents. I never have when discussing Burzynski’s patients, and I never will. I can only imagine what it is like to face the impending death of a child and to be told that the only way to save that child is to come up with hundreds of thousands of dollars for what you come to believe to be the only doctors who can possibly save your child’s life, as I’ve never experienced it. I do, however, blame Drs. Siller and Garcia, as well as the leadership of Hospital Angeles, which profits off of the complications suffered by these patients. I realize that that parents of these children might see this post and that if they do it is likely to cause them pain. However, my goal is to provide a counterweight to the overwhelmingly positive coverage that is out there of this clinic, with narratives of heroic parents selling everything and raising incredible amounts of money to save their brave children fighting a deadly disease. The families and parents are brave and admirable in many ways, particularly for their doggedness, but there is no evidence that the treatments they are pursuing are doing their children any good, and, as you see above, there are complications that can happen, serious complications. This is true of any invasive procedure, which is why doctors should insist on the highest standard of science-based medicine in determining when such procedures are appropriate.
Why do parents do it?
After the publication of my first post two weeks ago, in which I discussed the case of Addy Joy Sooter, Addy Joy’s father Matthew emailed me and posted the email in the comments. Basically, he demanded that I remove the viral photo of his son and daughter from my post, claiming copyright. I wasn’t going to argue with a grief-stricken father over whether my use was fair use (it almost certainly was); so I removed it. His other demand was that I remove his daughter’s story from my post. That was a response that I had to decline as kindly and gently as I could. There was nothing about the story that I hadn’t found on public websites, and, as much sympathy and empathy as I felt for Mr. Sooter, he cannot be allowed to control the narrative.
Mr. Sooter did, however, give me an insight into the thinking of many parents. I received emails from a couple of other parents of DIPG patients treated through Clínica 0-19, and they echoed what he said:
In this article you attempt to do nothing but bash and defame other doctors and the clinic that worked so hard to give my little girl more time on this earth. I understand that this is just what you do and have done with others such as Burzynski and his clinic, but have you ever put forward a better treatment option for these families fighting DIPG, or do you only make them feel like they’re crazy for even trying? The doctors in Monterrey gave my little girl 10 months that the rest of the medical community could not and for that I am thankful. Were those months worth the money spent? Yes. Without a doubt and I’d do it all over again.
And what parent wouldn’t have this attitude if he really believed that the doctors had prolonged his daughter’s life? What parent, if he truly believed that a clinic like Clínica 0-19 could either save the life of his child or at least substantially prolong her life, wouldn’t be willing to go to the lengths to which Mr. Sooter went? Clearly, quite a few of the parents of Clínica 0-19’s parents do believe this, and, given human nature, I realize that there’s no way I’m ever going to persuade them differently. All I could do is to restate my position with respect to Clínica 0-19 and all the other dubious clinics that I write about.
If Drs. Siller and Garcia have really made a significant advance in DIPG treatment, it is a moral imperative that they publish their survival and recurrence data and perform definitive clinical trials to show whether or not their treatment has efficacy. If they are unable to conduct such trials, they should ask for the help of the international pediatric oncology community. In the absence of such data, I consider it immoral of them to charge parents like the Sooters, the Nguyens, and the Monhollons hundreds of thousands of dollars for an unproven treatment that might actually be harmful. That they do not speaks very poorly of them. That they make excuses, claiming that they are too busy treating patients to publish their results, that they have been stonewalling Australian cancer experts who want to visit their clinic and examine their patient records in order to determine their survival is unacceptable. They have been doing this for several years, after all. I don’t expect to convince parents like the Sooters, Nguyens, and Monhollons that I’m not their enemy and that I wasn’t trying to criticize or hurt them. I remain, however, the enemy of quacks and those who would take advantage of cancer patients and their families. I make no apologies for it.
21 replies on “Clínica 0-19 and IDOI: Not making DIPG history in Monterrey (part 3 of 4)”
These stories are just heartbreaking, and the situation these families end up in horrible.
While living in Vietnam, Annabelle was treated using acupuncture, Chinese medicine, and qigong.
To put it another way, she wasn’t treated.
I didn’t notice this in the article from the super secret other site, but in that picture with Annabelle in the bed and Dr. Siller (I think) sitting in the foreground–what is up with that floor?
The one with the post on the EEG results? Looks like an ugly pattern. Tiles of brown with white.
It doesn’t look like a pattern to me. It looks like concrete with paint splashed over it. I do see some rectangular sections but they don’t look very regular.
You’ll notice the lines you can spot are all in the same grid, not random. You don’t see all the lines in the phot because some of the squares blend better than others. Whoever laid the floor did a very bad job.
It looks like tiles to me as well, but the white spots are very irregular, more like dirt or somethink like it. More like a floor for some storage than something in a hospital. I suppose I would run away if I would see such a floor in a hospital, where they should care for a very ill child.
Just FYI this photo looked very different on my phone. So maybe it’s some sort of artifact.
Orac, of all your posts this is my favorite. Sometimes I forget that medical/science journalism is simply your hobby. This three part series of yours presents hard contrasts (lead pipe-hitting hard): emotionally overwhelming medical misfortune for the families, doctors who exploit that misfortune, and the reality that funds for such exploitation are highly likely to increase.
Most impressive to me is your repeated emphasis as regards the lack of evidence supporting this unusual regimen. Dr. Siller and Mr. Sooter ask what do you/we have that is better? A sceptic (and good journalist) should ask how we’d know what is the best treatment, when the exploiters refuse a valid comparison without an acceptable rationale.
Somewhat related: a newly published study on how “complementary medicine” shortens the life of cancer patients:
“In this cohort study of 1 901 815 patients, use of complementary medicine varied by several factors and was associated with refusal of conventional cancer treatment, and with a 2-fold greater risk of death compared with patients who had no complementary medicine use.”
I read that too. Basically, patients using CAM were more likely to delay or refuse standard treatment(s), which had the expected negative impact.
When they adjusted for the treatment actually received, the results were about the same. Which is a broad brush way of saying that CAM doesn’t help with cancer treatment.
Re cancer treatment: why has the Oncology Establishment been so slow to utilize a great breakthrough in therapy announced in 2016? Of course, I’m referring to the use of AC/DC’s “Thunderstruck” to improve cancer drug release:
“Controlling the release kinetics from a drug carrier is crucial to maintain a drug’s therapeutic window. We report the use of biodegradable porous silicon microparticles (pSi MPs) loaded with the anticancer drug camphothecin, followed by a plasma polymer overcoating using a loudspeaker plasma reactor. Homogenous “Teflon-like” coatings were achieved by tumbling the particles by playing AC/DC’s song “Thunderstruck”. The overcoating resulted in a markedly slower release of the cytotoxic drug, and this effect correlated positively with the plasma polymer coating times, ranging from 2-fold up to more than 100-fold.”
I can attest that I feel better when hearing the song, which is all the proof I need.
Oooh, I don’t like this at all: “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.”
So I guess I’ll have to retract my prior criticism of Orac’s part 1 post. My apologies; you might be right about these people & parents should be forewarned.
[…] than as an abstract at a Mexican conference, and there is no way to judge their outcomes. Worse, children have suffered harm. The family of one Australian girl was stranded in Mexico for two months, after she ended up in the […]
[…] and not paid for by the government or insurance companies. We saw it for Addy Joy Sooter. We saw it for Annabelle Nguyen, whose parents didn’t just pay hundreds of thousands of dollars but found their family […]
[…] Clínica 0-19 and IDOI: Not making DIPG history in Monterrey (part 3 of 4) […]
The Sunday Telegraph August 9, 201810:52am about Annabelle Nguyen:
A FIVE-year-old Australian girl seeking experimental treatment for an incurable brain tumour in Mexico died overnight after three months in a coma.
Oh, man . . .
Guess Mom and Dad ran out of money and couldn’t get her home. I found her FB page. Yes, she died August 8th.
That poor family. They were lied to and taken advantage of, and I don’t think they even know it.
It’s probably an unfortunate blessing, since they couldn’t execute any kind of final directive and withdraw care.
Another reason not to go to one of these places.
That’s so sad. That poor girl. Her poor family.
I hope they were able to bring her home in the end.