Last week, I was saddened to note the sad passing of Annabelle Potts, a girl who battled diffuse intrinsic pontine glioma (DIPG) and whose parents took her to a quack cancer clinic in Monterrey, Mexico, Clínica 0-19. In response to my three-part series published in June about this clinic, 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 contact 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 Annabelles 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.
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. It is this love that Drs. Garcia and Siller exploit to profit.