Monday, July 25, 2016

Cinema Libre's Philippe Diaz Tries to Bully "Vaxxed" Critic into Silence

Cinema Libre Founder and CEO, Philippe Diaz
Source: Cinema Libre Studio
Apparently, Philippe Diaz, founder, president, and CEO of Cinema Libre Studio, is a litigious bully.

But, I'm getting ahead of myself. Let me back up and start by introducing you to Fiona O'Leary. Fiona is the mother of five children, living with her husband in Ireland. Two of her children are autistic, as is Fiona herself. Several years ago, she became an outspoken advocate for autistic rights, campaigning against quack autism treatments like MMS, chelation, GcMAF, and so on. Last year, she was featured in an Irish documentary called Bleach Cult, which detailed the bleach treatment known as MMS, a protocol created by ex-Scientologist Jim Humble. She also worked with the Illinois attorney general to shut down MMS promoter Kelli Rivera. In April 2015, Fiona and her husband, Tim, founded the charity Autistic Rights Together, an organization of autistic and non-autistic individuals dedicated to promoting the rights and respect for children, teens, and adults on the autism spectrum.

On July 19, Fiona started a Change.org petition to stop the film Vaxxed and its production team (Andrew Wakefield, Del Bigtree, and Polley Tommey) from spreading its anti-vaccine message (e.g., stating that there is no safe vaccine) in the state of Texas, and possibly beyond. The petition notes how the film and its production team are spreading misinformation about vaccines and autism around the country, particularly during the Q&A sessions after some of the screenings. Examples include Polly Tommey telling people that pediatricians are dangerous and should be avoided, Tommey saying that she would never judge parents who murder their autistic children, and Bigtree's urging of anti-vaccine activists to exercise their second amendment right to bear arms in their fight against vaccinations. Fiona also notes Bigtree's comments comparing autistic individuals to chimps and dogs, as well as how the supporters of Vaxxed ridicule autistic individuals who protest the film.

This is where we get back to Philippe Diaz and Cinema Libre's threats. On July 21, he sent a letter on the studio's letterhead to Mrs. O'Leary threatening her with legal action.

Wednesday, June 22, 2016

Vaxxed's Polly Tommey and Del Bigtree Support Parents Convicted of Medical Neglect

Photo: Facebook/Prayers for Ezekiel
When two people become parents, they take on a responsibility to care for and do what is best for their children. It is, by no means, an easy task. There are no handbooks, no guidelines that describe in detail what parents should do in every given situation. Parents make mistakes sometimes, even though they may mean well. Generally, those mistakes are minor, and the incident passes on without lasting impact. Sometimes, they make a bad call that results in something more serious. Again, they may have meant well, and they may have acted as any reasonable person would have done. Hopefully, they learn from their mistake and move on. These types of mistakes can, for the most part, be forgiven. Parents are granted a great deal of latitude in how to raise their children.

But sometimes, sometimes they make an error that is so egregious, so far beyond what any rational, reasonable person would do, that they end up inflicting unforgivable harm upon their children. They stumble into the realm of medical neglect and child abuse. They may still believe that they are not doing anything wrong, that they actually are doing what is best for their child. But those beliefs, nonetheless, result in serious, or even fatal, harm.

Such is the case of David Robert Stephan and his wife, Collet Dawn Stephan, whose negligence resulted in the death of their 18-month-old son, Ezekiel.

Wednesday, June 1, 2016

Measles Doesn't Kill, Except When It Does

There are quite a number of things that people take for granted today, regarding their health, at least in developed nations, like the United States. The majority of the population doesn't think much about the possibility of starving or being malnourished. If we suffer an injury, we can find treatment at a nearby pharmacy or convenience store. For something more serious, medical care is generally not too far away along roads that are kept in good repair. The same thing if we get sick.

There are diseases that we may never see in our lives, anymore, thanks in large part to vaccines. While these diseases may ravage poorer countries that lack the resources and infrastructure to provide a high level of immunization, such as the Philippines, those who live in affluent countries seldom see diseases that were once a common occurrence, let alone deaths from those diseases. This leads to a measure of complacency. Those of us who suffered through vaccine-preventable diseases all too easily think that it was nothing. After all, we made it. We forget, however, those who weren't so lucky, those who are no longer here to tell their story. So it is that we think of diseases like measles as no big deal. We think that it's only dangerous for people "over there".

Unfortunately, measles does not care what we think. It doesn't recognize borders. It doesn't care if you're from the United States, Germany, the Philippines, Pakistan, Nigeria, Brazil. It will infect wherever it can. And it will kill without a care about who you are or what you believe.

Monday, May 23, 2016

The NECSS of Thought and Reality - Year 6

May 13-15 marked the eighth annual Northeast Conference on Science and Skepticism (NECSS). This was the sixth time I've attended, though I almost skipped this year (more on that later). For those who have never attended, NECSS is a joint effort by the New York City Skeptics and The New England Skeptical Society. The conference, once more held at the Fashion Institute of Technology, fills three days of science, critical thinking, and education for attendees on a wide range of subjects. Some topics are geared toward the general public, while some sessions are more introspective, looking at the skeptical community itself. If you weren't able to make it, don't worry; videos from the conference will be posted on the NECSS YouTube channel. You can also get a taste of previous years' conferences from my reviews of 2011, 2012, 2013 (part 1 and part 2), 2014 (part 1 and part 2), and 2015 (part 1, life unfortunately intervened, so I never got around to writing up days 2 and 3).

As always, I like to take this time to summarize what skepticism means, at least to me. Many people have a caricature image of skepticism in their minds as people who simply reject things out of hand, arguing against things simply for the sake of disagreeing. Contrarian would be a better word to describe that. Skepticism, on the other hand, doesn't have to do with what you think, or just dismissing things that you don't agree with. It is how one approaches the world. Skepticism involves questioning claims and investigating evidence to see where it leads, always open to the possibility that what we may have thought was true is actually wrong. When we read something on the internet, whether it's the latest celebrity gossip or questions on the nature of the universe, we use skepticism to evaluate the claims and weigh the quality of the evidence. Skepticism isn't just critically examining others' claims, though. It's also taking a critical look at our own beliefs, and a willingness to change our beliefs to match the evidence, rather than trying to fit reality to our beliefs. As for the skeptical community, we're just normal people from all backgrounds. It's the way that we examine the world around us that brings us together.

Now that that's out of the way, how was this year's conference?

Thursday, April 14, 2016

Medical Child Abuse, An Overview - Part 2

This post originally appeared at The Scientific Parent blog on 4/13/16.

Medical child abuse can be thought of as the flip side of medical neglect; instead of failing to get real medical treatment a child needs, a child’s caregiver seeks out medical treatment that the child does not need, and which may in fact be harmful. While I addressed that in depth in my last post, today, I discuss the complications to this discovery process. What about rare diseases? How can physicians tell the difference? In this post, I address rare diseases, regulations, and mandated reporting issues.

Wednesday, April 13, 2016

Medical Child Abuse, An Overview - Part 1

This post originally appeared at The Scientific Parent blog on 4/12/16.

Recently, I wrote about the case of Justina Pelletier, whose parents are suing Boston Children's Hospital for negligence after the hospital rejected Justina's diagnosis of mitochondrial disorder in favor of somatoform disorder. The hospital staff further suspected medical child abuse, which they reported to Massachusetts Department of Children and Families. I won't go into the details of Justina's case. If you're interested, you can read my original post on the subject, my follow-up post, or my post on the dubious legislation that her case spawned.

Instead, I want to focus on medical child abuse here - what it is, and the difficulties and nuances involved with it. Many parents or other caregivers, and even many health care providers, may not know much about what constitutes medical child abuse. This article will, hopefully, serve as a general introduction and jumping off point for further discussion.

Monday, April 4, 2016

Wakefield's "Vaxxed" Demands Less Safety

"This is not an anti-vaccine movie. We're just going to use ominous imagery to make people scared of vaccines."
- Del Bigtree, Vaxxed Producer [My paraphrase.]
This past weekend, Andrew Wakefield's factitious documentary Vaxxed: From Cover-Up to Catastrophe premiered in New York City at the Angelika Film Center, after being dropped from the TriBeCa Film Festival. A number of reporters and skeptics attended the film, live-tweeting the experience and writing up reviews of the movie afterward. You can read reviews at The Hollywood Reporter, STAT News, The Guardian, The Daily Beast, Indiewire, and others. The central story of the film, such as it is, is William Thompson and the CDC. For background on the saga, please read this reference guide. (As an aside, even though the impetus behind the film is William Thompson, the CDC researcher does not appear anywhere in the film. Instead, the audience is left with only recorded phone calls between Thompson and Brian Hooker. The transcripts were released last year in a book, which was discussed here, here, and here.) The movie alleges that the CDC covered up evidence that vaccines cause autism. However, according to William Thompson's own documents, which Matt Carey has kindly made publicly available at his blog Left Brain Right Brain, there was no cover up.

I have yet to see the film, so I will leave you to read those other reviews. Instead, I wanted to focus on a list of "demands" at the end of the film, helpfully posted by a Wakefield supporter on Twitter. The four demands would do little to help children or people with autism and would instead run counter to what the anti-vaccine community wants.

Thursday, March 3, 2016

The Case of Justina Pelletier Still Requires Nuance

It's not all that regular that I venture away from the topic of vaccines. I should do it more frequently (and there is one topic I really want to write about if I find the time), but for the most part, I stick to immunizations and the anti-vaccine movement. Now and then, though, I do venture onto other, rather more nuanced subjects. There are certain areas of medicine and ethics that are far less clear cut than whether or not vaccines are safe and effective. For instance, what happens when parents and doctors disagree about a treatment plan for a child? What rights to the parents retain? Can there be questions about who is acting in the best interests of the child? Can a parent's wishes trump their child's preferences?

Two years ago, I wrote about the rather complex case of Justina Pelletier. This was a case involving a teenage girl caught between two competing, and controversial, clinical diagnoses: mitochondrial disorder and somatoform disorder. Her story is back in the news, but before I dive into the new developments, some background is in store.

Thursday, February 18, 2016

Undisclosed Conflicts of Interest in Vaccine Research

Conflicts of interest (COIs) are very important considerations in research. The most obvious COIs are financial; the researcher may receive financial gain for one result versus another, or they will at least avoid losing current or future income if they get a specific result. But COIs could also be non-financial. Perhaps they have family or close friends that would prefer one outcome versus another. Or they might hold a volunteer position of authority in the sponsor's organization. Whatever form they take, COIs may not necessarily invalidate a study, they hold the potential to influence scientists' behavior during a study, their analysis of the data, and the conclusions they draw from their research. Sometimes, the researcher may not even be fully aware of the influence of their COIs on their work. Blinding can help reduce the influence of conflicts of interest, but any COIs must be disclosed so that anyone who reads the study can think about how they may have influenced the study design, the methods, the analysis, and the conclusions.

When it comes to published research, most journals require authors to disclose both financial and personal relationships with other organizations or people that could bias their study. Failure to disclose COIs can be grounds for refusal of a manuscript or retraction of a paper that has already been published. It can really damage the researcher's reputation, but it can also harm the reputation of the journal.

This all brings us to a study that was originally published as an uncorrected proof in the journal Vaccine, and later withdrawn by the journal: Behavioral abnormalities in young female mice following administration of aluminum adjuvants and the human papillomavirus  (HPV) vaccine Gardasil, by Rotem Inbar, Ronen Weiss, Lucija Tomljenovic, Maria-Teresa Arango, Yael Deri, Christopher A. Shaw, Joab Chapman, Miri Blank, and Yehuda Shoenfeld.

Tuesday, February 16, 2016

69 Doses and Matters of Trust

The other day, I wrote about the incorrect claim that there are 69 doses of vaccine on the U.S. recommended childhood immunization schedule. That claim has morphed into 71 (or 72 [Edited to Add (2/24/15): apparently, anti-vaccine groups are now dishonestly claiming 74!]) doses since the publication of the 2016 schedule, which added the Meningococcal B vaccine for at-risk individuals, as well as those for who would like to get the vaccine and their doctor agrees it is indicated. The MenB vaccine has not yet been added as recommended for all individuals. At any rate, I had hoped that my post might help those repeating the "69 doses" claim realize that they were mistaken and misled by whomever they heard the claim from (e.g., @VaxCalc has been quite busy on Twitter, spouting out that claim on an almost daily basis, despite being told that it is incorrect). I've share the post with a number of people on Twitter that have repeated the claim. As yet, I have not had a single person admit that the claim is wrong. Mostly, they try to come back with rationalizations, which really misses the point of my post.

So what's behind the misunderstanding? What point was I trying to make?