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.

Medical Child Abuse or Rare Disease?

While some cases of medical child abuse may be easier to identify (such as when the caregiver tampers with medical equipment), there may be considerable difficulty differentiating between fabricated illness and a rare disease. Rare or emerging diseases may not have clear, objective tests to diagnose them, or the tests may not yet be sufficiently robust for accurate diagnosis. Doctors may lack the expertise to identify a rare disease, as well, and may suspect abuse where there is none; the child may actually be sick because of the disease.

There are several features that have been identified for medical child abuse that are also seen in parents of children with legitimate, if rare, diseases:
  • They often seek multiple doctors
  • They may be well-versed in medical terminology
  • They may seek to raise funds and/or sympathy from others
  • They may be particularly assertive in asking for more extensive testing
  • They insist on remaining with their child as much as possible
How is a doctor to differentiate between a devoted, loving, and fierce advocate for their child and a parent who is harming their child by seeking out unnecessary medical treatment?

It creates a very dangerous line for the health care worker to walk. If they fail to recognize the rare disease and incorrectly report abuse, the child may continue to suffer or deteriorate from lack of treatment, and the family member may face significant social and legal harm. If the health care worker fails to recognize abuse, they may not only contribute to further unwittingly harming the child, but once released to the caregiver, they are at risk for continued abuse.

Unfortunately, the lack of knowledge of rare diseases can not only make it hard for parents to find adequate help for their child, but it can also provide a ripe landscape for medical child abuse. The caregiver may gain a great deal of knowledge about a rare disease (e.g., mitochondrial disorder) and fabricate or induce symptoms in their child to simulate that disease. Without proper expertise, physicians may not notice discrepancies between the symptoms as reported by the caregiver and the known symptoms and presentation of the disease.

These challenges highlight the importance for doctors and nurses to have clear and open communication with each other, as well as for doctors to review medical notes from previous physicians rather than relying solely on the caregiver's account of prior care. Getting as complete and accurate a picture is vital to properly diagnosing the cause of the child's symptoms, and to determine whether it is a real disease or fabricated.

Mandated Reporting

All 50 states require, by law, certain classes of individuals to report suspected cases of child abuse to state officials. Mandatory reporters include doctors, nurses, and other health care workers. It is a duty that they take very seriously. They are dedicated to ensuring the well-being of their patients, first and foremost, and the stakes are very high. Incorrectly diagnosing medical child abuse holds the potential to cause serious emotional and psychological trauma to the child, or, in the other direction, it may lead to continued abuse from the child's caregiver, and possibly even death. Furthermore, if a clinician or other health care worker reports medical child abuse, whether they are right or wrong, they put themselves and the hospital in the legal crosshairs of the family. It is not a diagnosis to make lightly.

There are no objective standards by which a report must be made, and when a report must be made can vary between states. Most, however, require the reporter to make a report when they suspect or reasonably believe that a child is being abused. They must make a judgment call based on the evidence they have at their disposal.

The Focus is the Child

Remember, though, that the focus of medical child abuse, or caregiver-fabricated illness in a child, is the child and the alleged abuse's effect upon them. Do the caregiver's actions result in the child being harmed by inappropriate or unnecessary medical tests and treatments? It does not matter what the caregiver's intentions or motivations are.

They may be doing it for attention themselves, to paint themselves as a martyr.

They may be doing it out of malice toward the child.

Or, they may excessively worry about inconsequential health issues in the child, such as a cough or minor rash, or make up symptoms in order to get medical treatment they think their child needs; while their intentions maybe good, their actions ultimately result in the harm of the child.

The first step is to stop the harm to the child. That will almost certainly require that the child be separated from the caregiver, and possibly other colluding family members, for some period of time. [Edited to add: please note that this is specifically in reference to treating medical child abuse, i.e., once the diagnosis has been made and other causes, such as rare diseases, have been ruled out.] Treatment may include medical care to correct any damage done by previous treatment, as well as psychological care to address any mental harm that resulted from the abuse. It will also include therapy for the caregiver and other family members, to help them identify and be aware of abusive behaviors. This is the step where understanding the caregiver's motivation can be most helpful, since it can help clarify what course of treatment is required. Ideally, the child will eventually be reunited with their caregiver, though this is not always possible. Some caregivers may never admit that they are responsible, or they may not develop the skills to recognize and manage their own needs to avoid future abuse.

Responding to Medical Child Abuse Allegations in the Media

When you read about a case involving an allegation of medical child abuse, understand that you need to approach it with a great deal of nuance and caution. It is an almost certain guarantee that you will not have all of the relevant facts available to you.

While the family is free to say whatever they like about the case, the medical providers are restricted by Federal law from discussing the details.

It is easy to react without thinking and cast blame on the doctors, especially when details are scarce or only come from one side of the issue. We see an emotionally distraught parent asking us for sympathy, and we want to comfort them. We understand how it would feel to have our children taken away from us. We want to believe that parents would never do anything to hurt their children, but it does happen. That emotional parent may truly be upset and want their child back, yet still be the cause of their child's illness and harm. The pleas may be a facade, designed to evoke sympathy and attention for the caregiver, rather than an actual attempt to help the child.

Above all, remember that we all, parents and health care providers alike, want what is best for the child. Take steps to learn more about medical child abuse and the signs to look for. It may just save a child's life.
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References and Additional Reading

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?

Monday, February 1, 2016

The Precautionary Principle to an Absurd Degree

Every now and then, we hear about some event in the news. Sometimes it can cause unjustified panic, like when people in the U.S. started panicking about Ebola virus, despite the risk to the average American being next to nothing. Other times, it can cause realistic concern, such as we see among the people of Flint, Michigan, or among members of communities where there are disease outbreaks. Reactions to these events run the gamut from the rational to the irrational and absurd. There is always an emotional component, but how much we let our emotions or our reason dictate our responses influences where we fall on the spectrum. Do we panic? Are we reasonable? Callous? Compassionate?

I was reminded of this today through an interaction with someone on Twitter (which lately seems to be a rather fertile spot for blog material). Self-described libertarian and stay-at-home dad, @CalypsoWaxed linked to a story in the Daily Mail, apparently in an attempt to scare people about vaccines.

Despite the Mail being known for rather sub-par reporting and being prone to sensationalism, I gave the story a look. The title says a fair bit, "Paramedics called to secondary school as pupils fall ill and collapse after being given their vaccinations".

Monday, January 18, 2016

69 Doses...or Is It 53? Or Even Fewer?

Please note additional edits to this article, particularly those added after 2/3/16, with the publication of the new 2016 recommended schedule.
 
My deepest apologies to my readers for this rather long spell without any new posts. Work and real life both got rather too busy for me, and I just did not have the time or energy to write. It certainly isn't for a lack of topics. I have a couple that I would really like to get to, including at least one request. But to get back into the swing of things, I thought I'd start with something pretty easy.

The other day, I got into a discussion on Twitter with a naturopath by the name of Stephen M. Gibson. He caught my eye because he appeared to be using my post about package inserts to suggest that they are evidence that vaccines cause harm. Now, vaccine package inserts do list adverse reactions (i.e., something known to be caused by the product) discovered during clinical trials. They also include adverse events (i.e., something that occurs after using the product, but may or may not actually be caused by it) reported to the manufacturer after it has been put on the market. I tried to get Mr. Gibson to let me know which specific injuries he was concerned about. The best I got was him referring to Section 6 of the inserts (which, again, includes reports of things that are not necessarily caused by the vaccine) and that he's opposed to "Any. And every" bit listed in Section 6.

Click to enlarge.
But it wasn't his misuse of my post that really grabbed my attention and prompted this post. Rather, it was his claim that he has "read and studied the 69 vaccines package inserts in the Feds recommended list":

Click to enlarge.
Sixty-nine package inserts? Really? Where did he get this number?

Tuesday, November 17, 2015

Locked in Ignorance

The other day, I got into a discussion with someone calling for Congressional hearings on the DeStefano 2004 study that is the latest to-do in anti-vaccine circles. I won't go into the background; you can read about it here. Instead, I'll just present the Storify curation of tweets. My interlocutor just didn't understand what she had read. There is nothing wrong with that. We all have areas in which we lack the requisite knowledge to fully grasp the subject. The real trick is figuring out where we are ignorant and put in the effort to learn and grow. I'm presenting the whole conversation here in the hopes that others might learn from it. It's a bit long, but it gives a good pictures of how our preconceptions can lock us into a state of ignorance.

Here are a few resources for your reference as you read through this.
Ignorance is not bad, unless we make no effort to overcome it. Being wrong is not bad, unless we do not accept that we are wrong.