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, 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.

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.

Who Chooses? Parents' vs. Children's Rights

There's a topic that I've touched on a few times over the years here, but I've never really delved into it. It's something that comes up pretty frequently in discussions of children's health, particularly when talking about vaccines or so-called alternative medicine. It's even something that arises around issues of which real treatment a child should receive. I've mentioned it in passing in posts about vaccines (e.g., when talking about why it actually does matter to others if you vaccinate your child, how anti-vaccine people want to change legislation, or how they oppose what they see as government interference), as well as my discussion about a case involving controversy over competing diagnoses. Others have also written about it in the context of cancer treatment. A common element in all of these topics is autonomy: the right to make decisions about one's own healthcare. More specifically, do parents own their children? Do parents have the freedom and the right to do with their children as they please? Or are parents merely guardians and stewards for their children until they are mature enough to make decisions on their own? Where do parental rights end and the child's rights begin?

Recently, this notion came up again in response to a post on Reddit, in which a mother, who is opposed to vaccines and did not vaccinate any of her children, relates how she discovered her eldest daughter got herself vaccinated in secret, much to the mother's chagrin. She asks if she can take any legal action.

The Saatchi Bill, or, How England Could Become Quack Paradise

"Hi. I'm Lord Maurice Saatchi, and I'm trying to help quacks."

The other day, I wrote an open letter to members of the various state legislatures in the United States about so-called "right to try" laws. These laws purport to make it easier for terminally ill patients to seek out and obtain treatment with experimental drugs. The reality is that the laws leave patients in the lurch. State right to try laws simply create false hopes for patients and leave them to take on incredible risks while giving up some of their rights to legal redress. So far, five states have passed right to try laws without any serious critique by legislators. To some degree, I don't blame them. Who wants to deny a patient the right to try anything to prolong their life? Yet those legislators who pass these laws are being far more cruel than any who vote these laws down.

But if you think state right to try laws in the United States are bad, take a look at the United Kingdom's Medical Innovation Bill (HL Bill 48 [full text]), also known as the Saatchi Bill, after its sponsor, Lord Maurice Saatchi. As with right to try laws, the intent of the Saatchi Bill is well-meaning, but the end result is likely to be far more harmful for patients than imagined by the bill's supporters.

An Open Letter to State Congress Members on Right to Try Laws

Dear Members of Congress,

"Right to try" laws, that is, laws designed to purportedly make it easier for terminally ill patients to gain access to unapproved, experimental drugs, have been in the news quite a bit recently. Several state legislatures have overwhelmingly supported these types of bills, with little or no opposition, let alone serious, critical examination. Although advocates of these laws claim to have the rights and interests of terminal patients in mind, much of the legislation, and the long-term consequences, are likely to do more to benefit unscrupulous companies and hucksters while doing little to help, or even increasing the harm to, patients in great need, not to mention legitimate companies.

The driving premise behind right to try laws is that terminally ill patients have nothing to lose by trying unproven treatments, and that they ought to have the right to gain access to those treatments without undue burden. A dominant view among right to try proponents is that the Food and Drug Administration, and the various regulations they enforce, create inappropriate barriers to the timely release of potentially life-saving drugs. Advocates believe that earlier access will save lives, coupled with the belief that the government should not interfere with a patient's right to decide what treatments they wish to pursue.

While right to try laws seem, on their surface, to do nothing but benefit patients, they will very likely fail to do so, and perhaps even harm patients, for a number of reasons.

Case of Justina Pelletier Spawns Dubious Legislation

The intersection of science and politics is a very murky area. While science can and should inform policy and legislation, those who try to legislate science can easily find themselves on shaky ground. To say that politicians ought to exercise great care when introducing legislation that affects the scientific enterprise is, perhaps, a slight understatement. That is especially true when they start trying to dictate what science is and is not allowed. It's even worse when the individual politicians behind the legislation have demonstrated by past behavior that they are, shall we say, science-averse.

That's the case with a recent bill that has been introduced into the House of Representatives by Minnesota's Rep. Michele Bachmann. I won't go so far as to say that Bachmann is crazy or insane, as I'm no psychologist and there's no need to pathologize her particular brand of nonsense, but she certainly has shown that she does not understand science and her conception of the world differs quite profoundly from reality. Whether it's on the subject of evolution, climate change, or vaccines, Bachmann regularly gets the facts wrong. Now she's wading into policy governing research by introducing a bill nicknamed "Justina's Law". In a related vein, Rep. Steve Stockman has introduced what he's calling the "Parental Protection Act". Both bills are vague and stand to do more harm than good.

Forging Potential Harm

In the United States, every school maintains records on the immunization status of its students. Which students are fully vaccinated? Which have medical exemptions? Who get a religious or philosophical exemption for one or more vaccines? In the event of an outbreak of a vaccine preventable disease, these records can be used by the school to figure out which students are at risk and should be kept home until the outbreak is over. Public health officials also benefit from these records, as they can report vaccination rates across the state. This can show which communities may be vulnerable to a disease outbreak and narrow down where investigators need to look for potential index cases or contacts during an outbreak.

I've written before about an instance where parents forged their children's immunization records so they could get into day care. In that instance, the unimmunized children developed chicken pox, creating a small outbreak of the disease that put the other children, as well as two pregnant staff members, at risk of infection. This raised the question of the legal liability to the parents for their actions, handily addressed by The Skeptical Lawyer. No charges were filed in that case, and it's unlikely that any legal actions would have prevailed, according to the Skeptical Lawyer. A couple months after my original post, there was a chicken pox outbreak at a day care center in Alaska's Kenai Peninsula. Just like the earlier case, the parents refused vaccination for their children, ultimately resulting in a small outbreak.

The issues raised by those two events came together recently, again in Alaska's Kenai Peninsula. A nurse at a public school forged parent signatures on four immunization documents, noting in one instance vaccine refusal for religious reasons.

Weaving Ethical Dilemmas

Imagine, for a moment, that a device existed that could recreate just about any experience a person could have. Not like a television, video game or movie. Not even like a virtual reality simulator. Instead, it interfaces directly with the brain, stimulating specific regions to fire so that the user is, at least temporarily, completely convinced that they experienced whatever event was played. Every sight, sound, smell, taste and touch, even the very emotions evoked, all created by the device in the user's brain. Want to climb Mt. Everest from the comfort of your own home? Just run the right program and when it's done, you'll feel like you have. Want to sit on a tropical beach, lounging with a cool drink in your hand and just admire the majestic ocean, waves rolling in to murmur on the sandy shore? Run a different program, feeling completely relaxed when it's over.

That's the premise of a novella I just finished reading, called The Dream Weaver, by Aaron Simmons, who wrote the story as part of the annual National Novel Writing Month (aka NaNoWriMo). The central character is Eric Bram, a fellow who kicked off the technology and producer of some of the best "weaves" on the market. Bram, however, is wracked with guilt as he learns about the growing issue of addiction associated with the Dream Weaver device, wondering what role he may have played in the spread of the problem. Simmons weaves (excuse the pun) an intriguing tale that hints at far more considerations than could fit in the brief tale. So, I thought I'd explore some of the things that came to mind as I read it. Feel free to add your own thoughts in the comments. If you don't want the book spoiled, I suggest giving it a read before continuing on below.

Just Missing the Mark Again, Katie Couric Airs HPV Followup Segment

Back on December 4, award-winning journalist Katie Couric aired a mindnumbingly bad episode of her show Katie. Throwing her credibility and journalistic ethics to the wind, she made her show a platform for the anti-vaccine organization SaneVax, which promotes the erroneous belief that Gardasil, among others, is horribly dangerous and is killing our kids, going so far as to make available a guide on how to blame the vaccine if anything bad happens to your child at some point after they receive it. The episode featured two women, one (Emily Tarsell, National Vaccine Information Center's Director of Gardasil Network Development) who blamed Gardasil for the death of her daughter, and one (Rosemary Mathis, Founder and Director of SaneVax) who blamed a wide range of non-specific maladies that her daughter experienced. Both guests have a vested interest in scaring people away from the vaccine. In addition, one of the primary investigators of the Gardasil (Merck) and Cervarix (GlaxoSmithKline) clinical trials, Dr. Diane Harper, appeared on the show to downplay the effectiveness of the vaccines, stating they only lasted 5 years, while overselling pap smears in such a way that it made the vaccine seem pointless. For the science and reality side of the "conversation", Couric included Dr. Mallika Marshall. Dr. Marshall did her best to point out the facts of the vaccines, but when the entire show was framed to generate fear and mistrust of the vaccine, she had a very difficult time of it.

While others focused on the myriad flaws and errors in the episode, I focused on the ethics, though I did include links to a number of other articles lambasting the show. As a journalist, Couric had a number of responsibilities to her viewers to seek out the truth and report it. Unfortunately, she and her producers opted for ratings. The Friday after the episode aired, someone at the show put up a lukewarm justification for how they opted to do the show. It did not offer any apologies, nor did it correct any of the misinformation from the episode. More criticism popped up, and Couric herself penned a "mea culpa" of sorts on the Huffington Post. It was a step in the right direction, but Couric still didn't go far enough to correct the errors and damage done by her December 4 show. She addressed some, but not all, of the problems the others pointed out, but she skipped over some very important points. To make matters worse, she did it in the wrong venue. Rather than devoting time on her show to the corrections, which would have been seen by the same audience as her original episode, she opted to address a completely different audience: the ones who were criticizing her and already knew what the problems were.

Well, it seems that the well-earned criticism has finally filtered through...kind of. This past Friday, December 13, Couric devoted her "Follow Up Friday" segment to HPV and the vaccines that prevent it.

Followup: Katie Couric Addresses the Criticism...Sort Of

Last week, Katie Couric, award wining reporter and host of her own talk show, Katie, threw journalistic ethics to the wind. She hosted a show on the HPV vaccines, engaging in false balance by propping up two anti-vaccine anecdotes as being not only valid, but equivalent to the scientific evidence supporting the safety and efficacy of the vaccine. The backlash from science bloggers, journalists and the public was fast and brutal, pointing out all the things Ms. Couric (and her producers) did wrong.

When lukewarm justification for the way the show was done appeared on the Katie web site, it was not an apology. It did not correct any of the errors of the show. In short, it failed the ethical obligation to "admit mistakes and correct them promptly". Today, Katie Couric posted an article on the Huffington Post titled Furthering the Conversation on the HPV Vaccine. While it goes part of the way toward correcting things, it isn't quite enough.

Katie Couric Chooses Ratings Over Ethics

The blogosphere, Twitter, even mainstream news outlets have been abuzz about a recent episode of Katie Couric's show Katie. The episode, which aired December 4, 2013, was on the HPV vaccine, a vaccine that prevents infection with a virus that causes cervical cancer, head and neck cancers, warts and so forth. To give you an idea of how Couric and her producers were going to frame the discussion, here's what the teaser said:

The HPV vaccine is considered a life-saving cancer preventer … but is it a potentially deadly dose for girls? Meet a mom who claims her daughter died after getting the HPV vaccine, and hear all sides of the HPV vaccine controversy.

This blurb could have been written by the National Vaccine Information Center. Just like NVIC's recent anti-flu vaccine ad and more generic anti-vaccine billboards, the topic is framed to emphasize fear and distrust of the vaccine. And after watching the show, I agree with the numerous critiques that have been levied at Couric and her producers. The flaws with the show have all been stated very capably, so I'm not going to bother repeating them. Nor will I go into detail about the human papillomavirus or the vaccines that prevent infection. If you are interested in learning any of that, take a look at the links down at the bottom of this post.

Instead, I want to talk about the effect that Couric's show may have, not to mention some of the ethical implications involved.

Sylvia Browne is a Ghoul

On November 17, 2004, an episode of the Montel Williams Show aired, featuring self-proclaimed "psychic" Sylvia Browne and Louwana Miller, who came on the show desperate for information on her daughter, who had been missing since April 21, 2003, a day before her 17th birthday. With no good leads from police or FBI and having spent considerable effort putting up fliers and talking to people, Miller finally contacted the Montel Show after seeing Browne on an episode.

According to transcripts of the episode (e.g., at StopSylvia.com, posted in 2007), Sylvia Browne told the worried mother the worst possible news: "She's not alive, honey." She described the supposed abductor as "Cuban-looking, short kind of stocky build, heavyset" and put his age at around 21 or 22. Browne also asserted that it was only one person, despite witnesses saying they saw Berry get into a car with three men. In an interview with WKYC's Bill Safos, Browne is quoted as saying:

“I think he really had a crush on her,” she said. “And I think she rebuffed him. I think she thought he was harmless enough to maybe drive her home.”

A year and a half later, in early 2006, Louwana Miller died of heart failure. She died with the belief that her daughter was dead.

A Pox on Health Reporting

Science and health reporting in the U.S. can be a bit of a mixed bag. Sometimes, reports on these topics are level-headed, presenting accurate information in the proper context. There is often a great deal of nuance involved. More often, though, news outlets do a less than optimal job. They oversimplify. They leave out important details. They get details wrong. They engage in inappropriate emotional appeals to spin the story, often to the detriment of truthful reporting.

You may have heard in the news, recently, of FrankieElizabeth Staiti, a 5-year-old New York kindergartener who has been barred from school because she has not received the varicella vaccine. The reason? Her pediatrician refuses to give the varicella vaccine to any child who has an infant sibling, believing that the varicella vaccine poses too great a risk, since it uses a live, weakened virus. FrankieElizabeth has a 14-week-old sister. Her mother, Elizabeth Wagner, applied for a medical exemption for her daughter, but it was rejected after the Department of Education reviewed it with her and FrankieElizabeth's pediatrician.

That is the basic story. But there are some problems with the way that a lot of outlets are reporting on this.

Why Do I Do This?

The other day, I received an email from someone via my other site, asking why I do this. Why do I speak out against anti-vaccine myths and put so much time and effort into that site (and this blog), when I state I have no financial ties to any pharmaceutical companies. Is it just a "labour of love because [I am] concerned for humanity"? Where does my passion come from? What intrigued me about this was that it came shortly after my experience with the Vermont Digger and the Vermont Coalition for Vaccine Choice, the latter of whom, along with Laura Condon of the National Vaccine Information Center, accused me of being a Pharma Shill^TM and/or paid by Dr. Paul Offit. And certainly there are hints that the non-vaccinating individual who emailed me suspected that, my honest statements notwithstanding, I really was paid to write and comment.

Just to reiterate, I receive no money or any other compensation from a pharmaceutical company to write about vaccines in any manner. I hold no stocks (unless there happen to be some in the mutual funds in my retirement account, over which I have no control). I receive no checks, dinners, or quid pro quos. A kind fellow by the moniker Eric TF Bat kindly provided me with hosting space on his domain for my AntiAntiVax site for free after several fellow commenters at Phil Plait's Bad Astronomy blog recommended I turn one of my comments into a web site so people would have a permanent place to point people to when countering anti-vaccine myths. I don't know Eric outside of that context. As for my blog, well, it's hosted by Blogger (clearly), which is also free. I have paid for my domain name out of my own pocket. And I use my own free time to write. Some people garden. I blog. So there's my financial situation regarding my countering of myths and misinformation regarding vaccines. I don't get squat, and I would not accept any money from a pharmaceutical company, either, even if they offered it to me.

So, if I don't get paid, why the hell do I do this?

Happy (Belated) Blogiversary

So, I missed my own blogiversary yesterday. At least I remembered it was sometime in February. At any rate, three years ago, on February 5, 2010, I started this blog. Back then, it was name Silenced by Age of Autism. It was an apt name at the time, since my primary intention was to give people a voice to post their comments that the editors at Age of Autism blog censored. I had attempted to engage Kim Stagliano and some of the other commenters over at AoA in reasonable discussion. I followed their commenting guidelines. I kept my tone civil, even though I disagreed with what they were saying, and yet they saw fit to ban me. And even though I asked, I still have not received any answer.

Not that I need one. Age of Autism is an echo chamber of anti-vaccine conspiracy-think. The editors want to give parents who mistakenly believe that vaccines cause autism a "safe" and "comfortable" place to gather. By that, they mean no dissenting opinions; no questioning of the status quo. Such things might make people feel uncomfortable (having their beliefs questioned) and, horror of horrors, it make them actually think, and no one enjoys that. So instead, if it looks like someone can pose a serious threat to the calm, tranquil, hate-fueled environs of AoA, they are silenced. That's how it all started, but things have changed.

Mark Geier On His Last Leg

Dr. Mark Robin Geier, about whom I've written about quite a bit, just can't get a break. Geier is the physician who, after reading a single lab study showing that mercury binds with testosterone when in a hot benzene environment (blogger Prometheus has a good write-up of this), thought that this explained how to treat autism. At the time Geier and his son, David (who has gotten in trouble for pretending to be a doctor), latched onto the two ideas that the mercury in thimerosal and testosterone played a role in autism causation. The former is now discredited, after numerous studies comparing autism rates in children who received thimerosal-containing vaccines and those who did not, as well as failed court cases based on this idea. The latter does have some validity to it, but only insofar as the fetus is exposed to high concentrations of testosterone in the womb. The way Geier, père et fils, decided they could treat autism based on this study that bears no resemblance to the environment of the human body, was to use the chemical castrating drug Lupron to lower testosterone levels in kids, followed by dosing with chelating drugs to remove mercury.

It was this treatment protocol that got the Geiers into trouble, first in Maryland. Dr. Geier was found to have been misdiagnosing autistic children with precocious puberty so he could get insurance companies to pay for his treatment, which also happens to be in violation of FDA regulations. Lupron is not approved by the FDA for use in the treatment of autism, so his spurious precocious puberty diagnoses got around this, as well. At any rate, this protocol, among other problems with how he ran his clinic, resulted in his license being suspended. The investigation also turned up that his son, David, practiced medicine without a license by making diagnoses and prescribing various tests and procedures to patients. The original suspension led to nearly every other state in which Mark Geier was licensed to suspend his licenses. Then in September and October ofearlier this year, Maryland, Indiana and Washington went beyond suspension and permanently revoked his license. Hawaii, Illinois and Missouri, however, have been dragging their feet.

Until now.

Debating Physician-Assisted Suicide in Massachusetts

It's election season. And you know what that means: lots of vague generalities that sound like they mean something, ad hominem attacks, creativity with facts and annoying ad after annoying ad. Oh, and topics that get people really worked up, causing people to heatedly argue with each other, often to the point of intense anger. Many of these really are not worth fighting about and, regardless of the outcome, have little, if any, significance. Others, however, really are important and worth resolving and involve difficult ethical issues.

In Massachusetts, one such ethical conundrum is on the ballot: physician-assisted suicide.

Washington Joins Indiana and Maryland in Revoking Mark Geier's License

 Washington has become the third state to permanently revoke Dr. Mark Geier's medical license. This comes shortly after Maryland finally revoked Geier's licence. The Washington Medical Quality Assurance Commission had ordered Geier and/or his attorney to appear and to produce certain documents. They did not do so in the time frame specified, so by default, Geier has lost his case.

The Commission ordered (M2012-377) on October 4, 2012, that Mark Geier's license to practice medicine in the state of Washington is permanently revoked. He is ordered to hand over all licenses within 10 days and is fined $5,000, payable within 30 days.

Meanwhile, Missouri, Illinois and Hawaii have yet to do anything to stop this man from preying on autistic children in their jurisdictions. This is, however, very welcome news.
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Related Posts:

• Mark Geier's License Revoked - And It's About Damn Time!
• Mark "Castrate 'Em" Geier's License Suspended - Part 7
• The Fall of the Geiers Continues Apace
• Mark "Castrate 'Em" Geier's License Suspended - Part 6
• Complaint Filed Against Dr. Mark Geier in Florida
• Mark Geier Ordered to Stop Practicing Medicine
• Map of Mark Geier Medical Licenses
• Mark "Castrate 'Em" Geier's License Supsended - Part 5
• Mark "Castrate 'Em" Geier's License Suspended - Part 4
• Mark "Castrate 'Em" Geier's License Suspended - Part 3
• Mark "Castrate 'Em" Geier's License Suspended - Part 2
• Charges Levied Against Mark and David Geier
• URGENT: Please Call the Maryland State Board of Physicians About David Geier
• A Close Look at David Geier
• Mark "Castrate 'Em" Geier's License Suspended

Mark Geier's License Revoked - And It's About Damn Time!

Today, Catherina over at Just the Vax, let me know about a development on a topic that I've been covering for quite some time. And the timing of this is rather fortuitous, as this post marks number 250 for me! I couldn't think of a better subject than to enlighten you all on the latest turn for the infamous Dr. Mark Geier, the physician who inappropriately used the precious puberty and chemical castration drug Lupron to supposedly treat children with autism.

What is this latest development? The Maryland Board of Physicians has (finally!) revoked Dr. Geier's medical license.

File this under: about damn time.

And the order that accompanies this is scathing.