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West coast no refuge for unvaccinated

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Last year, I explored a Frontline documentary on vaccinations, and the traveling crew visited a Washington city to hear from parents who opted out of vaccinations. The Seattle Times via the Associated Press published a spiritual follow-up that studies Washington kindergartners from the 2009-10 school year, and discovered that six percent of students were missing at least one vaccine that is required in virtually all other states. The most commonly skipped vaccine was chicken pox (a vaccine that could have saved me an inconvenience, I carry scars from my bout as a child).

The number of school children fully vaccinated has steadily declined in Washington since 1997. A state law enacted in July is aiming to close a loophole that allowed parents to avoid providing proof of vaccination at schools. Accordingly, diseases prevented by vaccines are also increasing, with over 600 cases of whooping cough reported in Washington last year, more than double the 2009 rate. Nothing has changed about the concerns of vaccines, with apprehensive individuals pointing to data from the National Vaccine Injury compensation showing an estimated $2 billion has been paid out in cases claiming problems associated with vaccines. Scientists counter that it’s hard to prove cause and effect with the millions of vaccinated individuals with no long-term health problems, but doubt remains with some parents arguing doctors can’t prove vaccinations didn’t influence an autism diagnosis.

The article is simply the latest chapter in the vaccine debate I’ve explored heavily on this blog, but the Washington saga underscores the shift in people not fully vaccinated from the economically disadvantaged to well-educated parents who do their own research, which isn’t necessarily conclusive or even unbiased. The Frontline episode, “The Vaccine War,” explained how celebrities and other notable names can drive beliefs even without scientific backing, with Jenny McCarthy’s views on autism making headlines a few years ago (her book details how she “rescued” her son from the disorder). Worth repeating, vaccines are so effective at stopping previously perilous diseases that many of them have resurfaced only recently as a result of decreasing immunization rates. Parents have more time to be “nit-picky,” which means more opportunities to develop emotionally charged theories that carry little scientific weight. However, with feelings and emotions usually a stronger bond in the human psyche than facts and figures, concerns about vaccine safety will likely continue to remain difficult, if not impossible, to immunize.

Gauging the tipping point is difficult to ascertain with regard to time and intervention, as Washington’s state law now requires parents to meet with medical providers and provide proof a consultation took place. I doubt anyone in the scientific community is wishing for an outbreak to convince doubters with potential implications to the public’s health and media coverage, but general reporting on the vaccine controversy is growing to a tired cycle of studies disproving a link and worried parents whose beliefs can interfere with knowledge. I’ll continue to analyze the relation given its prevalence in mainstream media, but a fresh avenue could be traveled by examining attempts to reach out to critics beyond rehashing the benefits to reporters seeking to fill space or time in the news circuit.

Quest for autism’s “holy grail” engulfed by maze of treatments

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Dr. Mark Geier. Photo by Jed Kirschbaum, The Baltimore Sun

As Andrew Wakefield continues to press forward with the vaccine link controversy (which is now being compared to other political debates where opponents repeatedly deny what almost all research suggests), the battle to address the autism spectrum in children found another metaphorical maze in Maryland. In a story originally published by The Baltimore Sun and syndicated by Los Angeles Times, a Maryland doctor sought to regain his medical license after suspension by the Maryland Board of Physicians. The doctor, Mark Geier, uses an alternative form of autism treatment with no scientific backing, injecting patients with Lupron, a drug approved to treat prostate cancer in men and endometriosis in women.

Geier believes testosterone is elevated in autistic children (and a study I discussed in my blitzkrieg of posts last month concurs with his opinion) and worsens the vaccine-related mercury toxicity they believe is causing autism in children, which is why he uses Lupron, as the drug suppresses testosterone production. However, the Maryland Board of Physicians reported that Geier placed children at risk with improper diagnoses and misrepresenting his credentials.

Geier’s branch is small in the story’s “tree.” Frank D. Roylance and Meredith Cohn, the writers who penned this story, summarize a point previously covered in mainstream press coverage but quantify what is known inside the autism community: the slow pace of identifying causes and effective treatments for autism lead to a proliferation of unproven treatments that grow wildly in popularity (the gluten and casein-free diet is one example). 38,000 families participating in a database at the Kennedy Krieger Institute in Baltimore have reported 381 different treatments. Families use five treatments simultaneously on average, spending around $500 per treatment. Do the math, and that’s $2,500 a month and $30,000 annually. Compounding the problem, a source from Kennedy Krieger’s Interactive Autism Network says only 10 percent of autistic children are enrolled at IAN or other research studies.

Roylance and Cohn highlight the low percentage by including three parent perspectives. We hear from Alison Singer, who was featured in Autism Speaks’ Autism Every Day and is co-founder of the Autism Science Foundation. While she tried several alternative treatments for her autistic daughter, she now advocates any new treatment should seek for a scientific study. Other mothers shared their experience with alternative treatments, and ultimately refused some because they lacked scientific evidence.

Despite the small percentage of autistic children enrolled in research studies, data from the IAN project is helping identify widely-used therapies so they can be subjected to scientific testing. Although science is not always accepted (the vaccine controversy still burns despite a mountain of evidence disproving a link), finding treatments proven to work can reduce the likelihood of parents making irrational decisions about their autistic children. Based on Kennedy Krieger’s data, a lot of irrationality exists. With families giving their children an average of five treatments for autism simultaneously, even if those treatments mitigate the symptoms of autism spectrum disorder, there’s no way to decipher which treatment actually works. With the money and time invested in so many treatments without scientific backing, little discussion is needed to explain why researching treatments should be a priority.

As the Kennedy Krieger source states, telling parents not to pursue any interventions without scientific support is impractical. Instead, the goal is encouraging families to avoid rash decisions that lead to children receiving a multitude of treatments. Emotional responses are road blocks to such a strategy, and Roylance and Cohn use their sources to explain why logic is sometimes discarded: vulnerability is high when parents first learn of an autism diagnosis. Since most parents will instinctively fight for their child’s success, and many lack an understanding of autism when they first hear of the disability, their susceptibility to doctors claiming to have a solution increases.

Geier’s treatment and recent suspension were subjects of recent stories, as two links appear as related articles to the investigative story filed by Roylance and Cohn. Using people like Geier as a springboard to a deeper story is a commonly-used tactic when resources and news editors allow reporters to execute the strategy. Treatments for autism are ripe subjects for story exploration because supposed techniques have exponentially increased. Most individual treatments without scientific evidence aren’t usually covered in mainstream news. Even if a treatment allegedly works on an autistic child, that technique can only represent a theory, not fact. The lack of scientific proof in alternative interventions can leave reporters in a precarious position with an autism community eager for awareness. However, Geier’s recent coverage opened the door to this realm of the autism spectrum while allowing Roylance and Cohn to filter the story and not create an impression of advocating alternative therapies themselves. Thanks to their reporting, we learn why Geier and other doctors can gain popular support: many parents of autistic children are rarely at the forefront of finding answers. Explaining why few parents involve their children in research studies is difficult, outside of simple impatience, but the low percentage of children in research studies should not be attributed to laziness.

Roylance and Cohn don’t suffer from laziness either. Readers unfamiliar with Geier are briefed on why he’s in the news, and they use parental perspectives to validate the analysis presented by Kennedy Krieger sources on the proliferation of autism treatments. Readers on top of autism coverage also gain a new perspective from the parental point of view. While emotional volatility is almost a guarantee for parents who learn of their child’s autism diagnosis for the first time, that mental state is transferred to research, regardless of what choice is made with alternative treatments. Roylance and Cohn could also open another door by highlighting the lack of involvement of autistic children in research of treatments. They didn’t specifically list how to enroll in research studies, but other reporters could piggyback on that subplot.

In face of ridicule, Wakefield fights for his theory

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Photo by Shaun Curry, Getty Images

The start to the 2011 calendar year was rocky for Andrew Wakefield, whose study was declared false by British journalist Brian Deer, who published several stories in the British Medical Journal highlighting Wakefield’s alleged false claims and unethical practices. Deer compared Wakefield, who lost his medical license after his study linking M.M.R. vaccines to autism was retracted last year from the medical journal Lancet, to a religious leader who occasionally uses the smoke and mirrors technique to goose the faith of his followers.

Deer’s investigation was one of many facets spilled out in an article by Susan Dominus for The New York Times Magazine, a longhand form of the country’s most recognizable newspaper. As with any form of magazine writing, the stories take on the form of novels and are more descriptive, too descriptive for me to summarize in shorthand form. That’s no reason to turn away though, as Dominus provides an insight on Wakefield no American reporter has offered before. Through her journey interviewing and shadowing Wakefield, we learn that Wakefield himself didn’t claim proof that M.M.R. vaccines were causing autism, but that didn’t stop his concerns from spreading worldwide the same way viruses spread through the body until its defense mechanisms can suppress it. If recent media coverage is any indication, Wakefield became one of the most reviled doctors of his generation, receiving blame for starting a panic that led to the resurgence of diseases long squashed by vaccinations.

Despite the wave of damning evidence which has led him to close himself professionally, he still draws followers, as 250 attended a discussion he conducted regarding his work. His supporters view him a hero when nearly everyone else paints him as a villain. Wakefield himself believes public health officials and pharmaceutical companies pay bloggers to post vicious material about him. Throughout the story, Dominus compliments Wakefield’s persuasive skills, even when the audience knows better. Wakefield continues to fight and promote his theory, with Dominus adding that the more he has sacrificed (he resigned from London’s Royal Free Hospital following his publicized concerns and now lives in Austin, Texas), the more he must believe in his theory, or all efforts will be rendered useless. Ironically, medical experts suggest aggressive studying of the M.M.R. vaccine following Wakefield’s 1998 media splash means the vaccine is one factor than can be ruled out in a disability still shrouded by mystery.

Dominus assures the readers that she isn’t necessarily siding in Wakefield’s camp, but she does give him an opportunity to present his case as other reporters who interview Wakefield quickly write him off as a discredited liar. By not falling into the dramatic trap that can detract storytelling from other outlets, readers of this story see why Wakefield continues his battle for reputation with his supporters waiting in the wings to back him up. We even learn a few personal anecdotes about his life before gaining his notorious status in Great Britain and most of the United States.

In order to obtain the behaviors, characteristics and traits Dominus lists regarding Wakefield, interviewing goes well beyond the simple press conference or brief one-on-one interview. Traveling with the source and immersing in the source’s comfort zone is common, and more relationship skills are needed to ensure you get the story requested in your assignment. In the case of Wakefield, encountering Dominus and her approach may have been more comforting since she offered a value other reporters decided to box away, even though she was no less neutral than shorthand writers covering the Wakefield saga. Ultimately, Dominus reveals the basis of Wakefield’s support comes from parents seeking answers who credit him or his associates for trying a possible solution, even if the strategy is cautioned by others (including casein and gluten-free diets, a media craze for a short time).

Magazine-style writing allows writers like Dominus to include more details and examine many subtopics of a story that traditional news articles can’t provide because of space or time constraints. Her observations may not remove Wakefield’s “villainous figure” in the eyes of the medical community, but just as the Marvel Comics movies emphasize human elements within their villains, Dominus’ story leaves Wakefield less clear-cut than previous mainstream glimpses portrayed him.

Seizing a link between autism and epilepsy

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A new study published in the May issue of Epilepsia shines more light on the link between autism and epilepsy. The findings were picked up by multiple media outlets, including WebMD and U.S. News and World Report, where health reporter Jenifer Goodwin once again broke down the results. Researchers who looked at records of 127 patients aged 3 to 49 who were autistic and had at least one seizure over a 20-year period at the NYU Comprehensive Epilepsy Center in New York City. They found 34 percent of those patients had treatment-resistant epilepsy, meaning seizures continued despite taking medication. 28 percent were seizure-free after treatment and the remaining 38 percent could not be categorized because there wasn’t enough information to determine if their seizures were treatment-resistant or not. The average age of the first seizure in treatment-resistant epileptics was also significantly younger than those whose seizures were treatable (6 for TRE patients versus 11 for patients without TRE). Autistic TRE patients were also more likely to suffer impairments from autism spectrum disorder, as 54 percent of TRE patients had motor skills delays versus 35 percent for those with treatable epilepsy. Autistics with TRE were also more likely to experience developmental regression, which is sometimes noted among parents or other observers following their autistic children. The study’s author, Dr. Orrin Devinsky of the NYU Langone School of Medicine and director of the NYU Comprehensive Epilepsy Center, suggested autistic children may need screening for epilepsy in order to learn more about the connection between the two conditions.

Goodwin has been busy making sense out of study numbers the last couple days. Unlike her last story about a survey of parents on vaccinations and their trust with different sources, Goodwin uses more figures in the autism/epilepsy study to highlight patterns suggesting epilepsy may be more common and severe when it targets autistic people. For those of you wondering why the study sample is small, recall that autism itself is still statistically rare and some people who may be on the spectrum may not have an official diagnosis. Likewise, the number of epileptics in the world is less than one percent, meaning the statistical odds of encountering an autistic with epilepsy are slim. The results of Devinsky’s study will likely spur more investigations on the link between epilepsy and autism if none weren’t already underway, paving the way for more insights on autism and epilepsy or perhaps presenting other information that may not agree with the study Goodwin reports about.

Remember the inverted pyramid I’ve been talking about for the last few posts? It’s hard to miss in this story, with the first piece of data highlighting the percentage of autistics with TRE, then going into other data relating to autism spectrum disorder, then tying the study with the Journal of Child Neurology publication suggesting epilepsy is more prevalent with autistics than previously thought. She does grab a few quotes from Devinsky, the study’s author, but most of the story spells out the study results. That technique is common with stories on studies as reporters follow their deadlines and, depending on the location or mission plan of the news organization involved, finding the human interest source is hard to find with the low odds of a person diagnosed with both autism and epilepsy.

I’m not an epileptic, but I have read about autistic children and adults suffering from seizures in my observation of autism articles and videos. Neither autism or epilepsy may be curable, and the study only begins to excavate a relatively unexplored area of the autism spectrum. With autistics already facing prospects of sensory overload on a daily basis, making the leap to seizures isn’t a stretch. Seeing more stories linking autism and epilepsy should be expected in future media coverage, but knowing when more reports will file in will be a harder task.

100 stories for autism surveyors

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Traffic to The Autistic Journalist has skyrocketed once more after I returned from my three-month hiatus, and thanks to your support and the constant stream of articles I find, you are currently reading my 100th post since I activated the site in January 2009. The journey of archiving and analyzing how journalists report on the autism spectrum has allowed me to examine autism and reference what I’m discussing instead of simply going off my own observations. Since my first post, this site has recorded more than 12,000 visits and two syndications with Autisable and Disability Resource Exchange. I’m grateful for this outreach so far, but I doubt they will be the only ways of spreading my message.

Speaking of messages, two surveys whose results were published in the May issue of Pediatrics and picked up by U.S. News and World Report found that 93 percent of parents who participated had or were going to get all recommended vaccines for their children, while 76 percent said they trusted their doctors a lot. However, 24 percent of respondents said they placed trust in what celebrities say about vaccinations, which segued to autism activist Jenny McCarthy, who is known among the autism community for her opposition to vaccinations despite numerous studies refuting a link and the official retraction of the study that initiated the controversy (some of those stories are featured on this very site).

Dr. Gary Freed, one study author who is also the director of the child health evaluation and research unit at the University of Michigan, cautioned giving too much credit to celebrities who may not share the same background as researchers do. Freed was quoted saying there is a danger in the media of putting up celebrities as experts for any topic they have an opinion on, even though they have no expertise in immunizations or infectious diseases.

The second survey highlights a second obstacle that was explored by PBS’ Frontline documentary on vaccinations last year. 22 percent of those respondents said they were concerned about their child receiving too many vaccinations and the potential for damage to a child’s immune system (some vaccines, including flu shots, will use dead cells of the virus for the body’s immune system to absorb, allowing cells to fight off active versions of those viruses). Freed said that even if parents feel uneasy about their child getting poked often and early, that shouldn’t dissuade the notion of staying on schedule with vaccinations since many diseases they protect can be lethal for children and cause outbreaks for everyone else; Minnesota has been fighting a measles outbreak in recent weeks.

Jenifer Goodwin, the reporter who published the U.S. News study, faced a difficult proposition by covering two studies based on survey questions. One can be tricky enough for the audience to consume, as many stories that report poll figures will throw out a lot of statistics. Goodwin found an effective way to include both by finding one of the study authors and a second researcher who specializes in pediatric care for infectious diseases to spell out what the numbers mean. Not all writers do this when they recap poll numbers. Goodwin used her lead to highlight the biggest finding from the surveys, the overwhelming majority of parents who will follow the recommended vaccination schedule for their children, and quickly tied that to the ongoing controversy of the vaccine-autism link.

Some readers will read the first few paragraphs and then skim through the rest of the story, which is why print writers often employ the strategy Goodwin executes in her piece: the inverted pyramid. The inverted pyramid promotes placing the most important details of a story first, then include relevant but less necessary data in later paragraphs. While the web and various forms of blogging means writers don’t have to be as rigid with the format, the inverted pyramid remains a common form of print journalism and won’t stop being taught in workshops and classes that teach the craft.

Regarding the surveys, my biggest curiosity was the story reporting women and Hispanics being more likely to trust celebrities of the 24 percent that said they trusted them for vaccine information. Women cover just over half of the population and will have many backgrounds in their family lineage, while Hispanics are a growing segment of the American population that doesn’t rule out men believing what celebrities have to say. To gauge why the two responded the way they did would require a psychological expertise I don’t have, but we do see women more often for autism stories than men when it comes to the personal experience. Even the article from my last post on Holly Robinson-Peete spent the entire duration on her efforts, even though she and her husband are both involved in autism awareness. I’ve heard anecdotal suggestions that women are more enticing for autism stories because of their increased likelihood to display more volatility with emotional output, while men continue to live with the assumption they must be “tough guys.” Nothing is linear, of course, and families, researches, and other caretakers familiar with autism are well aware that support isn’t limited to the female gender.

There is potential for a follow-up story with the Hispanic community and autism (which would require a more complete perspective than their belief in celebrities), but I doubt the same regarding women, since that would leave many stations and papers in a state of self-critical research, and they’re not keen to highlighting trends they either caused or promoted that may not be beneficial for journalism itself.

Goodwin’s ability to guide us through two polls and not overwhelm us with numbers allows readers to feed off its notes, and also continues to suggest that the public is either growing tired of the vaccine-autism debate when evidence is clearly one-sided, taking more initiative to learn about all facets of autism, or both. Autism may not exist without a controversy for several years, but signs suggest the most visible issue in the last five years is slowly fading.

New Wakefield ruling permeating local news

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Courtesy CBS

WCCO’s take on Brian Deer’s suggestion of doctored information in Andrew Wakefield’s study that concluded vaccines were a cause of autism illustrates the magnitude of the controversy. Whenever you see a local news source provide their own take on a national story, that generally means the subject is either well-known to the audience or there’s a serious need to inform the public about a potential mass impact.

For WCCO, CBS’ Twin Cities affiliate, they used the recent development to explore how Wakefield’s study impacted immunizations. WCCO talked with parents of twins who wanted to be sure they made the right choice when it came to vaccinating their kids. On a broad scope, they would certainly appear to be reporting “yesterday’s news” as they tell their viewers how Wakefield’s study caused parents to put more thought into all vaccines, not just the MMR shot in Wakefield’s research. For followers of autism in the news, this story doesn’t reveal much that isn’t already known: parents pausing to consider the “what if” questions out of concern for their children, and as I mentioned in my first post on the new development with Wakefield’s study, fear is a powerful catalyst in decision-making. Logic isn’t even enough to defeat the presence of fear. Ultimately, the parents WCCO interviewed decided to vaccinate their kids and no side-effects occurred, as they rarely do when immunizations are administered.

I’ve discussed why local news sometimes gives off a lackadaisical appearance with some of their topics of interest before, and some of those reasons return in WCCO’s latest autism story. Primarily, the news producers don’t believe their audience is fully aware of autism yet, as they re-iterate what autism does to its inhabitants and that no one knows what causes the disability. Given how short a window most video packages are (news code for a story generally 60 seconds or more covered by a reporter), there’s little time to explain the finer, more complex questions currently surrounding autism.

What we can learn from this story is how much attention local news producers are giving for, in this case, an international story. Few would question WCCO if they decided not to pursue a local angle to Deer’s discovery, since local TV news can’t focus on one topic for too long without risking losing audience interest. However, Wakefield’s study created huge implications, too big for most reporters to ignore. WCCO is simply doing what most of us affected by autism or worry about the disability already are, keeping an eye peeled for new leads, stories, developments and breakthroughs.

Wakefield remains firm about “fraudulent” study

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Photo by Steve Parsons, PA Wire

The discovery of “doctored information” on Andrew Wakefield’s discredited study linking vaccinations to autism has generated a lot of publicity and fuel for news outlets, and little time was wasted in pursuing the major angles involving this week’s development.

Although evidence refuting a link continues to grow, support for Wakefield and his study in question has yet to shrink. An independent survey reported 58.3% of respondents dissatisfied with research investigating a relationship conducted and/or funded by the Centers for Disease Control and Prevention (which may stem from a general distrust in government, as Congress has had dismal approval ratings for years while conspiracy theories remain abundant). 90% of those surveyed want to see studies comparing vaccinated and unvaccinated people to see if there’s a difference (Frontline addressed this issue with The Vaccine War last year). Wakefield still supports his study, first published in 1998.

Jenny McCarthy’s organization, Generation Rescue, claimed the media was mischaracterizing Wakefield’s work. McCarthy was quoted on The Vaccine War saying she’d rather risk her child getting mumps than autism and is a strong supporter of reducing the number of vaccinations a child receives.

Most who follow and/or studied media will tell you that media’s a popular target when news is reported that contradicts an argument for a sensitive topic. Media’s fluidity and the rapid pace news spreads certainly contribute in the present, but “blaming the media” existed as far back as Senator Joe McCarthy’s “witch hunt” of the 1950s, when he accused Edward R. Murrow of supporting Communists after Murrow published several reports with CBS on McCarthy’s activities.

Jenny, while not related to the late U.S. Senator, isn’t any more immune to blowback than Joe was. The Generation Rescue statement has Twitter users taking a swipe at Jenny for a perceived lack in parenting skills. And we’re only through the first week of 2011. Imagine what the next 51 could bring to this debate.

While the developments are new, the story itself hasn’t changed. In effect, AOL News considered Deer’s research that led to his suggestion of Wakefield’s study being fraudulent represented one side of the argument; that his research is invalid because of “tainted evidence.” While I doubt any reporter would be accused of bias simply for running that story, AOL News deemed interviewing the flip side of the debate, where belief that vaccinations are responsible for causing autism, worthwhile. Deborah Huso’s article effectively illustrates what I explained yesterday about two sides of an argument always attempting to one-up each other, resulting in a never-ending debate. The other factor, of course, remains the lack of a concrete detection method. Until that day comes, the cycle of latching on to a theory that appears to make sense will continue.

The most intriguing element in the vaccine debate’s latest chapter is the response toward Wakefield’s supporters. While a continuously present stream of thoughts exist on Twitter due to its nature, this is the first time I’ve seen social media used in a news story related to Deer’s investigation. While it’s technically impossible to gauge why McCarthy is taking a Twitter assault, consumers are known to grow weary over denials in the face of indisputable evidence or even an association to the contrary. Although it’s illogical to judge parenting skills based on one element of being a parent, that won’t stop opinions from being expressed online, and that in itself could indicate public perception of a controversial topic.

Deer’s discovery and reaction won’t be the last chapter in the vaccine debate. In fact, the recent news has already made a local impact in the Twin Cities area (my “home base”), and I’ll examine how they approached the fraudulent data claim in my next post. Until then, expect the patterns I’ve detailed in this post to persist when a future development is published about the refuted link between autisms and immunizations.