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Saturday, December 21, 2013

Thank You Cherry Champagne - A Story That Matters...

And now...many appreciations to Cherry Champagne for her willingness to join the conversation with her recent article, Rubella Epidemic of 1964-65, found in the November 21st issue of The Loop.

Stories matter.  Whether told, sung, written, or shown, stories inform our worldview in myriad ways.  Cherry’s story reminds us of many things.  That life should be treasured.  That severe disabilities can be tragic, but humor and curiosity can exist side-by-side with the struggles.  That parents suffer when their child’s potential is crippled, and a life is cut short.  Stories like Cherry’s serve as cautionary tales, urging us to learn from the past.  

The trouble with anecdotal stories, however, is that there are many of them, they frequently contradict one another, they are usually infused with strong emotions, and they are not subjected to rigorous scientific analysis before they are persuasively presented to an audience.  There is value in Daphne’s story.  But, if you are in the process of making a medical choice for your family, you need more than a story that pulls at your heartstrings and influences your decision in one specific direction.  You need science.  Cherry’s story about Daphne is human, real, powerful, and moving...but it is not science.

What makes science different from stories?  Simply put, science is a form of evaluation which avoids the common pitfalls of confirmation bias and preferred outcomes, allowing us to find answers that reflect data rather than our emotional expectations.  Our gut can be right.  It can also be dead wrong.  Science, like all human endeavors, is an imperfect tool.  History shows us we will err along the way, repeatedly.  However, it is still our best tool for non-biased evaluation of complex medical issues. 

As you consider your medical decisions, make space for a variety of stories in your process.  Note family medical history and pay attention to the unique aspects of your community.  Talk with your family doctor.  Consider your family’s willingness and ability to use the various tools available to protect self and community.  All these factors need to be taken into account in order to make the best decision for your child and your community.

A Community Conversation - Part 9

A Community Conversation About Health and Responsibility: Vaccines and Beyond

Part 9:  What is Autism?

Our goal this year has been to offer a non-polarizing conversation around public health.  Our strategy was to explore the issue from unusual angles.  We hoped to pull away from the divisive debate over one tool (vaccines), and broaden the conversation to include respect for diversity and acknowledgement of the grayness of this issue.  With sincere hope that we have been successful, we will now address the subject of autism.  Welcome to Part One of Three.

First, let us ask you to consider your existing ideas and beliefs about autism.  Now take a deep breath and set them aside for a moment.  Some of what we write may be a surprise to you.  We certainly encountered many surprises as we researched these articles.  

What is autism anyway? The simple truth is, we don't really know.  The diagnosis and definition of autism has been changed repeatedly over the last century and continues to be controversial.  The term was first used in 1911 to describe a symptom of schizophrenia.  Since then, the definition has bounced all over the place, always problematic in one way or another.  The current strategy is to lump a wide variety of conditions under the broad umbrella term Autism Spectrum Disorder.  This diagnosis now covers a bountiful cornucopia of behaviors, traits, severities, age of onset, and outwardly notable symptoms.  The narrowest definition we could find on the CDC website, is “ASDs are a group of developmental disabilities that can cause significant social, communication and behavioral challenges.”  How’s that for broad? 

Why does this matter?  Because the rates of autism are going up.  How much?  We’re not sure.  The CDC has created a campaign called “Learn the Signs. Act Early.”  This is an active effort to screen every child so that they will be eligible for services.  Currently, 1 in 88 children is being diagnosed with ASD. That's more than 1.1% of the population.  

But what does a diagnosis of ASD actually mean?  Our current ASD diagnosis is just as broad and non-specific as when people used to be diagnosed as having “a fever.”  Malaria, a raging staph infection, and heat stroke can all cause a fever.  Any fever can be brought down with an ice bath, but that only treats the symptom.  The ice bath may cure the heat stroke patient, but will only offer temporary benefit to the other patients.  The patient with the staph infection might be cured with a specific antibiotic, but it’s hard to research antibiotic efficacy if some of patients in your fever study actually have heat stroke.  We encounter similar problems when researching autism treatments.  Various treatments provide varying benefit to various individuals and we can neither predict nor understand why.     

Over the last fifteen years, there has been an explosion in autism research.  This is largely thanks to the dedicated efforts of parents who have tirelessly advocated for their own children.  With the CDC joining the effort, autism research is getting much needed funding and attention.  More importantly, we’re becoming increasingly open-minded about what questions we ask.  Is autism genetic?  A response to environmental factors?  A misdiagnosed brain injury?  A misdiagnosed allergy?  A persistent infection in the gut?  A problem with the human microbiome?  An aspect of human diversity?  

All these uncertainties are a normal part of the ongoing, scientific process.   We’ve currently housed a wide continuum of conditions under the term Autism Spectrum Disorder, but this is only a temporary solution.  In the years to come, through rigorous research and with a little luck, we will expand our understanding and refine our definitions.  Hopefully this will also lead to effective treatment and prevention options.  

Of course money, liability, and politics complicate everything.  This will be the focus of our next article.  

[Note:  We removed the last section of this published article about Cherry Champagne's contribution to the conversation and posted it separately, as it covers a different subject.]

“A Community Conversation About Health and Responsibility: Vaccines and Beyond” is an ongoing series written by two close friends with a passion for improving community cohesion and building respectful relationships in a diverse world.  This article was co-created by Karen Crisalli Winter and March Twisdale.   BLOG:   Email:

Friday, December 13, 2013

It's all over the news! Have you heard about...

...the fascinating new study...regarding the efficacy of the 
acellular pertussis vaccine in baboons?  

Abstract of Actual Study:  
Relatively Good Article Referring to the Study:

For immediate perusal, here is the article found at

The current vaccine for whooping cough, or pertussis, may keep you or your baby (1) healthy, but it may not stop either of you from spreading the disease, a new animal study suggests. Baboons can harbor and spread the disease even after receiving the vaccine, researchers have found. The study adds to growing evidence that the acellular pertussis vaccines, in which only parts of the pertussis bacterium are injected into the bloodstream to elicit a protective immune response, are not as good at controlling the disease as older, whole-cell vaccines were. However, a vaccine manufacturer argues that it's too early to conclude that a similar effect occurs in humans. 
Pertussis starts out like a normal cough but causes severe coughing fits and can be lethal to infants. By the time of diagnosis, it is often untreatable with antibiotics.  Historically associated with the slums of pre-World War II Europe and America, the disease has made a powerful resurgence in recent years. The United States alone experienced about 50,000 cases of pertussis last year, with 18 deaths, according to the Centers for Disease Control and Prevention. The increase could be due in part to more sensitive tools to diagnose pertussis that were widely introduced in 2010, or to pockets of children whose parents oppose vaccination. However, previous research also indicated that immunity in people vaccinated with the acellular vaccines, introduced in the 1990s, is less long-lasting than in users of the older, whole-cell vaccine.
The current study goes a step further and suggests that people who get the newer vaccine may still become infected and spread the germ. Tod Merkel, a microbiologist, and colleagues at the Food and Drug Administration in Bethesda, Maryland, examined response to the acellular vaccine in infant baboons, an animal that responds to the bacterium responsible for pertussis similarly to people. The researchers infected four groups of baboons, each group containing three or four babies, by anesthetizing the animals and dripping a pertussis-containing solution into their noses. One group had already received the standard three doses of the acellular vaccine; a second received the whole-cell vaccine. Members of the third group had previously had whooping cough. Those in the fourth group had not had the disease and received no vaccine before being exposed.
As expected, the unvaccinated baboons developed severe whooping cough, while the baboons that had been sick previously remained well, the research team reports today in the Proceedings of the National Academy of Sciences. Both groups of vaccinated animals also remained healthy. However, the germ persisted an average of 35 days in the throats of baboons vaccinated with the acellular shot, though it grew less thickly than it did in the throats of the sick, unvaccinated animals. Baboons vaccinated with the whole-cell shot harbored the germ for 18 days, and it did not grow at all in animals that previously had recovered from pertussis.
In another experiment, two baboons that had received acellular vaccines were exposed to whooping cough germs and then each was put in a cage 2 days later with previously unexposed baboons. In both cases, the vaccinated animals transmitted the germ to their cage mates, who developed pertussis. Follow-up studies showed that animals vaccinated with the acellular shots did not generate sufficient numbers of a particular variety of white blood cell to fight the pertussis infection as well as those receiving the older vaccine.
The researchers conclude that a new vaccine may be needed to provide so-called herd immunity, the ability of a community to stop an infection from spreading, and protect vulnerable babies from pertussis. “There's a difference between protecting individuals from illness and bringing down the incidence of pertussis in the population,” Merkel says. “To do both we may need a different vaccine.”
Sanofi Pasteur of Swiftwater, Pennsylvania, which makes one of the two acellular pertussis vaccines used in the United States, issued a statement cautioning that the study was not designed to evaluate the extent to which vaccination reduced transmission. “It cannot be said with certainty that these findings are directly applicable to humans,” the company said it its statement.
But other scientists applauded the work. “This is a very strong paper, even though it is a small sample,” says James Cherry, a vaccinologist at the University of California, Los Angeles, who was not involved in the study. Cherry argues that the efficacy of the acellular vaccines in trials held in Europe and Africa in the 1990s appeared high because case definitions did not count people with mild infections. The acellular vaccine was introduced because of public concerns and lawsuits arising from the whole-cell vaccine, which sometimes caused high fever and even seizures.
As for the claim that the new result may not be applicable to people, Merkel notes that, for ethical reasons, it may be difficult to duplicate the study in humans, as that would require purposefully exposing experimental subjects to a 3-month bout of pertussis.