Sunday, July 25, 2010

Who is Showing Callous Disregard?

Dr. Andrew Wakefield recently spoke at a meeting of the New York Chapter of the National Autism Association. Almost 100 people attended - it was a full house! I have had the opportunity to see Dr. Wakefield speak several times, including at the recent NAA-NY Metro Chapter event as well as at AutismOne in Chicago this May. He is always eloquent and impassioned and he did not disappoint on July 8 at NAA-NY Metro. You can read more about his appearance on the NAA-NY Metro Chapter blog and on Age of Autism. Parents and medical professionals are becoming increasingly aware of issues surrounding vaccine safety and they want to learn more.

As were many others, I was quite curious about Dr. Wakefield's book, Callous Disregard: Autism and Vaccines - The Truth Behind the Tragedy, which recently was published by Skyhorse Publishing. Dr. Wakefield has been vilified in the media, but this vilification most frequently comes in the form of prepackaged attacks that rehash the same stories over and over. I also repeatedly see stories recasting as "fact" the opinions of those who disagree with Dr. Wakefield. It is unfortunate that many journalists seem to have forgotten about investigative journalism, merely taking at face value what their "sources" tell them - sources who frequently have significant conflicts of interest which go unmentioned. I am not asking journalists to disregard those whose opinions are contrary to Dr. Wakefield's. Absolutely not. I merely ask that both sides be presented in a balanced way, which almost never happens. Without both sides presenting their respective points of view, there cannot be true discourse.

In Callous Disregard, Dr. Wakefield sets the record straight - in methodical fashion, with numerous citations to both evidence and to scientific/scholarly works. Dr. Wakefield walks the reader through complex materials in a way that both parents and medical/scientific professionals can appreciate. This is a book that reaches both audiences, at least in part because Dr. Wakefield respects that parents of children with ASD are knowledgeable and are eager to learn all they can about their child's illness. Even if you disagree with Dr. Wakefield, I encourage you to read this account, and examine the evidence yourself, with an open mind. I also commend to readers an article written by Dr. William Long for Autism File magazine.

Dr. Wakefield continues his fight to clear his name and continues his work to help children with ASD. He has sacrificed incredibly for our children. It would have been easy for him to quit long ago and quietly walk away. He chose not too. I think that speaks measures.  Dr. Wakefield's commitment to children with ASD has won him many followers, but many critics as well. I continue to be amazed at the level of animosity toward Dr. Wakefield in some circles. In particular, much cyber-energy is spent in the blogosphere (though certainly elsewhere as well) trying to discredit Dr. Wakefield. Critics of Dr. Wakefield make scathing personal attacks, they belittle both parents and scientists who are open to Dr. Wakefield's work and the work of other scientists exploring a possible link between vaccines and autism. If Andrew Wakefield really is as unimportant and irrelevant as they try to paint him, why waste all that energy? I have to wonder if this is some kind of attempt to convince themselves that his work, and the work of others exploring these issues, is no threat to their their neat little world where there is no potential downside to mass vaccinations at unprecedented levels.

Do these critics think that if they merely repeat over and over again that Dr. Wakefield is a villain and that vaccines are completely safe, everyone will believe them? In fact, the contrary is true; more and more parents are becoming wary and distrustful of bald claims of vaccine safety. As a Harris Poll commissioned by the Center for Personal Rights and conducted this spring shows, a majority of parents believe that the pharmaceutical industry has too much influence over the vaccine schedule, a vax'd vs. unvax'd study should be conducted, parents (not the government) should have the right to choose which vaccines their children receive. Moreover, this poll and a recent study published in Pediatrics show that many parents also are concerned about serious adverse effects from vaccines (48% in the CPR poll, 54% in the Pediatrics study).

As parental distrust mounts and parents ask more questions about vaccine safety, I also have to ask why there are many writers who misrepresent the findings of studies concerning vaccine safety. For example, it is disingenuous (at best) to tell parents that a study vindicates vaccines when a study merely finds that a link between vaccines and autism is not proven - those statements are not equivalent and it simply is wrong to equate them. We can read, and curious parents are, more and more, going to the sources themselves. When they discover a study's actual conclusions and find they conflict with the spin, the spinner loses credibility. The bottom line is that the studies conducted to date are insufficient to prove or disprove a link between vaccines and autism, though there is a mounting body of evidence suggesting a connection, for at least some children. I blogged awhile back on the frightening implications of lack of scientific curiosity on this issue (or fear of what results may show).

On a separate but related note, the vaccine safety studies done to license vaccines are, as a general rule, woefully inadequate: they are short-lived (in some instances only days or weeks and, therefore, unlikely capture many possible reactions other than acute, immediate onset reactions), subject to manipulation, conducted by the vaccine manufacturers themselves (not objective third parties), and do not address the safety of the current vaccine schedule as a whole. Most parents do not know this. I even wonder how many pediatricians are aware of the inadequacies of vaccine safety testing when they tell their patients that vaccines are subject to rigorous testing? You can go to the FDA website to review pre-licensing testing information, and see for yourself what is considered sufficient - it is eye-opening.

Vaccines have become sacred in the public health sphere and to challenge that doctrine is a heresy. However, I think it is becoming more and more apparent that we do need to challenge the current vaccine schedule, challenge the inadequacy of safety testing, and challenge the lack of appropriate studies concerning vaccines and their possible role with respect to many diseases, including autism. As the CPR Harris Poll demonstrates, parents are becoming more aware of this issue, and asking more questions. This issue is now mainstream - half of parents think that there are serious issues with respect to the U.S. vaccine program. Those involved in the U.S. vaccine program need to recognize that parents no longer are willing to accept a pat on the head, telling us that they are the "experts" and know what is "best." Parents and a growing number of doctors and scientists are demanding that more and better testing take place and we are demanding honesty.

As a postscript I want to encourage my readers to also check out this post on Adventures In Autism.  Ginger Taylor's posts are always timely and insightful. 

In the interest of full disclosure, I am an officer and board member of NAA-NY Metro, a board member of the Center for Personal Rights, and on the steering committee of the Elizabeth Birt Center for Autism Law and Advocacy.