March 16, 2008

The Responsible Government Fantasy

So in a discussion on a yahoo list, someone posted a quote from the Boston Globe that the US spends the entire autism budget in Iraq every four hours, which they argued, was a good reason to end the war.

I argue that even if Bin Laden and his friend Al Q surrendered tomorrow and they troops were home by Tuesday, the US would still not be doing any more than it is to deal with the autism problem.

Because governments do what is important to them and if autism causes and cures were important to the US Government and its health authorities, they would have been pouring resources into it for years.

Instead, we get very stupid statements from Julie Gerberding, who, after 5 years of ignoring parents increasingly loud demand for CDC action while sitting on her hands and insisting that no one look behind the vaccine curtain, said, "CDC recognizes that parents want answers. We share their frustration at not having more answers about the causes and possible cure".

Please. OJ looked harder for Nicole's 'real killers' than Julie has looked for the causes and possible cures of autism. She has outlived her welcome.

We have all lived through what it looks like for the government to pay lip service to autism, yet ignore, and even sabotage the progress in putting the pieces together.

For the sake of fun, and envisioning a better world... let's fantasize what it would look like if the government and the medical community who follow their lead actually DID want to know the causes and possible cures of Autism!

Here's what I think:

Julie Gerberding's press statements after the Hannah Poling announcement included these: "the government has made absolutely no statement about indicating that vaccines are the cause of autism, as this would be a complete mischaracterization of any of the science that we have at our disposal today", and, "This is a complete mischaracterization of the findings of a very simple situation of one child with an unusual disorder, and it would be completely wrong to say that this has bearing to the vast majority of children with autism",

In my fantasy, our good friend Julie would have said something to the effect of:

"We are excited about all that we are learning about the possible causes and potential cures of autism from the Poling case, and are grateful that the Polings have been so open with their daughters medical information so that we can use her case to help people both now and for generations to come. I am encouraging all medical experts, especially those with knowledge in mitochondrial function to take time this week to read Dr. Poling's study on Hannah and see if you can use your expertise to help shed light on how this new information on mito dysfunction piece may fit into the autism puzzle, and share your ideas with those already at work on autism.

I have spoken with Dr. Tayloe, head of the AAP, and they will be issuing an alert to pediatricians across the country to begin screening their patients with ASD for the mito dysfunction that Hannah has, so we can get an idea of what percentage of autism cases her medical scenario may represent.

In the mean time, we understand that this ruling may give parents pause in their decision making in vaccinating their children. We too want to be sure that the vaccine schedule is not contributing to the prevalence of autism, so we are putting the following measures in place.

First, in addition to the regular vaccine schedule, we will be adding two variations as options for parents. One for parents who are concerned about a link between vaccines and neurodevelopmental disorders that is a more conservative schedule. It will offer kids the same protection against diseases, but will take much longer to implement as the vaccines are spaced out. And another, much more conservative, schedule for those who who are classified as high risk.

Second, until we have a few more answers, we encourage people with ASD to forgo vaccination for the next few months until we have a better idea of how many of them may be effected by Hannah's mito problem and can put appropriate screening measures in place. We will work to have that done quickly, as we believe vaccination is important and want them to be able to continuing vaccinating if it is found that it is safe for them. Such people should only be vaccinated in the case of an immediate threat to their health from a viral outbreak of the following life threatening illnesses (insert list that does not include chicken pox or the flu)

Third, we are also working with the AAP on retraining pediatricians to accurately access, treat and report reactions to vaccines as there is a chance that these could be early signs that a child cannot tolerate vaccination. We have learned much from parents as to what the first signs of autism were in their kids and want to doctors to use that information to their advantage.

Fourth, since we know so much more than we did about the relationship between vaccination and autism that we did when the VICP was established, we are petitioning congress to remove the three year statute of limitations for filing a claim with the fund. Any one injured at any time may now apply. More from my good friend John Gilmore of A-CHAMP on that following my comments.

Further, we are petitioning DOJ and HRHS to open any other cases ruled on in the VCIP that included any symptoms of autism and inviting the families to come forward and share their stories if they feel comfortable doing so. The more we can understand these individual cases, the more clues that we will have to understanding autism as a whole.

It is our goal by the end of the year to have a screening plan in place so that every child can be screened at birth to see if they are at risk for vaccine injury.

This is an exciting time for autism research. We have so much information to sort through and piece together, and are so pleased that so many families have been so willing to share their stories of regression and successes. CDC is proud to announce that in partnership with Defeat Autism Now, Thoughtful House, Generation Rescue and The National Autism Association, we will be holding regional conferences beginning in six months that are free to medical professionals and autism parents so that we can share all that we are learning from these autism treatment pioneers with the medical community at large.

Vaccination against deadly disease is important, and we will do everything we can to find the balance between fighting off viral infections and protecting against developmental disabilities, so that Americans can live in a society free from these epidemics.


Can you imagine?? If stuff like that happened, people might start trusting their government!

Also, I think our kids would be little rock stars in their towns, or treated like little war heroes because everyone would know that they took the hit so that everyone else's kids would not get polio.

Lastly, I think that when I went to my new pediatrician and told him that my son was half way recovered from autism and lost many of his autism symptoms, he would be excited to have come across a recovery story of his very own. He would have a special luncheon with all the docs and nurses in his practice and invite me to come and bring Chandler and talk about all the things that we have tried and what worked for him and what didn't.

What do you think the world (or your world) would be like?

Please share with the class.

3 comments:

Wade Rankin said...

I'm in for a little imagination:

http://tinyurl.com/2j5nuw

Alicia said...

I know that I would feel a lot more comfortable than I do now. There is a real risk in vaccinating and not vaccinating and since I have chosen not to immunize my son so far it would be amazing to have other options with testing him and having more resources to learn what would be the best for my baby. I wish this were true and hopefully it will be in the future!

Kim Stagliano said...

Wow, I write fiction and this one stumps me.