PLEASE CONGRESS, DON’T HELP US

Well, we finally got a response from one of our senators to the letter my wife and I sent urging them to support the proposed revision to the Combating Autism Act and to help ensure that the proposal put forth by 21 organizations would be the one to emerge from the HELP Committee. Unfortunately, the bill that now before the Senate will not help us all move forward, and may actually be a step backward.

In any event, Senator Mary Landrieu responded, or more likely had her staff send us a letter that doesn’t make too clear if our letter was read or understood at all. But that’s still better than Senator David Vitter, who, to no surprise on my part, has ignored us completely.

Here’s Senator Landrieu’s letter to us:

Dear Friend:

Thank you for taking the time to express your concerns about Autism. I realize that this issue is one if personal concern and I will do all that I can to see that it is addressed. As you, I believe that this is a very serious matter that affects a large number of our children.

I cosponsored the Combating Autism Act of 2005 ( S.843 ), which is a bill to amend the Public Health Service Act to defeat autism through research, screening, intervention and education. If passed, the bill will provide enough funding to continue the research to strive to find the causes and cures for Autism, along with allocating those funds to the institutes, centers, and divisions of the National Institutes of Health. On July 19, 2006, the committee on Health, Education, Labor, and Pensions agreed to report this bill favorably and I will work to make sure this bill passes when brought up on the Senate floor.

While I cannot personally relate to the situation you are going through with you family, I am a strong supporter of continuing research to find out exactly what causes Autism and how it can be prevented. I am here to help in any way that I can, so please feel free to contact me in the future. I would also love to hear about any progress that you child is making, and I will continue to work on this bill to maximize the research devoted to Autism.

With kindest regards, I am

Sincerely,

Mary L. Landrieu

And here’s our somewhat lengthy response:

Dear Senator Landrieu:

Thank you for taking the time to respond to our recent correspondence. As we stated in our previous letter, we were aware of your co-sponsorship of the Combating Autism Act (“CAA”), and we appreciate your involvement in the issue. Unfortunately, the version that emerged from the HELP Committee was not the proposal that we commended to you.

When the CAA was first drafted, it did not meet with universal approval from various autism advocacy groups, for good reason. It was an expensive piece of feel-good legislation that seemed designed primarily to maintain the status quo. It was seen as a positive sign that some in the Senate sought input from the autism community. As a result, 21 separate organizations, with a wide variety of agenda and conflicting views on core issues such as causation and treatment, were able to agree on support for a consensus revision that would address several of the concerns these organizations had.

The consensus draft included specific language to ensure that the hypothesized role of vaccines and vaccine preservatives in causing autism would be researched to move us all closer to a resolution of that vital issue. The present language, calling for research into environmental factors may arguably include research into the role of vaccines, but there is no guarantee that the NIH and the CDC ⎯ both of whom have shown a bias against the scientific evidence that supports the hypothesis ⎯ will aggressively explore the issue.

The consensus proposal also included the creation of an Autism Advisory Board that would have provided needed oversight and transparency to the setting of priorities for research. The members of the HELP Committee apparently did not think transparency is a vital concern. Let us assure you that it is vital if there is to be any credibility assigned to the government agencies charged with protecting the public. In a recent letter to the National Institute of Environmental Health Sciences (“NIEHS”), urging the NIEHS to examine the issue of a possible link between thimerosal and autism, a bipartisan group (Senators Lieberman and Stabenow, together with Representatives Weldon, Burton, Maloney, Crowley, Smith, and Hinchey) expressed the lack of confidence that prevents the Centers for Disease Control (“CDC”) from having the required credibility to determine policy in this area:

… Unfortunately, as the lOM pointed out in its April 2005 report on VSD access, a CDC-led study on thimerosal and autism could be viewed with much skepticism and may not he accepted by the growing number of parents with concerns about vaccine safety and the possible links between thimerosal and autism. If the federal government is going to have a study whose results will he broadly accepted, such a study cannot be led by the CDC. It is for these reasons we believe that NIEHS is the most appropriate entity to lead such an investigation.

Unfortunately, the version of the bill that has been submitted by the HELP Committee grants near-dictatorial authority to the CDC, an agency that has demonstrated a complete aversion to fully exploring questions that may expose errors of judgment on its part. Meaningful oversight is a necessity, and the Interagency Autism Coordinating Committee that the bill now calls for will not guarantee a truly independent body to provide transparency to the process.

The coalition of 21 advocacy groups that enthusiastically supported the consensus proposal has become somewhat fractured. Some of the organizations fully support the bill, while others believe that no CAA at all is better than what is now before the Senate. We are inclined to reluctantly agree that the issues confronting us as a nation stemming from the autism epidemic are too important not to get it right the first time. As enthusiastically as we urged your support in our previous letter for seeing to it that the HELP Committee adopt the consensus proposal, we must now reluctantly urge you to reconsider your sponsorship of the bill.

We realize that compromise is a necessary part of the legislative process. But compromise is difficult for those of us whose families may be impacted by the CAA’s passage. In your correspondence to us, you would “love to hear about any progress that [our] child is making.” We will not make this letter even longer than it will otherwise be by relating our son’s whole story herein. (Should the opportunity present itself, we would welcome the chance to meet with you in person to help you understand a complicated issue.) Suffice to say, our son continues to make progress, primarily using interventions that some in the mainstream medical establishment scoff at, primarily because they do not wish to acknowledge that something as beneficial as the vaccine program may present a genuine risk to a subset of susceptible children.

The version of the CAA that is now before the Senate has the potential to shed light on the issues of causation, and show that the treatment protocols that so many of us are using are appropriate. It likewise has the potential, however, to enable those with vested interests to continue frustrating the efforts to seek the truth. Again, we may well be worried about appearances of impropriety that do not reflect the true picture, but the credibility of the CDC and the NIH have been so damaged that trustworthiness must now be legislatively enforced.

We will respect any decision you make as to your future involvement with the CAA. If you feel this bill should pass, however, we strongly urge you to take appropriate steps to ensure that the legislative history reflects the desire of Congress that the possible role of vaccines, other biological and pharmaceutical products, and their components (including preservatives), should be fully researched, without bias.

We further urge you to seek means of unbiased oversight of the research that will be funded through the CAA. Ideally, restoring the Autism Advisory Board would provide the needed transparency. Failing that, however, we urge you to cooperate with any independent organizations that may seek to fill that role. One such effort that is now forming will be called, appropriately enough, “Combating Autism Act Watch,” sponsored by A-CHAMP (Advocates for Children’s Health Affected by Mercury Poisoning). It is unfortunate that a significant number of Americans feel that we can no longer trust the government, but you can help to restore that trust by facilitating the ability of citizen’s groups to monitor how the CDC and NIH implement the CAA.

Finally, we would like to draw your attention to two bills that were recently introduced in the House of Representatives.

H.R. 5887, the Vaccine Safety and Public Confidence Assurance Act of 2006, was introduced by Congressman Dave Weldon and co-sponsored by Congresswoman Carolyn Maloney (D-NY). This bipartisan initiative will create a separate agency to oversee vaccine safety. Because that responsibility currently resides with the CDC, the same agency responsible for promoting high vaccination rates, the resulting conflict of interest has undermined the credibility of the government and the vaccine program itself.

H.R. 5940, the Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2006, was introduced by Representatives Maloney and Tom Osborne (again, a bipartisan effort). The purpose of the bill is to mandate studies comparing health outcomes between vaccinated and unvaccinated children that can help develop a better understanding of any possible connection (or even lack thereof) between vaccines and autism spectrum disorders, as well as other conditions that have sharply risen in recent years.

It will, of course, be quite some time before these measures make it to the Senate, but we mention them to underline the fact that these issues will not simply disappear. Answers must be found, and we ask that you be a part of that process.