July 28, 2007

Autism Speaks Announces Plans to Fund "Complementary and Alternative Medicine"

Earlier this month, Autism Speaks began lobbying in PA for health insurance coverage.

They they opposed AB 16 in California that would have expanded the mandatory vaccine schedule in that state.

Last week JB Handley (no fan of AS) personally and publicly thanked them for supporting the Mercury Free Vaccines Act of 2007.

And today this:

Autism Speaks Seeking Requests for Applications for New Treatment Grants
On July 27, 2007, Autism Speaks called for research proposals targeting three broad treatment approaches for autism spectrum disorders. The "Pharmacological Treatment for Autism Spectrum Disorders" RFA focuses on developing robust pilot data that evaluate the safety and efficacy of candidate pharmaceutical agents that could lead to larger clinical trials. Similar applications are sought for the "Special Interventions in Autism Spectrum Disorders" RFA, but instead of pharmaceutical agents, the focus is on behavioral and non-behavioral interventions such as educational, physiological, and technological treatments. Given the frequent use of non-traditional interventions within the autism community, the "Complementary and Alternative Medicine in Treating Autism Spectrum Disorders" RFA aims to provide preliminary but high quality data to help evaluate the safety and efficacy of some of these approaches and to identify promising protocols that warrant further investigation and development.

To assist researchers in developing high quality proposals for the Complementary and Alternative Medicine grants, Autism Speaks will hold information sessions for invited proposals where interested investigators can discuss their applications and the review process, as well as topics relevant to the preparation and submission of their applications, such as common challenges in study design.

“We are pleased to expand our treatment portfolio to include a variety of grant mechanisms that will advance our understanding of how to treat autism,” said Peter Bell, Autism Speaks executive vice president for programs and services. “Autism is clearly treatable but we need to understand which interventions are safe and effective and which children will benefit from them. Moreover, it's important to address both the biomedical and behavioral/educational aspects of the disorder to achieve the best outcome for those affected by autism.”

Read more about the Pharmacological Treatment for Autism Spectrum Disorders RFA (PDF), the Special Interventions in Autism Spectrum Disorders RFA (PDF) and the Complementary and Alternative Medicine in Treating Autism Spectrum Disorders RFA (PDF).

(Of course I am not thrilled with researching the drug route, but the cynic in me thinks that they had to do that too in order to keep the pharma money flowing.)

The pdf begins this way:

Although medical care in the United States is increasingly driven by evidence based practice, societal pressure for tolerance and incorporation of complementary alternative forms of health care is significant. Many children (estimates vary from 50% to 75%) with autism spectrum disorders are treated with some form of complementary alternative intervention, and approximately 1/3 of these are being so treated at the time of diagnostic evaluation.

They begin their statement with the admission that most parents are treating autism with biomed and that the "pressure" they are bringing to bear is "significant".

Congratulations parents.

And Congratulations Autism Speaks.

This will be the best money you have ever spent. If you spend it right.

Of course the cynical optimist in me also wants to wait and see how the grants are distributed. I need to see the words, chelation, HBOT and Lymphoid Nodular Hyperplasia as well as the names of a few docs and researchers that the biomed community has come to know and trust, before I am going to sing love songs to Autism Speaks. But if they are doing this in earnest and actually get results, I will sing them love songs.

(However, if they give Eric Fombonne money to do a blood mercury study, I will be out in front of their building with a bull horn. But let's just assume that they are not pulling any shenanigans with this and just enjoy the moment.)

I think that it would be great if our trusted DAN! medical professionals could keep us parents abreast of their applications to this program. I would love to know who is applying for what and who is getting funded or turned down.

But as to not seem to be taking this to glibly, I want to thank Autism Speaks, because I am starting to believe that they are listening to us the way that they say that they would.

As an update to the Autism Speaks letters, I have not sent them in yet. I have been away from autism activism a good deal this month because I have been spending so much time on my boy's health. (We are finishing up a round of IV chelation (his first IV) on him and the results have been really exciting for us, but I will write about the whole thing in a week or so when he is done.) So if anyone still wants to include their letter, send it along.

The tide has turned.

How great would it be if a year from now if all I had to write about was plummeting autism rates, new treatment interventions that are covered by insurance and recovery stories.

How great would it be if this blog became irrelevant.


schaferatsprynet said...

Here is my comment as posted on my autism discussion group EOHarm@yahoogroups.com

Autism Speaks indeed ought to be congratulated for making this move.
Congratulated mostly for not being so incredibly stupid to ignore the
direction parents are "voting with their feet" in support of
"alternative" treatments.

The question still remains is can we trust any of the science AS
previews and funds. After all, they are still spending millions on
the genetic junk science medicine show. They have betrayed enough
already the autism community by funding scoundrels.

The Autism Research Institute has been the traditional work horse
researching autism treatments. The mainstream medicine considers ARI
and DAN! practitioners to be rogues. But then again, many parents
consider mainstream medicine to be worse than rogues; sell-outs to
pharma and public health. As long as AS continues to dodge the vaccine
issue, they should be considered as the threat to our children that
they are for ignoring the obvious. Public health and big pharma did
this to our kids. Autism Speaks is still mostly acting as an
accomplice after the fact.

But do let us encourage AS when they do make steps in the right
direction, even if it's only ultimately for purposes of insurance and
window dressing. What if the ARI rouges are right?! It'll take a lot
more than what I see now to overcome my skepticism about Autism Speaks.

Ginger Taylor said...

We know that the ARI/DAN Rogues are right, we have the healthy, speaking and even fully recovered kids to prove it.

Whether AS (or mainstream medicine for that matter) comes to us willingly or is dragged kicking and screaming, they are going to come.

In a very short amount of time (6-7 years maybe) the DAN approach has become the standard medical treatment for autism. By AS's own admission as much as 75% of kids with autism are being treated with biomed. This is despite the vast majority of peds discouraging parents from trying it.

From my experience and the experiences of parents that I have talked to, pediatricians are not fighting the non-vax/DAN treatment parents today as strongly as they were three years ago. I think that they have seen that parents stopped listening to them when they do, and some have seen the results that these kids have under biomed. Even if they are not implementing them, as the AAP is not on board, many are beginning to see the hand writing on the wall.

In 10 years, a refined and well researched DAN approach will be the standard and peds will be referring to DAN docs (or having them in their own practices) right along with speech evaluators when autism or dev. delay is suspected.

There is no doubt about this. Because the more parents do it, the more of their child they get back, they are gonna keep doing it and doing it in greater numbers, and with every new child that looks their mother in the eye and says, "Hi, Mommy!", people like Fombonne, Grinker, Laidler and Offit look more and more silly and become more and more irrelevant.

So I no longer worry that Pharma/AAP/CDC being able to 'win' in this battle. Once the water goes over the top of the dam, the dam begins to come apart. The water went over the top of the dam (imho) with the Cedillo trial. The only question that remains is how fast is the dam going to come apart.

That will depend on a few things. How many children make full recoveries, how well publicized those recoveries are, how famous the parents of the recovered child are (see Jenny McCarthy, how many formerly resistant earnest medical professionals get good research in their hands, and how many formerly resistant self-serving medical professionals abandon ship because their money and reputations will be at risk if they don't.

But I predict that Paul Offit will still be trying to steer that ship as it sinks. He will choose to go down with the wheel in one hand and a syringe in the other.

Is AS moving in this direction out of good motives or self-serving ones? I don't care. Motives shmotives, you do the right thing.

So you and me Lenny, we need to watch all their moves to make sure that they are not pulling any shenanigans. I want full disclosure on what they are funding, and what applications they are turning down.

I think that they understand that if they put out any studies that pull the kind of crap that verstraeten/denmark did, that their reprieve will be revoked and everyone will be done with them.