Re: Safeminds statement on CAA/Mark Blaxill's pts. against CAA

August 29, 2006

Does anyone know how Burton or Weldon feels about the bill? Jane Medlin <angelamedlin@...> wrote: Lori: You have been seeking answers to the CAA which have been discussed in detail many times, by many on previous

posts, but to help bring you up to speed I started listing off reasons I felt CAA was a bill we should not support. As I started this email I received personal emails from several individuals which was a post written by Mark Blaxill of Safeminds. I felt his statement (written the day after the bill passed through the Senate) had some very valid points which closely emulates my thoughts on the CAA. So I will forward these reasons to you as I really hate writing and felt he did a very good job of highlighting why we should not support the

CAA (not sure if I agree with #3, as autism centers are usually located in Univ....never impressed with UW's center when I lived there). I would also like to add to Mark's post one other reason I felt that we shouldn't support the CAA: the fact Bill Frist supported the CAA. Please note: Below Mark's email I responded to your question about consensus. Below are Mark Blaxill's reason he could not support the CAA and I whole heartily agree with his thoughts (with exception of #3): (part in bold is my emphasis): Just a personal comment. I want to say that, based on the version of the bill coming out of the Senate, I can no longer support CAA. The last minute cut in new resources for research, the absence of new requirements for ovresight and the full language of the colloquy, which consider to restrict necessary fields of research, make this version of CAA unacceptable. We need to send Congress back to the drawing board. Here is my reasoning.1. There is far too little money, spent far too late. This doesn't treat autism as a national emergency, it treats it as a incremental spending item 2. The bill

endorses the IOM findings and offers a scriptural interpretation that says the IOM didn't restrict funding. We know better.3. The environmental earmark is a pittance. I think the atism centers in general are worth supporting, but they don't move the needle nearly enough4. They have not mandated the oversight provisions that we care the most about. There is no required change in oversight in this bill. Just a few extra IACC seats and this is something we didn't need a bill for 5. They continue to place boundaries on investigations into the source of the problem. We need to stop breathing our own exhaust on the notion that epi doesn't matter. OF COURSE EPI MATTERS!!! It just has to be done right. We need to get to the bottom of the autism epidemic and there is no valid reason for excluding entire categories of investigation, that's just irresponsible 6. The colloquy is terrible—THEY ENDORSE THE

IOM REPORT--and their dealing with the community in the process was nothing short of deceptive. They gave us selective tidbits, thinking they could meet our bottom line requirements without telling us what their entire intent was. This is so far from the Consensus Bill language it's not even funny.7. Since we suspect they don't really spend $100M anyway, we can have the same effect in increasing funding by enforcing the spending they claim they do than by adding a nominal amount of $50M per year five years from now8. The last minute change in the research funding (in my mind the ONLY reason we ever had to stay at the table) ended up cutting the increase in research funding by over $100 million. Think about that, to get this bill done, we lost $100 million of the most valuable part at the 11th hour, after all the blood sweat and tears. That means the change in research spending went from $240 million to

$145 million, THAT'S A 40% REDUCTION IN THE CORE BENEFIT OF THE BILL. NEARLY CUTTING THE RESEARCH INCREMENT IN HALF! I think this is a real shame, but it's time to recongize when the benefits of the deal have shrunk too much to make the drawbacks worth it. But that's what has happened and we need to recognize when that has occurred.MarkLori: You made the following statement in your post, "I'm trying to understand why you broke consensus." MAM put out statements, along with myself, which were quite the opposite...MAM nor I ever broke consensus. We stood by

the consensus bill while other organizations did not. The consensus bill was the one with the "vaccine" language (not the current bill which passed)... Below are statements from 7/19 and 7/20 posted on several boards (that I helped personally compose) regarding the CAA. Maybe this will help clear up the confusion: Dear Concerned Parents, I wouldn't break out the champagne just yet, on the revisions of the

Combating Autism Act. While there have been changes made, they are not the changes you all are expecting. This newly revised bill is still far from the consensus billed agreed upon by many autism and mercury groups that originally contained vaccine and thimerosal research language. This revised bill still fails to do so. This bill, as it stands now, can still work against us and treatments we are all currently providing to our children. For these reasons and others, we still cannot endorse the current Combating Autism Act. We encourage you all to contact your senators and let them know how you feel about the current CAA. Please keep in mind, the folks that are asking for our trust that the right thing will happen with this bill are the same folks who have harmed our children in the past with dirty legislation. Frist, Enzi, and a former CDC staffer, to name a few. Forever in the Fight For Our Children and

Yours, Amy Carson and Medlin www.momsagainstmercury.org Please feel free to forward this to any medical/autism/parent groups who share our concerns about the latest developments to this bill: Below is a joint statement from NoMercury and Moms Against Mercury. We have very grave concerns about the current language in the Combating

Autism Act (i.e. what we were promised is not what was delivered). The current version, scheduled for mark-up in the Senate HELP Committee today at 10 am could, in our opinion, hinder critical biomedical research that would provide proper diagnosis, early intervention and treatment for our children. We are concerned it may provide an escape mechanism for insurance companies to refuse claims for our children and worse, could be interpreted as a mechanism to hinder the ability of physicians, such as DAN! practitioners, to render biomedical treatment to our children diagnosed with autism or autism spectrum disorder. We have added under EOH files a copy of the "manager's amendment" from the HELP Committee for your review. For this and other reasons, we are withdrawing our endorsement of the Combating Autism Act and we encourage your group to re-evaluate your position given the latest information. If your organization would like to join us in our public statement below, please let us know as soon as possible (angelamedlinnc (DOT) rr.com). In the alternative, we encourage you and your organization to submit your own letter of any possible concerns. STATEMENT FROM Moms Against Mercury and NoMercury Due to our ongoing concerns over the language in the Combating Autism Act S.843, we the undersigned, feel we must withdraw our endorsement of the bill. The language, as received on Tuesday, July 18, 2006, is troubling. We cannot continue to endorse the Combating Autism Act in its current form. We concur with the position of Dr. Bernard Rimland and Dr. Jacquelyn McCandless in their opposition to the bill in its current form. Jaquelyn McCandless, M.D. is Certified by the American Board of Psychiatry & Neurology, senior DAN! (Defeat Autism Now) practitioner, creator of the Mini-DAN! Physician Training Programs, and author, "Children with Starving Brains, a Medical Treatment Guide for Autism Spectrum Disorder (Bramble Books, 2nd Edition 2003). On Tuesday night, Dr. McCandless issued the following statement: "The latest version of

Combating Autism Act deviates from the consensus and omits critical areas that need to be addressed, such as the importance of environmental factors in the causes of autism. Giving power to "the Secretary, acting through the Director" to promote research to determine evidence-based best practices for diagnosis or rule out, treatment, and intervention strategies could allow avoidance of this and other important areas of research. It could also tragically allow effective and safe biomedical treatments that are helping many thousands of these afflicted persons to be denigrated or even outlawed. I do not support the bill in its latest version." We also continue to support the consensus revision of the Combating Autism Act as agreed upon last Fall by the majority of the autism community. We will continue to work together with the organizations that advocate for the support of our mercury poisoned children. Moms Against Mercury Amy Carson

Medlin NoMercury Lujene G. , President Weinmaster, Vice-President Hope this helps answer your questions and will clear up some of the confusion- Safeminds statement on CAA Pardon me if this has already been posted here. The whole statement is excellent- I particularly like this near the end: "Given the immediacy and severe impact of this epidemic, we share the frustration of many in the community that progress toward a

social consensus and a meaningful solution (stopping new cases and providing effective treatments for those already affected) is more glacial than expeditious. Mindful that we must not let the "perfect" be the enemy of the "good," the alternative of having no CAA seems clearly inferior. A political strategy that focuses on constructive engagement¢passing CAA now, working for its effective implementation, working with staff and Members, now joining with the community as allies in seeking solutions, for additional legislation in the future, and building grassroots support for this and future legislation¢is more likely to achieve the goals of our community than a demand for the Consensus Bill or nothing or a belief that

the federal government is so untrustworthy and corrupted that no positive step forward will ever be fast enough or good enough."http://www.safeminds.org/pressroom/press_releases/23Aug2006-CAA.html

All-new - Fire up a more powerful email and get things done faster.

August 29, 2006

Hi,

I am just a bit confused.... Is Mark Blaxill part of Safeminds or NAA? Just trying to follow these posts.

What ever his affiliation, he surely said what alot of us (families in my area) are thinking and discussing. At a recent biomedical parent meeting, the very points he made seemed to be echoed over and over again.

Thanks!

Leann

August 29, 2006

Dear and others,

I don't quite know how you received a copy of a private message I

wrote a couple of weeks ago regarding my reservations on CAA, but I

feel obliged to set the record straight a bit here.

First of all, although it was very much a group effort, I was the

primary author of the recent SafeMinds statement supporting CAA and I

support the position SafeMinds has chosen to take on the bill. One

reason I volunteered to write the statement was so that I could

express the difficult nature of the choices we all face in making

personal and group decisions regarding CAA. I think there are strong

arguments for and against the bill. I also believe reasonable people

can reach different judgments on the pros and cons based on the same

facts. Within one small organization, we debated the bill, we had

differences of opinion, we voted and made a choice...and then we

moved on as friends.

I also wrote the critique of CAA that was forwarded to you without my

permission, attached below. If you read it closely and compare it to

the official statement, you will find that the points I made in the

private note are in every respect repeated in the SafeMinds

statement. To the extent that the documents differ, the more recent

statement more closely reflects the facts of the matter and my

current views as I have learned more and listened to the opinions of

others. But my personal reservations are well and fully reflected in

the SafeMinds statement since, of course, I wrote most of it. If

people want to accuse me of betraying myself, so be it, but these are

all my own choices, I see no inherent conflict in them and I am fully

at peace with them all.

I want to make a passionate point here. I think it is natural,

desirable and appropriate for the autism community to debate, argue

and disagree on important issues such as CAA. But I find it highly

unfortunate when parents publicly and personally attack other parents

when their positions differ on issues and strategies. As a community,

we are far too ready to impugn the motives of others when we simply

have different points of view. I know why this happens and I

understand the impulse: we are so upset by what has happened to our

children that our tempers get short and we let our anger seep into

our interactions within the community. But that doesn't make the

anger a good thing. Anger is an indulgence. The public attacks are

particularly unwise because they have a tendency to escalate into

flame wars and take away energy we should be spending on more

productive activities. Life is too short and it's not as though we

don't have a lot on our plates to begin with.

I'll make it personal for a moment. Friends of mine have joked with

me that unnamed parents have called me " Merck Glaxo " , apparently

because I have occasionally expressed the opinion that we should not

treat business corporations as inherently corrupt. Do my opinions

have anything to do with the fact that the consulting firm I worked

for for 25 years has pharma clients? Not at all, I'm a strong

believer in the free market and the value of ethical business

activity. Did my activism give me pause when I developed an opinion

that was critical of a company that was the client of one of my

partners? Of course it did. Did that ever change what I did or said?

Not very much and shame on me if it did. Did my activism have

anything to do with the fact that I unexpectedly lost my job earlier

this year? I have no reason to believe so, but stranger things have

happened. The larger point is, we all get upset, we all get angry, we

all take positions and we all take risks of one kind or another when

we choose to become activists. But I know being accused of selling

out my child to pharma is the worst possible insult I could ever

imagine. And it sure takes an emotional toll that isn't helpful when

I'm trying to make whatever contributions I can to help the cause.

I also want to make another clarifying comment. I understand that

some groups have chosen to object to the notion of " breaking

consensus " on CAA. I want to point out that I never included that

comment in my critique. The Consensus Bill was a negotiated document,

one all the groups could sign up to, but not one we could ever have

reasonably expected Congress to accept unchanged in all its

particulars. I understand and respect the decision of some groups to

drawn the line narrowly around the Consensus Bill language. But I

don't believe we can be effective advocates for our children if we

are unprepared to negotiate and work with others on difficult

questions.

Bottom line? I believe CAA has many important advantages and many

deep problems and I tried my best to communicate these in the

SafeMinds statement. Personally, I found the colloquy langauge

particularly hard to stomach (although I can see that people I

respect differ with me in their reading of the same language) and I

was angry when a lone Senator cut $100 million at the eleventh hour.

But all that is crying over spilled milk and I am backing the

position of the group now. I encourage everyone to read the SafeMinds

statement and suggest improvements to the analysis of pros and cons;

and when you reach your own personal position regarding the balance

of the two, just keep in mind that others may disagree with how you

weighted the individual items. But that doesn't make them a bad

person, just someone with a different point of view.

Mark

>

> ,

>

> I think it is every groups choice to do what they feel

is best,

> but breaking a consensus will not build relationships with other

> organizations and definitely not build relationships with those

who have

> the real power, the parents who support the organizations.

>

> It all comes down to trust....that trust was broken

with not

> only other organizations, but many parents as well. Not a very

smart move

> in my opinion.

>

> , MAM

>

> Safeminds statement on CAA

>

> Pardon me if this has already been posted here.

>

> The whole statement is excellent- I particularly

like this

> near the

> end:

>

> " Given the immediacy and severe impact of this

epidemic, we

> share

> the frustration of many in the community that

progress

> toward a

> social consensus and a meaningful solution

(stopping new

> cases and

> providing effective treatments for those already

affected)

> is more

> glacial than expeditious. Mindful that we must not

let

> the " perfect " be the enemy of the " good, " the

alternative of

> having

> no CAA seems clearly inferior. A political strategy

that

> focuses on

> constructive engagement?passing CAA now, working

for its

> effective

> implementation, working with staff and Members, now

joining

> with the

> community as allies in seeking solutions, for

additional

> legislation

> in the future, and building grassroots support for

this and

> future

> legislation?is more likely to achieve the goals of

our

> community

> than a demand for the Consensus Bill or nothing or

a belief

> that the

> federal government is so untrustworthy and

corrupted that

> no

> positive step forward will ever be fast enough or

good

> enough. "

>

> http://www.safeminds.org/pressroom/press_releases/23Aug2006-CAA.html

>

August 29, 2006

Have you read the book?

>

> Hi,

> I am just a bit confused.... Is Mark Blaxill part of Safeminds or

NAA? Just trying to follow these posts.

>

> What ever his affiliation, he surely said what alot of us (families

in my area) are thinking and discussing. At a recent biomedical

parent meeting, the very points he made seemed to be echoed over and

over again.

>

> Thanks!

> Leann

>

August 29, 2006

Neither has signed on as co-sponsors of the bill. But this

information is about a month old.

Lenny

>

> ,

>

> I think it is every groups choice to do what they feel is best,

but breaking a consensus will not build relationships with other

organizations and definitely not build relationships with those who

have the real power, the parents who support the organizations.

>

> It all comes down to trust....that trust was broken with not only

other organizations, but many parents as well. Not a very smart

move in my opinion.

>

> , MAM

>

> Safeminds statement on CAA

>

> Pardon me if this has already been posted here.

>

> The whole statement is excellent- I particularly like this near the

> end:

>

> " Given the immediacy and severe impact of this epidemic, we share

> the frustration of many in the community that progress toward a

> social consensus and a meaningful solution (stopping new cases and

> providing effective treatments for those already affected) is more

> glacial than expeditious. Mindful that we must not let

> the " perfect " be the enemy of the " good, " the alternative of having

> no CAA seems clearly inferior. A political strategy that focuses on

> constructive engagement¢passing CAA now, working for its effective

> implementation, working with staff and Members, now joining with the

> community as allies in seeking solutions, for additional legislation

> in the future, and building grassroots support for this and future

> legislation¢is more likely to achieve the goals of our community

> than a demand for the Consensus Bill or nothing or a belief that

the

> federal government is so untrustworthy and corrupted that no

> positive step forward will ever be fast enough or good enough. "

> http://www.safeminds.org/pressroom/press_releases/23Aug2006-CAA.html

>

> ---------------------------------

> All-new - Fire up a more powerful email and get things

done faster.

>

August 29, 2006

Lenny,

The comparison, tone and degradation here are simply

wrong.. I am stunned by

your remarks, Suzanne

From: EOHarm [mailto:EOHarm ] On Behalf Of schaferatsprynet

Sent: Tuesday, August 29, 2006

1:21 AM

EOHarm

Subject: Re: Safeminds

statement on CAA/Mark Blaxill's pts. against CAA

All right, who are you and what have you done to the real Mark Blaxill?

The real Mark wouldn't stoop to all that fallacious straw man crap in

the SafeMinds statement about the Consensus supporters holding out for

perfection (see my previous post on the matter).

I liked your private original analysis. That's your better story,

unladened with public consumption spin -- and I'm stinking with it.

Lenny

> >

> > ,

> >

> > I think it is every groups choice to do what they feel

> is best,

> > but breaking a consensus will not build relationships with other

> > organizations and definitely not build relationships with those

> who have

> > the real power, the parents who support the organizations.

> >

> > It all comes down to trust....that trust was broken

> with not

> > only other organizations, but many parents as well. Not a very

> smart move

> > in my opinion.

> >

> > , MAM

> >

> > Safeminds statement on CAA

> >

> > Pardon me if this has already been posted here.

> >

> > The whole statement is excellent- I particularly

> like this

> > near the

> > end:

> >

> > " Given the immediacy and severe impact of this

> epidemic, we

> > share

> > the frustration of many in the community that

> progress

> > toward a

> > social consensus and a meaningful solution

> (stopping new

> > cases and

> > providing effective treatments for those already

> affected)

> > is more

> > glacial than expeditious. Mindful that we must not

> let

> > the " perfect " be the enemy of the " good, " the

> alternative of

> > having

> > no CAA seems clearly inferior. A political strategy

> that

> > focuses on

> > constructive engagement?passing CAA now, working

> for its

> > effective

> > implementation, working with staff and Members, now

> joining

> > with the

> > community as allies in seeking solutions, for

> additional

> > legislation

> > in the future, and building grassroots support for

> this and

> > future

> > legislation?is more likely to achieve the goals of

> our

> > community

> > than a demand for the Consensus Bill or nothing or

> a belief

> > that the

> > federal government is so untrustworthy and

> corrupted that

> > no

> > positive step forward will ever be fast enough or

> good

> > enough. "

> >

> > http://www.safeminds.org/pressroom/press_releases/23Aug2006-CAA.html

> >

>

August 29, 2006

A little off topic but Sally's post brought this to mind. I recently

read a book that had a great quote from Lord Byron that reminded me

of the situation surrounding the CAA and particularly the colloquy.

The quote is as follows: Keep thy smooth words and juggling

homilies for those who know thee not. Lord Byron (1788-1824)

British poet

I've always felt that actions speak louder than words so I looked at

the past actions of those involved rather than their smooth words

and juggling homilies which made my final decision regarding CAA

pretty clear.

Perhaps we would all do well to look beyond smooth words and

juggling homilies to the past actions of those who seemingly

reversed their position and pushed CAA through like a steam-roller.

Frist , Santorum, Gregg, Burr, Enzi et al have not made a sincere

effort to help our children in the past, in fact, they seem to have

gone out of their way to introduce and even pass legislation aimed

at hurting our children and their ability to seek justice and

truth. Has everyone forgotten the Eli Lilly Rider, S-3, or the DOD

Appropriations Report passed this last December, just to name a few

of their past actions?

Trust is a fragile asset – once it is broken; it is difficult to

repair without the cracks showing. So Frist, Santorum, et al, you

can keep your smooth words and juggling homilies for those who know

thee not; for I know thee by thy actions.

Bottom line - if it looks like a duck, walks like a duck and quacks

like a duck...it generally is a duck no matter how many times

someone tries to call it a swan.

Lujene

NoMercury

>

> Have you read the book?

>

August 29, 2006

> Lenny,

>

> The comparison, tone and degradation here are simply

> wrong.. I am stunned by your remarks, Suzanne

>

My ridicule is dead on. I am stunned by your silence over the straw

man ridicules Mark made over the pro-consensus position which I

pointed out in a previous post. That sword cuts both ways.

Lenny

August 29, 2006

(typo corrected from previous version)

All right, who are you and what have you done to the real Mark Blaxill?

The real Mark wouldn't stoop to all that fallacious straw man crap in

the SafeMinds statement about the Consensus supporters holding out for

perfection (see my previous post on the matter).

I liked your private original analysis. That's your better story,

unladened with public consumption spin -- and I'm sticking with it.

Lenny

>

> > >

> > > ,

> > >

> > > I think it is every groups choice to do what they feel

> > is best,

> > > but breaking a consensus will not build relationships with other

> > > organizations and definitely not build relationships with those

> > who have

> > > the real power, the parents who support the organizations.

> > >

> > > It all comes down to trust....that trust was broken

> > with not

> > > only other organizations, but many parents as well. Not a very

> > smart move

> > > in my opinion.

> > >

> > > , MAM

> > >

> > > Safeminds statement on CAA

> > >

> > > Pardon me if this has already been posted here.

> > >

> > > The whole statement is excellent- I particularly

> > like this

> > > near the

> > > end:

> > >

> > > " Given the immediacy and severe impact of this

> > epidemic, we

> > > share

> > > the frustration of many in the community that

> > progress

> > > toward a

> > > social consensus and a meaningful solution

> > (stopping new

> > > cases and

> > > providing effective treatments for those already

> > affected)

> > > is more

> > > glacial than expeditious. Mindful that we must not

> > let

> > > the " perfect " be the enemy of the " good, " the

> > alternative of

> > > having

> > > no CAA seems clearly inferior. A political strategy

> > that

> > > focuses on

> > > constructive engagement?passing CAA now, working

> > for its

> > > effective

> > > implementation, working with staff and Members, now

> > joining

> > > with the

> > > community as allies in seeking solutions, for

> > additional

> > > legislation

> > > in the future, and building grassroots support for

> > this and

> > > future

> > > legislation?is more likely to achieve the goals of

> > our

> > > community

> > > than a demand for the Consensus Bill or nothing or

> > a belief

> > > that the

> > > federal government is so untrustworthy and

> > corrupted that

> > > no

> > > positive step forward will ever be fast enough or

> > good

> > > enough. "

> > >

> > > http://www.safeminds.org/pressroom/press_releases/23Aug2006-CAA.html

> > >

> >

>

August 29, 2006

Lenny, I know you corrected this after, but I think Freud would call "stink" a big slip.schaferatsprynet <schafer@...> wrote: All right, who are you and what have you done to the real Mark Blaxill?The real Mark wouldn't stoop to all that fallacious straw man crap inthe SafeMinds statement about the Consensus supporters holding out forperfection (see my previous post on the matter). I liked your private original analysis. That's your better story,unladened with

public consumption spin -- and I'm stinking with it.Lenny> > > > > > > > > > > > > > > > > > ,> > > > I think it is every groups choice to do what they feel > is best,> > but breaking a consensus will not build relationships with other> > organizations and definitely not build relationships with those > who have> > the real power, the parents who support the organizations.> > > > It all comes down to trust....that trust was broken > with not> > only other organizations, but many parents as well. Not a very > smart move>

> in my opinion.> > > > , MAM> > > > > > > > > > Safeminds statement on CAA> > > > > > > > > > Pardon me if this has already been posted here.> > > > The whole statement is excellent- I particularly > like this> > near the> > end:> > > > "Given the immediacy and severe impact of this > epidemic, we> > share> > the frustration of many in the

community that > progress> > toward a> > social consensus and a meaningful solution > (stopping new> > cases and> > providing effective treatments for those already > affected)> > is more> > glacial than expeditious. Mindful that we must not > let> > the "perfect" be the enemy of the "good," the > alternative of> > having> > no CAA seems clearly inferior. A political strategy > that> > focuses on> > constructive engagement?passing CAA now, working > for its> > effective> > implementation, working with staff and Members, now > joining> > with the> > community as allies in seeking solutions, for > additional> > legislation> > in the future, and building grassroots support for > this and> > future> > legislation?is

more likely to achieve the goals of > our> > community> > than a demand for the Consensus Bill or nothing or > a belief> > that the> > federal government is so untrustworthy and > corrupted that> > no> > positive step forward will ever be fast enough or > good> > enough."> > > > http://www.safeminds.org/pressroom/press_releases/23Aug2006-CAA.html> > > > > >>

Get your email and more, right on the new .com

August 29, 2006

Thanks, .

First, I never intended for my questions to lead to the posting of a private message. I'm sorry that happened.

I agree, the environmental earmark isn't enough. Never will be until we get our answer.

Epi does matter, epi oversight matters, and what's done with epi matters. I agree.

The cutting of funding. Yes, I see the frustration there, and I don't think anyone with a mercury-injured child could not be frustrated by this.

The IOM remarks are left open to interpretation that can go in multiple directions depending on the interpreter.

I like that the bill provides an initiative for better screening, which translates into (earlier) early intervention for our children. I think that's imperative. I say this after seeing first hand, the different attitudes given to minority mothers and their children.

I like that $45 million goes to NIEHS. It may help my child, it may not. I can't disregard the funding based on a lack of trust alone. If that makes me naive in the eyes of others, that's okay. My child can't afford for me to be too much of a cynic either. If the thimerosal language was in there, it sure would have looked great on paper, and Frist would have remained at the table whether the language was in there or not.

But, using the cynicism I do have, that language could have ended up being just as pointless as the stripped language. I can't predict the future.

As for what I don't like---well, that's my own fault. I chose not to sit at the table.

I'm glad that NAA and SafeMinds stayed at the table after the manager's amendment was announced. If they had walked away, the bill would have passed with that language intact, and it could have affected how our children receive biomedical intervention.

During the VICA revamp, the language that could have made its way to passing was overwhelmingly generous to big pharma. I personally, along with a few other parents, stayed at the table while fighting the provisions. Oversight of legislative language is always a wise thing. And, for the record, I think the folks that stayed at the table have had a good track record of negotiating.

From what I understand, support of the bill was withdrawn when the manager's amendment was released, not several days earlier when the vaccine language was removed with the promise of a colloquy directing research funding to thimerosal. So like NAA and SafeMinds, (correct me if I'm wrong) you also supported the bill when you knew that the consensus version would not be introduced. It also seems you, NAA, and SafeMinds were extremely concerned with the language in the manager's amendment. It's good to know there is some common ground there.

I'm a little bummed because there is always two sides to everything...and I've had the privilege of hearing both. Therefore, I've had the opportunity to hear the reasoning behind the decisions, the different interpretations, the concerns, the benefits, etc. And I've tried my hardest to look at this only as mother. I wish all the parents had that same opportunity to hear the information. They deserve to know the full extent of everything, both sides...and all the interpretations and reasoning that go along with it.

I think overall, the bill is a step in the right direction. I'm proud of the folks that represent NAA and Safeminds, and my child. I also thank you for all you and Amy have done. I know your intentions to help your children are just as strong as anyone's. That will always sustain my respect for you, regardless if we disagree. I thank you for your e-mail that was neither attacking nor generalized. I do agree with you on some points. Disagree on others. That's where I'm at.

All in all, the ‘what if's,’ ‘could be's,’ and ‘if only's’ are something that I personally cannot hang my hat on. I can see both sides, yes. And I think all the folks that worked on the bill did so with their own children in mind, and that's never a bad thing in my eyes.

Take care,

Lori

On 8/28/06 7:21 PM, " Medlin " <angelamedlin@...> wrote:

Lori:

You have been seeking answers to the CAA which have been discussed in detail many times, by many on previous posts, but to help bring you up to speed I started listing off reasons I felt CAA was a bill we should not support.

As I started this email I received personal emails from several individuals which was a post written by Mark Blaxill of Safeminds. I felt his statement (written the day after the bill passed through the Senate) had some very valid points which closely emulates my thoughts on the CAA.

So I will forward these reasons to you as I really hate writing and felt he did a very good job of highlighting why we should not support the CAA (not sure if I agree with #3, as autism centers are usually located in Univ....never impressed with UW's center when I lived there). I would also like to add to Mark's post one other reason I felt that we shouldn't support the CAA: the fact Bill Frist supported the CAA.

Please note: Below Mark's email I responded to your question about consensus.

Below are Mark Blaxill's reason he could not support the CAA and I whole heartily agree with his thoughts (with exception of #3):

(part in bold is my emphasis):

Just a personal comment. I want to say that, based on the version of

the bill coming out of the Senate, I can no longer support CAA. The

last minute cut in new resources for research, the absence of new

requirements for ovresight and the full language of the colloquy,

which consider to restrict necessary fields of research, make this

version of CAA unacceptable. We need to send Congress back to the

drawing board. Here is my reasoning.

1. There is far too little money, spent far too late. This doesn't

treat autism as a national emergency, it treats it as a incremental

spending item

2. The bill endorses the IOM findings and offers a scriptural

interpretation that says the IOM didn't restrict funding. We know

better.

3. The environmental earmark is a pittance. I think the atism centers

in general are worth supporting, but they don't move the needle

nearly enough

4. They have not mandated the oversight provisions that we care the

most about. There is no required change in oversight in this bill.

Just a few extra IACC seats and this is something we didn't need a

bill for

5. They continue to place boundaries on investigations into the

source of the problem. We need to stop breathing our own exhaust on

the notion that epi doesn't matter. OF COURSE EPI MATTERS!!! It just

has to be done right. We need to get to the bottom of the autism

epidemic and there is no valid reason for excluding entire categories

of investigation, that's just irresponsible

6. The colloquy is terrible—THEY ENDORSE THE IOM REPORT--and their

dealing with the community in the process was nothing short of

deceptive. They gave us selective tidbits, thinking they could meet

our bottom line requirements without telling us what their entire

intent was. This is so far from the Consensus Bill language it's not

even funny.

7. Since we suspect they don't really spend $100M anyway, we can have

the same effect in increasing funding by enforcing the spending they

claim they do than by adding a nominal amount of $50M per year five

years from now

8. The last minute change in the research funding (in my mind the

ONLY reason we ever had to stay at the table) ended up cutting the

increase in research funding by over $100 million. Think about that,

to get this bill done, we lost $100 million of the most valuable part

at the 11th hour, after all the blood sweat and tears. That means the

change in research spending went from $240 million to $145 million,

THAT'S A 40% REDUCTION IN THE CORE BENEFIT OF THE BILL. NEARLY

CUTTING THE RESEARCH INCREMENT IN HALF!

I think this is a real shame, but it's time to recongize when the

benefits of the deal have shrunk too much to make the drawbacks worth

it. But that's what has happened and we need to recognize when that

has occurred.

Mark

Lori:

You made the following statement in your post, " I'm trying to understand why you broke consensus. "

MAM put out statements, along with myself, which were quite the opposite...MAM nor I ever broke consensus. We stood by the consensus bill while other organizations did not. The consensus bill was the one with the " vaccine " language (not the current bill which passed)...

Below are statements from 7/19 and 7/20 posted on several boards (that I helped personally compose) regarding the CAA. Maybe this will help clear up the confusion:

Dear Concerned Parents,

I wouldn't break out the champagne just yet, on the revisions of the Combating Autism Act.

While there have been changes made, they are not the changes you all are expecting.

This newly revised bill is still far from the consensus billed agreed upon by many autism and mercury groups that originally contained vaccine and thimerosal research language.

This revised bill still fails to do so.

This bill, as it stands now, can still work against us and treatments we are all currently providing to our children.

For these reasons and others, we still cannot endorse the current Combating Autism Act.

We encourage you all to contact your senators and let them know how you feel about the current CAA.

Please keep in mind, the folks that are asking for our trust that the right thing will happen with this bill are the same folks who have harmed our children in the past with dirty legislation. Frist, Enzi, and a former CDC staffer, to name a few.

Forever in the Fight For Our Children and Yours,

Amy Carson and Medlin

www.momsagainstmercury.org <http://www.momsagainstmercury.org>

Please feel free to forward this to any medical/autism/parent groups who share our concerns about the latest developments to this bill:

Below is a joint statement from NoMercury and Moms Against Mercury. We have very grave concerns about the current language in the Combating Autism Act (i.e. what we were promised is not what was delivered). The current version, scheduled for mark-up in the Senate HELP Committee today at 10 am could, in our opinion, hinder critical biomedical research that would provide proper diagnosis, early intervention and treatment for our children. We are concerned it may provide an escape mechanism for insurance companies to refuse claims for our children and worse, could be interpreted as a mechanism to hinder the ability of physicians, such as DAN! practitioners, to render biomedical treatment to our children diagnosed with autism or autism spectrum disorder.

We have added under EOH files a copy of the " manager's amendment " from the HELP Committee for your review.

For this and other reasons, we are withdrawing our endorsement of the Combating Autism Act and we encourage your group to re-evaluate your position given the latest information. If your organization would like to join us in our public statement below, please let us know as soon as possible (angelamedlin@...). In the alternative, we encourage you and your organization to submit your own letter of any possible concerns.

STATEMENT FROM Moms Against Mercury and NoMercury

Due to our ongoing concerns over the language in the Combating Autism Act S.843, we the undersigned, feel we must withdraw our endorsement of the bill. The language, as received on Tuesday, July 18, 2006, is troubling. We cannot continue to endorse the Combating Autism Act in its current form. We concur with the position of Dr. Bernard Rimland and Dr. Jacquelyn McCandless in their opposition to the bill in its current form.

Jaquelyn McCandless, M.D. is Certified by the American Board of Psychiatry & Neurology, senior DAN! (Defeat Autism Now) practitioner, creator of the Mini-DAN! Physician Training Programs, and author, " Children with Starving Brains, a Medical Treatment Guide for Autism Spectrum Disorder (Bramble Books, 2nd Edition 2003).

On Tuesday night, Dr. McCandless issued the following statement:

" The latest version of Combating Autism Act deviates from the consensus and omits critical areas that need to be addressed, such as the importance of environmental factors in the causes of autism. Giving power to " the Secretary, acting through the Director " to promote research to determine evidence-based best practices for diagnosis or rule out, treatment, and intervention strategies could allow avoidance of this and other important areas of research. It could also tragically allow effective and safe biomedical treatments that are helping many thousands of these afflicted persons to be denigrated or even outlawed. I do not support the bill in its latest version. "

We also continue to support the consensus revision of the Combating Autism Act as agreed upon last Fall by the majority of the autism community. We will continue to work together with the organizations that advocate for the support of our mercury poisoned children.

Moms Against Mercury

Amy Carson

Medlin

NoMercury

Lujene G. , President

Weinmaster, Vice-President

Hope this helps answer your questions and will clear up some of the confusion-

Safeminds statement on CAA

Pardon me if this has already been posted here.

The whole statement is excellent- I particularly like this near the

end:

" Given the immediacy and severe impact of this epidemic, we share

the frustration of many in the community that progress toward a

social consensus and a meaningful solution (stopping new cases and

providing effective treatments for those already affected) is more

glacial than expeditious. Mindful that we must not let

the " perfect " be the enemy of the " good, " the alternative of having

no CAA seems clearly inferior. A political strategy that focuses on

constructive engagement˘passing CAA now, working for its effective

implementation, working with staff and Members, now joining with the

community as allies in seeking solutions, for additional legislation

in the future, and building grassroots support for this and future

legislation˘is more likely to achieve the goals of our community

than a demand for the Consensus Bill or nothing or a belief that the

federal government is so untrustworthy and corrupted that no

positive step forward will ever be fast enough or good enough. "

http://www.safeminds.org/pressroom/press_releases/23Aug2006-CAA.html

August 29, 2006

Dear God Lori, some of us are old and

need glasses. I thought I aged 20 years when you emails came in. please make

your font bigger.

Holly, squinting J

From: EOHarm [mailto:EOHarm ] On Behalf Of lori mcilwain

Sent: Tuesday, August 29, 2006

8:39 AM

EOHarm

Subject: Re: Safeminds

statement on CAA/Mark Blaxill's pts. against CAA

Thanks, .

First, I never intended for my questions to lead to the posting of a private

message. I'm sorry that happened.

I agree, the environmental earmark isn't enough. Never will be until we get our

answer.

Epi does matter, epi oversight matters, and what's done with epi matters. I

agree.

The cutting of funding. Yes, I see the frustration there, and I don't think

anyone with a mercury-injured child could not be frustrated by this.

The IOM remarks are left open to interpretation that can go in multiple

directions depending on the interpreter.

I like that the bill provides an initiative for better screening, which

translates into (earlier) early intervention for our children. I think that's

imperative. I say this after seeing first hand, the different attitudes given

to minority mothers and their children.

I like that $45 million goes to NIEHS. It may help my child, it may not. I

can't disregard the funding based on a lack of trust alone. If that makes me

naive in the eyes of others, that's okay. My child can't afford for me to be

too much of a cynic either. If the thimerosal language was in there, it sure

would have looked great on paper, and Frist would have remained at the table

whether the language was in there or not.

But, using the cynicism I do have, that language could have ended up being just

as pointless as the stripped language. I can't predict the future.

As for what I don't like---well, that's my own fault. I chose not to sit at the

table.

I'm glad that NAA and SafeMinds stayed at the table after the manager's

amendment was announced. If they had walked away, the bill would have passed

with that language intact, and it could have affected how our children receive

biomedical intervention.

During the VICA revamp, the language that could have made its way to passing

was overwhelmingly generous to big pharma. I personally, along with a few other

parents, stayed at the table while fighting the provisions. Oversight of

legislative language is always a wise thing. And, for the record, I think the

folks that stayed at the table have had a good track record of negotiating.

From what I understand, support of the bill was withdrawn when the manager's

amendment was released, not several days earlier when the vaccine language was

removed with the promise of a colloquy directing research funding to

thimerosal. So like NAA and SafeMinds, (correct me if I'm wrong) you also

supported the bill when you knew that the consensus version would not be

introduced. It also seems you, NAA, and SafeMinds were extremely concerned with

the language in the manager's amendment. It's good to know there is some common

ground there.

I'm a little bummed because there is always two sides to everything...and

I've had the privilege of hearing both. Therefore, I've had the opportunity to

hear the reasoning behind the decisions, the different interpretations, the

concerns, the benefits, etc. And I've tried my hardest to look at this only as

mother. I wish all the parents had that same opportunity to hear the information.

They deserve to know the full extent of everything, both sides...and all the

interpretations and reasoning that go along with it.

I think overall, the bill is a step in the right direction. I'm proud of the

folks that represent NAA and Safeminds, and my child. I also thank you for all

you and Amy have done. I know your intentions to help your children are just as

strong as anyone's. That will always sustain my respect for you, regardless if

we disagree. I thank you for your e-mail that was neither attacking nor

generalized. I do agree with you on some points. Disagree on others. That's

where I'm at.

All in all, the ‘what if's,’ ‘could be's,’ and

‘if only's’ are something that I personally cannot hang my hat on.

I can see both sides, yes. And I think all the folks that worked on the bill

did so with their own children in mind, and that's never a bad thing in my

eyes.

Take care,

Lori

August 30, 2006

Hey, Suzanne;

I just want to say you’ve been a great advocate and friend to the autism community.

Thanks for all you do.

Lori

August 30, 2006

Hi, Holly. Sorry about that. Between the time I sent it out and when it posted, it shrunk on me. Posting again...

Thanks,

Lori

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