October 29, 2006

Barton's Meeting with "Parents"

From Kristi Hammer:

Okay guys…Here is a summary of the town hall meeting. I hope it
makes sense…I am pooped, but really wanted to get this in your hands

Town Hall Meeting – 6 invited, 6 guests in his office last night.

Barton continues to stick to his position that NIH Reform, if
passed, will cover the same thing as S.843 CAA. This is entirely
untrue. He admitted that NIH Reform has zero provisions for autism
specifically, and no timelines for impacting change. If passed NIH
Reform would keep present levels of funding for diseases "whole" for
3 years" VERY BAD news for us since we aren't getting much now.
There will be $1.4 billion dollars in the first year that will
be "up for grabs" to any disease who can prove their research
worthy. In other words, we continue to compete with the other
diseases…a battle which we have consistently lost. Nothing changes
for us.

He also confirmed that under no circumstances will he release CAA
for vote (neither the Senate or House bills). Period.

After much debate, he told the participants (12, and maybe ½
parents), that if they would "bring him some language that would be
suitable to us" he would "work with us to get something done on
it" Here are the caveats to this. I can pretty much guaranty that
whatever local parents drafted, and he agreed upon (if that ever
happened) would be insufficient to the Autism community and they
would kill the bill themselves, and start over. Then the autism
community could look like the "unreasonable ones", and he would be
off the hook. Also, this proposed language, if used, would be part
of his NIH Reform bill. There is ZERO possibility that NIH Reform
could pass in the lame duck session. Not because no one wants it,
but there is simply not enough time, and there is no companion
Senate Bill.

So….no matter what, left in Barton's hands, the Autism provisions
will die in December. He won't release CAA, and although he claims
he might put a few autism provisions in NIH Reform (if the
participants in the town hall write it), it doesn't matter because
NIH Reform won't have a chance to pass, and the autism community
wouldn't accept it.. Either way we lose, and I think that is the

The bottom line is, at this point, only Hastert, or the Discharge
Rule could move this forward this year. We will get this done next
year, if the Dems take the house, but it will be at least another
52 weeks, at a cost of 36,000 children being newly diagnosed, and
the rest of us put off for yet another year over one man's
politics/ego. We explained to him what this delay meant in terms of
the human impact, and he was unmoved.

There were a number of people there last night who thought Barton
was "very sincere" in his desire to work with us. If you are on
this list and reading this, please don't buy into that.. I can't
say it enough. The autism community will not accept anything but
S.843, and he would be using you to get some language that he could
take to the autism community, so that they would be forced to turn
it down, and they would be the bad guys…not him. Don't let that
happen to us.

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