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Combating Autism Act on CNN

April 23, 2007

The transcript below is of Senator Rick Santorum and Representative Dan Barton's appearance on CNN's American Morning on Thursday, October 5 to discuss the Combating Autism Act with Soledad O'Brien. Click here for more information on the Combating Autism Act.

S. O'BRIEN: Well, the Foley scandal certainly has taken the attention off some of the work that Congress did not accomplish before they head to recess.

Here's a look at one important issue that was left in the lurch. The Senate unanimously passed the Combating Autism Act back in August. The $1 billion in the proposed law would be used to try to find the cause of autism and also possible treatments. The bill, though, is in the House, it's stuck there, and its future is now uncertain. The families of well over a million Americans are waiting for some help.



S. O'BRIEN (voice-over): They look like a typical American family: Ralph (ph) and Michelle Ilanarti (ph) and their young sons Jackson (ph), Bennett (ph) and Luca (ph). But look closer.

UNIDENTIFIED FEMALE: Our three kids have an autism spectrum disorder. So everything we do, you look at, you look at from a therapeutic angle.

S. O'BRIEN: The Ilanartis certainly aren't alone. One in 166 children is diagnosed with autism, one in every 104 boys. That's more children than are diagnosed with cancer and AIDS and diabetes combined.

For this suburban New York family, the most pressing number though, is three. All three boys require constant attention, and 40 hours of therapy every week.

UNIDENTIFIED FEMALE: We can't go anywhere. You know, we haven't -- Jackson has never, ever taken a week off from therapy.

UNIDENTIFIED MALE: That affects every single facet of your day and your life. Everything.

S. O'BRIEN: On August 3rd, the Combatting Autism Act was approved unanimously in the Senate. Among its provisions, allocation of $920 million over five years for autism research. It requires the National Institutes of Health to implement a strategic plan to fight autism, and it creates grants for states to develop early screening programs.

Early detection is half the battle. The Ilanarti's eldest son Jackson is five years old, still hasn't spoken a word, still isn't toilet trained. He was diagnosed late. But when the twins were born two years later, Ralph and Michelle knew what to look for.

UNIDENTIFIED MALE: We wanted them to make eye contact at like a month old. You know, Look at me.

UNIDENTIFIED FEMALE: Well, yes. That was like Luca at like four or five months. But they had little things that we obsessively looked at and brought to the pediatrician's attention. And this time, the pediatrician, you know, agreed.

S. O'BRIEN: The Ilanartis say the Combatting Autism Act is a step in the right direction.

UNIDENTIFIED FEMALE: We've always tried to support research for autism, for several reasons. You know, our kids have suffered.

S. O'BRIEN: And they hope it's a chance to bring wonderful children like theirs out of the darkness.


S. O'BRIEN: So the autism legislation is dead in committee. Congress is in recess. Washington's distracted by a big scandal. Is anybody paying attention?

Well, Senator Rick Santorum co-sponsored the bill in Senate. He's in Philadelphia this morning. Congressman Joe Barton is the chairman of the House committee that's considering the bill. He's in Fort Worth, Texas.

Gentleman, nice to see you both. Thanks for talking with us.

Congressman Barton, why don't we begin with you. First, you are chair of the committee that could have brought this bill onto the floor of the House. Why won't you do it?

REP. JOE BARTON (R), TEXAS: Well, I passed the -- the House passed the National Institute of Health reauthorization bill, 412-2, and we sent it over to the Senate, and we have asked Senator Santorum and other senators to bring that bill to the Senate floor. It includes most of what is in the autism bill that Senator Santorum has worked so hard on. And we feel like that if we can get the Senate to work with us on the NIH bill, we're more than willing to work with the Senate on Senator Santorum's autism bill.

S. O'BRIEN: So clearly, Congressman Barton, Senator Santorum, likes the NIH reform bill a little bit better. Is it true that, in fact, what's in the NIH bill pretty much is the same thing that's included in your bill?

SEN. RICK SANTORUM (R), PENNSYLVANIA: Well, it's not the same thing. There are some reforms, clearly. And we actually wrote the Combatting Autism Bill to fit into the NIH reform bill that Congressman Barton has been working on for many, many years. And as this congressman knows, I was in constant conversation with him and many House members all last week in an attempt to help the NIH bill come through the Senate, as well as to try to move the Combatting Autism Bill through the House of Representatives.

But there's some very key provisions in the Combatting Autism Bill that we've worked on for literally over a year that are not in the NIH bill that are critical. And one is the Center of Excellence for Environmental Causes. One of the things the autism community is very concerned about, and is suspicious about, is the research that's been done with respect to what causes autism. And many believe that there are environmental factors and that we need a congressionally mandated center of excellence to focus on those environmental causes. The NIH bill does not do that. In fact, it says you don't have congressionally designated centers. I think in this case, because of the suspicion about NIH and the research that's been done, we need that center and we need it congressionally mandated.

S. O'BRIEN: Congressman Barton, there are so many people who would say autism is crisis. I mean, you just look at the numbers. One in every 104 boys who are born are going to be born autistic. Isn't there a point at which one disease actually deserves the attention and, frankly, the money, as opposed to just handing it over to the NIH?

BARTON: Well, you've kind of hit on the problem there. The NIH, as it's currently structured, has 27 different institutes. It has probably several hundred centers of excellence. There are at least three centers of excellence right now in NIH on autism, and there could be as many as 21, depending on how you'd want to classify and count them. So the House is not anti-autism. Just the contrary.

But we want to reform the entire structure. And Senator Santorum wants to do that, too. We think that the NIH reform package puts in motion the accounting principles, the transparency principles, all the various things to make it possible to focus more on autism. Again, we're not anti-autism. But the senator's legislation has a specific authorization level, which no one outside of the autistic community supports that.

We already are spending more on autism than Senator Santorum's bill would authorize. So I don't see a reason to put a specific authorization level. So the differences between the House and the Senate on this issue are not nearly as great as they're perceived to be. We want to help the autistic community. In fact, almost all of the autism groups endorse the NIH reform package when it came through the House.

S. O'BRIEN: Aren't many of those...

BARTON: It passed 412-2.

S. O'BRIEN: Forgive me for interrupting you there, but aren't many of them saying that they support, as Senator Santorum just said, they support sort of both, that yes, I mean, a lot of people would say the NIH needs to be reformed, but at the same time, you have a major crisis here with autism.

BARTON: Well, the point -- and again, Senator Santorum is one of my best friends, and he's worked tirelessly on this issue, and he's to be commended for that. We're not opposed to the principles in the Santorum bill. We have sent back to the Senate, not formally, but unofficially a proposal that mirrors Senator Santorum's bill 95 percent.

S. O'BRIEN: Is that true, Senator Santorum? Do you think you've got something that's coming back to you to that mirrors that 95 percent? Is that 95 percent close enough? SANTORUM: Well, you know, the problem is that there are three major things that are not in the proposal that are just, from my perspective, maybe 90 percent or 95 percent, although it's about two- thirds of the actual language of the bill that's been taken out. I would suggest that it's a bigger chunk than that, and it's very important things.

You know, autism is a disorder that really doesn't have a home in NIH. I mean, it just falls through the cracks of the Institutes. It's sort of parceled out in a lot of different places. And you know, the Senate is not big on passing disease-specific bills. We haven't passed one in five years, because of what Congressman Barton said, you know, the problems over at NIH.

But we believe and the Senate believes, and Senator Dodd is my sponsor on the Democratic side, after looking at this -- and by the way, Senator Kennedy and Senator Enzi, who are chairmen of the committee, they really believe that this was a special case, as you said, Soledad, and that we really needed to do something special, because of this suspicion in the autism community, that the research that's been done at NIH really doesn't reflect the reality of what's going on out there, and that's why we, unlike an NIH reform, we need Congress to step in actually and tell NIH to do this particular kind of research. We need to tell them to take -- to focus on an area, which, to date, the community has not convinced that they've done a good job at.

S. O'BRIEN: Gentlemen, before I let you go, I've got to ask you a question about the Mark Foley scandal. I know you're both prepared to talk about it, because I know it's probably all you've talked about for the last few days. Do you still support the House speaker? Do you think that Congressman Hastert, in fact, if what this new aide, the new allegations, this aide saying that, in fact, the office knew much earlier, do you think he still has you've support as a leader?

BARTON: Well, let me speak first since I'm in the House. I talked to Speaker Hastert yesterday. I totally support him. I think he's a man of integrity and decency. I believe he's telling the truth. I think Congressman Foley is an isolated case. He's resigned from the House. An investigation is being conducted by the FBI. I think we ought to focus on the issues and move on, and let the judicial system and the rehabilitation system take care of Congressman Foley.

S. O'BRIEN: If indeed it turns out, Senator Santorum, that Congressman -- that information about Congressman Foley in fact made its way to Congressman Hastert's office much earlier than was first reported, and first believed, maybe years before, do you think that would be reason for more Republicans to be calling for him to step down?

SANTORUM: Well, I would just say that this is a very serious matter, and obviously some people, whether it was staff members, certainly no staff members knew about this, you know, as much as now recently reported a couple of years ago, they didn't take it seriously, and that is -- that's -- I can't tell you how much I condemn that. It is absurd that we have -- these pages who are entrusted to us, that they would be made vulnerable to a predator, and that some people, obviously some people knew this was going on and didn't act. And the question is, who knew it. Did the staff members withhold it from members of Congress? If that's the case, the staff members should suffer the consequences. If it's not the case, if the member of Congress actually knew about these transgressions, than those members have to be held accountable. We should have a less than zero tolerance, if that's possible, attitude toward this type of behavior.

S. O'BRIEN: Senator Rick Santorum of Pennsylvania, Congressman Joe Barton of Texas, gentlemen, thanks -- Miles.

M. O'BRIEN Still to come on the program, the crisis in Darfur. For an entire generation of children, the life of a refugee is the only life they know.

Dr. Sanjay Gupta will show us how they struggle to survive. That's ahead.

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