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AUTISM SPECTRUM DISORDERS: AN UPDATE OF

FEDERAL GOVERNMENT INITIATIVES AND

REVOLUTIONARY NEW TREATMENT OF NEURODEVELOPMENTAL DISEASES

HEARING

BEFORE THE

SUBCOMMITTEE ON HUMAN RIGHTS AND

WELLNESS

OF THE

COMMITTEE ON

GOVERNMENT REFORM

HOUSE OF REPRESENTATIVES

ONE HUNDRED EIGHTH CONGRESS

SECOND SESSION

MAY 6, 2004

Serial No. 108–192

Printed for the use of the Committee on Government Reform

(

Available via the World Wide Web: http://www.gpo.gov/congress/house

http://www.house.gov/reform

(II)

COMMITTEE ON GOVERNMENT REFORM

TOM DAVIS, Virginia, Chairman

DAN BURTON, Indiana

CHRISTOPHER SHAYS, Connecticut

ILEANA ROS-LEHTINEN, Florida

JOHN M. MCHUGH, New York

JOHN L. MICA, Florida

MARK E. SOUDER, Indiana

STEVEN C. LATOURETTE, Ohio

DOUG OSE, California

RON LEWIS, Kentucky

JO ANN DAVIS, Virginia

TODD RUSSELL PLATTS, Pennsylvania

CHRIS CANNON, Utah

ADAM H. PUTNAM, Florida

EDWARD L. SCHROCK, Virginia

JOHN J. DUNCAN, JR., Tennessee

NATHAN DEAL, Georgia

CANDICE S. MILLER, Michigan

TIM MURPHY, Pennsylvania

MICHAEL R. TURNER, Ohio

JOHN R. CARTER, Texas

MARSHA BLACKBURN, Tennessee

PATRICK J. TIBERI, Ohio

KATHERINE HARRIS, Florida

HENRY A. WAXMAN, California

TOM LANTOS, California

MAJOR R. OWENS, New York

EDOLPHUS TOWNS, New York

PAUL E. KANJORSKI, Pennsylvania

CAROLYN B. MALONEY, New York

ELIJAH E. CUMMINGS, Maryland

DENNIS J. KUCINICH, Ohio

DANNY K. DAVIS, Illinois

JOHN F. TIERNEY, Massachusetts

WM. LACY CLAY, Missouri

DIANE E. WATSON, California

STEPHEN F. LYNCH, Massachusetts

CHRIS VAN HOLLEN, Maryland

LINDA T. SANCHEZ, California

C.A. ‘‘DUTCH’’ RUPPERSBERGER, Maryland

ELEANOR HOLMES NORTON, District of

Columbia

JIM COOPER, Tennessee

——— ———

———

BERNARD SANDERS, Vermont

(Independent)

MELISSA WOJCIAK, Staff Director

DAVID MARIN, Deputy Staff Director/Communications Director

ROB BORDEN, Parliamentarian

TERESA AUSTIN, Chief Clerk

PHIL BARNET, Minority Chief of Staff/Chief Counsel

SUBCOMMITTEE ON HUMAN RIGHTS AND WELLNESS

DAN BURTON, Indiana, Chairman

CHRIS CANNON, Utah

CHRISTOPHER SHAYS, Connecticut

ILEANA ROS-LEHTINEN, Florida

DIANE E. WATSON, California

BERNARD SANDERS, Vermont

(Independent)

ELIJAH E. CUMMINGS, Maryland

EX OFFICIO

TOM DAVIS, Virginia HENRY A. WAXMAN, California

MARK WALKER, Chief of Staff

MINDI WALKER, Professional Staff Member

DANIELLE PERRAUT, Clerk

RICHARD BUTCHER, Minority Counsel

(III)

C O N T E N T S

Page

Hearing held on May 6, 2004 ................................................................................. 1

Statement of:

Buttar, Rashid, DO, creator of a transdermal chelator, Cornelius, NC;

Paul Harch, M.D., president, International Hyperbaric Medical Association; Ken Stoller, M.D., Santa Fe, NM; and Julie Gordon, founder

and director, MUMS—Mothers United for Moral Support, accompanied

by Shannon Kentiz of Wisconsin ................................................................. 31

Justesen, Troy, Acting Assistant Secretary, Office of Special Education

and Rehabilitative Services, Department of Education ............................. 9

Letters, statements, etc., submitted for the record by:

Burton, Hon. Dan, a Representative in Congress from the State of Indiana, prepared statement of .......................................................................... 4

Buttar, Rashid, DO, creator of a transdermal chelator, Cornelius, NC,

prepared statement of ................................................................................... 36

Gordon, Julie, founder and director, MUMS—Mothers United for Moral

Support, prepared statement of ................................................................... 90

Harch, Paul, M.D., president, International Hyperbaric Medical Association, prepared statement of .......................................................................... 62

Justesen, Troy, Acting Assistant Secretary, Office of Special Education

and Rehabilitative Services, Department of Education, prepared statement of ........................................................................................................... 12

Ros-Lehtinen, Hon. Ileana, a Representative in Congress from the State

of Florida, prepared statement of ................................................................ 106

Stoller, Ken, M.D., Santa Fe, NM, prepared statement of ............................ 73

Watson, Hon. Diane E., a Representative in Congress from the State

of California, prepared statement of ........................................................... 21

(1)

AUTISM SPECTRUM DISORDERS: AN UPDATE

OF FEDERAL GOVERNMENT INITIATIVES

AND REVOLUTIONARY NEW TREATMENT OF

NEURODEVELOPMENTAL DISEASES

THURSDAY, MAY 6, 2004

HOUSE OF REPRESENTATIVES,

SUBCOMMITTEE ON HUMAN RIGHTS AND WELLNESS,

COMMITTEE ON GOVERNMENT REFORM,

Washington, DC.

The subcommittee met, pursuant to notice, at 2:15 p.m., in room

2247, Rayburn House Office Building, Hon. Dan Burton (chairman

of the subcommittee) presiding.

Present: Representatives Watson and Burton.

Also present: Representative Weldon.

Staff present: Mark Walker, staff director; Mindi Walker, Brian

Fauls, and Dan Getz, professional staff members; Danielle Perraut,

clerk; Nick Mutton, press secretary; Richard Butcher, minority

counsel; and Jean Gosa, minority assistant clerk.

Mr. BURTON. Good afternoon. A quorum being present, the Subcommittee on Human Rights and Wellness will come to order.

I ask unanimous consent that all Members’ and witnesses’ written and opening statements be included in the record. Without objection, so ordered.

Congressman Watson, I understand, who is the ranking member

of this subcommittee, will be here shortly.

I ask unanimous consent that all articles exhibits and extraneous

or tabular materials referred to be included in the record; and,

without objection, so ordered.

In the event of other Members attending today’s hearing I ask

unanimous consent that they be permitted to serve as a member

of the subcommittee for the purpose of today’s hearing. Without objection, so ordered.

The subcommittee is convening today to examine the advances in

Federal Government initiatives, as well as new treatments that

have been shown to benefit the medical condition of individuals afflicted with Autism Spectrum Disorder.

As many of us already know, the incidences of autism have become increasingly prevalent in modern-day society. Once considered a rare disease, affecting roughly 1 in 10,000 children, autism

now affects 1.5 million of our Nation’s children; and the problem

continues to escalate.

According to a recent ‘‘Autism Alarm’’ released by the U.S. Department of Health and Human Services and the Centers for DisVerDate 11-MAY-2000 12:14 Sep 29, 2004 Jkt 000000 PO 00000 Frm 00005 Fmt 6633 Sfmt 6633 D:\DOCS\95740.TXT HGOVREF1 PsN: HGOVREF1
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ease Control and the American Academy of Pediatrics, currently, as

I said, 1 out of every 6 children are diagnosed with a developmental disorder and/or behavioral problem. Even more alarming,

today 1 out of every 166 children in the United States is being diagnosed with an Autism Spectrum Disorder.

This is a major health care crisis that has to be addressed by our

health agencies because it’s simply not going to ‘‘go away.’’ It just

gets worse and worse.

As such, the U.S. Government has rightfully begun to acknowledge the present and future public health implications of this autism epidemic by establishing an Interagency Autism Coordinating

Committee. The IACC is comprised of representatives from HHS,

the National Institutes of Health, the Department of Education, as

well as various non-governmental organizations and parental support groups.

The IACC meets on a bi-annual basis to discuss and coordinate

the various research projects with regard to autism, as well as to

keep an open dialog in addressing the numerous health care and

educational needs of individuals with autism.

To further address the concerns of the autism community, HHS

and the Department of Education at long last sponsored the firstever ‘‘National Autism Summit’’ in November 2003. Some of the

best scientific and medical researchers, as well as autism activists,

key Members of Congress, and a host of parental support groups

initiated an open dialog on the status of research initiatives.

This summit was essential to bridging the relationship between

the government, non-governmental organizations and private citizens.

To better explain the status of Federal Government autism initiatives, the subcommittee has the pleasure of hearing testimony

today from the Honorable Troy Justesen, the Acting Assistant Secretary in the Office of Special Education and Rehabilitative Services at the U.S. Department of Education.

During my tenure as chairman of the full Committee on Government Reform, and as the current Chair of this subcommittee, I

have convened 20 hearings on the topics of autism, vaccine safety,

and the detrimental health effects of mercury-containing medical

products.

We’ve been successful in getting mercury out of almost all children’s vaccines except, I think—what—three. The problem is that,

still on the shelves, are vaccines that are being given to children

that contain mercury that are no longer being produced. We need

to have a recall on those, but so far HHS and CDC has not chosen

to do that. But we’re working on them.

During these investigations, numerous scientists from around the

globe have testified before the committee and have presented credible peer-reviewed research studies that indicated a direct link between the exposure of mercury, a widely known neurotoxin, and

the increasing instances of autism. Because autistic individuals

typically have a high concentration of mercury stored in their bodies, many doctors are concerned with how exactly they can safely

remove these toxins from their patients without exposing them to

greater medical risks.

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One popular method to remove this poisonous metal, called chelation therapy, involves an intravenous solution that disperses and

collects mercury, ultimately to be flushed out of the body. Unfortunately, because of the way in which this therapy is administered,

it is not recommended for use with children, although some are

doing it. Dr. Rashid Buttar has developed a groundbreaking

transdermal chelator that has proven safe to use in treating pediatric patients.

Dr. Buttar is testifying before the subcommittee today to speak

on his personal success and application of this groundbreaking

treatment. I’m really anxious to hear what the doctor has to say

about that. I think it will be great if it works as I hear it has.

Another cutting-edge medical development currently being used

and tested for the use in autistic patients is Hyperbaric Oxygen

Therapy. This treatment, which involves the delivery of pressurized

oxygen to a patient, has been recently used to assist with the regeneration of neurons in brain-injured individuals. Dr. Paul Harch,

president of the International Hyperbaric Medical Association, will

discuss how the use of hyperbarics may be a viable therapy to administer to persons afflicted with an Autism Spectrum Disorder.

In addition, Dr. Ken Stoller has been invited to further supplement the testimony of Dr. Harch and discuss additional uses for

hyperbaric treatments for patients afflicted with other

neurodevelopmental diseases and injuries.

Finally, to gain the perspective of parents of brain-injured children, Ms. Julie Gordon, founder and director of MUMS, Mothers

United for Moral Support, will be testifying today in regard to how

coalitions of parents have come together and effectively lobbied for

the advancement of their children’s health.

As I stated before, autism is an epidemic, and I sure hope our

health agencies are paying attention, because it really is, and it directly affects millions of Americans, including every single taxpayer

in the United States and will for decades to come.

I am pleased to see that our Nation’s health and education agencies are beginning to do their part to address this pandemic situation. I implore them to continue their fight against these devastating diseases and get mercury out of all vaccines for children and

adults. We haven’t mentioned people who are aging, who have neurological disorders, but there is a growing body of evidence that the

mercury has affected them as well.

I’d like to thank all our witnesses for making the long trip to

Washington for this most important hearing, and I look forward to

hearing about the revolutionary treatments and current research

that will hopefully 1 day completely eradicate these spectrum disorders.

[The prepared statement of Hon. Dan Burton follows:]

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Mr. BURTON. Since Ms. Watson is not yet here, we’ll go ahead

and have our first panel start. That is the Honorable Troy

Justesen. He is the Assistant Secretary, Acting, in the Office of

Special Education and Rehabilitative Services for the Department

of Education.

[Witness sworn.]

Mr. BURTON. Do you have an opening statement, sir?

Mr. JUSTESEN. I do. I will try to make it quick so you have the

opportunity to hear from the more important people here, which

are the parents.

First of all——

Mr. BURTON. I think what you have to say is important, too; and

I have a couple questions for you.

STATEMENT OF TROY JUSTESEN, ACTING ASSISTANT SECRETARY, OFFICE OF SPECIAL EDUCATION AND REHABILITATIVE SERVICES, DEPARTMENT OF EDUCATION

Mr. JUSTESEN. OK, sir.

Thank you for the opportunity to discuss our initiatives for children with autism and Autism Spectrum Disorders [ASD], and our

work at the Department of Education.

As you know, Mr. Chairman, the Individuals with Disabilities

Education Act provides educational services for children with disabilities, including children with ASD, throughout the Nation’s

schools. Today, more than 6.9 million children with disabilities are

receiving special education and related services, and that number

continues to grow. As States reported in 1999 through 2002, a 1.6

percent annual increase in the number of children with disabilities

receiving special education and related services. During that same

time, the number of children with autism receiving special education and related services increased to an average annual rate of

at least 22 percent.

We acknowledge the importance of these numbers and are focused on identifying and implementing effective, evidence-based

practices for children with ASD.

This year, the Department of Education is investing $8.6 million

in our discretionary funds for projects that address the needs of

children with ASD. These investments fund a total of 51 projects,

31 of which focus solely on ASD, 21 of which are designed to improve services and prepare personnel to meet the needs of children

with ASD as part of a larger group of children with low-incidence

disabilities.

I am pleased to provide to you a highlight of some of our efforts

and our investments at the Department.

In order to prepare highly qualified and trained educators to

work effectively with children with ASD, we have invested in the

Professional Development in Autism Center. This national research

and training center is receiving $5 million over 5 years to increase

the capacity of schools, families and communities to meet the needs

of students with ASD. This center provides intensive hands-on

training to teams of educators. It also disseminates useful information and is having a national impact through a consortium of six

States across the country that includes Washington, Florida, and

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Maryland. We also invest in programs that specifically address the

needs of teachers and related services personnel.

Under Secretary Paige’s direction, we are also making investments in research projects in Tennessee and Florida, focusing on

early indicators of autism in the second and third years of life.

Through these projects researchers are now accurately distinguishing some children with autism from typically developing children

as early as 12 months of age. This is especially significant based

on research that shows that early and accurate diagnosis and early

intervention results in better outcomes for children with ASD.

Further, we continue to support model demonstration programs

that develop and implement successful practices for working with

children with ASD and their families. For example, the Seattle

public school system has adopted an OSERS, which is the Department of Education’s funded program, that blends several evidencebased practices and approaches to meet the needs of children with

ASD, their families, and the educators that work with these children. The children who participate in this program have made tremendous gains across all of the domains of measurement. At this

point, 418 children completed the program, and of these 58 percent

of these children entered inclusive elementary programs.

With the Department’s support, the project trains early education providers, teachers and family members across the State of

Washington and in more than 20 other States. This project now includes a successful outreach training component designed to help

educators implement and evaluate school-based programs.

The Department remains committed to providing support for

families through a variety of projects. For example, we have a

project in Boston that addresses parental involvement in public

schools. This project promotes parental involvement in each of their

child’s educational programs and to increase the abilities of these

parents to sustain involvement in their child’s lives through their

educational experiences. This project is particularly important to

families of children with autism because in many cases their challenges are lifelong.

We recognize the need to work with medical research and practice communities and with other Federal agencies. To accomplish

this, the Department of Education, as you mentioned earlier, actively participates in the Interagency Autism Coordinating Committee, which is chaired by the National Institute on Mental

Health.

In closing, I want to emphasize to you, Mr. Chairman, and other

members of the committee, that Secretary Paige and I recognize

the vitally important work that needs to be done to meet the needs

of children with ASD and their families and the educators who

work with these children. We believe that the Individuals with Disabilities Education Act plays a critical role in supporting States,

local districts, and parents in providing evidence-based practices

for children with Autism Spectrum Disorders and their families

and their families’ friends. We remain committed to ensuring that

all children are full participants in their homes, in their schools,

and ultimately in their communities.

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I’d like to thank you for letting me come today and offer these

comments, Mr. Chairman. I’m pleased to answer any questions you

may have.

[The prepared statement of Mr. Justesen follows:]

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Mr. BURTON. First of all, give my regards to Secretary Paige. I

think he is doing an outstanding job. He’s been one of the secretaries in the President’s Cabinet that has always been very cooperative with the Congress, and I appreciate that.

Ms. Watson, do you have an opening statement?

Ms. WATSON. I want to thank you, Mr. Chairman.

Previously, autism was considered a rare disease, affecting

roughly 1 in 10,000 children; and, according to the latest estimates,

autism rates in the United States indicate that 1 in every 500 children are affected by the disorder. The rising prevalence of autism

is disconcerting.

Mr. Chairman, I understand the anguish and confusion that Autism Spectrum Disorders can cause, and I am pleased to acknowledge that the U.S. Government has begun to look at the public

health implications of Autism Spectrum Disorder by establishing

an Interagency Autism Coordinating Committee. To address the

concerns of the autism community, the U.S. Health and Human

Services and the Department of Education sponsored the inaugural

National Autism Summit in November 2003.

In addition, I commend the Chair for the autism focus of the

Human Rights and Wellness Subcommittee. The American public

should be informed to the best of our ability, and our Chair is doing

that.

I would also like to thank the Honorable Troy Justesen from the

Department of Education for your testimony today, and we appreciate it so much.

In my home State of California, the number of children diagnosed with autism has increased dramatically since the late 1980’s.

Autism is now more prevalent than childhood cancer, diabetes and

Down’s syndrome. If the increase in autism caseload numbers continue, in approximately 4 years the number of people with autism

in the California Development Services system will equal each population of people with cerebral palsy and epilepsy that are in the

system.

As a State Senator and Chair of the Health and Human Services

Committee in California, I authored legislation to create a center

in which research could be initiated on neurodevelopmental disorders. The University of California at Davis MIND Institute offers

hope in unraveling the mystery that has long surrounded autism

and Autism Spectrum Disorders, fragile X syndrome, and other developmental disorders.

The MIND Institute brings together diverse groups, parents, educators, physicians, and scientists, using an integrated, comprehensive approach in treating and finding cures for these

neurodevelopmental disorders. Key research under way at the

MIND Institute includes identifying the similarities and differences

among children with autism, understanding the causes, working toward prevention, creating and providing the best treatment.

Mr. Chairman, it’s important to encourage innovative wholistic

approaches for treatment of the affected individuals; and I look forward to the presentation on the transdermal chelation process that

is utilized by Dr. Rashid Buttar. Dr. Buttar and a growing number

of health and science professionals postulate that heavy metal toxVerDate 11-MAY-2000 12:14 Sep 29, 2004 Jkt 000000 PO 00000 Frm 00023 Fmt 6633 Sfmt 6633 D:\DOCS\95740.TXT HGOVREF1 PsN: HGOVREF1
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icity is at the root of several disorders such as Alzheimer’s and autism.

Unfortunately, chelating agents are administered through intravenous drip. HIV—excuse me, IVs—and there is no Freudian slip

there; it’s just a mistake—IVs are not recommended for repeated

use in children. A transdermal application of a chelator is a

groundbreaking treatment modality in that children can benefit

and participate.

It is a special treat to have Abid Buttar with us today. As a precocious 5-year-old, after treatment—and you can just wave your

hand—Abid is a precocious 5-year old that, after treatment, can

now verbalize his thoughts and play chess on his Scooby-Doo chessboard, as opposed to losing the ability to speak at 18 months.

I am pleased to announce that the chairman and I have nominated Dr. Buttar to the National Institute of Health for consideration of the Director’s Pioneer Award. The award provides a stipend for research in areas that are not funded by main stream

sources.

I also look forward to testimony from Dr. Harch, president of the

International Hyperbaric Medical Association, and also Dr. Stoller.

Hyperbaric oxygen therapy is a cutting-edge natural treatment and

natural science that has shown promising results for patients afflicted with neurodevelopment diseases. Pressurized oxygen has

also been used to explore the possibility of neuron regeneration in

brain injured individuals.

So I see a very exciting future, Mr. Chairman. In this regard I

think we have a lot to look forward to and thank you very much.

I yield back my time.

Mr. BURTON. Thank you, Ms. Watson.

[The prepared statement of Hon. Diane E. Watson follows:]

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Mr. BURTON. I just have a couple of questions for you, Mr. Secretary. Can you give us a little of the details on this 10-year plan

in regard to autism that was established after the 2003 Autism

Summit?

Mr. JUSTESEN. Well, I can give you a little bit of details. We can

certainly provide the committee with a clear explanation because

we have a chart that was developed principally by the leadership

of HHS in which we developed short-term, mid-term, and long-term

goals for achieving some of the research questions that remain to

be answered and beyond the core medical research questions that

we still need to answer how we can better educate children who

have been identified as having ASD. We have that chart that is

very detailed and how we are working chiefly between the Departments of Education and Health and Human Services on those initiatives.

We have begun—that work has just begun, because the conference was held, as you know, in late fall of last year; and our

committee is meeting again in June. The Interagency Coordinating

Committee meets again in June. We plan to meet at least twice a

year as a group, as a full Federal committee, and between those

core major committees to have interagency smaller subcommittees.

Mr. BURTON. If you could send us not only this chart you’re talking about but any details on the timetable.

Mr. JUSTESEN. The chart outlines very clearly. We’ll make sure

your staff has my copy.

Mr. BURTON. We’ll submit that for the record.

The other thing I’d like to ask you is, my grandson was in a special education program in Noblesville, IN, which is just north of Indianapolis. When he first was put into the program so he could get

speech therapy and the sorts of things that you need when you

have autism, his doctor prescribed I think three sessions a week,

and they said they would only give him one a week.

And I know that many patients around the country have the

same kind of problem. Their child needs continual teaching to try

to overcome the handicaps that they might have. What does the

Department of Education do or plan to do where the educational

system says, OK, we can do this once a week, for instance—this is

just an example—and the doctor says, hey, you should be doing it

three times a week in order to get his speech up to where it should

be?

Mr. JUSTESEN. Well, that’s a very good question. That’s a very

complex question to answer.

Let me take a step back. As you know, your grandson has what

is called an Individualized Education Program [IEP], in which your

grandchild’s parents, regular and special educators and other qualified experts are members of a team that evaluate the special education and related services as well as regular educational needs for

your grandson.

Mr. BURTON. I’m not just talking about him. I’m talking about

all kids.

Mr. JUSTESEN. This is an IEP. The membership is a requirement

under the IDEA. That team together makes a determination about

the individualized services that child, regardless of the child’s disVerDate 11-MAY-2000 12:14 Sep 29, 2004 Jkt 000000 PO 00000 Frm 00032 Fmt 6633 Sfmt 6633 D:\DOCS\95740.TXT HGOVREF1 PsN: HGOVREF1
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ability, needs in order to benefit from special education and regular

education.

Mr. BURTON. Pardon me for interrupting—in this particular case,

I don’t think it was just the doctor alone. And I know other parents

have probably experienced this. It was the team, IE, the group

you’re talking about, that said that he needed to have this kind of

continual help; and the school said because of the financial resources that they had that they were not able to provide sessions

three times a week.

And the parents are really perplexed when they have a child

that’s damaged and they get one recommendation and then the

educational system says that they can’t adhere to that recommendation. What, if anything, is the Department of Education

doing to try to accommodate these parents?

Mr. JUSTESEN. Well, the Department of Ed has oversight responsibility for both State and local school districts and their obligations to effectively implement the IDEA which, among other things,

requires the appropriate implementation of what is clearly stipulated in each child’s IEP. If that is not fully implemented, then

there are concerns of which the local school district would be the

first area of recourse for the parents and then the State. We have

a monitoring function at the Federal level of each State’s implementation of the IDEA; and Indiana is, of course, a State that we

would monitor for compliance.

It is commonly misunderstood at times about what is and is not

a requirement with respect to each individual child. If it’s in a

child’s IEP and it has been agreed by the child’s IEP team, those

are services that must be provided in accordance with what is

clearly written in that child’s IEP. We ultimately at the Federal

level have the responsibility to ensure that basic right for each

child is ultimately respected.

Mr. BURTON. That’s good information, because I think not only

the people here in the audience but I’m sure parents around the

country would like to know what the appeal process is. So they go

first to their legal school board and say they’re not complying and

then if that doesn’t work they go to the State superintendent of

education.

Mr. JUSTESEN. Well, yes—if I may, the first stage of course

should be a discussion with the IEP team; and then also——

Mr. BURTON. Don’t worry about that. That’s just the President

calling all of us.

Mr. JUSTESEN. I’m glad he is calling you and not me.

Mr. BURTON. We have a series of votes coming up.

Mr. JUSTESEN. But the opportunity to mediate disputes among

members of the IEP team is very important, and we don’t find—

and it isn’t a good practice to resort to litigation or confrontation

or due process as we call it under the statute to protect the individual rights and opportunities for the patients.

Mr. BURTON. I understand. I will yield to Ms. Watson. I understand. And that’s—in our case, we talked to the teachers and the

people in the school and then we went—what was necessary to

make sure the law was followed.

But I think, for everybody else, that is extremely important to

know there is an appeals process and not only do you talk to the

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school and the teachers but you also go to the local school board

and, if necessary, to the State; and then usually you can get that

problem resolved.

Ms. Watson.

Ms. WATSON. I just want to followup, Mr. Chairman. I just—one

question. It seems like you are defining your mission. Is the way

the coordinating committee is constituted going to have enough influence to affect programs?

Mr. JUSTESEN. Well, Dr. Watson—I’m sorry, I’m an academic

doctor, Congresswoman.

Ms. WATSON. That’s all right. You can call me Dr. Watson in this

environment.

Mr. JUSTESEN. I think it’s important for us to have the opportunity as an interagency coordinating council—which isn’t something that the Federal Government, as you well know, is accustomed to working beyond from one agency to another in an interagency perspective. We have an opportunity to build on our very

first meeting that we held last fall and to begin working in and understanding that these are more than just basic questions that are

relevant to only one Federal agency, that the concerns of children

with autism and autistic spectrum disorders, pervasive developmental disorders, and other disorders along this spectrum, that it

is the responsibility of the entire Federal Government and those

agencies that specialize in providing support for their children and

for educators and their parents.

So, yes, give us——

Ms. WATSON. I’m sorry to cut you off. We’re going to have to go

to the floor.

But is this part of 97–142, that funding comes underneath that?

Because I know there was mention of the Leave No Child Behind,

which is, at this point, unfunded mandate. So is there a pot of

money at the States?

Mr. JUSTESEN. Are there funds especially for the interagency coordinating council? I’m sorry.

Ms. WATSON. The umbrella for autism.

Mr. JUSTESEN. Oh, yes, the IDEA is an investment in more than

6.8 million children with disabilities. That includes children with

autism.

Ms. WATSON. So we can move forward with your agenda.

Mr. JUSTESEN. An investment in No Child Left Behind, which is

an elementary and secondary—is also an investment in children

with disabilities.

Ms. WATSON. I want to thank you so much for stating that, and

I would hope that you would keep a strong commitment. We

worked on it for years, as I mentioned, in California. We’re very,

very involved; and I know the Chair is. We’re working together to

see that the services are delivered so we can have more young children we can be proud of who have already made this step into a

normal behavior, normal speech; and I commend you for your efforts as I run out the door to vote.

Mr. JUSTESEN. By the way, we have four research initiatives in

California.

Ms. WATSON. Great.

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Mr. BURTON. Secretary Justesen, we really appreciate your testimony today. Once again, give our regards to the Secretary.

Ladies and gentlemen, we have three votes on the floor; and that

means that we’ll probably be at least 30, 35 minutes before we get

back here. I don’t want you all to just sit there. So if you want to

get up and move around or get a Coke or something, go ahead and

do that. But we’ll be back here probably about a quarter after or

20 after 3.

So we stand in recess at the fall of the gavel.

[Recess.]

Mr. BURTON. The committee will reconvene.

The second panel is Dr. Rashid Buttar. He is the creator of a

transdermal chelator; and he is from Cornelius, NC.

Would you come forward, Doctor?

We also have Dr. Paul Harch, the president of the International

Hyperbaric Medical Association; Dr. Ken Stoller, he is a doctor

from Santa Fe, NM; and Ms. Julie Gordon, she’s the founder and

director of MUMS, Mothers United for Moral Support.

Would you all stand and be sworn.

[Witnesses sworn.]

Mr. BURTON. I’m sorry for the delay. As I told you, we were going

to be tied up with some votes. If you could, try to keep your opening statements to around 5 minutes. I would really appreciate it,

because we want to get to questions as quickly as possible.

Let me start with Mr. Buttar, since he was the first one we

named here. Dr. Buttar.

STATEMENTS OF RASHID BUTTAR, DO, CREATOR OF A

TRANSDERMAL CHELATOR, CORNELIUS, NC; PAUL HARCH,

M.D., PRESIDENT, INTERNATIONAL HYPERBARIC MEDICAL

ASSOCIATION; KEN STOLLER, M.D., SANTA FE, NM; AND

JULIE GORDON, FOUNDER AND DIRECTOR, MUMS—MOTHERS UNITED FOR MORAL SUPPORT, ACCOMPANIED BY

SHANNON KENTIZ OF WISCONSIN

Dr. BUTTAR. First, Congressman Burton, I want to thank you on

behalf of the millions of people that appreciate what you have been

doing. I just wanted to start off by saying that we all appreciate

your battles that you have fought on our behalf for years and years

and years.

You have a presentation in front of you, I believe, a power point

presentation.

Mr. BURTON. Let me get that real quick here. Oh, yes. OK. I

have it.

Go ahead, Doctor.

Dr. BUTTAR. I’d like to start off by first pointing out that the

overwhelming evidence of mercury and chronic disease has been reviewed and yet still it’s considered to be a controversy.

On the second slide there, you’ll see I did a search under

TOXLINE under the ATSDR division of CDC.

We did a search under mercury and a number of different chronic diseases; and what’s interesting is that, although in the medical

literature there’s very little evidence of mercury associated with

chronic diseases, the amount of references that I found with merVerDate 11-MAY-2000 12:14 Sep 29, 2004 Jkt 000000 PO 00000 Frm 00035 Fmt 6633 Sfmt 6633 D:\DOCS\95740.TXT HGOVREF1 PsN: HGOVREF1
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cury and cardiovascular disease, as you can see from that slide,

amounts to 358 studies.

Why is that important? I’ll explain that in just a second.

If you look at slide No. 3, mercury and cancer, there is over 643

references in the didactic literature that explains the relationship

between mercury and cancer. Then when you go to the

neurodegenerative area, mercury in the brain, over 1,445 references regarding the relationship between mercury and

neurodegeneration; and yet for some reason still it’s considered to

be a controversy. There is no controversy, as you know, Mr. Congressman.

Where do we get mercury? We get mercury from everywhere:

combustion of fossil fuels, from amalgams, from the water we

drink—of course, we know about the Thimerosal issue with the

vaccines—from the food we eat. So if it’s idea to be so devastating—and why is it considered so devastating? If you look at the

statistics from the World Health Organization that was published

in 1998, the association between—well, they basically stated that

80 percent of all causes of death, which is not only disease processes but homicide, suicide, accidents, etc., 8 out of all 10 causes

of death are either cardiovascular or cancer. And mercury is directly related to those two. When you take into consideration the

neurodegenerative diseases, you’re looking at 95 percent causes of

all death could be attributable or contributed to by mercury. So

this is a very significant problem, beyond autism and the rest of

the spectrum that we’re going to discuss today.

Now looking at where mercury goes in the body it goes essentially everywhere, which you see on slide No. 8. But what I am

here to discuss with you today that you have asked me to come and

discuss is how do we get the stuff out.

On slide No. 10 you’ll see a patient, a 44-year-old female, and

this is how we typically expect mercury to show up. You’ll notice

in the middle of the page at the bottom the challenging agent here

was DMPS, a chemical that is used selectively from mercury and

arsenic; and you’ll notice that woman’s mercury level was 65

micrograms per gram creatinin. Normal is considered anything less

than 3.

And as we treat this woman you see that each time we test her,

her mercury comes down. It’s down to 29 in slide No. 11. Down to

21 in slide No. 12. Then, in slide No. 13, it jumps up to 41, but

that’s because we added a substance of glutathione that potentiates

the effect of the MPS and helps to pull out more. Then we see the

continuation of the mercury levels dropping. It drops down to 21

again when adding the glutathione and DMPS.

The point of these slides is to show that when we measure mercury in these tests we are not just measuring the amount of mercury in the body, because there is no way to accurately do that. The

only way to accurately do that is by multiple-site biopsy which, of

course, is not conducive to life. The only method that we are using

right now to determine mercury issues is by the amount of mercury

that we’re pulling out. So these tests only show us what is being

pulled out, not what’s in the body. So we rely upon these types of

tests to determine if mercury is an issue or not.

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In the autistic population as well as in the Alzheimer’s population, we have a phenomena called an impaired detoxification

pathway, meaning that they cannot get rid of the mercury. So

when we test them, they don’t show it, even using our techniques

of—the advanced techniques of using IV therapies to challenge the

body.

So if you look on slide No. 16 we now have a case of a 34-yearold woman with significant medical problems, including hormonal

disruptions, cardiac disrhythmia. She had ataxia, she couldn’t walk

straight, she had a problem speaking, she had milk coming out of

her breasts, and she was 34 years old. She was suicidal. She had

16 doctors in 5 years before she came to see me. I told her this was

mercury. She said she had been checked for mercury. I told her

that did not count. We had to do an IV treatment. She said she

had this done exactly the way I do it.

I called her doctor, and her doctor was one of my students who

had come to one of my workshops and was following my protocol.

We repeated this test. As you can see, she had no mercury there.

This is after two tests, 2.8 micrograms per gram creatinin, no mercury. We have tested her twice over a period of year and a half.

Then she asked me the question that basically changed how I

practice medicine and leads me to be in front of you today. She

asked me, if I was your sister, how would you treat me? And I’d

like to think I treat all my patients like I do my family members,

but I told her, if you were my sister, I would not rely upon this

test result. I would start treating you. She asked me to start treating her.

You will see on the slide No. 17 after 20 IV treatments her mercury level is now 9.4. It is increased exponentially. You will notice

her arsenic level went from a mere 13 up to 260. This is exemplifying the point that we’re here for today with autism. These patients

cannot eliminate mercury.

On slide 18, you see continuation of the same patient. Her mercury level is now 19, and yet she’s getting better. So as the mercury level is actually increasing, what we’re measuring, she is actually getting better, which means that this person was not able to

get rid of the mercury on her own. In fact, this person, even with

the appropriate treatments, was not able to get rid of the mercury.

This is what we see with autism, and I will explain that just shortly.

You see the continuation of this. On slide No. 19, we’ve gone

from 2.8 to 9.4 to 19 to 27 micrograms per gram creatinin of mercury. This woman at this point was completely normal. She was

symptom free.

If you go to slide No. 22, we see what is actually going on here.

Michael Godfrey, who is going to be a coauthor with me on the

study that we are getting ready to publish, essentially found that

there is a genetic predisposition—I believe there is probably a number of them, but the one that he found was apo-E allele, and we

confirmed this with our study—but, basically, a genetic predisposition that allows for a person not to be able to detoxify the system

as a vast majority of people.

The question is always abundantly made obvious to—it’s a recurrent question that’s asked all the time in similar hearings and lecVerDate 11-MAY-2000 12:14 Sep 29, 2004 Jkt 000000 PO 00000 Frm 00037 Fmt 6633 Sfmt 6633 D:\DOCS\95740.TXT HGOVREF1 PsN: HGOVREF1
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tures, where people will say that—why is it that one child has this

problem and their twin does not have the problem? If it affects one

child, it should affect all the children. The point is that they are

genetically predisposed. They are a canary. They’re sensitive. Their

system cannot eliminate the toxicity that they have been exposed

to.

Now, on slide 24 is a picture of my son who, fortunately, is here

with me; and he will be happy to answer any of the questions after

we’re done. But at the age of 14 months he lost his speech, he lost

his ability to speak, and he had—his first word was ‘‘abu’’ which

means father in Arabic and had about another 10-word vocabulary.

By the 15th month he had lost his vocabulary after about a week

of—about 10 days after his inoculations.

I started his treatments at the age of 3 after we got definitive

diagnosis, and you’re looking at slide No. 25: No mercury. Slide No.

46: No mercury. Slide No. 27: No mercury.

But Boyd Haley, who I’m sure you’re familiar with, Boyd Haley

had a very interesting study that came up where they compared

normally developing children with children that had autism. And

what they found was that children that had autism had no mercury in their hair, whereas children that were developing normally

had very high levels of mercury. Why? Because these children can

get rid of mercury. That’s the whole point. The children that are

autistic cannot get rid of it.

You’ll see after six tests, on slide 29, is my son’s mercury level.

You saw four previous slides that showed no mercury, and now you

see his mercury level on slide 29 was 13 micrograms per gram

creatinin, which is over four times the toxic level.

Today, you will see for yourself what he is capable of doing. He’s

far ahead of his peers. He is speaking in two different languages.

He reads, he writes, he plays chess, and there is nothing that this

kid can’t do.

We decided to see if this was something just isolated. We did 31

patients we put on the study, all with diagnoses of autism, autismlike spectrum, pervasive developmental delay. They were all treated with the same format, transdermal DMPS with—it’s conjugated

with a number of different amino acids, and it’s delivered in a

highly specialized micro-encapsulated liposomal phospolipid

transdermal base. All 31 patients were tested at baseline with

urine metal screens, hair metal screens, blood metal screens, as

well as fecal metal screens; and all children showed little or no

mercury on initial testing.

You will see in slide 37 an example of a child that was tested

and had nothing that showed up at baseline, but as treatments

continued these children started dumping mercury. You’ll see on

slide 39 a 400 percent increase. This is an average. I picked an average slide. We’re right now doing the statistical analysis on this

issue, on this study.

And what I am talking about, recovery, I’m talking about full recovery: speech, cognition, ability to interact with others. I have 19

children documented on video that are full—I don’t even like to call

it remission, because they’re not really remissing from anything.

We’re just cleaning up their system. But they’re in normal school.

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You would not be able to tell. We have another 30-some children

that we have treated that are well on the way of getting better.

The issue here is that—what is the difference between Alzheimer’s and autism? There is no difference except of when the exposure was made. In other words, if you take an Alzheimer’s patient and have them fast forward into the future, where they were

just born 5 years ago, today they would have autism. If you took

an autistic children and they were born 70 years ago, today they

would have Alzheimer’s. The only difference is chronic insidious exposure versus acute load of mercury.

What I am here, hopefully, and on behalf of the parents of the

children that I am treating, as well as a number of other physicians that have started using this treatment modality, is to show

that the transdermal DMPS is a method of removing mercury, regardless of where it is coming from, and we can get rid of it; and

then other new treatments such as nutrition, hyperbarics become

even more efficacious in helping to regenerate the neurons that

have been damaged from the mercury.

Mr. BURTON. This is very impressive, Doctor. It’s hard for a layman like myself—maybe Dr. Watson can do it better—to keep with

you when you’re going through this. I think I have the gist of it.

What we would like to do, I’d like to submit all this to HHS and

CDC to have them take a look at it, let them know that the Congress is watching it. But I’d like to have it—in addition to this,

maybe something written out so that the—not only can I follow it

thoroughly but so that the people over there at HHS and CDC will

not be able to say they couldn’t follow it. You see what I am saying.

Dr. BUTTAR. We have given you a 12-page written narrative to

go with this, sir. I was also told I had 5 minutes to give a 2-hour

presentation.

Mr. BURTON. Well, you did pretty well. You didn’t get it in 5, but

you did pretty well. You move awful fast. If you could move your

feet that fast, you would be an Olympic runner. But it’s very well

done, very well done. We will use this, and we will submit it to

HHS along with your analysis.

[The prepared statement of Dr. Buttar follows:]

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Mr. BURTON. Dr. Harch.

Dr. HARCH. Chairman Burton and distinguished members of the

committee, thank you for this wonderful opportunity to speak before you today.

Before I get started, I wanted to make an announcement. The

International Hyperbaric Medical Association and American Board

of Clinical Metal Toxicology as well as Oklahoma University

Health Science Center and School of Medicine is going to conduct

the first evidence-based medicine study on the only two effective

therapies that have been identified for autism: Hyperbaric Oxygen

Therapy and chelation therapy. We’re going to have an Internetbased study that will allow us to enter patients with autism from

all over the country. What we’re proposing to do is do a sequence

of chelation therapy, hyperbaric oxygen chelation and hyperbaric

oxygen, with testing before and after treatment.

As Dr. Bob Nash and I have pointed out, this is the only study

that will address two of the major underlying problems with the

majority of autism cases: No. 1, the poisoning and stunning of neurons by mercury; and, second, the rebuilding of a stunted brain

with hyperbaric oxygen.

I wanted to point out that the State of Wisconsin has recently

announced a retraining program for autistic children. It’s a 3-year

program, $30,000 per child per year. And, unfortunately, at the end

of 3 years we’re going to spend $90,000 per child; and the children

will still be autistic, with maybe some improvement in behavior.

The problem is that the central flaw—you cannot retrain a

stunned, stunted brain and poisoned brain. What we’re going to do

for $20,000 is be able to treat these children with this combination

therapy and likely return a substantial number of them to near

normal function and better lives.

A word about how I got into this. I made a discovery back in the

late 1980’s and early 1990’s treating our divers in New Orleans

with brain decompression illness. Specifically, what we found was

divers who had failed standard U.S. Navy treatment and months

to years later were disabled by neurocognitive problems, I was able

to bring back and subject to a lower pressure protocol of

Hyperbaric Oxygen Therapy and improve them dramatically. We

used functional brain imaging before and after a hyperbaric treatment to identify that injured area of brain that could respond with

a repetitive course of treatment and then document it with a repeat

scan.

Well, we then extended that: patients with boxing injury, other

causes of traumatic brain injury, chronic stroke, cerebral palsy—

the first cerebral palsy cases treated in North America were treated at our facility in 1992 and 1993—toxic brain injury, and then,

of course, autism.

In the course of 15 years and approximately 400 patients now

we’ve had about 20 patients with Autism Spectrum Disorders, persistent developmental delay and autism; and what we found is

three things.

No. 1, there seem to be in a lot of these children a low blood

pressure, low oxygen, low blood flow insult to the brain either in

late pregnancy, at the time of birth, or shortly after birth that was

either unappreciated, obscured or, frankly, covered up. Second,

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much of the brain injury we saw was at the base of the brain involving the temporal lobes. And, third, that these children could be

improved with hyperbaric oxygen, although we wouldn’t cure them.

So over the course of these years we found the autistic children

responded much like the divers, the trauma patients, and all the

other now 50 different neuropathologies that we have treated; and

there’s a reason for it. But essentially what I am here to tell you

is we have a treatment for brain injury that will revolutionize the

treatment of brain injury in the world.

As I told Chairman Regula last week in testimony before his

committee, it has now been shown with over 40 years of research

that a single high pressure hyperbaric oxygen treatment at the

time of a low blood flow, low oxygen insult to the brain can nearly

completely negate the effect of that insult. So had my autistic children been treated likely at the time of that injury, they wouldn’t

be autistic today.

In fact, this is suggested by a study that was done in 1963 and

published in the world-famous Lancet by Dr. Hutchinson in England. He took 65 babies born not breathing who failed resuscitation, and when everything failed he put them in a hyperbaric

chamber, gave them a single hyperbaric treatment. At the end of

the day, 54 percent of them were discharged from the hospital, ‘‘apparently well.’’ We know now that this could treat the vast majority of injuries to human beings in the world.

Unfortunately, if you’re a child, the only way you can get this

is—you can’t get it. You have to be a high-priced thoroughbred

racehorse newborn foal that is affected by low oxygen and blood

flow in Lexington, KY, or Florida and you’ll get in a hyperbaric

chamber for your injury.

So we also have a treatment for chronic brain injury, and we’ve

shown that, and amongst those are the autistic children.

So, in summary, what I want to tell you is we have a preventative treatment for autism, and we have a treatment for autism. It’s

hyperbaric oxygen. Combined with chelation therapy such as Dr.

Buttar’s, we believe we can return the substantial majority of children in the Untied States and the world to improved levels of near

normal function; and we are going to prove it in the next 3 years

with this evidence-based study.

Thank you so much.

Mr. BURTON. That’s very good news as well. And I presume we

have detailed analysis and testimony that we can use and also submit to the health agencies.

Dr. HARCH. They’ve seen it.

Mr. BURTON. Well, they’ll see it again.

Dr. HARCH. Good. In fact, Mr. Chairman, I presented this to the

MIND Institute in Sacramento a few years ago; and they were not

particularly interested. We’re hoping they might be more.

Mr. BURTON. We’ll send it to the powers that be over there with

a personal letter, hopefully from myself and Ms. Watson; and we’ll

try to make sure that they take a look at it.

Dr. HARCH. Thank you.

[The prepared statement of Dr. Harch follows:]

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Mr. BURTON. Dr. Stoller.

Dr. STOLLER. Chairman Burton and distinguished member of the

subcommittee, thank you for this opportunity to speak with you

today.

Ignoring hyperbaric medicine has come at a great societal cost.

The past is the past. I am here with one of my patients, 10-year

old Augusta Skoog, who began life as an 11-week preemie with the

most severe grade of intraventricular bleed in her brain. She has

the diagnosis of cerebral palsy but began her Hyperbaric Oxygen

Therapy last year. It is now 2004, and we can document either by

spec scan or neurocognitive evaluations concrete evidence of dramatic improvements children with brain injuries can make if they

can receive treatment with Hyperbaric Oxygen Therapy.

These neurocognitive changes are, in many cases, quasi miraculous, given the short time required to manifest these permanent

improvements. Every published research study that has looked at

the efficacy of using Hyperbaric Oxygen Therapy to treat children

with cerebral palsy has found significant levels of improvement.

The most recent study published in the United States was in the

U.S. Army Medical Journal in 2002.

Brain injuries that are considered irreversible and incurable,

such as the case of fetal alcohol syndrome now being treated in

New Mexico, do respond to Hyperbaric Oxygen Therapy, respond

immediately, and can now be documented. Fetal alcohol syndrome,

for example, is one of the leading causes of mental retardation in

this country.

The government and Medicaid are the insurers of last resort for

most of these children, and the cost is astronomical. The CDC reports that the overall economic cost for just one child with cerebral

palsy is $40 million over their lifetime.

Yes, the past is the past. Now there is a therapy for brain injury,

replete with documentation that can return people to work, return

them to school, and give them a life worth living, as well as drastically reducing government costs for these brain injuries. So can

these children get treated with Hyperbaric Oxygen Therapy? After

all, Medicaid’s EPSDT statute says that any treatment that either

corrects or ameliorates, be it a covered benefit of a State plan or

not, shall not be denied a handicapped child. However, most States

ignore this aspect of Medicaid law and force families to take legal

avenues to seek reimbursement. This week, Augusta was denied

for the third time by New Mexico Medicaid from getting Hyperbaric

Oxygen Therapy, despite both her pediatrician and neurologist requesting it for her.

Medicaid law, the science of Hyperbaric Oxygen Therapy, and

prudent economics are all present behind this therapy. It is time

for it to be made known and available to all brain-injured children,

even if it requires Congress to remind State Medicaid programs of

their obligation in regard to brain injury and hyperbaric therapy.

It is important to support evidence-based medical programs such

as the Oklahoma University Center of Autism. It is important to

mandate that State Medicaid programs do literally obey the law.

It is important to help bring Hyperbaric Oxygen Therapy to the

forefront if for no other reason than to save everyone’s precious

health care dollars.

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There is a pernicious catch–22 at work. As most State Medicaid

agencies have decided their reimbursement policies for Hyperbaric

Oxygen Therapy should be modeled after Medicare policy but the

Medicare policy on Hyperbaric Oxygen Therapy is formulated

based on research and data collected on people age 65 and older,

CMS will reject petitions made to it for new cases that are not relevant to this population; and, therefore, Hyperbaric Oxygen Therapy for brain-injured children does not have any opportunity to be

covered no matter how much research is presented. That is simply

the way the system operates at the moment.

How can a Medicaid HBOT policy for children truly provide services for children if its plan is based on a government model that

is not designed for children? It makes no financial sense to use the

Medicare model on which to base health care decisions for children,

particularly brain-injured children.

Thank you very much.

Mr. BURTON. Thank you, Dr. Stoller. I presume that we have a

detailed statement.

Dr. STOLLER. Yes. I provided testimony. The graphs of Augusta’s

incredible and dramatic neurocognitive changes are documented in

the testimony, as well as the fetal alcohol syndrome case I was

talking about.

Mr. BURTON. We just want to have as much information as possible so we can submit it in the right way.

[The prepared statement of Dr. Stoller follows:]

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Mr. BURTON. MUMS. How did you come up with that?

Ms. GORDON. One of the children in our group when we were discussing it came up with it.

Mr. BURTON. So you came up with the word MUMS. Then you

added the words to it.

Ms. GORDON. Right.

Mr. BURTON. Well, you did a good job. Ms. Gordon.

Ms. GORDON. I want to thank you for allowing me to testify and

represent the parents of this Nation that have discovered what

hyperbaric oxygen can do for their children who have autism and

brain damage.

When my daughter Jessica was born 30 years ago, she suffered

brain damage from a loss of blood. We were both hemorrhaging

through the umbilical cord, and she was born dead and resuscitated, and we were both given ice-cold blood.

In those days, babies like Jessica went to institutions and not

home. In fact, the Federal law allowing them to even go to school

wouldn’t be passed for 2 more years. So we had a lot of battles

ahead of us, and today is another battle that I am fighting for children like Jessica and for babies yet to be born so that they won’t

have to go through what our family went through and that we continue to go through.

I had to give up my teaching career. I had a set of twins and

then got divorced. The girls and I were forced to go on SSI, welfare,

food stamps, Medicare. It was very stressful and degrading to have

two college degrees and to be forced to accept Government help.

So disabilities in the families are not only emotionally but financially devastating to our children and the whole family and the

Government.

I realize now that all of this could have been prevented with a little over $3 worth of oxygen. Loss of blood is one of the non-approved conditions for treatment for Hyperbaric Oxygen Therapy. I

strongly believe now if Jessica had gotten the therapy immediately,

she would have gone home a normal baby.

Instead, I was sent home with a seizuring, spastic, screaming infant with no referral for any therapy or any support. Twenty-five

years ago, I started a support group in order to network with other

parents whose children also had disabilities. The group has since

changed the name of MUMS to the National Parent-to-Parent Network, because we have a lot of fathers involved, and we wanted to

include them in our name.

We became international. We now have 19,300 members from 54

countries. Through a newsletter from England, I read about Linda

Scotson, whose 14-year-old son was blind and deaf and in a wheelchair, and she had treated him with Hyperbaric Oxygen Therapy,

and that he was walking, talking, and was so coordinated that he

could ride a two-wheel bike with no hands.

So I was pretty skeptical. But I called Linda. And she told me

that he she had a hyperbaric chamber in her living room; she was

treating other children. And later on, I found out that there were

500 children in England getting treated that had brain injury, and

they were improving.

And the chambers they were using were 100 chambers that—

clinics that were set up to treat muscular—multiple sclerosis for

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free, through a charitable trust. And they would allow children

with brain damage to get treated for a nominal fee. Once I shared

this information in my newsletter about hyperbarics, more and

more parents started wanting information.

Two of my members went with their 8- and 10-year-old daughters out to Florida and got—only 14 treatments is all they could

afford. Their daughters improved so much when they came back,

one of them raised money and has a chamber in her home. And the

other one, her husband used a propane tank and tried to make a

chamber. I knew then how desperate parents were and what an

impact finally having a hope for improvement in their child’s brain

damage would do.

Once it was published in the newsletter, it really started a parents’ worldwide movement to get hyperbaric covered for children.

Stories poured in, articles, MUMS found—one of our MUMS went

to—Claudine Nadeau from Quebec—brought her twin sons to Canada. And when she came back with them, Dr. Marois, who was

their physiatrist, pediatric physiatrist, was so impressed with their

improvements that they both approached the McGill University

and got a study where 25 children only received 20 treatments, but

they all improved.

Then a group of parents in Quebec formed, and they demanded

and put pressure on the government that they do another study.

I am just trying to point out that the information is out there, that

parents are demanding this, and that there is no way to stop us.

We will go to England and Canada. And what is frightening is

some of the parents are talking about, on the listserve, going to the

bottom of swimming pools with scuba gear and treating with 100

percent oxygen.

We have had a lot of parents whose children have autism, that

the children have totally turned around. My own daughter, who

was functioning at a 5-year-old level, she was 25 when I got her

treatments. And you could say anything in front of her. I had a

friend call me, and she said, ‘‘Julie, what did you do to Jessica?’’

and I said, ‘‘What do you mean?’’

And she said, ‘‘Well, last year, I went to her program, and I

asked her a question three times. And she finally pointed to yes.’’

She said, ‘‘This year, I went, she drove up to me in her power chair,

and asked me how my dog was.’’ This is the different Jessica.

Sorry. But the stories are pouring in.

And dramatic stories like Kevin Fickle who was 18-months-old,

it was shortly after a vaccine, he got meningitis, went in a coma,

five strokes to the brain, all organs shutting down. And his—Dr.

Hernandez luckily knew about hyperbarics, but couldn’t put him in

the chamber until a sore developed, so he could justify treating a

wound.

Kevin, today, is now normal. All he has is a slight speech impediment that probably would have been prevented if he had gotten

treatment right away. Doctors call me and admit they are sneaking

the children in the chamber. One doctor told me that his 51-yearold friend had a viral encephalopathy, and he was brain dead. All

of the tests showed he should be removed from life support. And

he tried hyperbarics, and he said he walked out of the hospital on

his own accord, not well.

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And I said, ‘‘Why aren’t you screaming this from the rooftops?’’

And he said, ‘‘I would lose my job.’’ So this is what medicine has

come to. The doctors know it works, but they are not allowed to

talk about it or use it.

We have a child we brought today that, I think, she is wanting

to be heard from. Shannon called me, and Gracie was on—they,

again, wanted to unplug Gracie. But she said—she had called me

crying, saying, ‘‘I can’t let my baby die.’’ And I told her about

hyperbarics. She took her by ambulance to Florida. And this little

girl is blind, in a coma, all of the other children, this is a rare

mitochondrial condition, Cytochrome-C-Reductase Disorder. The

doctor said, ‘‘There are only five in the world. They are all dead by

2. Let her go. And Shannon, you want to bring her up.’’

And her mitochondrial disease has gone. There are 40

mitochondrial diseases. My point is, we don’t know what will work

for us. But this little girl is the oldest living child with this condition. And she keeps getting better with all of the treatments.

So I just want to say one final thing, that I think after the testimony you heard today, if you have a loved one that incurs brain

damage, you will be looking for the closest chamber, too. Thank

you.

[The prepared statement of Ms. Gordon follows:]

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Mr. BURTON. Well, thank you, Ms. Gordon. I really appreciate

what MUMS are doing and the information you have given us.

Dr. Weldon, who is with us, he has to leave. If you don’t mind.

Ms. WATSON. No.

Mr. BURTON. I would like for him, since he is a physician—he is

very interested in the mercury aspects of autism and all these

other things. He can be a big help to us in communicating with our

health agencies.

So, Dr. Weldon, do you have some questions or comments?

Mr. WELDON. Yes, I do, Mr. Chairman. And thank you for inviting me. It is great to be back. I miss the committee. Though I must

admit, you worked me pretty hard when I was on the committee.

I certainly thank the ranking member as well for giving me the

opportunity to be here.

Mr. WELDON. Dr. Buttar, you used DMPS as your chelation

agent?

Dr. BUTTAR. Yes, I have been using DMPS for about 8 years intravenously and about 2 years in transdermal form.

Mr. WELDON. You have to forgive me, I got called out when you

were beginning your testimony. I thought I saw one of your slides

that talked about administering an oral chelating agent as well. Is

that correct?

Dr. BUTTAR. DMPS was developed in Russia. It had actually

been used in Europe for 50 years. Its method, primary method of

application is actually oral dosing.

The problems are that, first, it is 50 percent absorbed, 50 to 55

percent absorbed through the gastrointestinal mucosa.

The second problem is in the children that we treated with the

DMPS orally; within 5 to 7 days they started having abdominal

cramping and pain.

And third, this patient population, as most of the patient population that I deal with, have already altered gut function. They

have basically chronic GI distress, GI dysbiosis, many other types

of digestive problems and absorption problems.

And so these children were not getting better with the oral version. That is when we went to the transdermal. We had actually

used the transdermal previously in adults but found it not to be as

efficacious as the IV, because IVs are done every other week. And

the transdermal was not yielding as much mercury as the IV version.

Mr. WELDON. And tell me about your transdermal application.

How do you do that? What is the technology involved there?

Dr. BUTTAR. It is—DMPS——

Mr. WELDON. Is it a commercially available product?

Dr. BUTTAR. No, sir. DMPS is not approved in the United States.

Its sister product, which is DMSA, which is made by the same

manufacturer out of Germany, is approved but happens to be a

neurotoxin.

DMPS is something that has, for some strange reason, the only

way it was approved—let me take that back. It was—it has been

approved for bulk compounding pharmacy usage, but that was only

for 3 years. And now, strangely enough, since 2001, we can’t find

any information from the FDA. FDA is right now pushing for

compounding pharmacies——

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Mr. WELDON. The question I really had is, do you just apply it

to the skin and put an adhesive bandage on it?

Dr. BUTTAR. No. Actually it is—I should have brought some with

me, and my son would have demonstrated how to use it. But it is

drops. DMPS is highly oxygen reactive, so it has to be stabilized.

Once we stabilize it, we conjugate it with certain amino acids, including Glutathione, and then—it is a lotion, essentially.

Mr. WELDON. A lotion?

Dr. BUTTAR. A lotion. It is dosed at 1.5 milligrams per kilogram.

It is drops, 1 milligram per drop. And a child just takes it themselves. It is dosed every other day, because it is very effective at

pulling out mercury and arsenic, but it is not selective. It pulls out

essential minerals.

Mr. WELDON. You used the transdermal, though. Are you applying it to the skin?

Dr. BUTTAR. That’s correct.

Mr. WELDON. So the children just rub it on their skin?

Dr. BUTTAR. That’s correct. To the volar aspect of the forearm,

to the latissimus area, anywhere that has a high vascular supply.

Mr. WELDON. In bathing, the mercury is withdrawn, or they absorb it into their body, and it comes out in the urine?

Dr. BUTTAR. Actually, what our study showed was that we—we

measured it actually increasing your hair yield, fecal as well as

urine. So it is hepatically—it may even be hepatically treated, but

it is basically—primarily the body excretes mercury through the

biliary system. But we have seen it being excreted through the

renal system as well as through the hair.

Mr. WELDON. Dr. Harch, are you on the faculty at the University

of Oklahoma? Did I hear you say that?

Dr. HARCH. No. I am not. LSU, New Orleans. I am on the faculty

there.

Mr. WELDON. You are on the faculty at LSU?

Dr. HARCH. I am working with the Oklahoma School of Medicine.

Mr. WELDON. OK. Have you published any of the studies that

support the claims that you made in your testimony?

Dr. HARCH. Some. It has plainly been in book chapters. There

have been some isolated articles as well. And we have an animal

model now that we are doing the final preparation for manuscript

for.

Mr. WELDON. A lot of the resistance on the part of insurers and

third-party payers is the failure to develop an adequate body of

knowledge published in the peer-reviewed literature supporting the

claims and assertions regarding the applications of Hyperbaric Oxygen Therapy.

And is your professional association moving to develop the documentation necessary to obtain wider acceptance within the medical

profession of Hyperbaric Oxygen Therapy? Because I have seen

people have come to my office and shown me these case reports

that are very, very dramatic. And it would seem to me that you

should be able to publish some of this information.

Dr. HARCH. The answer is yes. We are trying to disseminate that

information.

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The other answer is that a surprising amount of this information

is available and previously published. And I will just give you an

example.

In 1992, the Journal of Neurosurgery of Rockswold, 168 patients,

randomized prospective controlled trial of hyperbaric oxygen in

acute severe traumatic brain injury, highly significant reduction in

mortality, 60 percent reduction in mortality in the hyperbaric oxygen group.

They have another study that is now showing a similar type of

effect. But this is an irrefutable study. The problem was, even

though it is the same outcome used by the certifying bodies for reimbursement of hyperbaric oxygen, they did not have patients—a

greater number in the hyperbaric group—in the high outcome

group.

The fact that is lost on them is that they saved 60 percent of

these people. If we compare this to American Heart Association

Cardiac Arrest, for instance, they have such dismal outcomes, and

they are just looking for any degree of survival.

There is actually a followup study that was published 2 years

ago, Journal of Neurosurgery, same group, Rockswold. They went

back and did the same severe traumatic brain injury group, or

equivalent, and did elegant metabolic studies. And what they

showed was a single hyperbaric treatment could recouple brain

bloodflow and metabolism in an injured brain.

Never been demonstrated in the history of science. It is out

there. And unfortunately, it hasn’t been appreciated or picked up.

It is a political issue, partly, in medicine. I can discuss it with you.

But——

Mr. WELDON. Well, actually I am——

Mr. BURTON. Before you leave, I would like to know, real briefly,

why you say it is a political issue. I would like for him to elaborate

real quickly.

Dr. HARCH. Well, basically it is—I am going to be real blunt

about this. There has been a group of doctors who have controlled

the supply of information on Hyperbaric Oxygen Therapy through

a medical society. And there has been an intense hatred by one of

them, an ex-president, for the man who originally developed some

of this information, Dr. Neubauer.

And with this institutionalization and the destruction of his reputation, the science of what he says has been thrown out and, for

years, everything associated with it. And that, in a nutshell, is why

this has been stunted in its application and dissemination. It has

been at a medical society level. It is a personal doctor issue. And

I can verify that.

Mr. WELDON. I was just going to add, for the record, one of my

partners when I practiced medicine was certified in hyperbarics.

And sometimes, he would take the weekend off, so I would pick up

his cases. And so I had to learn a little bit about it. And I have

seen some significant outcomes from its application.

Mr. Chairman, I have to go. Thank you very much for indulging

me.

Mr. BURTON. Thank you.

Mr. WELDON. Also, thank the ranking member.

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Mr. BURTON. As you leave, though, we will be drafting some letters with questions to the HHS people. We would like to have you

as a signatory to the letters to try to find out their reasons.

Mr. WELDON. I would be very happy to support you in that.

Ms. WATSON. May I, before Dr. Weldon leaves. Mr. Chairman, I

just want to comment before you leave, Doctor.

I would hope that we would send a very strong letter to be able

to locate the research and the findings and publicize it, because it

goes beyond a political problem. It goes to depriving those who

could benefit from this discovery.

My experience with hyperbaric chambers was down in Micronesia when we had people diving too deep and drownings and so on.

But this is the first that I heard that brain injuries, and I guess

it makes sense, get oxygen to the brain, maybe heart problems and

so on, could be affected by the hyperbaric chambers.

And so I just wanted to say that before you left so you will join

with us in very strong support on releasing the research.

Mr. WELDON. I would be glad to do that. Thank you.

Dr. HARCH. Congressman Watson, can I respond?

Mr. BURTON. I am going to yield to Ms. Watson now, and you can

respond to her as Dr. Weldon leaves, and she can ask any questions.

Dr. HARCH. The actual other issue for Dr. Weldon is that there

has been a failure by the medical community of hyperbaric medicine to adequately explain what is going on with hyperbaric oxygen. And what is happening in chronic wounding is that the intermittent exposure to oxygen is causing growth of new tissue.

You cannot have that unless you go through the DNA of the cell

to then begin to transcribe new proteins, growth factors, etc. In the

last 6 years now, elegant and molecular biochemical experiments

have been done showing that hyperbaric oxygen signals the DNA

to begin the transcription of sequences that code for growth hormones, growth receptors and so on.

And that is the secret behind what has happened with Shannon

Kentiz’ daughter, Gracie. In a mitochondria disorder thought to be

DNA-linked, hyperbaric oxygen is signaling and affecting the DNA

and effecting a permanent change in this child. That is the underlying basis of hyperbaric oxygen.

Dr. BUTTAR. Excuse me.

Before Dr. Weldon leaves, Congressman Burton, is it all right for

this 5-year-old, who, at the age of 3, was not speaking at all, to address the chairman and the respective Members of Congress that

are here?

Mr. BURTON. Only if he doesn’t challenge me to a chess match.

Master ABID BUTTAR. Mr. Burton and Ms. Watson and Dr.

Weldon, thank you for helping my dad getting all people better and

children better.

Ms. WATSON. I just want to say, this is kind of like a miracle

that we are hearing.

And thank you so much, Dr. Buttar, for bringing him.

And Abid, thank you so much for speaking to us. And you did

that very well.

Master ABID BUTTAR. Thanks.

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Ms. WATSON. I just want to say, the politics of medicine is as rigorous as the politics that we are into. We are going through the

same thing in another area of medicine with dentistry and the filling and mercury fillings, amalgam. And we have the American

Dental Association against us. And we had the California Association as well.

And I authored legislation over 14 years ago now, to just inform

parents of the risks and the benefits. And we don’t have a piece

out that is what I would consider practical, informative and truthful. And that is because it is cheaper to put the amalgams in.

But in terms of hyperbaric chambers and hyperbaric medication, what would be the cost of a struggling family? And I heard $30,000

somewhere, I guess for a specific case. But can the ordinary, average family afford this treatment?

Dr. HARCH. Well, you might want to ask the families that. They

go through considerable sacrifice to get this, because they often

have to travel at distances, because the hospital-based physicians

where these chambers are located have been threatened by the

medical society for treating something that is not on this list, that

is only partially supported by science.

Mr. BURTON. Is that the AMA you are talking about?

Dr. HARCH. Oh, no, it is not. It is the Undersea and Hyperbaric

Medical Society.

Mr. BURTON. OK.

Dr. HARCH. And so what has happened is, the cost of this has

now been shifted to outpatient freestanding centers where, if in a

doctor-attended facility, you are able to access this, you pay $150

to $200 a treatment. At centers that are run by parents, other individuals, groups that have gotten together, it is $50 or $100 a treatment, even. People have even used portable chambers. They now

are putting them in their homes and delivering the treatment very

cheaply.

So the actual cost of the treatment is not substantial, compared

to the hospital billing for this. The hospitals are charging, combined doctor and hospital fee, up to $1,400 per hour. It is prohibitive. It is a disgrace. And it is unnecessary.

Ms. WATSON. Is this to try to force you not to use that procedure?

Dr. HARCH. No.

Ms. WATSON. What is the cost——

Dr. HARCH. To maximize reimbursement. It is gouging. It is not

cost.

Dr. BUTTAR. If I may, Congresslady Watson, if I may address this

also. It is a similar reason that chelation therapy intravenously is

considered to be a part of alternative medicine, if you will. Yet

every emergency room in every city in our country, the only method

that is approved by the FDA of removing acute lead for lead toxicity is EDTA infusion.

They charge $980 for an infusion in the hospital. But if you add

a couple of minerals to it and some vitamins to it and you do it

in the doctor’s outpatient office, then it is called chelation therapy,

although it is only $150.

Same treatment, less constituents within the treatment, and it

is called a different treatment. And it is not reimbursable. Again,

it is a money issue, just like Dr. Harch said.

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Ms. WATSON. I am trying to understand. I heard somewhere

along the way that it took just one treatment. Was that for an infant?

Dr. HARCH. No, it is for adults. I said I have treated approximately 400 patients. Over half of them are adults.

Part of the problem is also this is an off-label, off-FDA-label use

of hyperbaric oxygen, at least for a number of the neurological applications. And that is one of the other reasons that it has been difficult to get in the hospitals.

Ms. WATSON. Where are these chambers located? Are they located throughout the country? Is it a regional approach that is

taken with hospitals in using one site?

Dr. HARCH. No. No. They are spread throughout the country.

There are approximately 600 facilities now that are hospital-based.

And due to recent changes in Medicare reimbursement, two

things: One was the approval of treatment of diabetic foot wounds,

which we had a very large part in getting approved.

And the second is a doubling of the hospital-based reimbursement for this. Hyperbaric facilities are now being put in hospitals

all around the country. Additionally, hyperbaric chambers are

being put in freestanding facilities. And to my knowledge now,

there are maybe 130 of those.

So there are over 700. The numbers that are increasing are substantial.

One for-profit company that I know of, there are probably—I am

going to say 8 or 10 large ones, putting a new facility in a hospital

approximately every, oh, 2 to 3 weeks. So we are seeing a substantial increase in installation of chambers, which will translate into

increased usage, but not necessarily for these more devastating

neurologic problems.

Ms. WATSON. I am not clear on the coverage. Would Medicaid

cover it?

Dr. HARCH. That is a big fight right now. Medicaid has two

tracks. One is medical necessity. And one is necessity to—or not

necessity, but to ameliorate or correct problems with disabled children.

And it is under that that Hyperbaric Oxygen Therapy likely will

be reimbursable. Unfortunately, it is in the courts right now.

Ms. WATSON. Medical necessity?

Dr. HARCH. No, no, no. On this statute, amelioration or correction.

Ms. WATSON. Is medical necessity coverable?

Dr. HARCH. Tricky. It is on this other list of FDA indications,

many of which do not have any remunerative science that there is

behind the treatment of cerebral palsy with hyperbaric oxygen.

But again, I am going to go to politics. It was approved by a

group of doctors, some who had a very personal interest because

that was their pet subject. And in fact, it got approved. Once approved, it was adopted by the FDA, adopted somewhat by Medicare, third party insurers, and Medicaid.

So what has happened is, the Medicaid reimbursement for these

things is not necessarily tied to science. And one of the indications

which had the greatest science for we don’t have reimbursement

for.

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Ms. WATSON. Well, I am hoping that this committee can be instrumental in gathering the scientific evidence, the empirical evidence and making it public through HHS or through one of our

agencies. I think it is an absolute necessity that we do that.

And I think it might require, Mr. Chair, some additional legislation to be sure that this treatment is recognized and covered under

one of our programs. And I don’t know exactly—we would have to

kind of research where it should be.

Because to see the results that I see in this room, convince me

that we have a void there, and we have to let a lot of children and

adults just languish out there when they could be affected very

positively and their health could improve.

Dr. HARCH. Thank you. We were praying that you would get into

this.

Mr. BURTON. Well, your prayers have been answered.

You know, you don’t need to do that. Do we have anybody in here

from the Food and Drug Administration or HHS? I didn’t think so.

What we will do, though, is we will need as much documentation,

and we need it, if you will, in as much as possible layman’s language so that we understand it. And we can also put it in the kind

of question format that they will understand and that they will

know that we know, so that they have to respond. If I send a bunch

of hyperbole over there that they know Congressman Burton is not

a doctor and Dr. Watson is not a medical doctor, they might be able

to, you know, give us the shuffle off to Buffalo.

But if it is in layman’s language and we ask questions that are

readily understood, then they will have to respond in like kind.

And I know that Dr. Weldon, who does have the knowledge to be

of great assistance, and Dr. Watson and I will be very happy to

pursue this.

But we need the facts. We need the documentation, too, but we

need the facts so that we can write an intelligent letter that they

will have to respond to.

Beyond that, regarding legislation, Dr. Watson, Congresswoman

Watson, how many titles do you have? We will see what we can

do legislatively to put some heat on our health agencies as well.

But we need to have all of the knowledge we can from you guys.

Ms. Gordon, thank you very much for working so hard on

MUMS. I am sorry that you and your daughter had such a tough

time.

I appreciate you, doctors, and all of the hard work that you are

doing.

And thank you to all of the people in the audience who came. I

have met some of you before.

This fight regarding autism is one that has been going on for a

long time. We have been able to get mercury out of all of the children’s vaccines but three. They are still in adult vaccines. But you

know, Congresswoman Watson, Weldon, myself we are going to be

around here for a while. We will just keep pushing until we get the

whole enchilada.

Anyhow, thank you very much. We stand adjourned.

[Whereupon, at 4:25 p.m., the subcommittee was adjourned.]

[The prepared statement of Hon. Ileana Ros-Lehtinen and additional information submitted for the hearing record follow:]

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