[House Hearing, 108 Congress]
[From the U.S. Government Publishing Office]
AUTISM SPECTRUM DISORDERS: AN UPDATE OF FEDERAL GOVERNMENT INITIATIVES
AND REVOLUTIONARY NEW TREATMENT OF NEURO-DEVELOPMENTAL 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
U.S. GOVERNMENT PRINTING OFFICE
95-740 WASHINGTON : 2004
_________________________________________________________________
For sale by the Superintendent of Documents, U.S. Government Printing
Office Internet: bookstore.gpo.gov Phone: toll free (866)512-1800;
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COMMITTEE ON GOVERNMENT REFORM
TOM DAVIS, Virginia, Chairman
DAN BURTON, Indiana HENRY A. WAXMAN, California
CHRISTOPHER SHAYS, Connecticut TOM LANTOS, California
ILEANA ROS-LEHTINEN, Florida MAJOR R. OWENS, New York
JOHN M. McHUGH, New York EDOLPHUS TOWNS, New York
JOHN L. MICA, Florida PAUL E. KANJORSKI, Pennsylvania
MARK E. SOUDER, Indiana CAROLYN B. MALONEY, New York
STEVEN C. LaTOURETTE, Ohio ELIJAH E. CUMMINGS, Maryland
DOUG OSE, California DENNIS J. KUCINICH, Ohio
RON LEWIS, Kentucky DANNY K. DAVIS, Illinois
JO ANN DAVIS, Virginia JOHN F. TIERNEY, Massachusetts
TODD RUSSELL PLATTS, Pennsylvania WM. LACY CLAY, Missouri
CHRIS CANNON, Utah DIANE E. WATSON, California
ADAM H. PUTNAM, Florida STEPHEN F. LYNCH, Massachusetts
EDWARD L. SCHROCK, Virginia CHRIS VAN HOLLEN, Maryland
JOHN J. DUNCAN, Jr., Tennessee LINDA T. SANCHEZ, California
NATHAN DEAL, Georgia C.A. ``DUTCH'' RUPPERSBERGER,
CANDICE S. MILLER, Michigan Maryland
TIM MURPHY, Pennsylvania ELEANOR HOLMES NORTON, District of
MICHAEL R. TURNER, Ohio Columbia
JOHN R. CARTER, Texas JIM COOPER, Tennessee
MARSHA BLACKBURN, Tennessee ------ ------
PATRICK J. TIBERI, Ohio ------
KATHERINE HARRIS, Florida 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 DIANE E. WATSON, California
CHRISTOPHER SHAYS, Connecticut BERNARD SANDERS, Vermont
ILEANA ROS-LEHTINEN, Florida (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
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
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
Disease 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
first-ever ``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.
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 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 evidence-based 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.
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 toxicity 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 disability, 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 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.
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 mercury 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.
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-
year-old 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 lectures, 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, autism-like 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. 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 Internet-based 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, 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.
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 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-year-old 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.
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----
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.
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.
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.
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.
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.
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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