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This listserv is dedicated to helping parents of brain-injured children access reimbursement of Hyperbaric Oxygen Therapy (HBOT) through their state Medicaid agency, according to Paragraph 5 of the EPSDT statute as found in 42 USC § 1396d(r).

The list moderator/initiator is David Freels, father of Jimmy Freels. Jimmy is a Georgia Medicaid recipient who has been denied HBOT. However, his case is in appeal, and David has continued to gather documentation and help other parents across the US in their quest for this permanent, life-changing, noninvasive treatment.

Free List membership includes access to numerous pdf files that will be helpful in making your Medicaid request. It is hoped and anticipated that as more parents seek Hyperbaric Oxygen Therapy and go through the various bureaucratic hurdles that a discussion forum such as this will help foster and facilitate a way to compare notes on how to get this treatment.
There are no membership restrictions. Parents, Medicaid administrators, doctors, and other providers are all invited and encouraged to join and participate.
This "welcome" message is an explanation of the Medicaid law for children, also downloadable as a pdf file at http://groups.yahoo.com/group/medicaidforhbot/files/

In the interest of brain-injured children, a new listserv has been formed to help parents access Medicaid reimbursement of Hyperbaric Oxygen Therapy (HBOT). Please join in and help The HBO Movement to make Hyperbaric Oxygen Therapy a mainstreamed therapy treatment of first choice replacing painful surgery, casting and Botox injections. Parents and professionals working together for this common goal have accomplished unbelievable progress already. Parents worldwide are fighting for this safe, God-given natural HBO treatment. We are being forced to fly our children to other countries and leave our families to live out of hotels for months at a time. Desparate parents are second mortaging their homes and vehicles in order to afford the treatments. Because of FDA enforced guidelines, our local hospitals with Hyperbaric Chambers are closing their doors to us. There are 13 conditions approved to be treated and covered by Medicaid and insurance. We want brain injury added to the approved list.

mailto:medicaidforhbot-subscribe@yahoogroups.com

Hyperbaric oxygen has been proven to improve recovery in brain-injury. There are reports that over 90% of all brain-injured children who receive HBOT receive improvement. However, it is currently not accepted by pediatric neurology as a standard treatment of care for our children. Because of this nonacceptance parents are forced to pay for hyperbaric oxygen out of pocket. Many parents have already taken out 2nd and 3rd mortgages to pay for this incredibly safe, noninvasive, life-changing, permanent therapy.

The goal of the medicaidforhbot listserv is to change this status. Once Medicaid reimburses HBOT, the insurance companies will follow suit.

A large obstacle is that each state is free to administer Medicaid according to however they want; however, each state must comply with the federal Medicaid law for children--which specifically stipulates that a treatment like HBOT must be paid for by state Medicaid plans--whether it is "covered by the state plan or not".

Through this forum we as parents, caregivers, and advocates will be able to exchange information, tips, and advice on how to access this for our children.Together we can make a difference.

In addition to invaluable conversation and encouragement, list members will be able to download over a dozen pdf files that can be used to put together a request for Medicaid reimbursement through their own state agencies. There is documentation from several states that will already reimburse HBOT for brain-injury.

These files are available for download from http://groups.yahoo.com/group/medicaidforhbot/files/

File : http://groups.yahoo.com/group/medicaidforhbot/files//HBOT_Florida_pays.PDF
Uploaded by : dfreels@mindspring.com
Description : "Florida Medicaid reimburses for hyperbaric oxygen treatments with no limitations to eligible recipients under the age of 21." In addition, Florida Medicaid will also arrange transportation. Florida parents, it's time to start asking. You can access this file at the URL
http://groups.yahoo.com/group/medicaidforhbot/files/HBOT_Florida_pays.PDF

When David started the List serv he decided to include people he felt should be interested in dialog petrtaining to coverage by Medicaid of Hyperbaric Oxygen Therapy for children with brain damage. As he put it, "These unsuspecting subscribers included every director of special education from all 50 states, the president and board of directors of United Cerebral Palsy--plus all 150 or so UCP chapters from across the country. Other subscribers included various members of disability advocacy groups. Still other subscribers included the day-to-day administrative personnel of HCFA/CMS--the folks that are making the decisions and pulling the trigger on what services are allowed and disallowed. I had also subscribed staff members of the National Brain Injury Association--plus their individual state offices. Base subscribers included influential members within the hierarchy of the Undersea and Hyperbaric Medical Society, the controlling entity of Hyperbaric Medicine."

Needless to say some were not pleased with the deluge of emails they received. To complicate matters there was a glitch with Yahoo and those requesting to be "unsubscribed" had difficulty doing so. The following is a synopsis of some of the discourse that followed:

Date: Wed, 5 Dec 2001 21:59:24 -0000
Subject: [MedicaidforHBOT]
MR. DAVID FREELS;
>YOU ARE ADVERSELY AFFECTING THE PERFORMANCE OF A US NAVY SERVER AT CAMP >LEJEUNE, 2ND DIVISION, US MARINES. IN CASE YOU ARE UNAWARE OF THE EVENTS SINCE SEPT 11, WE ARE CURRENTLY IN THREAT CONDITION BRAVO DURING THIS NATION'S ONGOING WAR ON TERRORISM. OUR SITE HAS BEEN THE UNSUCCESSFUL TARGET OF VARIOUS ATTEMPTS AT TRESPASS AND VIRUS INTRUSION. >WE ARE UNCERTAIN WHY YOU ARE CONDUCTING THIS DISRUPTIVE INTERNET ACTIVITY, IS IT PASSIVE AGGRESSIVE BEHAVIOR, IGNORANCE OF THE USE OF THE INTERNET, IMMATURE LARK OR MALICIOUS INTENT.
>FROM MY BRIEF SCAN OF THE MYRIAD EMAILS YOU HAVE SENT, IT MAY BE MALICIOUS INTENT TO DISRUPT. >THE NAVAL CRIMINAL INVESTIGATIVE SERVICE WILL NEED A MEANS TO CONTACT YOU. PLEASE SEND ME YOUR PHONE NUMBER AND HOME ADDRESS SINCE IT IS MY SITE YOU ARE CONSTANTLY CONTACTING AND NEED TO INITIATE ACTION TO PREVENT FURTHER DISRUPTION DURING THESE CRITICAL TIMES. > > >COMMANDER JAMES M CHIMIAK >U.S. NAVY, CAMP LEJEUNE, NORTH CAROLINA
>

Commander Chimiak,
First of all, thank you and all members of the armed forces for the excellent job you and your comrades do in defense of our freedom and liberty. I apologize for Yahoo and myself for the disruption your server has experienced the last few days. Unlike many others, you did not request to be unsubscribed. I can only assume you want to remain a list member. I do hope you choose to stay. In order to avoid future problems, I will change your email delivery status to the daily digest format.While your comrades in arms are fighting for the continued freedom and liberty of the United States, I ask you to understand that I too am fighting for the freedom and liberty that my child is legally entitled to.He is almost eight years old and is still unable to stand. He is still unable to sit up on his own, but he is trying. He is still unable to speak clearly,but every day he improves. He is still unable to go to the bathroom on his own. We have discussed his incontinence, and he tells me that he cannot feel pressure in his bladder and so has no idea when he must urinate. He has no feeling in his bowels either, and so he must wear diapers.I have been changing his diapers for almost eight years. But I have hope. In the double-blind controlled study of Hyperbaric Oxygen Therapy for multiple sclerosis as reported by Fischer in 1983, the majority of participants in the trial group had noticeable improvements in their ability to control their bladders. {If you've not read this NEJM paper let me know and I'll email you a pdf. Or give me your fax number.]Among other things, I want my little boy to be able to control his bladder. Not because I'm tired of changing his diapers but because he deserves his dignity. Just like you deserve yours and I deserve mine.My son Jimmy lives in a state of perpetual hypoxia. That's why he's still not able to rise up off the floor, though he can push up on all fours thanks to 42 sessions of Hyperbaric Oxygen Therapy paid for by our church. Our son went from one and two word couplets to speaking in paragraphs. His speech went from one who responded to one who initiated conversation. He went from no imagination to imaginative play and sharing with us his ideas and thoughts and theories and wonders. We got a little boy. His right hand went from a clenched fist locked under his chin to a blossum of fingers that spread out before him and met together in midline with his left hand.He went from rigid spasticity to legs opened, spreading, and knees up underneath him when crawling. Other children have had even greater responses. Some have even gotten out of wheelchairs and joined soccer teams. Though this hasn't been true for all, what has been true is that over 90% of all children have experienced improvements. Kids once on g-tubes can now feed themselves. Ventilator-dependent children have been weaned from ventilators. In short, the quality of life consistently and universally improves. While I have never wanted a disruption of your server or any of your military affairs, perhaps it would be helpful to think of that disruption in a different light.
So many of your UHMS colleagues have never approved hyperoxia for hypoxia, perhaps it's because you've never experienced hypoxia or the results of such an experience. You've never had a part of yourself in paralysis. Unable to move, unable to do anything no matter how often or how hard you told "it" to do whatever you wanted "it" to do. Or maybe you have. Perhaps your server experienced a sort of electronic hypoxia. Things clogged up and just shut down. I know how frustrating that paralysis can be. I live with it and watch it and fight it everyday. If we can join forces to fight the Taliban, can we join forces to fight for a change in oxygen delivery? Thank you very much and God bless. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"I have sworn upon the altar of God, eternal hostility against every form of tyranny over the mind of man." --Thomas Jefferson, probably an early advocate of Hyperbaric Oxygen Therapy.
---------------------------- David Freels
2948 Windfield Circle
Tucker, GA 30084-6714
USA
770/491-6776 (phone and fax)
509/275-1618 (efax, sends fax as email attachment)
mailto:dfreels@mindspring.com
mailto:medicaidforhbot-subscribe@yahoogroups.com
mailto:HBOTnow-subscribe@yahoogroups.com

Date: Wed, 5 Dec 2001 16:43:36 -0500
Subject: RE: [MedicaidforHBOT] still more UHMS corruption
Reply-To: medicaidforhbot@yahoogroups.com
Commander Chimiak,
My contact information can be found in my email signature, as noted in every post. Aren't you a member of the Executive Committee of the Undersea and Hyperbaric Medical Society? What do you think of the UHMS Ethics Report?
David Freels,
2948 Windfield Circle,
Tucker, GA 30084-6714

Commander Chimiak,
Since I am well aware that this email is going directly to the same email box as that of the ones you are threatened by, I believe any charges or investigation you would direct toward Mr. Freels would have to include me as being a guilty party also? It scares the hell out of me to think an email address which would be used as a security and important address that could be affected by the emails from this list was ever available to Mr. Freels or anyone else who does not have a security clearance. It is no wonder our guard was down so low as to let an event as that on Sept. 11 happen. As a taxpayer who helps pay your salary for my personal safety and freedom, your email infuriates the hell out of me. Your time would be better spent setting up some secure servers that could not be infiltrated by a group of dangerous parents and grandparents like ourselves. Robert Hartsoe Email: rhartsoe@skybest.com

Date: Wed, 5 Dec 2001 21:59:24 -0000
Subject: [MedicaidforHBOT] Disbelief
Reply-To: medicaidforhbot@yahoogroups.com
Dr Chimiak,
I am stunned by your assertion that a few e mails sent to you by the parent who, incidentally, copes daily with his brain injured son, is a threat to the security of the US Marines. There are those who would assert, in view of the recent failure of the US intelligence services, that you may have a point but I know that Mr Freels is a God fearing American who is fighting for the right of children to access a simple treatment which can improve their quality of life. He is fighting for the very freedom that was attacked by the terrorists who killed so many innocent Americans and other nationals on that dreadful day. An apology is in order. Philip James Dr P B James MB ChB DIH PhD FFOM, Wolfson Hyperbaric Medicine Unit, Scotland Date: Thu, 06 Dec 2001 15:31:52 -0300 Subject: Re: [MedicaidforHBOT] still more...
Reply-To: medicaidforhbot@yahoogroups.com
Dear Commander Chimiak, sir,
this is an open letter to the list, for I fear becoming unjustly marked as a disrupter of military operations, or worse -an enemy of your great nation-, if I write directly to your email address in Camp Lejune (a public datum, I presume). I sincerely hope it is not intercepted by any yellow-press journalist, or worse...With all due respect, the tone and contents of your message to the (civilian) originator of this group is maliciously threatening and, to the best of my understanding, unnecessary and disproportionate, if not illegal under several military and civilian codes. Incidentally, also diagnostically incorrect, as to the type of behaviour, intention and what not. You do not need a counselor or a judge to spot the several instances of threat, attempts at a distortion of facts/exageration, and an ostentation of military grade outside your specific area that would have bordered comicality, if it weren't so seriously sad. I cannot cite by memory all the US military codes you may have breached in this single letter, but I could ask my friends in Washington, and the friends of my father's cousin, some of them WWII veterans and retired USN high officers, and some others still in prominent governmental positions, there and abroad (...it is my time to add some virtual leverage to the discourse...). That officers and gentlemen should not put themselves in a ridiculous position, under no circumstance, may be an unwritten but relevant rule... A netsecurity advise: just ask your computer experts to add a message filter for mails from this source (it takes only some seconds) A second advise,...also redundant, I expect : it is common knowledge that the web is public, it is not a secure means, by definition, and certainly not suitable for sensitive tasks in these special times. As your Commander-in-Chief has said, it will be a long war. The current condition would temporarily cut certain civil liberties, and alter many areas and ways of life, for all too real and grave reasons. What I have never suspected is that it could be used in vain for such a petty cause, for this could negate the seriousness of it all. With the best of intentions, yours, Ignacio Fojgel, M.D. Director, Clinical Hyperbarics Unit Buenos Aires, Argentina. PS: Your Military Mission in this country may contact me for clarification of anything I have written above, at my email or address, listed in the local phonebook.

Date: Thu, 06 Dec 2001 15:31:52 -0300 Subject: Re: [MedicaidforHBOT] still more...
Reply-To: medicaidforhbot@yahoogroups.com
If you do not unsubscribe me as requested I and others are exploring the possibility of filing a class action lawsuit againt you due to the excessive costs and time in getting hundreds of unwanted email. I and many others have followed your instructions on how to unsubscribe without any success. We have never asked to be on this list to begin with. Therese Willkomm, Ph.D. ATP
Executive Director
ATECH Services
17 Pleasant Street
Dolloff Building
2nd Floor
Concord, NH 03301
603-226-2900
twillkomm@nhaat.mv.com

Dear MedicaidforHBOT list members,
Yesterday was a busy day for me. I unsubscribed about 150 mostly angry people that I had subscribed to the MedicaidforHBOT list without their permission. These unsuspecting subscribers included every director of special education from all 50 states, the president and board of directors of United Cerebral Palsy--plus all 150 or so UCP chapters from across the country.Other subscribers included various members of disability advocacy groups.Still other subscribers included the day-to-day administrative personnel of HCFA/CMS--the folks that are making the decisions and pulling the trigger on what services are allowed and disallowed.I had also subscribed staff members of the national Brain Injury Association--plus their individual state offices.Base subscribers included influential members within the hierarchy of the Undersea and Hyperbaric Medical Society, the controlling entity of Hyperbaric Medicine. What I had hoped to accomplish with this gathering is a place where we could exercise our freedom of assembly, a place where we could talk and share and discuss and debate and finally reach some sort of concensus on the incredible, life-changing, society-changing treatment known as Hyperbaric Oxygen Therapy. Instead we shut down Yahoo groups.Can we try again?If you still want to remain subscribed don't do anything. If you want to unsubscribe, write to me directly--not the group--and I'll unsubscribe you.mailto:dfreels@mindspring.com Otherwise, let's talk.

Date: Wed, 5 Dec 2001 15:30:37 -0500 Subject: RE: [MedicaidforHBOT] still more UHMS corruption
Reply-To: medicaidforhbot@yahoogroups.com
Dear Doctor Conoscenti:
Clearly some parents and relatives are angry about the way they've been treated by the establishment. I know you are busy as I am. Since I work for Congress and oversee the NIH and CDC, CMS, and AHRQ, I'm certainly interested in what you believe the promising areas of HBOT are, and how it can be expanded to be made more available. I just talked to a friend whose husband was badly carbon monoxide poisoned while working on a tractor in a rural area. He was never treated since none of the doctors knew about HBOT and CO poisoning and there was no chamber at their hospital. Since CO poisoning is on the list as an approved treatment protocol, I'd be interested in how you would expand HBOT availability in the medical system. Since you are involved in Critical care, I would like to know what areas you currently use HBOT for, and what promising research areas you believe should be pursued. Since I help write the language that encourages NIH to do that, and have gotten NIH to conduct the HBO research they are currently doing, this would be very valuable for public policy. UHMS received a $2 million grant as a result of my efforts.
Dr. William A. Duncan
Rep. Ernest J. Istook, Jr.
Washington DC 20515-3605 (202) 226-3454

Date: Wed, 05 Dec 2001 17:05:38 -0500 Subject: Re: [MedicaidforHBOT] still more UHMS corruption
Reply-To: medicaidforhbot@yahoogroups.com
Dr. Duncan, First, let me compliment you on your work, I understand you are very open-minded to the future of medicine, especially therapies with such high promises as HBOT. I would be very interested in what the specifics of the grant to the UHMS was to be used for. Were there any provisions for possible studies on neurological treatments with hbot? Are the grant applications and conditions a matter of public record and how may I obtain copies or view them. Although I am certain you hear many anectdotal stories, I would like to share one with you. We have a client, Female, age 22, who was involved in an auto accident 6 years ago. This resulted in TBI which left her a total quadraplegic, non verbal, G-tube feeding and a headband was required to hold her head upright in her wheelchair. After 30 HBOT sessions, 2xday, she ate her first food in over 5 years. She ate a hamburger, actually holding it most of the time with her hand. In addition, she was able to hold her head erect on her on and was becoming verbal in a limited way. After 80 sessions, she is taking steps with assistance, her vocabulary is improving and she is very cognitive. She is down to one G-tube feeding a day and will soon be off it. Yes, it is considered anectdotal. No, it is not a part of a study, just another of our many success stories here at Children's Hyperbarics. However, the success of this and other stories can be documented by MD's, therapists, and other professionals who have taken care of these patients over the years. Are not these MD's highly trained scientists, the same as those on the UHMS membership directory? Should there not be a way of documenting these cases scientifically using the professional scientists who can report factual improvements with these cases? I appreciate the opportunity to address you. I have been unable to contact you by phone and everyone appreciates having someone as professional and fair minded as yourself in the NIH. With professionals like yourself, there is hope. Robert Hartsoe , Children's Hyperbaric Cooperative at Miracle Mountain , CHC@AsheCounty.com

Date: Thu, 6 Dec 2001 21:09:28 -0500 Subject: Re: [MedicaidforHBOT] still more...
Reply-To: medicaidforhbot@yahoogroups.com
Mr. Conoscenti- As a parent of a brain-injured child (CP), I am appealing you to read this e-mail and walk a minute or so in my shoes. Do you know what it's like for your own child whom you love and care for to not be able to say, "Dada" or "I love you"? How about being stared at each time you leave the house? What about medical procedure after medical procedure? How about 6 ongoing therapies to add to your schedule weekly? I am assuming from your e-mails that you do not. Because of this, I am appealing to you to view this from a parent's perspective. If you care to, I would like to share with you my experience with HBOT. My son can make repetitive vocalizations now. He can actually SEE me outside the chamber now and even initiates peep-eye with me. He can actually drink a bottle without a steady stream of milk coming out the side of his mouth. Not only are his thumbs now not in tight fists, but he actually has some grip strength. These results are remarkable to me. HBOT is helping him tremendously. It is no cure-all, but it is helping him.
I am in no way condoning David putting people on this list without asking permission. That was wrong ethically and he has owned up to that with apologies over and over again. The desperation of a parent for their child can make you do crazy things. But we can't write off all these children who have had results like my son because we don't like the messenger. So, what do the parents do? What would you do if this were your child? Would you fight for him to get the treatment which you have witnessed make a difference in his life or would you buckle because the "status quo" (who don't live with your child or even know him) doesn't agree? Dr. Conoscenti, I sincerely mean no disrespect to you personally or your profession from this e-mail. Please know that. I am not trying to bash anyone. We are sincerely trying to advocate for our children and there are going to be some people who are not going to like it. We will wind up at some points stepping on toes and even making mistakes. But, if Doctors and parents have the same goal which would be the best medical care for EVERY patient, I would think we would be heard. In this spirit, I would love to have your suggestions for how we could get this treatment approved by medicaid / insurances for our children. I'm sure you would agree that no parent worth their salt would give up because professionals don't agree what's best for their child. Thank you for your time, Jennifer Rieger

Date: Thu, 6 Dec 2001 22:06:12 EST
Subject: Re: [MedicaidforHBOT] still more.../ Reply
Reply-To: medicaidforhbot@yahoogroups.com
Dr. Conoscienti,
First of all I will say what I think others WANT to say, SHAME ON YOU!! To say that you and your staff want no part of this is utterly a disgrace to the medical profession, and it is exactly people, DOCTORS like yourself and your high and mighty attitudes that really pisses us parents off, and makes us fight back ten times harder to knock you down to size. You are no better than the words you flung out against Mr. Freels. You are Chief and Sr. Attending, you should be stripped of your position to have that kind of attitude and still be taking care of patients. Thank God I am not a patient under your care, cause I would question your ethics and morals. Thankfully there are doctors out there that AREN'T like you with your attitude, and you really should not have a HBOT clinic if you feel so adamant on NOT helping EVERYONE who needs it and can benefit from it! Tammy From: NateTBI@aol.com

To: medicaidforhbot@yahoogroups.com, NateTBI@aol.com
From: "Duncan, William" william.duncan@mail.house.gov
Mailing-List: list medicaidforhbot@yahoogroups.com; Date: Fri, 7 Dec 2001 17:15:20 -0500
Subject: RE: [MedicaidforHBOT] still more.../ Reply Reply-To: medicaidforhbot@yahoogroups.com
Dr. Conoscienti is not getting your emails now because there is a block on his server. (This list really did mess up his ability to handle the job he was doing, though fortunately for me, when I came back to 448 emails after 2 ½ days, the House of Representatives Email Server could handle it. I still haven't read them all.) I know many of the UHMS docs out there are concerned because of the political pressure being brought to bear. I just asked him how many CP kids he thought were in my Member's district, versus how many Hyperbaric trained UHMS members. The answer is obvious, and votes count. Believe me, we do count votes. Also, he was puzzled by the genuine sophistication of most parents of CP kids he's talked to. They're not illiterate or uneducated, and many are professionals. It remains a puzzlement to the UHMS crowd working to block this. Keep up the good work and get organized.

If I were able to, I'd organize 25 cents from every HBO treatment to go to a tax-deductible research/treatment fund, like the IHMA has set up. That would very quickly translate into enough money to do the verification research, the follow up research to improve the treatment protocols for the various brain injuries, and provide the money to people who truly had no other means of getting their children treated until the insurance/Medicaid/Medicare problem is solved. Understand that it wouldn't take much organized effort to get the insurance problem taken care it. It is in the government and in the insurance industry's interest to cover this therapy if it is cost effective, which it is. That takes preparation and presentation. I know the IHMA will do a good job of that. The UHMS has had such a research arm for years, and they have never been able to get the hospital based clinics to go along with any such idea. Of course, when an outpatient clinic is treating 50 people per day, and the hospital based clinic is only treating 11 or 12 and losing money because of their myopic approach, it is not hard to see why there was a problem with the idea. They also wanted a lot more than a quarter. Just a thought. Keep up the good work. Bill Duncan

Date: Sun, 2 Dec 2001 14:18:26 -0500
Reply-To: medicaidforhbot@yahoogroups.com
Subject: [MedicaidforHBOT] Eric Kindwall, retired?
>Please remove me from your list. I am retired.
>Eric Kindwall
>erichbo@aol.com
>erick@aya.yale.edu
Dr. Kindwall,
"I am retired." Does this mean you are also retired from the UHMS HBOT Committee? If not, why not? I look forward to your reply. David Freels

Date: Mon, 3 Dec 2001 15:13:26 -0500
Reply-To: medicaidforhbot@yahoogroups.com
Subject: [MedicaidforHBOT] Re: Eric Kindwall's Retirement
Dr. Kindwall,
I know you've unsubscribed, but I thought you'd be interested in this. Is this true? Are you against helping brain-injured children and adults? David Freels >Date: Sun, 02 Dec 2001 11:44:04 -0600
Reply-To: medicaidforhbot@yahoogroups.com
Subject: [MedicaidforHBOT] Re: Eric Kindwall's Retirement
I find it interesting that Dr Kindwall unsubscribed from this list even though he is a member of the UHMS Ethics Committee that was being discussed. His reason was that he is "retired". Well I saw him at the UHMS conference in San Antonio Texas so he is still an active member of that organization. Also, even though he is "retired" he was planning on doing a study at Froedert Hospital in Milwaukee on children with brain damage. His protocol would have been 60 HBO treatments at 2.5ata! His control group were not going to be pressurized. When I argued with him that this protocol could be dangerous and make the babies toxic he became defensive and said he had treated babies at 3ata. I pointed out that those treatments were for a different condition (carbon monoxide poisoning) and the babies only needed a few treatments not 60 in a row. It was clear he had not studied the reports and studies worldwide on using lower ata pressures for brain damage. After our last conversation his staff never returned my 7 follow-up calls and we had been talking on a regular basis prior to this. In fact I was trying to raise $1 million to fund his study until he told me what his intentions were. Julie Gordon<

Date: Mon, 3 Dec 2001 10:38:59 -0500
Reply-To: medicaidforhbot@yahoogroups.com
Subject: RE: [MedicaidforHBOT] Unsubscribe
Please remove me from your list.
Reynaldo Green
Resource Center Director
rgreen@braininjuryga.org
1-888-334-2424 (BIAG)
1447 Peachtree Street, NE
Suite 810
Atlanta, GA 30309
www.BrainInjuryGA.org

Date: Sat, 8 Dec 2001 08:50:33 -0500
Subject: RE: [MedicaidforHBOT] still more.../ Reply
Reply-To: medicaidforhbot@yahoogroups.com
Dr. Kelly,
The somewhat venomous reactions of parents are well-placed, particularly against those in the UHMS hierarchy. The failure of the UHMS has been well-documented, particularly on this list. Because of UHMS failures, exclusive control over Hyperbaric Medicine is about to be removed from the UHMS. Hyperbaric Medicine does not belong to the UHMS. It belongs to humanity, It is perhaps the purest form of God's medicine. The UHMS has been entrusted with HBOT, and their relationship to Hyperbaric Medicine is one of stewardship. The Undersea and Hyperbaric Medical Society have been poor stewards of Hyperbaric Oxygen Therapy, and their "ownership" is about to be removed.

>If your goal is to see HBOT indications expanded, gather good data, and present it properly: Ad hominem attacks have no place in reasoned scientific discourse. Excellent data to support the use of hyperbaric oxygen for brain-injured children has been gathered and is available for your review at http://groups.yahoo.com/group/medicaidforhbot/files/ . Your comments are welcome. In addition, if you know of other documentation that should be included, I would be interested in posting that too. In our situation, we did gather good data (before/after SPECT-scans which demonstrated an increase in cerebral blood flow of 25.4%), and no pediatric neurologist in the city of Atlanta would discuss it, except one, and he died about a year ago. The radiologist wouldn't discuss it either. He said, "The findings are inconsistent with the diagnosis." Georgia Medicaid refused to acknowledge the data too, ignoring the obvious benefits that hyperbaric oxygen would have for our son and also thousands and thousands and thousands of people.The "system" of care for my child includes Medicaid benefits; however, what I learned is that Georgia Medicaid is administered with the goal of nondelivery of services. How is this done? Georgia Medicaid keeps providers ignorant of how to provide services. It keeps beneficiaries ignorant of what their full benefits are. And Georgia Medicaid keeps its employees ignorant of the rights of beneficiaries and what Medicaid's responsibilities are to Medicaid beneficiaries and Medicaid providers. All this ignorance results in the nondelivery of services. The nondelivery of service results in the nonspending of monies. That's no way to run a healthcare system. Unfortunately I've learned that many other states run their Medicaid system the same way. One of the goals of this list is to empower parents and other caregivers with the knowledge of how to overcome these bureaucratic barriers.With the failure of the UHMS, Neurology, Radiology, and the Medicaid and other federal and state programs, ultimately we have to take all of this into our own hands or else our children will never get the care they need or have a legal right to.

>All you are doing is making an enemy out of a physician I know to be a good person. Your shrill anger also makes it very unlikely that any mainstream hyperbaricists will ever read this list-just look at all of the docs who have had their names removed. Many of those who asked to be removed have either been UHMS ethics committee members or UHMS executive committee members. Do you want to vent your fury, or help children: irs your call. I think you owe Dr. Conoscienti an apology. >

Here you are probably correct. Venting doesn't really accomplish much in the long run except alienation. We have a situation here. Instead of being at odds, it is my hope that we can all find a way to work together.
David Freels, 2948 Windfield Circle, Tucker, GA 30084-6714 USA 770/491-6776 (phone and fax) 509/275-1618 (efax, sends fax as email attachment) dfreels@mindspring.com