1. James R. Langevin, U.S. House Representative (Democrat - Rhode Island) 2. Marcie Roth, Executive Director/CEO, National Spinal Cord Injury Association 3. EDNC, END DEPO NOW CAMPAIGN, Dennis J Capolongo, Director/EDNC 4. Zana Alex Gentle, Arachnoiditis Patient 5. Conversation with Bob Yant, Board of Directors of the Christopher Reeve Paralisis Foundation 6. Derek, member of The Australian Institute of Welfare and Community Workers Inc, founder of CIAASA

 

James R. Langevin

U.S. House Representative (Democrat - Rhode Island)

Congressman Langevin was elected to the U.S.House of Representatives in 2001. He is a member of the Armed Services Committee and the Select Committee on Homeland Security, and is co-Chairman of the House Bipartisan Disabilities Caucus, Previously, he has served in the Rhode Island House of Representatives and as Secretary of State.

Congressman Langevin made history by becoming the first quadriplegic elected to the U.S. House of Representatives. He was injured at the age of 16 when a bullet accidentally discharged while he was working with the Warwick Police Department as a cadet in the Boy Scout Explorer program. Since his injury, he has dedicated his life to pubic service and has been responsible for introducing legislation, including the LIfespan Respite Care Act that provides services for family caregivers.

In March 2004, Congressman Langevin received the United Cerebral Palsy Congressional Leadership Award, which is awarded to outstanding individuals that focus their efforts on improving the lives of those with disabilities and their caregivers. He received his B.A. in political science and public administration from Rhode Island College in 1990 and his MPA from Harvard University in 1994.

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Marcie Roth

Executive Director/CEO National Spinal Cord Injury Association

Marcie Roth is the National Spinal Cord Injury Association's (NSCIA) CEO and Executive Director. She assumed this role in January, 2002 after spending several years as the Director of Advocacy and Public Policy for the National Council on Independent Living, and prior to that, as the Director of Governmental Affairs for TASH, an international disability rights organization. NSCIA was awarded the first ever "Best New Freedom Organization" award in 2003.

Ms. Roth's background in disability services, rights, grassroots organizing, coalition building and public policy work began in the early 1970's. She has been active as a local, state and national leader, and has been involved in senior management activities for several national and international non-profit disability organizations over the past twenty years, managing multiple projects and leading public policy initiatives simultaneously.

The current chair of the Maryland Statewide Independent Living Council, Ms. Roth has been a member of the Bord of Directors of the National Spinal Cord Injury Association since 1999. She currently serves on the Board of Directors of the National Coalition for Disability Rights, the Spinal Cord Injury Network of the Greater Washington Area and Access Information, Inc. and she is a Commissioner on the Montgomery County Maryland Commission on Disability Issues. A frequent contributor to the information super highway, Ms Roth's work reaches form the streets to cyberspace.

Ms. Roth has personal experience living with disability, is the parent of two children with disabilities and has had significant experience with spinal cord injury and it's effect on family members and partners.

She brings her commitment to advancing the rights and opportunities of people with spinal cord injuries and diseases by working in partnership with other disability groups to build local, regional and national strength as a collective grassroots force, united towards a common goal of greater opportunity and independence for all people with disabilities.

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EDNC	END DEPO NOW CAMPAIGN

 

Hello, my name is Denis J. Capolongo and I suffer from Arachnoiditis and other neurological deficits due entirely to a sever adverse reaction from epidural steroid injections.

I started a website called Depo-Medrol - Did It Harm You? a little less then two years ago. Since then it has grown into an International grassroots Campaign to have the steroid banned for epidural administration because of the harmful effects suffered by so many. Thus the EDNC, The End-Depo-Now Campaign was born. Our membership is only 124 at present but we're growing every day as word spreads about our efforts. Linked to various websites worldwide, we believe we're approximately 1,200 to 1,600 strong.

Complaining only of a sudden and localized hip pain, I was misdiagnosed in January 2002 with a disc herniation and given two simultaneous epidural steroid injections of Depo-Medrol with Marcaine that caused a very severe adverse reaction. It sent me to the ER twice and eventually landed me in the hospital as confused doctors scurried about. It caused severe paraparesis and horrific pain levels that spread cutward and downward from the injection sites for several nonstop months.

In the meantime, my new doctors at Johns Hopkins discovered that my original MRI's were perfectly clean; they could not find anything that would have substantiated my doctor's diagnosis and treatment. It's now believed that my original hip pain complaint was caused by a sprain and not from any spinal condition whatsoever.

Today I've become the poster-guy for the anti-ESI movement. I am living proof that a healthy person can be seriously harmed by this procedure. A perfectly healthy spine turned rotten by a "non-approved" steroid that was used "off label" in a place directly linked to this insidious disease right on the package insert, we remain perplexed as to the reason why doctors routinely fail to inform their patients of this fact prior to their injections.

We discovered to our horror that Depo Medrol has been the center of a global safety and efficacy debate for well over 15 years. It's neither "FDA approved nor recommended" by the manufacturer, Pfizer/Pharmacia, for epidural administration due to the shear number of "severe medical events" that have been reported to them and the FDA! Yet ESI's are still advocated and defended by doctors even though many recent trial studies have called the efficacy into question.

Our research makes clear that Depo-Medrol is indeed responsible for harming many people on a global scale, especially those with hypersensitive autoimmune systems who thought that their back aliment would benefit from these injections. But when a person's health would worsen following a Depo-Medrol epidural, their doctors would routinely blame it on something else and never on the procedure they had just performed. Never would they admit the obvious link.

Depo-Medrol contains known neurotoxins such as Polyethylene Glycol 3350, along with the preservatives Bezyl Alcohol in multidose vials and Myristyl Gamma Picolinium Chloride pg12 in single dose vials. Trial results have indicated that these ingredients can and do irritate spinal nerves and/or the arachnoid membrane if contaminated. Even the manufacturer, Pharmacia/Pfizer, is on record as being "extremely frustrated" with the medical community, calling the doctors who administered Depo-Medrol epidurally, "greedy" and dangerously misinformed"!

That's why we have formed a unified front against the epidural use of Depo-Medrol. Our goal is to have the FDA reevaluate the efficacy and safety of this steroid when used "off label" for epidural injections with the hope that they will label the steroid as contraindicated for epidural administration.

With support from the brave members of the EDNC, we're confident that our voice will be heard loud and clear when we petition the U.S. Food and Drug Administration's Center for Drug Evaluation and Research with our findings.

However, we wish to make it perfectly clear that the primary difference between the viewpoints of the EDNC and other investigators is that our research has clearly demonstrated that the vast majority of those who have suffered from spinal injuries due to improper ESI technique do not contract clinically significant Arachnoiditis!

Using FOIA, we discovered that over 350 deaths and over 15,570 severe neurological events have been reported to the FDA between 1998 and 2002 because of Depo-Medrol. This controversial steroid suspension, which is contraindicated for intrathecal administration, not indicated for epidural administration, and strongly "not recommended" for epidural injection by the manufacturer because of these reported "severe medical events", remains the number one steroid of choice for ESI's by the medical profession. Why then have these posted warnings been widely ignored? Why hasn't FDA triggered an alert? This remains a mystery to us.

A recent survey conducted by the EDNC indicates that hundreds of patients who complained of serious side effects and spinal deficits following the "off-label" administration of these steroid compounds, were widely ignored by their doctors who refused to notify the FDA of the manufacturer through MedWatch.

So even though the numbers above may appear to be excessive, we believe they represent a grossly underreported figure in our estimation. (According to a Harvard study, less then <2% of all adverse events are reported to the FDA.)

We wish to encourage that a research grant be awarded that would investigate the thousands of registered severe adverse medical events that have been filled with the FDA and the manufacturer because of steroid spinal injections. The most recent trials place the efficacy at no better than placebo at worst, and less than 20% at best. Yet these adverse events have been proportionally rising along with this non-approved yet every popular procedure! (Up 48% since 2001)

Our discussions with the manufacturer's chief Pharm-D has led us to believe that neurological changes of nerve roots at the cellular and molecular levels do occur in approximately 3-6% of all those who receive Depo-Medrol ESI's. (As stated, Depo-Medrol is now the preferred steroid for epidural administration even since the manufacturer discontinued the production of Betamethasone. It was linked to a number of reported deaths from ESI's)

He added that when this product is "wrongly mixed" with other chemical compounds (such as anesthetics) the potential to alter the crystalline structure thus increasing the neurotoxicity or it's potency does indeed increase the risk of spinal nerve injury when used for spinal epidurals. So when you consider that over two million injections are performed each year, thousands of people must be needlessly suffering as a result!

I am what has never existed before, a "base line subject"... a perfectly healthy person made severely ill when a very popular and now accepted "experimental treatment" was used. Unlike those that had prior spinal conditions, I am living proof that a perfectly healthy person will suffer a spinal cord injury when subjected to this treatment.

With support from Public Citizen and The Center for Pharmaceutical Safety, the EDNC is planning to petition the FDA/CDER to have the safety and efficacy record of Depo-Medrol reevaluated when injected in or near neural tissue. We will strongly advocate this investigation and we intend to remain steadfast until those who may be able to help us, take our safety complaint against Depo-Medrol seriously.

To put it plainly, we desperately need to conduct research that would help confirm and substantiate our belief that spinal cord injuries and chronic sensory disturbances occur when nerve roots are bathed with these unregulated steroid mixtures.

When any group is willing to focus their recourses on spinal cord injuries such as the IOM, this is greatly appreciated opportunity by those who are suffering.

We believe that prevention is in itself a cure. A preventive research study should take precedance over all else especially when so many have cried out in pain. The study we advocate has never been conducted before and if our conclusions are correct, many more will suffer unless something is done.

The medical community has been known to be very slow to respond to change without conducive evidence. Prevention based on credible scientific research is gravely needed at this time to help undo this medical injustice we believe is occurring without restraint. We need more then just the development of new drugs and surgical procedures that would help treat those who have been broken by misdirected medical techniques. Sometimes we need to fix the broken technique!
Kindest regards,
Dennis J Capolongo
Director/EDNC

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Adhesive Arachnoiditis

Zana Alex Gentle Arachnoiditis Patient

"Good Morning, Dr Johnson. Thank you for the opportunity to be with you here at the Institute of Medicine. My name is Alex Gentle, and I am a member of ARAC, an online support group for arachnoiditis patients. On behalf of the thousands of arachnoiditis patients and thanks to their support groups, ARAC, CIAA, COFWA, Arach Trust of the UK, and the other online support groups, for their case study contributions, I am here to present a plea, an urgent plea, from many suffering patients, with no cures and few viable treatment options, other than expensive, ephemeral stop gap measures, to help us CHANGE HISTORY- our position and unique challenge is detailed in the IOM Community Perspectives Guide.

My comments in the community perspectives book speak for themselves. We ARACHNIACS are the nomads of the medical world. Homeless, unique in the medical community, downtrodden, often unwanted, except where and when we can add to profits through additional ESI procedures we are isolated from most medical groups. . although less than 2% of the total members presented testimonies, their 50 pages of experiences are compelling and troubling. And you will notice they are very similar to each other. Many of us have the very same or similar experience with ARC. I urge everyone here to read these stirring stories of personal catastrophe in the last 2/3 of the Workshop Community Perspectives Guide. Our stories greatly corroborate the urgency of the need, and the current state of matters in ARC. As with most SCI, I have, and many if not most ARCs have bladder and bowel problems, sexual dysfunction, and disrupted careers, broken social ties. Many of us, such as myself, are recluses.

Yesterday at the Research Strategies meeting, Dr Cedarbaum and Dr. Bunge spoke of orphan drugs. WE ARCs are orphan patients, created by the medical system, yet denied by the medical system. I HAVE this obscure, often aggressively progressive, devastating, stealthy spinal cord injury called adhesive arachnoiditis. Or ARC for short. In Europe, esp the UK, we are often referred to as FBSSs for failed back surgery syndromes. Like thousands on the online ARC support groups, ARC has crippled me for life, made my existence a living breathing hell on this earth, decimated my personal and professional lives, eradicated my hobbies, killed my love life, laid waste to my ability to travel and vacation with family and friends, made me a prisoner to my house, and my bed, driven my friends and family away.. It has set me and many thousands like me up for ridicule and derision... WHY? Because no one can see or quantify the severe electrical neuropathy that ARC dishes out without mercy. Many of our doctors, who do not know of, or not know how to spot ARC, look at our films for disc anomalies, or bone problems, and see absolutely nothing.

That is because no one teaches anesthesiologists, radiologists, or surgeons how to detect ARC. That gap in knowledge must change. One very curious aspect is, in order to get care at many pain clinics here in the states, ARC patients MUST submit to continuing epidural steroid shots, in order to obtain pain management. This trap means we cannot get medication without being exposed to even further ARC involvement, lest we be tossed out the door for refusing further ESI, which have been repeatedly implicated as a possible cause of ARC FBSS. What an irony. This compromise in care must be addressed.

Arachnoiditis is a profoundly devastating condition that destroys careers, utterly decimates every aspect of health, shatters relationships, wrecks marriages, ruins finances, and undermines social ties. Worse yet, IT DESTROYS the SOUL.... WHY? WE have no cures, no treatments, no research into this condition, whatsoever. ARC is sheer hopeless hell.

You see, for the majority of spine patients, 60-70-80%, surgery and epidurals may work just fine. But what of the other 20-30%?? We are the unmentionables, the forgotten statistics, with no voice. Especially as this is primarily an iatrogenic condition. However, once ARC happens, our doctors often drop us like a hot potato. We are told our condition, the scarring, clumping, adhering of the spinal cord and nerves, does not exist or is too controversial to treat. ARCs existence is vastly denied.

Some of our doctors blame US for bringing this condition upon ourselves, We are often given some of the most hateful demeaning lectures, by ERs and anesthesiologists accusing us of being drug addicts, or psychosomatic malingerers, with behavior problems. ARC is no behavior problem! It is an insidious spinal CORD INJURY, not some mental aberration. We are often treated with gross disrespect. You will see a number of testimonies corroborating that experience in the workshop sessions manual. CAN YOU IMAGINE HEART DOCTORS TELLING THEIR PATIENTS THEY CANNOT OPERATE ON THEM BECAUSE THEIR HEART CONDITIONS ARE 'TOO CONTROVERSIAL?'

I urge everyone here to view this video CD from Dr Burton, on the rampant progression of the ARC lesions in the dura, based on his operative and cadaver studies (holding CD up).. This might give you an idea how destructive this little "Radiological artifact" really is on the spinal cord. In my opinion, and many of these patients experiences, our medical system is neither capable, nor interested in many cases, of dealing with this medical catastrophe of ARC/FBSS.

I am here to plead with you to help us patients change that disinterest and neglect!" I have an array of multi-pronged, long and short-term recommendations for a strategic plan to correct this situation. A problem cannot be addressed and fixed, unless it is acknowledged that the problem ACTUALLY EXISTS. We are presently in a state of denial, worldwide, that ARC is even an issue.

I HOPE I HAVE GIVEN YOU A BIT OF AN INSIGHT INTO WHAT LIFE IS LIKE FOR AN ARC PATIENT. I am here to urge you to fund immediate research, and help us in an urgent quest for cures, and viable treatment options we do not presently have. Thank you very much for your time and interest. I have a two page list of recommendations for changes and strategies for A.R.C. that I recommend everyone read. It appears later in the presentation…

RECOMMENDATIONS

SHORT TERM STRATEGY: EDUCATION AND PREVENTION

• ESTABLISH A CENTER OR THINK-TANK OF TOP MEDICAL PERSONNEL WITH PRESENT A.R.C. INVESTIGATORS, AND EXCHANGE ALL INFORMATION IMMEDIATELY
  
• ESTABLISH A CENTER FOR A.R.C. AND GET OUR BEST SCIENTISTS STUDYING EVERY ASPECT OF THIS CATASTROPHE
  
• WE NEED FULL DISCLOSURE AND INFORMED CONSENT FOR EVERY PATIENT, AND WE NEED THAT NOW!
• COORDINATE THE NEUROSPECIALISTS ON A.R.C. WITH ALL OF THE BEST MEDICAL SCHOOLS, JOHNS HOPKINS, HARVARD, COLUMBIA, CORNELL, YALE, UNIV OF VA., STANFORD, CASE WESTERN RESERVE, VANDERBILT UNIV MEDICAL SCHOOL, BARROW, ETC. AND GET THEM TEACHING MEDICAL STUDENTS AND TEACHERS ABOUT A.R.C. CAUSES, AND SYMPTOMS, EDUCATING THOUSANDS OF PRESENT AND FUTURE PHYSICIANS OF ALL TYPES ABOUT ARC/FBSS

• WE NEED TO TRAIN RADIOLOGISTS HOW TO IDENTIFY A.R.C. .. MANY MISS IT RIGHT UNDER THEIR NOSES. SAME WITH ANESTHESIOLOGISTS. IF A RADIOLOGIST MISSES A.R.C OUR DOCTORS ASSUME NOTHING IS WRONG!
  
• EVENTUALLY COORIDINATE THESE LEARNING CENTERS INTO SATELLITE CENTERS, WHERE THESE DOCTORS CAN TEACH THOUSANDS OF OTHER DRS AROUND THE COUNTRY TO IMMEDIATELY EDUCATE ORTHOPEDISTS, NEUROLOGISTS, NEUROSURGEONS, INTERNISTS,
  ABOUT ARC/FBSS AND ELIMINATE THE CONE OF SILENCE

LONG TERM STRATEGIES: A.R.C. RESEARCH CENTER

• WE NEED A 200 MILLION DOLLAR STATE OF THE ART RESEARCH FACILITY AS OUTLINED BELOW, TO FIND EVERY CAUSE OF A.R.C. AND SEARCH FOR CURES
  
• WE NEED FAR SAFER CONTRAST MATERIALS AND EPIDURAL MEDIA IN THE LONG RUN
  
• WE SHOULD REEVALUATE THE RAMPANT USE OF CONTRAST DYES FOR EVERY SMALL PROCEDURE AND RAMPANT OVERUSE OF EPIDURAL STEROIDS. THEY ARE GIVEN WITHOUT LIMITS, EVEN TO ARC PATIENTS
  
• WE DO OWE IT TO THE SUFFERERS TO EXPLORE THE USE OF STEM CELLS IF REGENERATIVE MULTIPOTENT OR TOTIPOTENT MERISTEM STEM, CELLS COULD BE EFFECTIVELY REPROGRAMMED TO REPAIR ARC BASED SCI. DAMAGES AND OR ADHESIONS TO THE CORD.
  ULTIMATELY, I propose a massive, dedicated research facility focused solely on ARC/FBSS either a stand-alone, along the lines of the Miami Project, or a division of the Miami Project, with dozens of Ads, PhDs, scientists, neurologists, neurosurgeons, and researches, studying every possible aspect of ARC/FBSS, with molecular and cellular biologists, neural regen specialists, axonal regen, neurophysiologists, neurobiologists, auto-transplantation experts, stem cell specialists, radiologists, anesthesiologists, etc. All studying ARC from every conceivable aspect, and cross-checking each others' work, with the finest electron microscopes, state of the art axial and sagittal MRI and CT equipment.

 

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Conversation with Bob Yant
Board of Directors of the Christopher Reeve Paralysis Foundation, Paraplegic for 23 years
August 18, 2004

I spoke with Bob Yant on Wednesday, August 18 after following up with Ronald Gilbert, Chair of the Foundation for Spinal Cord Injury Prevention, Care and Cure.

When I originally contacted Bob via e-mail, I described the study and included the I-pager to give him some background. When I spoke with him directly, he said that he read the I-pager and had reviewed the website. His thoughts are as follows:
California has the largest number of neuroscientists then any other state (both overall and probably per capita) and only received $1 million in funds from the state.
There is a dearth of qualified researchers in NYS
One way to help improve the current NYS program is to encourage researchers in other states to collaborate with NYS researchers. He gave the example of Marie Filbin whose research focused on the neurotransmitter cAMP - the "biggest breakthrough in the past 5 years" - and that she has collaborated with both Tuszynski and Bunge. Perhaps this is something that can occur with other researchers
UC-Irvine has a CRPF - funded animal lab - a core facility - in which the Gillespie lab maintains SCI animal models and the 8 consortium members bring trainees over to do experiments. New York state could set up a core facility similar to the UCI core facility.
The CRPF has a translational research program and a gene chip program (the latter is skin to Filbin's own work)
The CRPF also has a clinical trials network in which 5 labs - in 2 years - will develop centers for clinical trials. It costs $1 million/year or $200-250K/lab/year. Perhaps NYS institutions could be added.
Noted that NYS should recruit PIs from other states - as in the case of John McDonald who was at Washington University but has since moved to Johns Hopkins University
If you have money, you should lure them in.

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'GOD - GIVEN' OR 'MAN - MADE'
By Derek, member of The Australian Institute of Welfare and Community Workers Inc, founder of CIAASA, CIAA sufferer

FOR THE PAST 50 YEARS 100s OF MILLIONS OF HUMAN BEINGS WITHIN 107 COUNTRIES HAVE BEEN EXPOSED TO A 'TOO TOXIC' CHEMICAL DYE 'MIX' OF HYDROCHLORIC ACID, SULPHURIC ACID, BENZYNE AND POTASSIUM PREMANGANATE, (WASTE WATER FROM KODAK FILM PROCESSING)
'WITHIN AMERICA THE FIGURE MAYBE AS HIGH AS 20 MILLION'

THIS EXPOSURE BYWAY OF AN X-RAY INJECTION HAS CAUSED PROGRESSIVE NEUROLOGICAL/PHYSICAL DISEASE WITH UP TO 80 SECONDARY MEDICAL CONDITIONS DEVELOPING 'LONG-TERM'. (NIH 1998)
TODAY, WORLD CALLS ON THE AMERICAN INSTITUTE OF MEDICINE TO RECOMMEND MOST 'URGENT' FUNDING INTO THIS 'IOPHENDYLATE' MEDICALLY INDUCED DISEASE.

Today, in more than 107 countries including America hundred's of millions of human beings are suffering horrendous spinal pain and disabilities (neurological and physical) due to being exposed to a 'too toxic' positive ionic radiographic diagnostic agent that remained on the world market for almost 50 years. (1944-1992) My credentials as an Australian Community Welfare Worker and medical researcher and my past 11 years of worldwide research into this 'issue' its cause and by whom, is for another time.
However, my short brief today as asked by many Organization in America, Great Britain and elsewhere in the world is to draw to the attention of the IOM Committee and those assembled at this upcoming Conference of how such has been allowed to happen.
It is also my understanding that CIAA sufferers in America are sending in their own 'story' to the IOM Committee and those in attendance, I could do likewise, but believed a much broader 'understanding' of how much as such has happened can only help the Committee understand the desperate need for funding for CIAA.
Please see attachments.
In doing, hopefully it will create not only a further understanding of the History and what is CIAA but further promote the 'need' for much urgent funding and related research by the funding body and that of the American Government into this 'man-made' iatrogenic progressive disease.
I intended to not try and share my 10 years of worldwide research with you at this time, but give you a brief factual account that has led us here today.
Such is in point form and at the bottom I have provided a short collection of specific links to supportive information now on the 'public record'.

1895 Roentgen's discovery of X-rays
1914 Dandy and his use of air as an agent in diagnostic imagery in Neurological and myelographic x-ray. But, quality, poor visually.
1921 Lipiodol (from France) introduced as an radiographic agent (a dye) for diagnostic imagery in Neurological and myelographic x-ray and became the most used diagnostic radiographic imaging agent in the western world.
1922 - 1925 Lipiodol found to cause chemically induced adhesive arachnoiditis (CIAA), its use ceased, and a return to air took place until an 'inert' substance could be found to replace air.
1939 WW2 commenced
1940 - 1944 Lack of Lipiodol stock available (due to occupation of France, by Germany) another substance was urgently needed
1941 The British Therapeutic Research Corporation was established and Glaxo Lab was admitted as a member.
1941 - 1943 Allies (by their MOD representative Harry Jephcott Adviser on Manufactured Foods to the ministry) approached Eastman Kodak, Harry Jephcott at that time was Joseph Nathan & Co (to become Glaxo Lab) organic chemist, to help them.
1944 Iophendylate and its USA marketing brand 'Pantopaque' obtained a NDa License by misleading the FDA by NOT providing animal and human clinical trials that showed it to be 'too toxic' for human clinical use.
1944 - 1969 Kodak did not abide FDA requirements (under Section 505 J etc.) to provide adverse reactions reported to them or annual reports as required by ALL other NDA holders.
1945 Joseph Nathan & Co by obtaining a copy of the formula of Pantopaque (Iophendylate) developed it and also commenced marketing it under the name 'Myodil'. In all 23 Proprietary preparations (Brands) were sold and used by Kodak (through their Manufacturer of 'Right' Lafayette Pharmacal) and the other 21 Proprietary preparations. (Brands sold worldwide)
1944 - 1987 (with a 5 years shelf life) Iophendylate was sold throughout the western world. (107 countries known, as of to day) destroying the lives of tens millions of those that survived the exposure to Iophendylate.
1944 - 1992 hundreds of thousands of human beings have also died because of the exposure to this 'too toxic' radiographic substance. A too toxic radiographic chemical dye (waste water from film processing) that consisted of Hydrochloric acid, Sulphuric acid, Benzene and Potassium Permanganate and other solvents not forgetting a 30.6% Iodine base. Today, 80 medical conditions secondary to exposure have been documented as 'cause - effect' of injection is noted. (NIH 1998)

Today, millions of people injected with this 'too toxic' substance not only suffer the consequences of such, but due to its toxic nature has led them to suffer multiple secondary medical conditions. Chemically induced Adhesive Arachnoiditis and its relationship to this injected substance is known to the neurological and radiological profession but not to 99% of those experiencing its effect, the patients.
This lack of shared information has led to much sufferance and it is hoped that today will be the start to open interaction and research into its management and future possible 'cure'. The political reasons for the lack of support to those exposed is not for this brief, but plays an intrinsic part in the lack of funding and research. Its time, such was addressed and in so doing, a movement forward in shared knowledge and understanding will start.
Derek

Points of reference:
http://www.burtonreport.com/Document/ParisianPantopaque.pdf
http://www.burtonreport.com/InfSpine/AdhesArachHomePage.htm
http://www.aboutarachnoiditis.org
http://www.arachnoiditistrust.org
http://www.arachnoiditis.org.au (A website that addresses this issue by providing historical supportive documentation and MJAs)
http://www.burtonreport.com

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