By Eugene B. Richardson, M.Div., EdM, MS, President of the Network for Neuropathy Support, Inc.
This means that the veteran exposed to Agent Orange, who can prove that they were stationed in Vietnam or Korea, who had symptoms at least 10% disabling as defined by the VA within one year after exposure, would be approved for service connected compensation and treatment without having to prove the connection between Agent Orange and Chronic Peripheral Neuropathy.
PERSONAL RELIVANCE: I am a retired senior career officer with 27 years’ active military service, who is 100% VA disabled due to AO exposure and Peripheral Neuropathy, with service in Vietnam (67-68), with Peripheral Neuropathy known as Chronic Inflammatory Demyelinating Polyneuropathy, Autonomic Neuropathy and Progressive Polyneuropathy with a monoclonal protein followed closely for any “smoldering” melanoma as a result of Agent Orange exposure.
CONCLUSION: A more reasonable criterion would have been to simply recognize the Chronic Peripheral Neuropathies as due to Agent Orange exposure when no other cause can be establish for the veterans symptoms. The exceptions would be the recognition of chronic peripheral neuropathy as secondary to cancer, diabetes, and the treatment of the cancers and for any disease recognized as presumptive to AO exposure by the VA.
HISTORICAL BACKGROUNG and DISCUSSION OF VA NEW POSITION:
Due to the “IOM/VA claimed knowledge and scientific evidence” which established the 2004 “acute and sub-acute neuropathies, it took over six years to prove my case to the VA. With tons of punishing duplicate paper work from VA lawyers, I prevailed while fighting for my very life, unable to function, with insane undiagnosed symptoms for over four decades. Then because of the limits of medicine I had to fight to get the IVIg infusions (gamma globulin) every 21 days to stay alive since 2004. I am now severely disabled due to the failure to even recognize the vast and varying individualized symptoms of neuropathy from 1968 to 2004.
This failure to diagnose or treat peripheral neuropathy for over four decades was due to the lack of knowledge in the clinical diagnosis and treatment of neuropathy let alone the lack of understanding of neuropathy and the need for new research.
Now the IOM/VA uses the same clinical knowledge and has all the scientific evidence needed to establish the “early onset criteria” and the “10% disabling criteria during the first year after exposure” back in the 60’s and 70’s.
Previously, the arbitrary time frames for acute and subacute neuropathy established by the IOM/VA have never been supported by competent medical science anywhere in medical literature. The progression, type, symptoms, of peripheral neuropathy within individuals is highly individualized for many reasons.
Dr. Norman Latov, an expert in the neuropathies at the Weill Medical College of Cornell University when speaking about the immune mediated neuropathies and individual susceptibility, noted the genetic makeup of the individual plays an important role. See: Norman Latov, M.D., PhD Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop, American Academy of Neurology/Demos, New York 2006
Dr. Thomas H. Brannagan, an expert in the neuropathies at Columbia University, noted in 2010 in the DVD production Coping with Chronic Neuropathy, that “central to this presentation are the limits of medicine and poor public attitudes toward neuropathy.” Continuing Dr. Brannagan states that, “For decades we were limited in our understanding of the many types of neuropathy and our ability to diagnose them and therefore often failed to treat this disease before it turned more serious and disabling.” See: DVD production Coping with Chronic Neuropathy, Executive Producer LTC Eugene B Richardson, USA (Ret)Network for Neuropathy Support, Inc., dba Neuropathy Support Network, 2010 at http://www.neuropathysupportnetwork.org
The first legally arbitrary limited medically unsubstantiated definition of the type of neuropathy associated with Agent Orange (acute and sub-acute) was established by the IOM and the VA in 2004. Now the IOM and VA based on the same research and limited clinical knowledge and the scientific evidence, now want us to believe they have the knowledge/research to support this new definition. (i.e. early onset while denying “delayed onset” neuropathies “and the criteria of “10% disabling in the first year”) The fact is science is just now beginning to understand these immune mediated neuropathies and their effects via the immune system on genetically susceptible veterans with all the other individual variables involved.
The IOM and VA allow for cancers and other illnesses with no requirement that they manifest themselves within one year of exposure (delayed onset) at 10% disabling. Yet these illnesses from AO, based on the 2007 research at the University of Pennsylvania are more likely associated with the damage of the toxin to the basic cellular structure of the human body, affecting the body via the same immune system involved in these immune mediated neuropathies.
The prevailing view of Peripheral Neuropathy, that it is really not to be taken seriously, is influencing scientific opinion and conclusions. Thus the more serious illness, i.e. cancer, does not require proof within the first year following exposure at the 10% disabling level.
These poor attitudes are seen throughout medical literature and embedded in medical thinking at the research and clinical levels.
For decades many neurologists, based on old research (not the Agent Orange research noted in the University of Pennsylvania 2007), claimed that the toxic neuropathies resolve after you are removed from exposure. It was in 2010 that the IOM noted that these neuropathies from the AO toxin are NOT necessarily transient as assumed.
In 1990 one of these neurological experts on the neuropathies stood before us and said (I have him tape) that Agent Orange was so harmless that he would be willing to live and sleep in it.
We have not even begun to understand the impact of the toxic neuropathies (especially Agent Orange) via the immune system from this powerful toxin called Agent Orange. The research at the University of Pennsylvania (reported in IOM minutes in December 2007) showed this was a dangerous toxin at any level and damaged the basic cell of the human body.
Peripheral Neuropathy can be a mild nuisance or a living hell and immune mediated neuropathies can be deadly if not treated. Sort of like some types of cancer are more devastating than others or why some people have neuropathy from diabetes or cancer and others do not or some smokers die with lung cancer and others do not. Why? Genetics and hundreds of variables are the answers.
Now the IOM and the VA, with more superior knowledge and information, using the Ranch Hand Study and the AF Study as the baseline gold standards, which have no basis in good science (* see next paragraph) the IOM and the VA know for sure that the neuropathy is “early onset as defined in this proposal” and beyond that “at least 10% disabling” during “the first year of exposure” for a disease we could not even diagnose in the 1960’s or 1970’s.
- The Provost of Research, Dean of the Graduate School of Kansas State and President of Kansas State University Research Foundation, Dr. R.W. Trewyn, PhD (in cellular and molecular biology) testified on March 15, 2000 before a congressional committee, that the Operation Ranch Hand Study, Army Chemical Corp personnel study in Vietnam and the Air Force Study were so scientifically flawed on every count, that they are basically useless to science and had no validity or reliability to prove anything. He noted that the VA should give every benefit of doubt to the veteran exposed to Agent Orange. Of course this never happened and this testimony by this expert on research and biology is buried under piles of paper along with the veterans who died without help or promised support. These flawed studies have been the baseline gold standard for the IOM and VA decisions for years until the research at the University of Pennsylvania, School of Veterinarian Medicine in 2007.
The facts are that many veterans never reported the earlier mild symptoms of Peripheral Neuropathy and if they did, medical personnel did not know what they were looking at to provide a diagnosis or even take time to write such strange symptoms in the veterans’ medical records, let alone the many medical records that were lost or destroyed by the VA (a matter of record).
Previously veterans who had type two diabetes could file a claim under the presumed connection between diabetes and Agent Orange and file a claim for neuropathy secondary to diabetes or cancer (or the cancer treatments with chemo or radiation) without having to prove the connection. Unfortunately, many claims adjusters had no knowledge of these types or causes of neuropathy and disallowed claims based on the acute and subacute rule.
Whereas I support the change as proposed as progress, albeit slow (it took four years to acknowledge what was known and published in 2010 regarding the non-transitory nature of Peripheral Neuropathy), these clinical limitations established for Peripheral Neuropathy and not for the other diseases acknowledged by the IOM and VA as presumptive from Agent Orange exposure, are without any sound basis in medical science or clinical reality, just as was the arbitrary criteria established for “acute and subacute peripheral neuropathy” in 2004.
These criteria are nothing more than a means for VA lawyers to continue the denials and force very ill veterans to prove their case with mountains of paper work and inapt boilerplate responses with paper work added to paper work. In just reading the legally verbose language of this notice in the Federal Register, image a veteran’s confusion in receiving a similar response from the VA using similar legally verbose language? The whole process over the damage of Agent Orange done to veterans is designed for the veteran to give up and go away.
God bless our courageous veterans who suffer so long without help or support and God bless the Country they faithfully served.