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Thursday, October 28, 2010

Boston University Health Law Conference Focuses on Gulf War, Post-9/11 Veterans

 

Coming Home Injured: Care and Advocacy for America’s Veterans


Seventh Annual Health Law Pike Conference

Friday, October 29, 2010

Boston University School of Law, Room 1270
765 Commonwealth Ave, Boston, MA 02215

pikeOne in four veterans of the 1991 Gulf War suffer from an illness caused by exposure to toxic chemicals, according to a BUSPH-based research panel. Almost two decades after the war ended, however, no effective treatments have been found. This year's Pike Conference will explore the post-Gulf War experience of veterans seeking medical help, the problems encountered and concrete advocacy steps that can be taken to improve the quality of care.

Boston University Schools of Law and Public Health will sponsor a one-day forum, Coming Home Injured: Care and Advocacy for America's Veterans. Scientific, medical, and legal experts will contribute to framing the issues, but the primary emphasis will be on the experience and suggestions for action of the veterans themselves.

The annual Pike Conference is held to honor Neal Pike, a BU School of Law graduate, distinguished lawyer, and lifelong advocate for individuals with disabilities.

The event is free and open to the public.

 

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Conference Schedule

8:45 a.m. Welcome
Deans of School of Law and School of Public Health ‘

9:00 a.m. Conference Overview
Care of Veterans in US since World War II

Veterans of the First Gulf War

9:10 a.m. - Gulf War Illness: Documenting Health Effects of Serving in the Gulf War
Roberta F. White, School of Public Health

10:00 a.m. Commentary & Audience Discussion
Wendy Mariner, School of Public Health/Law

10:30 a.m.- 10:45 a.m.  Break

10:45 a.m. Advocacy for Gulf War Veterans: Getting Them the Care They Need (and Deserve).  Panel:
Anthony Hardie, Research Advisory Committee on Gulf War Illness

Paul Sullivan, Veterans for Common Sense

12:00 p.m. Presentation of the Pike Prize

12:15 p.m. – 1:30 p.m.  Lunch

Veterans of Iraq and Afghanistan (Post-9/11)

1:30 p.m.  Diagnosing and Treating Post Traumatic Stress Disorder and Traumatic Brain Injury
Michael Grodin, School of Public Health

2:15 p.m.  Research (and Prevention) of Suicide in the Military (and after Discharge)
George Annas, School of Public Health/Law

2:45 p.m. Commentary & Audience Discussion, led by Leonard Glantz, School of Public Health/Law

3:30 p.m. Advocacy for Post-9/11 Veterans: Where do we go from here?

4:30 p.m.  Wrap-up and plans for future actions

 

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Click here to view the Conference Brochure and Schedule (PDF)

Friday, October 22, 2010

VA Breaks Promises on Gulf War Veterans Data Report

 

VA officials Can Expect Agitated Veterans at November 1-2 RAC meetings in Boston if Completed Report is Not Public by then

Written by Anthony Hardie, 91outcomes.com

(91outcomes.com) – Gulf War veterans and many of the Institute of Medicine-reported 250,000 veterans suffering from Gulf War Illness (Gulf War Syndrome) have found encouragement at the new VA, with an internal Task Force and lengthy Task Force report and task list, a new internal Gulf War Steering Committee, and redone research proposal requests that specifically exclude stress or psychiatric studies and require a focus on treatments that would improve the health and lives of ill Gulf War veterans.

However, as noted by the VA’s Advisory Committee on Gulf War Veterans (ACGWV) chairman Charles Cragin, good decisions cannot be made without good data.   In its written final report, Cragin’s committee called for prompt restoration of Gulf War Veterans Information System (GWVIS) reports to provide that data.

The email chain shown below, submitted by longtime Gulf War veteran advocate Kirt Love, who requested and succeeded in seeing created the ACGWV, is regarding repeated promises, broken again and again by current VA officials regarding the GWVIS, which provide critically important data about Gulf War veterans.

On the positive side, it is good news to hear that the new report is a, “100+ page report contains a lot more statistics than the old GWVIS,” and, “The goal of the new report is to provide a more integrated and consistent set of data,” than the old GWVIS reports originally developed by legendary Gulf War veteran advocate and former VA data employee Paul Sullivan

On the negative side, however, “As such, it is taking [VA] a lot more time to validate and proof than anticipated,” says VA’s top data official.

The timeline of  VA’s newest set of broken promises, most made by VA Senior Executive Service official William Kane,  is as follows:

  • February 2009:  As a member of VA’s now-completed Gulf War Veterans’ Advisory Committee, Love requested the new GWVIS report, which was expected by committee members, the RAC, and Gulf War veterans and advocates in a timely manner.
  • February 25, 2010:  Love again requests an update, after a year has gone by.  Nearly a week later, a VA official responds to tell Love they plan on “publishing updated GWVIS reports by the end of June 2010.  We plan to publish quarterly after that.”
  • August 11, 2010.  With the June 2010 deadline now long past, Love contacts VA again.  The response from the VA official:  We have a   “targeted completion date of the end of September.”
  • September 24, 2010.  Love asks VA if the “end of September” date is still valid. The official responds saying, “It will probably be more like early October.”
  • October 18, 2010.   With the “end of September” and “early October” deadlines now past, Love contacts VA yet again.    Three days later, a top VA data official responds, “I am expecting the remaining validation work and concurrence process to take approximately 2 weeks,” meaning early November at the earliest.
  • October 21, 2010.  A justifiably frustrated Love publishes the email chain of more broken promises at Gulflink. 

It should be noted that on November 1-2, 2010, the Research Advisory Committee on Gulf War Veterans’ Illnesses will meet in Boston, Mass.  VA officials should expect justifiably pointed questions from highly agitated Gulf War veteran members and other advocates if the very long overdue GWVIS has not been finalized and publicly released before that time.

The full text of Kirt Love’s email chain is available below and from Love’s “gulflink” Yahoo group, at:  http://groups.yahoo.com/group/gulflink/message/11977

MORE INFORMATION: 

----------------------

From: Kirt Love [mailto:kirt@gulflink.org]
Sent: Thursday, February 25, 2010 11:03 AM
To: Kane, William (SES), VBAVACO
Subject: Fw: February 2008 vs August 2008 GWVIS report totals

Mr. Kane
My name is Kirt P. Love, disabled veteran. Founder and member
of the VA ACGWV committee that concluded in September 2009.
Short and sweet, I sent a email into VBA requesting a answer about
discrepancies in the GWVIS report released Feb 2009. The numbers
compared flaws from the Feb 2008 report to the Aug 2008 report.
In May I pushed harder and Thomas Kniffen got involved. There
was a subcommittee meeting of the ACGWV with VBA on June
30th to discuss the state of report errors. I attended.
Its been 8 months since that meeting and one year since I sent
the original email into VA on this topic. I understand that this has
been in debate for some time over coding issues at VBA.
Will there be a timeline for the updated reports being released?
Will the 2009 report coincide with this?
Will the VBA website post this information with a explanation
of what transpired?
http://www.vba.va.gov/REPORTS/gwvis/index.asp
I imagine some of this will be shared with Jim Binns at the RAC
meeting next week. As I share information with Jim on what took
place with my committee.
Thank you for your time and attention.
                                                Sincerely
                                                Kirt P. Love
                                                Director, DSBR
                                                        former member of the ACGWV committee

 

----------------------

----- Original Message -----
From: Kane, William (SES), VBAVACO
To: kirt@gulflink.org
Sent: Tuesday, March 02, 2010 11:39 AM
Subject: RE: February 2008 vs August 2008 GWVIS report totals

    In case you were not present at the 2 Mar RACGWVI meeting, we committed to a goal of publishing updated GWVIS reports by the end of June 2010.  We plan to publish quarterly after that.  As before, we'll post the reports on our website.  Thanks for your interest in the matter.

-------------------

From: Kirt Love <kirt@gulflink.org>
To: Kane, William (SES), VBAVACO
Sent: Wed Aug 11 11:24:27 2010
Subject: Re: February 2008 vs August 2008 GWVIS report totals

Mr. William
It is August 11th 2010, it has been 14 months since
the ACGWV met with VBA about the GWVIS report
issues.
The March RAC meeting you promised a June delivery
date for the updated GWVIS. It is now mid August
and not even a explanation.
Is there a publication date?
                                            Sincerely
                                            Kirt P. Love
                                            Director, DSBR
                                                Former member VA ACGWV committee

--------------

----- Original Message -----
From: Kane, William (SES), VBAVACO
To: kirt@gulflink.org
Sent: Wednesday, August 11, 2010 11:25 AM
Subject: Re: February 2008 vs August 2008 GWVIS report totals


Thanks for your follow-up note.

It was decided that rather than resuming publication of the GWVIS report, a new report would be generated by the Office of Policy and Planning (OPP). The goal of the new report is to provide a more integrated and consistent set of data.

We are currently working with OPP and other VA offices to generate the report with a targeted completion date of the end of September.

Thanks again for your interest.

---------

 

From: Kirt Love [mailto:kirt@gulflink.org]
Sent: Friday, September 24, 2010 1:19 PM
To: Kane, William (SES), VBAVACO
Subject: Re: February 2008 vs August 2008 GWVIS report totals

Is this still on for the end of September?
                                Sincerely
                                Kirt P. Love
                                Director, DSBR

---------------------

----- Original Message -----
From: Kane, William (SES), VBAVACO
To: kirt@gulflink.org
Sent: Friday, September 24, 2010 1:15 PM
Subject: RE: February 2008 vs August 2008 GWVIS report totals

    It will probably be more like early October.  The draft report was prepared and is being reviewed internally with comments due on 9/28.  Depending on the nature of the comments and the time it takes for corrections, the release could be later than 30 September.

-------------------------

From: Kirt Love [mailto:kirt@gulflink.org]
Sent: Monday, October 18, 2010 12:48 PM
To: Kane, William (SES), VBAVACO
Subject: Re: February 2008 vs August 2008 GWVIS report totals

Its now mid October, is this about to go out?
                                        Sincerely
                                        Kirt P. Love
                                        Director, DSBR

 

----------------------

----- Original Message -----
From: Tran, Dat (SES) VACO
To: kirt@gulflink.org
Sent: Thursday, October 21, 2010 4:29 PM
Subject: RE: February 2008 vs August 2008 GWVIS report totals

Kirt:
VA analysts are still going through the draft report to validate all the statistics and proof all the narratives. This 100+ page report contains a lot more statistics than the old GWVIS. As such, it is taking us a lot more time to validate and proof than anticipated.
Once the validation is completed, we will circulate the report internally for final review and concurrence. I am expecting the remaining validation work and concurrence process to take approximately 2 weeks. Please feel free to contact me if you have any questions.  Hope all is well with you. As soon as the report is concurred internally for release, I’ll let you know.
Best,
Dat

 

------------------------------

---------- Forwarded message ----------
From: Kirt Love <kirt@gulflink.org>
Date: Thu, Oct 21, 2010 at 10:05 PM
Subject: Fw: February 2008 vs August 2008 GWVIS report totals - new GWVIS report
To: Gulflink <gulflink@yahoogroups.com>
Cc: Jim Binns, rac@bu.edu, ANTHONY HARDIE,

Dear Readers
See what I meant. VA knows that to make this go
away they need this report to hit in November. Congress
is out for the holiday season and nothing gets going
again until March 2011. They want this to go out silent
and be ignored as long as possible. The last year
is the hint based on there past track record.
I told you all they would continue to stall. I told you
that they wouldnt make the September, and then
October deadlines.
There is even conflicting internal information on the
status of this report. As another department person
had said this was already in concurrence. Now Dat
is saying its back in review.
I have little faith the report will have teeth. But, it is
also a reflection on Gingrich and his task force much
less the bad lip my committee gave it. Just have
to see, as the word "Narratives" has gotten my
attention. That usually means some at least some
investigation work requiring oration.
Well, you wont see this anywhere else but "Gulflink".
                                            Sincerely
                                            Kirt P. Love
                                            Director, DSBR

Wednesday, October 20, 2010

ATSDR Launches National ALS Registry

 

(Centers for Disease Control & Prevention) - In a groundbreaking step to learn more about Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig's disease, the federal Agency for Toxic Substances and Disease Registry (ATSDR) has launched the National ALS Registry.

The registry is a national database that provides an opportunity to better understand one of the most common neuromuscular diseases worldwide, affecting people of all races and ethnic backgrounds – especially between the ages of 55 and 75.

The registry will gather and organize information about potential and known risk factors and symptoms of ALS. The information can help researchers evaluate shared risk factors common among patients, such as heredity or possible environmental exposures, and help estimate the number of ALS cases diagnosed each year.

"A National ALS Registry provides researchers and physicians with more thorough information about ALS that will further empower them in the fight to treat and possibly prevent this disease," said Christopher Portier, Ph.D., director of ATSDR. "Today, the cause or causes of ALS are largely unknown; this is the first nation-wide registry created to enhance our knowledge about this disease."

ALS causes human nerve cells to stop functioning and eventually die. A diagnosis of the disease leads to muscle weakness, paralysis, and eventually death. No one knows how many people are living with ALS, though scientists estimate 30,000 people in the United States have the disease.

Each entry in the registry includes a patient health history, work experiences, and family medical histories. Individual patient information on the registry will be confidential and will not be publicly released. Patients choosing to participate can visit www.cdc.gov/als to register.

"The more people participate in the registry, the more comprehensive and diverse the data will be to help researchers and physicians better understand this disease," said Kevin Horton, Dr.P.H., ATSDR's ALS program administrator. "In addition, the registry provides a means to share information about research findings and clinical trials."

For more information, visit www.cdc.gov/als. The ATSDR website is www.atsdr.cdc.gov.

Editor's Note: The Agency for Toxic Substance and Disease Registry, ATSDR, is a federal public health agency of the U.S. Department of Health and Human Services. Its mission is to prevent harmful exposures and diseases related to toxic substances. It is commonly referred to as CDC's sister agency.

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U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Monday, October 18, 2010

Gulf War Presumptive Chronic Pain Condition and Costochondritis: Pain the Chest and Ribs

From Fibromyalgia & CFS Blog

Adrienne Dellwo  By Adrienne Dellwo, Fibromyalgia & Chronic Fatigue Guide

-----------------------------------------------------

Do you get a horrible burning pain in your chest and ribcage? Have you thought you were having a heart attack, only to have doctors say your heart is fine? If so, you may have costochondritis.

This was actually my first fibromyalgia-related pain. When it hit, I ended up in the ER with a suspected heart attack. The doctor ruled out anything cardiac or intestinal, then poked a few spots where my ribs and breastbone come together. That hurt like crazy, so he said I had an injury there and that it would heal in a few days.

Of course, it didn't heal. It comes and goes, causing the worst of my pains and a lump on my breast bone that looks like half a golf ball. In the medical community, it's a debate as to whether this is costochondritis, somehow made chronic by fibromyalgia, or just another symptom of fibromyalgia that mimics costochonritis. Personally, I think it's a separate condition. My chest pain is accompanied by a lump on my breastbone that gets better with ice and anti-inflammatories. That doesn't sound like fibromyalgia to me!

Note: If you start getting chest pain, don't assume it's costochondritis or fibromyalgia! Always treat chest pain as a possible heart problem and get it checked out immediately.

Learn more about costochondritis, its symptoms, how it's diagnosed, and how you can treat it:

Do you have costochondritis? How bad is it? Do you think it's part of FMS or a separate condition? Leave your comments below!

Learn more or join the conversation!

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New Study: Gulf War Presumptive Pain Condition Overlaps with Restless Legs Syndrome

Many People With Fibromyalgia May Also Have Restless Legs Syndrome and Poor Sleep Quality, New Study Finds

By Bill Hendrick, WebMD Health News; Reviewed by Laura J. Martin, MD

Oct. 15, 2010 -- People who have fibromyalgia are much more likely to also have restless legs syndrome, according to a new study. Restless legs syndrome is a baffling disorder that causes uncomfortable sensations in the legs and/or the urge to move the legs.

The study, published in the Oct. 15 issue of the Journal of Clinical Sleep Medicine, found that 33% of people with fibromyalgia also had restless legs syndrome, compared to 3.1% who did not have fibromyalgia.

The findings are important because sleep disruption caused by restless legs syndrome may exacerbate the symptoms of fibromyalgia, researchers say.

But the good news, they say, is that restless legs syndrome can be treated and may improve the quality of life of people who have fibromyalgia.

Fibromyalgia affects 2%-4% of the U.S. population and is more common in women, according to the American College of Rheumatology.

A Visual Guide to Fibromyalgia

Sleep Disturbances Are Common in Fibromyalgia Patients

“Sleep disruption is common in fibromyalgia and often difficult to treat,” Nathaniel F. Watson, MD, one of the authors and an associate professor of neurology at the University of Washington in Seattle, says in a news release. “It is apparent from our study that a substantial portion of sleep disruption in fibromyalgia is due to restless legs syndrome.”

The study involved 172 people with fibromyalgia, 93% of whom were women. They were compared with 63 people who were free of pain and fatigue. Those in the control group were younger, with a mean age of 41, compared to 50 for those with fibromyalgia.

A measure of sleep quality showed that problems with sleeping were more severe among people with fibromyalgia and restless legs syndrome.

The researchers conclude that a substantial portion of sleep disturbance found in patients with fibromyalgia may be related to restless legs syndrome.

They suggest that doctors routinely ask fibromyalgia patients about the symptoms of restless legs syndrome, because treatment may improve their sleep and quality of life.

-------------

Fibromyalgia, Irritable Bowel Syndrome, and Chronic Fatigue Syndrome are all presumptive conditions for Gulf War veterans, meaning disability claims are, in theory, nearly “automatic”

 

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Restless Leg Syndrome (RLS) Overview

Restless leg syndrome is a disorder in which there is an urge or need to move the legs to stop unpleasant sensations.

Symptoms

RLS leads to sensations in the lower legs that make you uncomfortable unless you move your legs. These sensations:

  • Usually occur at night when you lie down, or sometimes during the day when you sit for long periods of time
  • May be described as creeping, crawling, aching, pulling, searing, tingling, bubbling, or crawling
  • May last for 1 hour or longer
  • Sometimes also occur in the upper leg, feet, or arms

You will feel an irresistible urge to walk or move your legs, which almost always relieves the discomfort.

Most patients have rhythmic leg movements during sleep hours, called periodic limb movement disorder (PLMD).

All of these symptoms often disturb sleep. Symptoms can make it difficult to sit during air or car travel, or through classes or meetings.

Note: Symptoms may be worse during stress or emotional upset.

Treatment

There is no known cure for restless leg syndrome, but there are treatments that can help improve symptoms.

Treatment is aimed at reducing stress and helping the muscles relax. The following techniques may help:

  • Warm baths
  • Gentle stretching exercises
  • Massage

Low doses of pramipexole or ropinirole (Requip) can be very effective at controlling symptoms in some people.

If your sleep is severely disrupted, your health care provider may prescribe medications such as Sinemet (an anti-Parkinson's medication), gabapentin and pregabalin, or tranquilizers such as clonazepam. However, these medications may cause daytime sleepiness.

Patients with iron deficiency will receive iron supplements.

Low doses of narcotics may sometimes relieve symptoms of restless leg syndrome.

Causes

Restless leg syndrome (RLS) occurs most often in middle-aged and older adults. Stress makes it worse. The cause is not known in most patients.

RLS may occur more often in patients with:

A form of RLS may be passed down in families. This may be a factor when symptoms start at a younger age. The abnormal gene has not yet been identified.

Restless leg syndrome can result in a decreased quality of sleep (insomnia). This lack of sleep can lead to daytime sleepiness, anxiety or depression, and confusion or slowed thought processes.

Tests & diagnosis

There is no specific examination for restless leg syndrome. The health care provider will not usually find any abnormalities, unless you also have peripheral nerve disease. Blood tests (CBC and serum ferritin) may be done to rule out iron deficiency anemia, which in rare cases can occur with restless leg syndrome.

Examination and testing may be used to rule out other disorders with similar symptoms.

Prognosis

Restless leg syndrome is not dangerous or life-threatening, and it is not a sign of a serious disorder. However, it can be uncomfortable and disrupt your sleep.

Prevention of Symptoms

Techniques to promote muscle relaxation and stress reduction may reduce the incidence of restless leg syndrome in people prone to the condition.

Complications

Insomnia may occur.

When to contact a doctor

Call for an appointment with your health care provider if:

  • You have symptoms of restless leg syndrome
  • Your sleep is disrupted

Sunday, October 17, 2010

Another Breakthrough on Gulf War Syndrome: IOM Report Confirmed Two Decades of Gulf War Veterans’ Statements

By Camilla Louise Lyngsby, Columbia University SIPA

This summer marked the 20th Anniversary of the [buildup to the 1991] Gulf War, yet many veterans of that conflict continue to grow sicker.

[An April 2010] report released by the Institute of Medicine now provides additional scientific evidence to back up veterans’ claims that Gulf War illnesses exist, and are associated with their deployment.

Still, the soldiers who served the nation from 1990-1991 have not been getting the health care, treatment and disability benefits they needed and earned.

Just before the beginning of this semester, this reporter attended a congressional hearing on the issue.

Donald Overton, Executive Director for Veterans of Modern Warfare who served in the Gulf War, receives benefits for his blindness because it’s irrefutable, but not for his debilitating symptoms of Gulf War Syndrome.

“While some may view my injuries as devastating, particularly my blindness, I consistently contend I am one of the fortunate warriors that served during this conflict,” said Overton. “My conditions unlike those of so many of my battle buddies, could not be refuted by the Veterans Benefits Administration, thus affording me access to VA healthcare and benefits program.”

Of the 696,842 service members who served in the war, about 250,000 veterans suffer from the multi-symptom illness also, known as Gulf War Syndrome.

This is the same government that placed them in harm’s way that is now unwilling to fulfill its obligations to protect them. Many of the soldiers who served in the conflict were wounded in the line of duty and suffering from a range of physical disabilities including Chronic Fatigue Syndrome, Fibromyalgia which is the most common arthritis-related illness  and Irritable Bowel Syndrome. According to the Veterans of Modern Warfare, “We believe that these presumptions are appropriate and consistent with countless peer-reviewed scientific studies that have concluded that these conditions and symptom sets have high, unusual prevalence among veterans of the 1990 – 1991 Gulf War.”

Gulf War veterans are heading down that same path as the Vietnam War veterans exposed to the herbicide Agent Orange, and who were denied disability compensation benefits for decades.

Soon after the Gulf War, veterans started to contact the American Legion Service Officers complaining about health issues stemming from their service in the country or upon their return from Southwest Asia. “The symptoms were wide-ranging, but fatigue, joint pain, skin rashes, memory loss appeared to be met with a common diagnosis ─ “It is all in your head,” or “It is stress-related,” by both the Department of Defense and Department of Veterans Affairs (VA) health care professionals, said Ian de Planque, Deputy Director of Veterans Affairs and Rehabilitation Commission, American Legion.  We even learned of biases within the health care profession that found undiagnosed illness as simply a desire for disability compensation.”

It’s unclear how to treat Gulf War Syndrome, a cluster of symptoms that doesn’t fit into current medical concepts of disease. There is now scientific consensus that Gulf War illness is real. And being sick is a fundamental reality to the veterans suffering from the war illnesses.

In order to be effective, Dr. Stephen Hauser, the medical doctor and chairman of the most recent Institute of Medicine panel on Gulf War illness research suggested that, large scale research models are needed much like government-sponsored programs that are performed in the same manner as a national effort to eradicate polio or government research efforts to eliminate HIV/AIDS.

Chairman James Binns of the Research Advisory Committee on Gulf War Veterans’ Illnesses said it is essential “to employ the best in American science, run by people who go to bed at night and wake up in the morning thinking about this problem, [but] this country is not doing that.”

Congressional members routinely ask if the VA has adequate funding to carry out its obligations, and the VA’s response is always that it has sufficient funds. However, the Government Accountability Office (GAO) has accused the VA of underestimating funding needs.

Since 2009, Secretary of Veterans Affairs Eric K. Shinseki and his Gulf War  Veterans Illness Task Force was charged with reexamining the disability claims of thousands of veterans. But, some skeptics say that problems remain at the VA. Paul Sullivan of the advocacy group Veterans for Common Sense said, “If VA Secretary Shinseki won’t fix VA’s Research Office, then Congress must intervene and place Gulf War research outside of their area of responsibility.”

In November 2005, $75 million was appropriated for Gulf War illness research at the University of Texas Southwestern Medical Center. However In 2010, the VA cancelled the research program and is in the process of launching a new program. But apparently the VA staff is still funding research focused on “stress,” as shown in a VA most recent announcement of $2.8 million for research widely criticized by Gulf War veterans.

To this day, the trail remains cold. There have been many speculations and disagreements about the causes of the Gulf War Syndrome and the health issues faced by thousands of soldiers. Some causes considered include soldiers’ exposure to depleted uranium, chemical weapons, environmental hazards, anthrax vaccines given to deployed soldiers and infectious diseases. But many of these potential sources have been debunked. To date, research on the exposure to depleted uranium has not been launched.  [Editor’s Note:  substantial research has been conducted on DU, and found that inhaled and ingested DU are of substantial human health concern, including DNA and RNA changes that may result in long latency cancers.]

The Gulf War Syndrome and related diseases are not unique to the U.S. Many coalition soldiers reported illnesses upon their return home. In particularly German and British soldiers are suffering from Gulf War illnesses. They are waiting for the U.S. to spearhead an investigation and research into what has caused them to be sick upon return from the war zone and to why they are suffering from undiagnosed ailments and medically unexplained chronic illnesses. But the key difference is that Germany and the UK are providing medical treatment and disability benefits. Unlike the United States, these countries are taking care of their own.

The Veterans of Modern Warfare is urging Congress to enact legislation to remove all sunset provisions so health care and benefits last for the for the lifetime of every Gulf War veteran and every surviving beneficiary. Gulf War veterans have pointed to the complexity of accessing benefits and gaining permission to the Veterans Health Administration.

Chairman Charles Cragin, Advisory Committee on Gulf War Veterans said, “Consider for a moment that all of the fine men and women were considered in excellent health and ‘deployable’ when they went to war and shortly after their return home, the veterans began complaining of feeling ill and seeking help. These veterans were not engaged in a massive, national conspiracy to defraud the government. Rather they were sick. The ‘Process’ became a wall rather than a door.”

In 2009, the VA Task Force was responsible for conducting a comprehensive review of all VA programs and services that serve the Gulf War cohort of veterans. “Due to significant limitations in VA’s Gulf War Veterans Information System and the GWVIS reports generated from the various data sources used by the information system, it is extremely difficult to accurately portray the experiences of the 1990-1991 Gulf War cohort and their respective disability claims or health care issues,” said Chief of Staff John Gingrich, U.S. Department of Veterans Affairs.  That said, Gingrich continued, “This shortfall did not prevent the Task Force from identifying gaps in services as well as opportunities to better serve this veteran cohort.”

The Gulf War Veterans Information System was corrupted. To date, the issues with this data system have not been addressed, said Cragin during the hearing, “If you don’t have good data, you can’t make good decisions.”

Still, remarkably, the veterans don’t regret their service.

“The most revealing comment we have heard from the ill Gulf War veterans that we have talked to,” said Ian de Planque,  “was their answer to one simple question, “If you had it all to do over again and your unit was deployed to the Persian Gulf, would you go?”

The answer was unanimous ─ ‘Absolutely!’

These young men and women did not fail us ─ We as a nation have failed them.”

--------------

Camilla Louise Lyngsby is a second year Master of International Affairs student and SIPA News Editor for Communiqué

U.S. research links Gulf War nerve agent with long-term heart damage

 

LOS ANGELES, Oct. 13 (Xinhua) -- The American Heart Association (AHA) announced on Wednesday that a research in mice has shown that Gulf War nerve agent may be tied to long-term heart damage.

An analysis of data on mice found that mice developed heart damage 10 weeks after low-dose exposure to sarin, but not earlier, the AHA said in a news release.

The heart damage included enlargement of the left ventricle, an electrical conduction problem that could lead to heart rhythm abnormalities, and reduced ability of the ventricles to contract and pump blood, according to the AHA.

Sarin is known to affect the nervous system and can cause convulsions, breathing difficulties and death.

In this study, researchers examined how sarin affected the hearts of mice. The chemical was injected into the animals at doses too low to produce visible symptoms and the mice were checked 10 weeks after exposure.

"These results have implications for the military in terms of conflict and for civilian populations in cases of environmental or occupational exposure," Mariana Morris, of the Boonshoft School of Medicine at Wright State University in Dayton, Ohio, said in the news release.

"The two-month period was used to simulate the late-onset effect of sarin/nerve agents in Gulf War veterans. There are suggestions that Gulf War illness, in which symptoms are long-lasting, may be related to exposure to low-dose chemical warfare agents," said Morris.

Editor: Mo Hong'e

--------------------

Gulf War Nerve Agent Tied to Late-Onset Heart Damage in mice

By Robert Preidt

HealthDay Logo

HealthDay news image

WEDNESDAY, Oct. 13 (HealthDay News) -- Low-dose exposure to the chemical warfare agent sarin may lead to long-term heart damage, a new study suggests.

Sarin is known to affect the nervous system and can cause convulsions, breathing difficulties and death. In this study, researchers examined how sarin affected the hearts of mice. The chemical was injected into the animals at doses too low to produce visible symptoms and the mice were checked 10 weeks after exposure.

"The two-month period was used to simulate the late-onset effect of sarin/nerve agents in Gulf War veterans. There are suggestions that Gulf War illness, in which symptoms are long-lasting, may be related to exposure to low-dose chemical warfare agents," Mariana Morris, of the Boonshoft School of Medicine at Wright State University in Dayton, Ohio, said in a news release from the American Heart Association.

Heart damage that was noted in the mice 10 weeks after exposure to sarin, but not earlier, included: enlargement of the left ventricle; an electrical conduction problem that could lead to heart rhythm abnormalities; and reduced ability of the ventricles to contract and pump blood, the researchers found.

"These results have implications for the military in terms of conflict and for civilian populations in cases of environmental or occupational exposure," Morris said in the news release.

The study results are scheduled for presentation Wednesday at the American Heart Association's High Blood Pressure Research 2010 Scientific Sessions, held in Washington, D.C.

SOURCE: American Heart Association, news release, Oct. 13, 2010

HealthDay:  URL of this page: http://www.nlm.nih.gov/medlineplus/news/fullstory_104351.html (*this news item will not be available after 01/11/2011)

Saturday, October 9, 2010

Veteran affairs: now we must serve them

Uncle Sam is glad to wave the flag when sending soldiers to war, but patriotism means doing right by our veterans, too

Seema Jilani, guardian.co.uk, Friday 8 October 2010 17.00 BST

Jesus Bocanegra, PTSD, Iraq war veteran Jesus Bocanegra, of McAllen, Texas, in front a painting of himself done while he was serving in Iraq in 2006. Bocanegra has been diagnosed with Post-Traumatic Stress Disorder, or PTSD, a result of his service in Iraq in 2003-04; an attempt to attend college was thwarted by his nervousness with crowds, a common symptom of PTSD. Photograph: Chris Hondros/Getty Images

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Q: "What's the difference between a nurse at a veterans' hospital and a gun?"

A: "A gun draws blood, you can fire a gun, and a gun only kills once per try."

While it's a harsh joke circulated among those who work at veterans' hospitals, the sentiment underscored is that the US government does not prioritise veterans' health enough to pay nurses competitive salaries. The Department of Veterans Affairs has continually slinked into the shadows and reneged on its responsibility to take care of those who have valiantly served our nation.

Returning veterans have an abysmal state of affairs to come back to, a crisis even. A new study estimates that the price tag for healthcare costs of veterans from Iraq and Afghanistan could be as much as $1.3tn. Approximately 600,000 of the 2.1 million service members have already sought VA healthcare, a higher proportion than from prior wars.

Suicide rates of returning veterans are four times that of the civilian population. Five years ago, 87 service members committed suicide on active duty. Last year, the count was 162. At Fort Hood, there have been 14 confirmed suicides and six deaths are pending investigation. There has been a 40% increase since 2006 in the suicide rate of Texan veterans younger than 35. Last week, at Fort Hood, four men – all under the age of 40 – took their own lives. All were decorated veterans and two were fathers of young children. Upon retrospective chart review, many patients had expressed worrisome signs of impending harm, but little action was taken.

To add to its dire ethical record, the VA did not recognise Gulf war illness (GWI) as an entity for several years, even after medical evidence published in notable journals pointed to its existence, and several thousand veterans voiced symptoms that fit the diagnosis. By "neither confirming nor denying" its existence, the VA ensured that suffering veterans were unable to receive compensation for debilitating illnesses. Last year, the VA cancelled a congressionally mandated contract for GWI research at the University of Texas Southwestern, which may have been because research was implicating toxic exposures to depleted uranium (DU) and sarin nerve gas. If established by the study, this would allow more veterans to claim "service-related" illnesses, thereby obliging the VA to foot the bill for treatment. Last year, an expose uncovered the fact that doctors were being pressured by the VA to refrain from diagnosing PTSD, and told to diagnose patients with "anxiety, not otherwise specified" instead. That way, veterans would receive substantially lower disability benefits.

However, President Obama and Eric Shinseki are doing far better than their predecessors (think Walter Reed). It wasn't until the Obama administration that Gulf war illness was officially acknowledged, as were illnesses linked with Agent Orange, thereby opening benefits for affected veterans. Still, our government can glory in "our brave troops" when marching off to war, but cannot dig into its pockets to care for fragile veterans upon their return. Patriotism is more than rallying around a flag, tying yellow ribbons and singing twisted Toby Keith lyrics.

And the sorry business darkens further. What unsavoury things occur when the Department of Veterans Affairs gets into bed with self-serving insurance companies? Wretched war-profiteering of the most sinister kind.

Prudential Insurance provides life insurance to 6 million US military personnel and families. It was recently revealed that the VA failed to inform soldiers of a secret agreement with Prudential enabling the firm to withhold lump-sum payments of life insurance benefits to families of fallen service members. Since 1999, Prudential has used money set aside for soldiers' life insurance as investment income. Over the years, Prudential sent families "checkbooks" instead of money. By delaying payment, Prudential kept the money in its corporate "alliance accounts", where it could potentially earn eight times as much as it currently pays in interest to beneficiaries.

Furthermore, these assets were not FDIC-insured, meaning the money could evaporate; if Prudential fell apart, families would have no recourse. As of June 2010, Prudential held $662m of survivors' money in its corporate account. It earned 4.2% in 2009; the company has paid survivors holding alliance accounts 0.5% in 2010. Five family members filed a federal fraud lawsuit last month claiming the insurer has earned as much as $500m by inappropriately retaining funds due to families. As noted in the Boston Globe, Bob DeFillippo, Prudential spokesman, declined to comment on the lawsuit, but he defended the alliance accounts, noting that they were supposed to allow people time to grieve. It was because these accounts require ready access to the money, DeFillipo explained, that the investment was short-term and the interest rate lower.

Whatever the outcome of that case, it will do little to dispel the impression that the insurance company and the VA have done deals over the dead bodies of men and women in uniform in order to make a quick and easy buck… or millions.

Our veterans, who have served their country so heroically, don't need yellow ribbons; they need less red tape and more transparency. Wasn't it enough that they gave their lives for their country, were rendered so mentally ill that some have taken their own lives? Or do their wives and mothers also have to be exploited in their darkest hour in order to boost insurance stock portfolios?

"Bleeding-heart liberals" often bear the brunt of criticism when proposing that the government take financial responsibility for veterans' healthcare. Given how reprehensibly our veterans are being mistreated, shouldn't all our hearts be bleeding?

Wednesday, October 6, 2010

Canadian Gulf War Veterans’ Advocate Among Vets with Personal Medical Files Accessed by Administrative Public Officials

 

More veterans sound alarm over serious privacy breaches

Canadian Gulf War Veteran Louise Richard who served as a nurse in Kuwait and has testified in the U.S.about the plight of Canadian Gulf War veterans before the Congressionally Chartered VA Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC)  is seen at her home in Ottawa on Monday Oct. 4, 2010, where she displays some of the 4,000 pages of personal documents which she obtained through an access to information request to Veterans Affairs. More veterans are coming forward with claims their private medical information was distributed or widely accessed by federal bureaucrats in what some say were attempts to smear reputations.   THE CANADIAN PRESS/Sean Kilpatrick

Written by Murray Brewster, The Canadian Press

(Ottawa, Ont., Canada) - More veterans are coming forward with claims their private medical information was distributed or widely accessed by federal bureaucrats in what some say were attempts to smear reputations.

At least three new cases came to light Tuesday, widening a privacy scandal triggered by veterans activist Sean Bruyea who acquired hundred of pages of government documents that improperly divulge his confidential medical and psychiatric files.

Long-time veterans critic Louise Richard, who suffers post-traumatic stress, cites an internal memo she obtained that shows the current deputy minister of veterans affairs was extensively briefed early last year about her private medical information.

The briefing was held prior to a meeting Ms. Richard had with deputy minister Suzanne Tining, at which the two were to discuss Gulf War Syndrome, a chronic condition the federal government does not recognize as pensionable.
The former military nurse says her medical information and complaints about how Veterans Affairs handled her file had nothing to do the subject of their discussion.

“These people that wrote the brief for deputy minister, they have no medical knowledge,” Ms. Richard said in an interview with The Canadian Press.

“Where does this sense of entitlement come from within [Veterans Affairs]? They seem to be able to do what they please with our medical records and share what they want, with who they want and all of this with bureaucrats who have no medical knowledge or expertise.”

The memo was dated Jan. 14, 2009.

It was not immediately clear how widely Ms. Richard's information was shared. She is still poring over 3,662 pages of information released following a Privacy Act request she made.

everal boxes of documents arrived in spring 2009, but Ms. Richard said she was afraid to open them because she was overwhelmed by the thought the department had written so much about her.

The packages remained sealed until Mr. Bruyea came forward two weeks ago with evidence that his private information had been widely circulated within the department.

Personal medical data, including a quote from Mr. Bruyea's psychiatrist, found their way into a briefing for Greg Thompson, the former Conservative minister of veterans affairs.

Privacy Commissioner Jennifer Stoddart, who's investigating Ms. Bruyea's allegation, last week announced she would conduct an audit of Veterans Affairs because of potential systemic problems handling sensitive information.

Veterans ombudsman Pat Stogran says a printout of his veterans file shows it been accessed more than 400 times – and wonders whether his post-traumatic stress evaluation has been used to discredit him.

Veterans Affairs Minister Jean-Pierre Blackburn says he's aware of other veterans who are concerned their privacy has been violated.

The minister urged them to contact Ms. Stoddart's office immediately, and acknowledged for the first time his department has a problem handling sensitive information.

“There are policies and processes in place to ensure veterans' information that is contained in our files and systems is protected from unauthorized use and disclosure,” Mr. Blackburn said in a statement Tuesday.

“These processes appear not to be sufficient.”

Mr. Blackburn said he's considering imposing stiffer penalties on staff who break privacy rules, up to and including dismissal. Currently staff can be suspended for a week.

Retired colonel Michel Drapeau, an expert in privacy law, said he's been contacted by two other veterans who claim their private information has been misused.

One of the cases involves sensitive medical information allegedly leaked to an outside employer by a Veterans Affairs staffer – an allegation that is also the subject an internal investigation.

Drapeau declined to reveal the names of his clients or discuss any other circumstances.

“The last thing they want to do is ... speaking to the media or making it public. Most of them are shocked and go to ground.”

“It's wrong,” Mr. Drapeau said. “It's more shock and more devastating because a private citizen doesn't really have the tools to fight back, whereas advocates, like Sean, know what to do.”

Ms. Richard said somebody has to answer for what's happened.

“As a registered nurse, I'm very aware of the confidentiality and protection of medical documents and I'm held legally accountable for any breach or misuse or interpretation of medical information,” she said.

“But yet you look at Veterans Affairs – it's totally beyond me. It's unacceptable that no one is assuming responsibility.”

Ms. Richard and Mr. Bruyea were fixtures on the federal scene five years ago, before the appointment of a veterans ombudsman.

They advocated passionately for injured soldiers to receive better consideration and benefits from the federal government, and fought their own personal battles with the bureaucracy.

VA Q&A: Presumptive Service-Connection for Nine Rare Disease Endemic to Southwest Asia and Afghanistan Service

 

QUESTIONS AND ANSWERS

“Presumptions of Service Connection for Southwest Asia and Afghanistan Service”

September 28, 2010

1. What does this final rulemaking do?

This final regulation implements a decision by the Secretary of Veterans Affairs that there is a positive association between service in Southwest Asia beginning on August 2, 1990(including Iraq), or in Afghanistan on or after September 19, 2001, and the subsequent development of certain infectious diseases. The effect of this final regulation is to establish a presumption of service connection for these diseases for qualifying service during those periods.

Under VA regulations, the Southwest Asia theater of operations includes Iraq, Kuwait, Saudi Arabia, the neutral zone between Iraq and Saudi Arabia, Bahrain, Qatar, the United Arab Emirates, Oman, the Gulf of Aden, the Gulf of Oman, the Persian Gulf, the Arabian Sea, the Red Sea, and the airspace above these locations.

2. What types of claims for VA benefits does the final rulemaking affect?

The final rule affects compensation claims filed by Veterans with service during certain time periods in Southwest Asia or in Afghanistan, for Brucellosis, Campylobacter jejuni, Coxiella burnetii (Q fever), Malaria, Mycobacterium tuberculosis, Nontyphoid Salmonella, Shigella, Visceral leishmaniasis, and West Nile virus, that are pending before VA or received on or after the rule change takes effect. Pending claims include claims on appeal or that have not yet been finally decided.

3. Why is this final rulemaking necessary?

The Secretary, in accordance with The Persian Gulf War Veterans Act of 1998, has determined that there is a basis to establish a presumption of service connection at this time, based on service during certain time periods in Southwest Asia or in Afghanistan for certain time periods, for Brucellosis, Campylobacter jejuni, Coxiella burnetii (Q fever), Malaria, Mycobacterium tuberculosis, Nontyphoid Salmonella, Shigella, Visceral leishmaniasis, and West Nile virus as identified in the National Academy of Sciences (NAS) October 16, 2006 report, titled “Gulf War and Health Volume 5: Infectious Diseases.” In this regard, the Secretary of Veterans Affairs determined, based upon the NAS report, that there is a positive association between service in Southwest Asia or in Afghanistan, and the subsequent development of the listed infectious diseases.

4. How does this final rulemaking help veterans?

The final rule will expedite the processing of claims for service connection. A claimant will not be required to establish, with medical evidence, an actual connection between military service in Southwest Asia or Afghanistan and diagnosed Brucellosis, Campylobacter jejuni, Coxiella burnetii (Q fever), Malaria, Mycobacterium tuberculosis, Nontyphoid Salmonella, Shigella, Visceral leishmaniasis, and West Nile virus. Instead, a claimant who served during certain time periods in Southwest Asia or Afghanistan, will only have to show that he or she had one of the nine diseases within a certain time after service and has a current disability as a result of that disease.


5. What are the nine new presumptive diseases?

• Brucellosis A bacterial disease with symptoms such as profuse sweating and joint and muscle pain. The illness may be chronic and persist for years. It must be at least 10% disabling within 1 year from the date of military separation.

• Campylobacter Jejuni A disease with symptoms such as abdominal pain, diarrhea, and fever. It must be at least 10% disabling within 1 year from the date of military separation.

• Coxiella Burnetii (Q Fever) A bacterial disease with symptoms such as fever, severe headache, and gastrointestinal problems such as nausea and diarrhea. In chronic cases, the illness may cause inflammation of the heart. It must be at least 10% disabling within 1 year from the date of military separation.

• Malaria An infectious disease caused by a parasite. Symptoms include chills, fever, and sweats. It must be at least 10% disabling within 1 year from the date of military separation or at a time when standard or accepted treatises indicate that the incubation period began during a qualifying period of military service.

• Mycobacterium Tuberculosis An illness that primarily affects the lungs and causes symptoms such as chest pain, persistent cough (sometimes bloody), weight loss and fever.

• Nontyphoid Salmonella A condition characterized by symptoms such as nausea, vomiting, and diarrhea. It must be at least 10% disabling within 1 year from the date of military separation.

• Shigella A condition characterized by symptoms such as fever, nausea, vomiting, and diarrhea. It must be at least 10% disabling within 1 year from the date of military separation.

• Visceral Leishmaniasis A parasitic disease characterized by symptoms such as fever, weight loss, enlargement of the spleen and liver, and anemia. The condition may be fatal if left untreated.

• West Nile Virus A disease spread by mosquitoes characterized by symptoms such as fever, headache, muscle pain or weakness, nausea, and vomiting. Symptoms may range from mild to severe. It must be at least 10% disabling within 1 year from the date of military separation.

The presumptive periods for each of the nine diseases have been determined on the basis of the NAS report and reflect the observation that six of the nine diseases ordinarily manifest within a short period of time following infection. The one-year period is also consistent with the existing presumption of service connection for tropical diseases found at 38 U.S.C. § 1112(a). The presumptive periods for the other three diseases are based on existing statutes and medical treatises.

6. What are the cost estimates for the nine new presumptives?

Benefit payments are estimated to be $1.5 million during the first year, $11.5 million for five years, and $36.4 million to approximately 600 Veterans and survivors over ten years.

7. What caused VA to include these presumptions now and why did it take VA nearly 4 years from publication of the IOM report to create presumptions of service connection?

The nine illnesses covered by the new presumptions are all infectious diseases and are noted in the 2006 Institute of Medicine (IOM) report, Gulf War and Health Volume 5: Infectious Diseases, as endemic to the Middle East/Southwest Asia area. In some cases, infection with one of these agents may lead to some of the chronic multi-symptom illnesses suffered by some troops of the Gulf Wars. At this time, VA does not believe there is a single Gulf War Illness or Syndrome. The issue is far more complex and varies with each individual service member’s environmental exposures during service in the early and ongoing Gulf Wars. However, VA has been treating and compensating Veterans for undiagnosed or chronic unexplained multi-symptom illnesses related to service in Southwest Asia and the Middle East for nearly two decades. The illnesses and diseases included under this umbrella are compiled by VA funded Gulf War research and verified by the Institutes of Medicine (IOM).

After the IOM published their report on October 16, 2006, then Secretary of Veterans R. James Nicholson appointed a task force that included Under Secretaries for Health and Benefits, Assistant Secretary for Policy and Planning, and the General Counsel to study the report and recommend what action he should take regarding the establishment of new presumptions. He was succeeded by Secretary James B. Peake in December 2007. The task force presented its report to Secretary Peake on January 10, 2008. After reviewing the task force report, he sent letters to Congressional leaders on January 14, 2008, informing them that he had determined that 9 infectious diseases were associated with Gulf War service and therefore presumptions of service connection were warranted. On April 2, 2009, VA published a notice in the Federal Register stating that VA was drafting regulations creating those presumptions, and that no other presumptions were warranted. On March 18, 2010, VA published a proposed rule (AN24) proposing to create those presumptions. We received 18 public comments which we responded to in the Final Rule published September 29, 2010.

8. How do Veterans know if they have any of these presumptive diseases?

The key to the new presumptions is the development of symptoms during or very shortly after service in the Middle East/Southwest Asia, usually within the same year of exposure. However, visceral leishmaniasis and Mycobacterium Tuberculosis have been granted unlimited presumption since they can develop much later.  Many of the diseases share symptoms with the flu or common illnesses such as frequent fevers or skin rashes. Veterans who served in Southwest Asia or Afghanistan who suffer chronic illness since their service in the Gulf should seek treatment at a VA medical facility for diagnoses.  Veterans can find their nearest medical facility at www.va.gov.

9. When will VA start processing claims for this new regulation?

VA will begin processing claims when the final rule is published on September 29, 2010.

10. Will these claims be processed under the planned automated system intended to be used for the Agent Orange presumptives?

No, because of the small number of anticipated claims, this change does not lend itself well to the special processes being explored for the potentially very large number of Agent Orange claims we anticipate.

11. If a veteran has multiple issues (such as heart issue, knee problem, back issue) does he/she submit all three at one time or submit for the presumption first and then submit the other issues?

Veterans should file claims for all issues they believe to have been incurred in or aggravated by service at one time. If evidence supporting the presumptive disease is sufficient, it may be processed before other issues.

12. If a veteran has been denied for an issue that is now a presumption does he/she have to resubmit a claim in order to be reconsidered?  And if so, from what date would compensation be paid?

Yes, the veteran should resubmit his or her claim. If entitlement is established, service connection will be granted from the date of the publication of the final rule. For claims submitted more than one year after the publication of the final rule, VA may pay up to one year of retroactive benefits. Compensation, or additional compensation payable if the Veteran is already service connected for another disability, resulting from this rule will be payable from the first of the month following publication.

13. Does VA plan to do any special outreach to Southwest Asia and Afghanistan veterans, who either have or had a compensation claim related to the nine presumptives or are still on active duty?

VA will work closely with Veterans Service Organizations, the Department of Defense and stakeholders to ensure that potentially affected Veterans are made aware of the rule and the benefits and services available to them and their dependents.

Through the work of the GWVI-TF, VA developed a unique process to directly engage Gulf War Veterans for their ideas, questions, and concerns regarding the services and benefits they receive at the VA. The report recommends greater outreach to Veterans, and moves the outreach model from “pushing” information to Veterans towards a “pulling” model where VA “pulls” or reaches out to welcome them into the VA for health care, benefits and other services. VA will continue to strengthen its critical partnerships with Veterans Service Organizations, Non Governmental Organizations, and other Veteran advocates to help spread the word about health care and benefits for Gulf War Veterans.

14. What training did VA employees receive?

On February 4, 2010, VA issued a Training Letter to its benefits employees that provided guidance on the new process for developing and adjudicating disability claims of Gulf War Veterans based on their service. Additional information on broader environmental hazard exposure was included in a second Training Letter, issued April 26, 2010. VA also initiated new clinician training for treating Gulf War Veterans that was developed collaboratively by front-line providers, Compensation & Pension examiners, social workers, and policy experts. This training will improve the care provided to Gulf War Veterans to be more patient-centered and focused on their unique health concerns. VA has held well-attended environmental exposures seminars in Portland, Oregon, and Indianapolis, Indiana, and is scheduled to expand to other locations next year. VA’s War Related Illness and Injury Study Center program is fully operational with facilities operating in three locations: Washington, DC, East Orange, NJ, and Palo Alto, CA.

15. What is the Gulf War Task Force and what is its relationship to the nine new presumptives?

The decision to add the nine new presumptives predated the Gulf War Veteran Illness Task Force. The overarching responsibility of the Gulf War Veteran Illness Task Force (GWI-TF) is to regain Gulf War Veterans’ confidence in VA’s health care, benefits, and services and reconfirm VA is 100% committed to Veterans of all eras. The GWI-TF is not a static, one-time initiative but will continue to build on its work with annual reports issued every August. The focus centers on unanswered Gulf War Veterans’ health issues, improving access to benefits, ensuring cutting edge research into treatments, and to make sure Veterans’ concerns are heard and addressed. This includes continuing to solicit Veterans, experts, advocates and stakeholders to share their views to better inform the important work of the GWI-TF.

16. What organizations does VA partner with related to Gulf War issues?

VA has a long history of working with the Veteran Service Organizations and the Department of Defense (DoD). This is evidenced in many ways, including the the development of the Disability Evaluation Pilot Programs, the MyHealtheVet and eBenefits portals, and the Qarmat Ali medical surveillance program. DoD input for the GWVI-TF was solicited from working groups within its Health Executive Council, Office of the Surgeons General, and Office of the Assistant Secretary of Defense for Health Affairs. VA-funded research projects often involve collaborators who are located at affiliated universities, allowing VA researchers to utilize expertise that may not be available at VA. VA researchers also participate as researchers in DoD’s Gulf War Illness Research Program administered by the Congressional Directed Medical Research Programs. These programs fund innovative research to identify effective treatments, improve definition and diagnosis, and better understand pathobiology and symptoms. The Center for Disease Control (CDC) has also been very receptive to working with VA and has agreed to increase VA participation in the development of future medical surveys.

17. What is Disability Compensation

Disability compensation is a non-taxable monetary benefit paid to Veterans who are disabled as a result of an injury or illness that was incurred or aggravated during active military service. Presently, the basic monthly rate of compensation ranges from $123 to $2,673 for Veterans without any dependents.

Last year, VA received more than one million claims for disability compensation and pension. VA provides compensation and pension benefits to over 3.8 million Veterans and beneficiaries.

18. Where can I go to get more information about health care and benefits related to these new presumptives?

For information about health problems associated with military service during operations Desert Shield, Desert Storm, Iraqi Freedom, and Enduring Freedom, go to www.publichealth.va.gov/exposures/gulfwar/.

For information about how to apply for disability compensation, go to www.va.gov or http://www.publichealth.va.gov/exposures/gulfwar/compensation_benefits.asp.

Friday, October 1, 2010

Nat’l Fibromyalgia Assoc. Needs Help on Xyrem Approval for Fibromyalgia

October 1, 2010

Dear NFA Supporter,

On August 20, 2010 the Food and Drug Administration (FDA) convened an Advisory Panel, made up of the Arthritis Advisory Committee and Drug Safety and Risk Management Advisory Committee to contemplate support for the approval of Jazz Pharmaceuticals Xyrem (sodium oxybate), as a fibromyalgia treatment.

At the hearing the panel made up of medical professionals heard testimony from researchers, physicians, and patients relevant to the benefits of this medication in the treatment of fibromyalgia symptoms, especially pain. Positive scientific outcomes were expounded by the researchers. Medical doctors described the exemplary patient treatment outcomes associated with sodium oxybate.

Patients gave personal testimonies revealing their positive responses to the drug. However, even with these affirmative testimonies and shared outcome data from scientific research studies from two previous phase III trials involving a total of more than 1,000 fibromyalgia patients, that demonstrated efficacy in significantly decreasing pain and fatigue and improving daily function, the Panel voted 20 to 2 against approving sodium oxybate for the treatment of fibromyalgia.

Concerns raised by the Panel members included doing additional studies measuring sodium oxybate’s effectiveness against other FDA approved fibromyalgia drugs and instigating more Risk-Evaluation and Mitigation Strategies (REMS) control methods. Sodium oxybate is already approved by the FDA for the treatment of excessive daytime sleepiness and cataplexy (the sudden loss of muscle tone) in adult patients with narcolepsy. It is listed as a schedule III drug and its distribution is restricted through the Patient Success Program, already one of the most stringent REMS processes. Currently, it can only be purchased from a central, mail-order pharmacy and patients are first required to read a letter as well as a brochure plus watch a video about safety precautions and how to appropriately take the medication.

In response to the Panel’s rejection of sodium oxybate, Jazz Pharmaceuticals has created an even more stringent REMS program to address delivery and safety issues. It is also working with the FDA to satisfy the research questions raised by the panel.

On October 11, the next important step in the process for FDA approval of sodium oxybate will take place. Fibromyalgia patients deserve the opportunity for access to sodium oxybate to relieve their pain and other symptoms. Scientific research has shown this medication to be the most efficacious drug ever tested for people with fibromyalgia.

The NFA encourages you to please take a minute and access one of the attached letters in support of FDA approval of sodium oxybate, sign it and send it to the FDA at the provided address.

Click HERE if you are a person with fibromyalgia who has taken sodium oxybate

Click HERE if you are a person with fibromyalgia who supports FDA approval of sodium oxybate

Thank you joining us, as we take action to improve the lives of people living with fibromyalgia.

Sincerely,

Rae Marie Gleason
Executive Director, National Fibromyalgia Association