USA Today: ALS disease affects bodies, not determination

Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease, has affected well over one hundred Gulf War veterans.

According to USA Today article today:

About 40,000 people live with ALS in the USA. That number has grown higher as medical support has extended life expectancy after diagnosis from three years to four-six years, says Stanley Appel, director of the ALS Clinic at the Methodist Hospital in Houston.

Technology has made it possible for ALS patients to stay connected and have productive lives, Appel says.

Like Lester, Cathy Wolf of Katonah, N.Y., and Augie Nieto of Corona del Mar, Calif., are doing that.

Read the full article here:  http://yourlife.usatoday.com/health/medical/managingillness/story/2011/03/ALS-disease-affects-bodies-not-determination/44655194/1?csp=34news&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+usatoday-NewsTopStories+%28News+-+Top+Stories%29&utm_content=My+Yahoo

Senate: $11.8 million for Gulf War related health research in Omnibus

 

Written by Anthony Hardie, 91outcomes

(91outcomes.com) - According to a key staff member in the office of U.S. Senator Bernie Sanders (I-Vt.), a longtime, leading champion of Gulf War Illness treatment research and other Gulf War related efforts in the U.S. Senate:

Here is what I found in the most recent FY 2011 Omnibus DOD Appropriations currently under consideration. 

Provides $8 million for the Peer Reviewed Gulf War Illness Research Program and $3.8 million for the ALS Therapy Development Institute Gulf War Research Project.

This will ensure continued funding at this year’s level, a wonderful outcome that is even more exceptional given the current challenges facing a lame duck Congress trying to get a lot done in a matter of days left before the end of the year.

And, General “Mic” would probably have been pleased to see this continued, designated funding for Gulf War related ALS funding.

So, in total, it appears highly likely that the FY11 funding for Gulf War related research in the CDMRP will be at $13.8 million, as described above.  Excellent news!

And, according to another key Hill insider from one of the leading veterans service organizations on this issue:

We have no influence on the current funding levels (they have been set by CBO and will not be impacted).

Putting all of our energy into planning a concerted effort to influence the next Authorization funding cycle will be a much more worthy endeavor.

In everyone’s opinion [on the Hill, this year’s GWI funding level] is set in stone at this point.

As noted in the 91outcomes’ earlier article, the House version already had a provision ensuring that DoD funding continues, for the most part, at FY10 levels.  As such, this includes $8 million for the peer reviewed $8 million Gulf War Illness research program.

And, if the Senate should also change course from the proposed “omnibus” appropriations act and move to a “clean” Continuing Resolution like the House has already passed, this will also result in the same funding outcomes for CDMRP Gulf War related health research.

So, good news all around!

NEXT YEAR:

Now is the time to begin thinking about preparing for a concerted effort in the next Congress to seek increased funding for DoD-Army-CDMRP GWI research. 

Given the possibility of new inter-agency, inter-institution research consortiums being funded, having a coordinated message by all organizations and individuals contacting Congress will be of critical importance. 

WHAT NOT TO DO TODAY:

Fragmented messages and random calls by individuals not really clear on what it is for which they’re asking has the strong potential of derailing efforts. 

Anything perceived by members and staff in Congress as having a lack of clear unity on a particular issue -- like CDMRP GWI funding -- can lead to lots of calls and confusion and result in that particular issue – like CDMRP GWI funding -- to be left in the “too hard to do” category and left off from funding entirely.

And, the current “CR” and omnibus appropriations bills do not contain “line items” for these research programs – they’re mostly “clean” bills that simply say to continue funding across the board at last year’s levels.

This also means that there is little if any possibility of changing funding from last year’s levels.

WHAT TO DO TODAY:

So for now, individuals interested in contacting their members of Congress should simply say, “thank you” for the continued funding at this year’s level for all programs, including the DoD-Army-CDMRP peer reviewed Gulf War Illness research program. 

WHAT TO DO AFTER JANUARY 3RD:

Stay tuned here on 91outcomes for updates on concerted efforts in the next Congress, which begins in January. 

It will be important that Gulf War veterans speak with one voice on these critically important issues, particularly with the possibility of a need to fund consortiums with FY12 funding.

Legislative Update: Current Status of DoD Gulf War Illness Research Funding Remains Volatile

 

Written by Anthony Hardie, 91outcomes.com

(91outcomes.com) – Just like last year, monitoring Congressional appropriations actions for the FY11 peer reviewed Gulf War Illness (GWI) research program administered under the Congressionally Directed Medical Research Program (CDMRP) and efforts to ensure the program’s funding success remain highly challenging.

As of today, it appears that both House and Senate actions suggest final GWI CDMRP funding for FY11 might be at $8 million, the same level as FY10. However, it should be noted that the situation continues to change rapidly. As always there are no guarantees until the entire Congress sends a final bill to the President.

Continued careful monitoring, combined with veterans advocates and organizations at the ready to contact key members of Congress, will be required.

House

On Wednesday, December 8, 2010, the House narrowly passed by a vote of 212-206 a Continuing Resolution (CR) that provides -- with various unrelated exceptions -- continued FY11 appropriations at FY10 levels, through September 30, 2011.

Under the CR, funding for the GWI program administered by the CDMRP reportedly would be retained at the FY10 funding level of $8 million.

Thirty-five House Democrats sided with 171 House Republicans in voting against the CR, while Eight Democrats and eight Republicans did not vote. This deep division suggests that future prospects for a final omnibus appropriations bill after Senate and conference action may also be challenging.

Senate

The Senate appropriations committee’s FY11 Defense appropriations act report language, which provides detailed funding by line item, directs $8 million for the Peer Reviewed Gulf War Illness Research Program.

The funding was requested in a letter by Senators Sanders, Bond, Feingold, Kerry, Tester, Schumer, Leahy, Durbin, Burris, Brown, Boxer, Snowe, and Kohl.

The Senate bill passed out of committee on September 16, 2010 by an 18-12 vote. Like all the other FY11 appropriations bills, the defense appropriations bill was not considered by the full Senate. However, it may very well remain a guide for future Senate action as discussed below.

Under the report accompanying the Senate bill, total appropriations for the military medical research programs currently operated by the CDMRP would be $358 million. In addition to the GWI appropriation, $150 million would be designated for peer reviewed research on breast cancer, $10 million for ovarian cancer, $80 million for prostate cancer, $60 million for psychological health and traumatic brain injury (TBI), and $50 million for the multifaceted peer reviewed medical research program (PRMRP).

FUTURE PROSPECTS

It is currently expected that the Senate will combine the House’s CR into a Senate omnibus appropriations bill. Any action must be completed by the end of the current Congress on January 3, 2011.

Additionally, the FY11 National Defense Authorization Act (NDAA) remains an unknown variable in the legislative equation. It remains unclear whether or not the NDAA will pass before the current Congress ends and what impact, if any, an enacted NDAA might have on the CDMRP’s GWI research program.

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


Looking Back at Last Year: Who to Call

Last year, retaining funding for the Gulf War Illness research program was, as usual, extremely challenging for the handful of veterans advocates and organizations involved.

Initially, the Senate version of the FY10 Defense Appropriations Act lumped Gulf War Illness under the Peer Reviewed Medical Research Program (PRMRP), a catch-all that included more than two dozen conditions including GWI and funded at just $50 million. While the PRMRP restricts research to the listed conditions, there is no guarantee that research will be funded for any particular condition from among those listed.

Initially, the House failed to include funding for the GWI program at all.

However, as the bill went back and forth between the House and Senate, advocacy efforts resulted in amendments to the final bills in both chambers and final FY10 GWI funding at $8 million.

A last minute save on October 1, 2009 by Sen. Bernie Sanders (I-Vt.) and four of his colleagues amended (SA 2559) the Senate’s bill to include an amendment that would have appropriated $12 million for the GWI program. Those Senators included Robert Byrd (D-W.Va.), Russ Feingold (D-Wis.), Dick Durbin (D-Ill.), and Sherrod Brown (D-Oh.).

And, a December 11, 2009 letter by Rep. Dennis Kucinich (D-Oh.) and 25 other Members of Congress called for the conference committee to fund the CDMRP’s GWI research program at the Senate’s $12 million level.

Ultimately, the conference committee set final funding for the FY10 GWI program at the original, lower House level of $8 million. Both the House and Senate agreed and the final Defense funding bill was enacted by the President.

GWI research supporters Sanders, Durbin, and Brown remain in the Senate.

However, Byrd died on June 28, 2010 and is being succeeded by former West Virginia Governor Joe Manchin (D-W.Va.). Feingold was defeated in the November 2010 election and is being succeeded by Ron Johnson (R-Wis.), a Tea Party favorite.

GWI research funding supporters who signed onto the December 2010 Kucinich letter included the following. Of the 21 who remain in Congress, only four are Republicans, who will hold the majority in the House beginning January 3, 2011.  

• Rep. Tammy Baldwin (D-Wis.)
• Rep. Shelley Berkley (D-Nev.)
• Rep. John Boccieri
• Rep. Corrine Brown (D-Fla.)
• Rep. Henry Brown, Veterans’ Affairs Health Subcommittee Ranking Member
• Rep. Dan Burton (R-Ind.)
• Rep. Steve Buyer, House Veterans’ Affairs Committee Ranking Member
• Rep. John Conyers, Jr. (D-Mich.)
• Rep. Bob Filner (D-Calif.), House Veterans’ Affairs Committee Chair
• Rep. Charlie Gonzalez (D-Tex.)
• Rep. Raul Grijalva (D-Ariz.)
• Rep. Luis Gutierrez (D-Ill.)
• Rep. John Hall
• Rep. Rush Holt (D-N.J.)
• Rep. Dennis Kucinich (D-Oh.)
• Rep. Steve LaTourette (D-Oh.)
• Rep. Frank LoBiondo (R-N.J.)
• Rep. Jim McGovern (D-Mass.)
• Rep. Michael Michaud (D-Maine), Veterans’ Affairs Health Subcommittee Chair
• Rep. Gwen Moore (D-Wis.)
• Rep. Collin Peterson (D-Minn.)
• Rep. Mike Quigley (D-Ill.)
• Rep. Janice Schakowsky (D-Ill.)
• Rep. Patrick Tiberi (R-Oh.)
• Rep. Timothy Walz (D-Minn.)
• Rep. Don Young (R-Alaska)

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

FY11 PRMPR

PRMPR research areas in the Senate bill would include the 32 conditions listed below. Four that are particularly relevant to Gulf War veterans are highlighted. The House CR would retain the list the same as in FY10. It should be noted that the final outcome remains indeterminate.

1. amyotrophic lateral sclerosis (ALS),
2. autism,
3. blood cancer,
4. chronic fatigue syndrome,
5. chronic migraine and post-traumatic headache,
6. dental research,
7. drug abuse,
8. epidermolysis bullosa,
9. epilepsy,
10. fragile x syndrome,
11. inflammatory bowel disease,
12. interstitial cystitis,
13. kidney cancer,
14. lupus,
15. melanoma,
16. mesothelioma,
17. multiple sclerosis (MS),
18. neuroblastoma,
19. neurofibromatosis,
20. osteoporosis and related bone disease,
21. Paget's disease,
22. pancreatitis,
23. Parkinson's,
24. pediatric cancer,
25. pheochromocytoma,
26. polycystic kidney disease,
27. post-traumatic osteoarthritis,
28. scleroderma,
29. social work research,
30. tinnitus,
31. tuberous sclerosis complex, and
32. vision research.

----------------
SOURCES:

§ FY11 House Continuing Resolution (CR) for combined FY11 appropriations: H.R. 3082 [Would fund GWIRP at $8 million]

§ Senate FY11 Defense Appropriations Act, S. 3800 [Would fund GWIRP at $8 million]

§ Senate FY11 Defense Appropriations Act Committee Report, S. Rpt 111-295 [Would fund GWIRP at $8 million]

§ FY10 National Defense Authorization Act (NDAA), PL 111-84 [Authorized GWIRP at $12 million]

§ FY10 Defense Appropriations Act Explanatory Statement (essentially the conference report), p. 367 [Funded GWIRP at $8 million]

VA Proposes Rule Change to Ensure Total Disability Benefits for All Veterans with ALS

Public Comments must be received by July 23

Graphic:  What is ALS?  Courtesy Huntsville Times

(91outcomes.com) - The U.S. Department of Veterans Affairs (VA) has announced that it proposes to amend its Schedule for Rating Disabilities by revising the evaluation criterion for amyotrophic lateral sclerosis (ALS) to provide a 100-percent evaluation for any veteran with service-connected ALS. 

According to VA, this change is necessary to adequately compensate veterans who suffer from this progressive, untreatable, and fatal disease. VA says this change is intended to provide a total disability rating for any veteran with service-connected ALS.

Comments must be received on or before July 23, 2010.

Written comments can be submitted:

• ONLINE
• FAX:  (202) 273-9026
• MAIL/HAND-DELIVERY – Deliver to:  Director, Regulations Management (02REG), Department of Veterans Affairs, 810 Vermont Ave., NW., Room 1068, Washington, DC 20420

Comments should indicate that they are submitted in response
to ``RIN 2900-AN60-Schedule for Rating Disabilities; Evaluation of Amyotrophic Lateral Sclerosis.''

VA proposes to amend its Schedule for Rating Disabilities (38 CFR part 4) by revising the evaluation criterion for ALS under diagnostic code 8017 in Sec.  4.124a, the schedule of ratings for neurological conditions and convulsive disorders. Currently, the schedule provides only a single criterion for ALS, a minimum disability evaluation of 30 percent. VA proposes to remove this criterion and replace it with a minimum disability evaluation of 100 percent. The Secretary has authority to make this amendment pursuant to 38 U.S.C.
1155.

ALS, also known as Lou Gehrig's disease, is a motor neuron disease that results in muscle weakness leading to a wide range of serious disabilities, including problems with mobility. It often affects the muscles that control swallowing, leading to the possibility of aspiration (the inspiratory sucking of fluid into the airways) and pneumonia. It eventually paralyzes the respiratory muscles, and the most common cause of death in ALS is respiratory failure. ALS is a terminal illness; the life expectancy of a person with ALS ordinarily ranges from about 3 to 5 years after diagnosis. Fifty percent of patients die within 3 years of diagnosis, about 20 percent live 5 years, and 10 percent survive for 10 or more years.

ALS is rated under 38 CFR 4.124a, diagnostic code 8017, which currently provides a minimum disability evaluation of 30 percent. However, the guidelines in 38 CFR 4.120 (Evaluations by comparison) direct that disability from neurologic conditions be rated in proportion to the impairment of motor, sensory, or mental function.

Therefore, any level of evaluation, including 100 percent, can currently be assigned for ALS under diagnostic code 8017. However, individuals with ALS have a rapidly deteriorating course of illness and quickly reach a level of total disability. Providing a 100-percent evaluation in all cases would obviate the need to reassess and reevaluate veterans with ALS repeatedly over a short period of time, as the condition worsens and inevitably and relentlessly progresses to total disability. Therefore, VA proposes to change the minimum
evaluation for ALS from 30 to 100 percent. Although ALS may not be totally disabling at the time of diagnosis or when VA compensation is claimed for the condition, ALS is a seriously disabling, rapidly progressive, untreatable, and fatal condition.

VA's schedule of ratings for neurological conditions and convulsive disorders provides a 100-percent disability evaluation for certain other motor neuron diseases that progressively lead to disability or death. See 38 CFR 4.124a, Diagnostic Codes 8005 (Bulbar palsy), 8105 (Sydenham's chorea of the ``progressive grave type''), and 8106 (Huntington's chorea). Given that ALS is a rapidly progressing neurodegenerative disease and that many of its disabling effects are similar to other neurological disorders that VA rates at 100 percent, VA proposes to compensate veterans with ALS similarly. The 100-percent rating would ensure that veterans with ALS are evaluated adequately and would eliminate any delay in reaching an appropriate level of compensation as their disease rapidly progresses.

In addition, VA proposes to add a note to consider the need for special monthly compensation (SMC), which VA says will be quite a common need in these veterans.

Copies of comments received will be available for public inspection in the Office of Regulation Policy and Management, Room 1063B, between the hours of 8:00 a.m. and 4:30 p.m., Monday through Friday (except holidays). Please call (202) 461-4902 (this is not a toll-free number) for an appointment.

In addition, during the comment period, comments may be viewed online through the Federal Docket Management System (FDMS) at http://www.regulations.gov/search/Regs/home.html#docketDetail?R=VA-2010-VBA-0021, and on the page, select “Public Submissions” as the only selection.

FOR FURTHER INFORMATION CONTACT: Thomas J. Kniffen, Chief, Regulations Staff (211D), Compensation and Pension Service, Veterans Benefits Administration, U.S. Department of Veterans Affairs, 810 Vermont Ave., NW., Washington, DC 20420, phone: (202) 461-9725. (This is not a toll-free number.)

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

For more information on ALS:

• Treatment for Amyotrophic Lateral Sclerosis (ALS) / Lou Gehrig's Disease
• Mayo Clinic:  ALS Complications
• NINDS Fact Sheet on ALS 

CNN: VA to Apologize for Mistaken ALS Disease Notifications

Written by Ashley Hayes, CNN

(CNN) -- The Department of Veterans Affairs said Wednesday it will apologize to veterans who were mistakenly told they'd been diagnosed with a fatal neurological condition.

Letters were sent last week to 1,864 veterans and survivors, the VA said in a written statement. They were supposed to be sent to veterans with ALS -- also known as Lou Gehrig's disease -- to keep them apprised of expanding benefits eligibility.

"According to the records of the Department of Veterans Affairs (VA), you have a diagnosis of amyotrophic lateral sclerosis (ALS)," said the letter, according to the National Gulf War Resource Center. "This letter tells you about VA disability compensation benefits that may be available to you."

But some who received the letters, like Brent Casey, do not have ALS. Casey, a disabled Army veteran from the first Gulf War, told CNN that when he received the letter, he was "just completely beside myself. Just floored. Went into a complete and total meltdown. I couldn't speak, couldn't -- I guess I was, truthfully, speechless."

After hearing from veterans who received the letter but do not have ALS, the VA immediately began reviewing individual claims files for all the recipients to determine who received the letter by mistake, agency spokeswoman Katie Roberts said in the statement. "VA employees are personally contacting these individuals to ensure they understand the letter should not be confused with a medical diagnosis of ALS, explain why they mistakenly received the letter and express VA's sincere apologies for the distress caused by this unfortunate and regrettable error."

"It's not right for it to happen this way," Casey said. "Regardless if it was the case that I was diagnosed with ALS, that would be the worst possible way for an organization to let an individual know."

Upon receiving the letter, some veterans sought a second opinion outside the VA, according to veterans' service organizations, paying for doctors' consultations out of their own pockets. The VA said it will reimburse those veterans for the costs.

In addition, the VA said it is reviewing its notification process to make sure a similar error doesn't happen again.

The AmVets service organization is "encouraged" by the VA's response to the situation, and pleased to see they caught the error, said spokesman Ryan Gallucci.

================================
According to the VA:

STATEMENT:

Last September the Secretary of Veterans Affairs made amyotrophic lateral sclerosis (ALS) a presumptively compensable illness for all Veterans with 90 days or more of continuous active service in the military. As a result, the Department of Veterans Affairs (VA) can now pay disability compensation to Veterans with ALS. Their survivors are also eligible for VA benefits.

In an effort to provide Veterans this new and much-needed support, VA sent notification letters to Veterans with ALS advising them of their potential eligibility for disability compensation benefits. On August 13, 2009, VA sent outreach letters to 1,864 Veterans and survivors across the country. Unfortunately, VA made a coding error and a number of Veterans who should not have received this letter did. The Department is reviewing individual claims files for all the recipients of this letter to identify those who received it by mistake.

VA employees are calling Veterans and survivors to ensure that they understand the purpose of the letter, explain why they mistakenly received the letter, and express VA’s sincere apologies for the distress caused by this unfortunate and regrettable error.

Q & A:
 

Q: How many Veterans have been affected?

A: Approximately one third of the letters VA sent were miscoded.

Q: Will VA be issuing a formal apology?
A: Yes, the Department is calling all affected Veterans and will also be issuing them a formal letter of apology.

Q: Why did Veterans who do not have ALS get letters?

A: VA used data and information from its data base to identify Veterans diagnosed with ALS or who had filed a claim for ALS, but were not currently receiving disability compensation benefits for the condition. However, as a result of problems in the codes VA used to identify these Veterans, VA sent the letter to some Veterans who do not have ALS.

Q: What is VA doing to correct the mistake?

A: We are working to identify the specific problems that caused the misidentification of Veterans records. We will ensure any future data extracts for similar outreach purposes are properly formulated and independently validated to prevent these types of problems in the future.

Q: Will Veterans be reimbursed for medical expenses incurred?
A: VA will reimburse Veterans who incurred expenses for medical evaluations conducted as a result of receiving an erroneous notification.

Q: What will VA do to prevent this from happening again?

A: As a result of this incident, VA is creating a more rigorous process that includes thorough and careful screening of the data, comprehensive review and approval process that will include involvement from our stakeholders before release of notifications letters.

WRAL-TV: N.C. Gulf War Veteran Among those who Receive VA's Errant ALS Letter

Written by Beau Minnick, WRAL-TV, Raleigh-Durham-Fayetteville, N.C

Web Editor: Kathy Hanrahan

(Henderson, N.C. - August 26, 2009) — Former Army Sgt. Samuel Hargrove, of Henderson, remembers the feeling he got when he opened a letter on Sunday from The U.S. Department of Veterans Affairs. It was a notification that he had been diagnosed with Lou Gehrig's disease.

“It really felt like the weight of the world had fallen upon my soul,” Hargrove said. “I started crying and wondering why no one had ever told this to me before.”

Like some other Gulf War veterans, Hargrove, 42, has some neurological problems. He suffers from chronic fatigue, fibromyalgia and narcolepsy.

After talking with other veterans in a resource center and online, Hargrove discovered he was among a group of veterans who received the letters erroneously.

With all the other symptoms he has, now Hargrove questions whether he has ALS, too. He wants the VA to pay for a test.

“I don’t want to see anyone else go through this kind of suffering from a mistake again,” Hargrove said.

VA spokeswoman Katie Roberts said the agency will individually apologize to those veterans who received the letters in error.

The veterans also will receive an explanation about how "this unfortunate and regrettable error" occurred and reassurances that the letters do not confirm diagnoses of the fatal neurological disease, she said. Roberts did not say whether the agency has determined how the error occurred.

VA employees were still thumbing through case files, trying to determine exactly how many veterans mistakenly received letters intended to inform sufferers of ALS, or Lou Gehrig's disease, of benefits available to them or surviving spouses and children.

"We understand we made a mistake," Roberts said. "We had every good intention.”

Roberts said the VA mailed more than 1,800 letters last week and has been notified by fewer than 10 veterans who received the letters in error. However, a Gulf War veterans group that provides information, support and referrals about illnesses to military members estimates at least 1,200 veterans received the letters by mistake.

Denise Nichols, vice president of the National Gulf War Resource Center, said panicked veterans in at least a dozen states have contacted her group.

ALS is a rapidly progressive disease that attacks the nerve cells responsible for controlling voluntary muscles. It is usually fatal within five years.

Veterans like Hargrove and former Air Force reservist Gale Reid in Montgomery, Ala., were initially suspicious of the letters, but went through the pain of not knowing whether they had ALS.

Reid said she incurred about $3,000 worth of medical expenses securing a second opinion from a civilian doctor. Reid hopes the VA will pay for the tests, but Roberts said she had to check on any reimbursements.

Jim Bunker, president of the veterans group, said someone at the VA told him the mistake was caused by a coding error in which veterans with undiagnosed neurological disorders were inadvertently assigned the code for ALS. The VA uses more than 8,000 codes for various diseases and illnesses, he said.

WATCH VIDEO
Local vet gets errant notice of ALS

USA Today: Health scare sent to 1,800 veterans

Written by William M. Welch, USA TODAY
Contributing: Alan Gomez in McLean, Va.

(August 24, 2009) - More than 1,800 Gulf War veterans were sent letters from the Veterans Administration this month informing them that they had Lou Gehrig's disease — a fatal neurological disease.

But at least some of the letters — and the diagnoses — were a mistake.

Jim Bunker, president of the National Gulf War Resource Center, said VA officials told him the letters dated Aug. 12 were the result of a computer coding error that mistakenly labeled the veterans with amyotrophic lateral sclerosis, or ALS.

Katie Roberts, a spokeswoman for the VA, said the letters were simply to inform veterans with ALS of disability compensation available to them and were not intended to deliver a medical diagnosis of ALS.

Roberts said the administration has since been contacted by a "small number" of people who did not believe they had ALS. Veterans Administration officials are now reviewing all the cases, Roberts said.

For those who were sent the letters in error, Roberts said, VA officials are personally contacting the recipients to "express VA's sincere apologies for the distress caused by this unfortunate and regrettable error."

Bunker said the letters informed recipients that the ALS diagnosis made them 100% disabled, meaning they were entitled to about $2,700 a month, with additional money for children and spouses.

Although some may view that sought-after 100% designation as a welcome benefit, Bunker said, being diagnosed with a disease that generally kills people within five years far overshadowed any monetary gains.

"The vast majority saw it as bad," he said.

Brent Casey served as an Army medic in the 1991 Gulf War and suffers from post-traumatic stress disorder and chronic fatigue syndrome.

He has already been classified 100% disabled by the VA, but is working toward a master's degree in business in Louisville. He also volunteers at the local VA.

When Casey's mother called and read him the letter, the 41-year-old thought he had just been read a "death sentence."

"By volunteering at the VA, I've learned a lot of these illnesses. So I knew firsthand what that meant for me," Casey said. "I just had a total meltdown."

Casey learned that the letter was a mistake after making calls to the VA. But he now worries about the veterans who have received the letter and have yet to be contacted about the mistake.

"My concern is, what about the guy who's been on vacation, and he comes home to find this letter this evening?" Casey said. "We need to get the word out to these guys."

VA Error Leads to ALS Notification Letters

Editor's Note:  The following correspondence has been circulating rapidly in the U.S. Gulf War community today.

The first is an email from disabled West Virginia Gulf War veteran Brent Casey, who is among about 1,200 veterans inadvertently notified by the VA's Huntington, West Virginia Regional Office that they have ALS -- a terminal neurodegenerative disorder -- when in fact they do not have the disease.

The second is an email issued by Veterans for Common Sense regarding the situation.

===============

From: Brent Casey

To: undisclosed recipients

Sent: Friday, August 21, 2009 5:43 PM

Subject: Brent Casey diagnosed with ALS (Lou Gehrig’s Disease), by mistake ?? !!

I do not have ALS ! The first thing I would like to do, is say "THANK YOU" to my wonderful, wife, mother, aunt, and grandfather for their very powerful prayers ! As many of you know, I received a letter on Wednesday afternoon, 19 Aug. 2009, from the VA Regional Office in Huntington, WV; stating , "according to records of the Department of Veterans Affairs (VA), you have a diagnosis of amyotrophic lateral sclerosis (ALS) " The letter was signed by Joseph R. Beadoin, Veterans Service Center Manager.

As you can imagine, but I am not sure you can, I had the most horrific, incredible melt-down, nervous-breakdown, uncontrollable sobbing fit, I have ever had in my life ! I realized at that moment, I had been delivered a "DEATH NOTICE" by the Post Office ! Unfortunately for me, I had done extensive investigation of ALS and it's rapidly progressive, invariably fatal neurological symptoms/disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles.. Some people say it is the most cruel disease that a person can contract because it slowly deteriorates the entire body, while the mind stays healthy. As I sobbed to my mother over the phone, "there is no cure, it is a DEATH SENTENCE, and I will be dead in 3-5 years !".

At this point, it was too late to call the VA Office, so, after an extremely, restless, sleepless, night, I called the Director's Office at the Huntington RO, at 8:00 a.m. Sharp !
I asked for and spoke to Mr. David Allen right away, and explained the letter and that I was incredibly upset, to say the least. He took some brief notes and asked to call me back shortly. At about 10:00 a.m., Mr Allen called back and stated that, he had put the VA into an EMERGENCY MODE OF OPERATION in order to locate my file and try to get to the bottom of the situation, but, after reading through my file, he had no explanation yet.

Later that afternoon, I spoke to Mr. Allen, once again. By this time, my mother had delivered the letter to the Regional Office, and left a copy for their examination. Mr. Allen had the letter and was looking at it but still had no explanation and was in obvious disbelief, himself.

About 2:00p.m., Mr Allen called me again. He stated that there was no way possible to express enough apology to make up for the extreme mental anguish that this had caused me, nor, the emotional trauma that I must have experienced, but he did apologize greatly. He said, the whole thing is just a huge mix-up and an error on the part of the VA. He stated that in 2006, I had filed a claim for neurological damage due to Gulf War Illness and it was given the wrong diagnostic code, which has since been given to ALS. Subsequently, myself, along with about 1200 other Veterans, were sent this letter by mistake.

I told Mr. Allen, that I would try to find a way to understand how this could happen, but my biggest concern is for those other 1200 who are not having this conversation and getting this explanation ! My question is, "What about those guys?"

I spoke to my Primary Care doctor over the phone today after she had reviewed my entire record in detail, and she has assured me that there is no way possible I have ALS; I have a negative Brain Scan MRI, and a negative EEMG test. PRAISE THE LORD ALMIGHTY !!!!!

I would like to ask those of you that read this, Please do whatever you can to get the word to those other 1200 veterans, and please write a letter to the Director of your local VA, to get assurance that these types of diseases or disorders are NOT delivered to the Veteran by the Post Office. Our VA System is better than that, and they know the appropriate way these type cases should be handled.

Respectful and Grateful,


Brent Casey
100% Disabled American Veteran


===============================

August 22, 2009
Dear VCS Members,
Yesterday, VA Central Office in Washington, DC was notified by Veterans for Common Sense about highlly unusual letters sent by the Veterans Benefits Administration (VBA) regional offices to an unknown number of veterans. The VA letters, dated within the past two weeks, advised some veterans they had ALS – amyotrophic lateral sclerosis, a serious disease that is often fatal - when the veteran did not have ALS. The letter caused enormous grief and distress among veterans, several of whom then contacted Veterans for Common Sense.
VA Central Office is now investigating the incident.
Several of my fellow Gulf War friends died from ALS, and this issue is near and dear to my heart. I fully understand the enormous anxiety the VA letters may have caused many veterans and their families.
The first thing VA must do is stop sending these mistaken letters. I hope VA apologizes for the letters sent to veterans who were not diagnosed with ALS. VA appears to have sent the letter with the good intent of notifying veterans about a new regulation expanding disability compensation benefits to veterans diagnosed with ALS. VA had previously denied most ALS claims until new scientific evidence linked ALS with military service, especially among Gulf War veterans. To learn more about VBA disability compensation for ALS, please read this September 23, 2009, VA press release.
I would ask that we direct our efforts toward working with VA so VA will stop sending more erroneous letters and resolve the situation. VA should apologize to veterans and their families. VA should try to figure out how this mistake happened so it does not happen again. Some veterans wrote and said they sought medical care and incurred expenses with private doctors – and VA should pay for those expenses apparently caused by VA’s mistaken letter. And finally, a medical professional with experience dealing with ALS patients should have read the letter before it went out, since the tone of the letter was rather stark, ominous, and inappropriate.
So let’s give VA a day or two to figure out how to resolve this issue. I’m asking for calm among veterans and advocates for a few days over the weekend so VA can investigate the situation and respond in the best interests of our veterans and their families clearly shaken by the letters.
Please share our VCS e-mail with our fellow veterans, especially Gulf War veterans and ALS mailing lists. VCS will post additional information as it become available. The text of the letter appears below.
Thank you, Paul.
Paul Sullivan

Executive Director

Veterans for Common Sense

Post Office Box 77304

Washington, DC 20013

(202) 558-4553

Paul@VeteransForCommonSense.org

www.VeteransForCommonSense.org

===========================
Veterans Benefits Administration Letter
August 11, 2009
Department of Veterans Affairs
[Location Redacted]
[Name and Address of Veteran Redacted]
According to records of the Department of Veterans Affairs (VA), you have a diagnosis of amyotrophic lateral sclerosis (ALS). This letter tells you about VA disability compensation benefits that may be available to you.
Service-Connected Disability Compensation for ALS
VA published a new regulation, 38 CFR 3.318, that provides the development of ALS at any time after military discharge may establish service connection for that disease if the veteran had active, continuous service of 90 days or more. Because of your diagnosis of ALS, you may be entitled to compensation from VA. There are no provisions for payment of benefits prior to September 23, 2008, which is the effective date of the regulation.
How to Apply for Disability Compensation
You can apply online (http://vabenefits.vba.va.gov/vonapp) or submit VA Form 21-526, Veterans Application for Compensation and/or Pension, to your nearest VA regional office. The form is available from VA's website (http://www.va.gov/vaforms) or by calling the toll-free number below.
If you previously applied for compensation, you can reopen your claim by submitting a written request (a new application form is not required) to the VA regional office. Be sure to include your full name, VA file number, and/or your Social Security number.
For more information or to request an application, call toll-free, 1-800-827-1000. (The Telecommunications Device for the Deaf number is 1-800-829-4833.) You may also visit VA's website (http://www.va.gov/) or send an electronic inquiry (https://iris.va.gov/).
Sincerely,
[Name Redacted]
VETERANS SERVICE CENTER MANAGER

===========================

ALS Claims Yet Another Gulf War Veteran -- Still no Effective Treatments

Written by Anthony Hardie, 91outcomes

(91outcomes.blogspot.com) -- Published today in select news outlets in the U.S. and the Arabian Gulf States, Philadelphia Inquirer columnist Harold Jackson writes a powerful commentary and eulogy of Homer Pledger, Jr. -- a former Army Staff Sergeant and yet another veteran of the 1991 Gulf War to die from ALS (Lou Gehrig's Disease).

As Jackson notes, ALS is an incredibly cruel neuro-degenerative disease, with its ever-encroaching paralysis that leaves its victims to finally suffocate in a few short years, in full awareness of what is happening to them.

Testifying before Congress in July 2007, retired U.S. Air Force Brigadier General Thomas "Mick" Micolajcik told an enrapt audience in the U.S. House Committee on Veterans' Affairs hearing room of his personal experiences suffering from ALS, and calling for treatments.

General Mick's poignant testimony included the following:

"Military veterans, like me, face a higher risk of this relentless killer [ALS].

"50 percent die in one to three years, another 20 percent die within five years and only 10 percent may live to 10 years.

"It was learned in 2001 that Gulf War veterans have two times the incident rate of the general population..."

General Mick then went on to pointedly address the stunning facts that federal agencies only "dabble" in ALS research, there is no one entity in charge of ALS research, there is no existing strategic plan for ALS research, and there has been only one drug developed in the last 70 years and it is of questionable value.

None of us who met him could ever forget General Mick and his valiant efforts on behalf of his fellow veterans -- but I am afraid that Congress has already forgotten him, and the rest of us Gulf War veterans.

It is true that in November 2008, the federal VA finally granted "presumptive service-connection" for U.S. military veterans with ALS, just a week after being informed of research regarding ALS in Gulf War veterans that was presented to the Congressionally-mandated Federal Research Advisory Committee on Gulf War Veterans' Illnesses.

However, like the rest of Gulf War veterans suffering from Gulf War illness, no new treatments have been developed to help ALS victims, no new strategies have been implemented, and funding for new Congressionally Directed Medical Research focused on treatments for ALS and Gulf War Illness continues to be at the bottom of Congress' spending pile.

How much must our veterans and their families suffer before Congress moves to implement the recommendations made to its members on July 26, 2007?

Philadelphia Inquirer Photos: http://www.philly.com/inquirer/gallery/20090419_A_soldier_s_last__valiant_fight.html

Researchers probe geographical ties to ALS cases among 1991 Gulf War veterans

Contact: Monte Basgall
monte.basgall@duke.edu
919-681-8057
Duke University

June 6, 2008

DURHAM, N.C. -- Researchers from Duke University, the University of Cincinnati (UC) and the Durham Veterans Administration Medical Center are hoping to find a geographical pattern to help explain why 1991 Gulf War veterans contracted the fatal neurological disease amyotrophic lateral sclerosis (ALS) at twice the normal rate during the decade after the conflict.

By layering military records of troop locations onto Gulf-area maps, "we've found there were some areas of service where there appears to be an elevated risk," said Marie Lynn Miranda, an associate professor at Duke's Nicholas School of the Environment whose group uses geographic information systems (GIS) to study environmental health problems.

Also known as Lou Gehrig's Disease because it crippled and ultimately killed that baseball great in 1941, ALS causes cellular degeneration in the central nervous system. Its cause is unknown.

"There are no reports on the occurrence of ALS among veterans of other conflicts," the researchers wrote. "There is only a single report that suggests ALS may arise from environmental exposures associated with military service, per se." The cases assessed by Miranda and her colleagues occurred within a group of people who are expected to be at low risk for ALS, because they're mostly under the age of 45.

Miranda is the first author of a report on an initial analysis now published online in the research journal NeuroToxicology. The work was funded by the Department of Veterans Affairs Cooperative Studies Program.

The report's senior author is Ronnie Horner, professor and director of the department of public health at Cincinnati, who led research that first documented twice-normal ALS rates among vets of the first Persian Gulf War in an article published in the September 2003 issue of the journal Neurology.

Horner's group is now assessing possible exposures vets might have had in the Gulf region that could explain the higher ALS rates its 2003 study found.

"As one of the largest contemporary set of cases, it presents a real opportunity to identify clues as to the cause of ALS not only for veterans of the first Gulf War but, perhaps, for ALS generally," Horner said. UC researchers are coordinating their investigations with those of researchers at the Durham, N.C. Veterans Medical Center and nearby Duke Medical Center.

Another UC-led study, published in the July 2008 issue of the journal Neuroepidemiology, found that the risk for developing ALS has now decreased among 1991 Gulf War vets. That suggests that the cause or causes of the ALS had something to do with their deployment in the region between August 1990 and July 1991.

Of the 135 cases diagnosed among the vets within 11 years after the war, only three had a family history of the disease. The small numbers might indicate that there is an environmental cause for ALS, the authors added.

"In the one-year period of military operations, some deployed military personnel experienced numerous exposures to multiple, potentially neurotoxic agents," Miranda and coauthors wrote in the new report. "If the array of possible candidate environmental exposures could be reduced, it may be possible to identify or at least focus inquiry on specific potential causative agents."

To narrow down the possibilities, Miranda and fellow investigators used GIS analysis, which allows researchers to layer different kinds of information onto maps to deduce potential risks.

They began by searching Department of Veterans Affairs and Department of Defense records as well as other sources to identify military personnel diagnosed with ALS after 1991. Department of Defense data also allowed the researchers to identify the military units these veterans with ALS served in during their deployment to the Persian Gulf region.

In a separate analysis, the researchers identified troop units known to have been exposed to emissions from a munitions storage area at Khamisayah, Iraq. Those munitions were destroyed by U.S. forces in March 1991, and a United Nations commission later found many rockets there had been loaded for chemical warfare.

A previous Defense Department modeling study deduced that "some 90,000 veterans may have been exposed to low levels of nerve agent" at Khamisayah, the new report said.

The GIS mapping revealed that "there were some areas where there appeared to be an elevated risk," Miranda said. To narrow down the possibilities, she and co-investigators then used statistical methods that assess the "best guess about the likelihood that space matters" for each grid of Gulf territory, she added.

Applying those statistics, the likelihood of a spatial connection with ALS development "climbed as high as 91 percent" in some grid cells, she said, most notably in a region southeast of Khamisayah. But Miranda cautioned that she will need to do additional analyses that add "time" to "place" before she can be more specific.

For instance, the researchers will want to know whether the ALS victim's units were in the path of emissions from Khamisayah on a specific day. Miranda and her colleagues are also interested in examining environmental exposures that may be associated with smoke plumes from oil well fires.

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Other authors of the new NeuroToxicology report include Miranda's Nicholas School colleagues M. Alicia Overstreet Galeano and Eric Tassone as well as Kelli Allen, a research health scientist at the Durham VA Medical Center and a Duke assistant research professor of medicine.