ALS

[pwrslm]

Hello,

I have been (finally) diagnosed with ALS by the VA. Started getting symptoms in 2015, by 2017 I figured out that the VAMC was not interested in diagnosing those symptoms that were progressing, so I had to go to a non-VA specialist. It took 2 years but in 2019 I was diagnosed w/ALS. VA dragged its feet, and finally in 2021 (after almost 6 years) verified the diagnosis. I have learned a lot about ALS in the meanwhile. 
The PVA rep told me that the VA has been refusing to allow SC for Vets if the diagnosis they presented was less than definite ALS. Seems odd because people with possible and probable ALS die and never progress to the definite diagnosis. Started researching this and learned that the possible/probable/definite diagnosis was for research and entry into clinical trials. Found a professional opinion from 22 top specialists in ALS that stated as a matter of fact, all three diagnosis were in fact ALS to a high degree of diagnostic certainty. I submitted that along with several other attachments in a supplementary claim after I was denied last Nov 2020. 

 

My concern is that there may be dozens of Vets with ALS that were denied service connection based on the erroneous criteria. Am attaching a few documents that may help others if they run into this situation. Hope it helps.

6 A proposal for new diagnostic criteria for ALS.pdf 7 World Federation of Neurology Vol 35 No 4 Oct Nov 2020.pdf 8-Neurology Live peer exchange APR 2021.pdf

[broncovet]

Your's is a great example of how the VA often "does NOT" give Vets the benefit of the doubt.  

In other words, if the doc. said it was "at least as likely as not" that your symptoms were ALS, that should suffice.  

You posted:

Quote

The PVA rep told me that the VA has been refusing to allow SC for Vets if the diagnosis they presented was less than definite ALS

Ask your PVA rep to show you the regulation that permits Va to deny you because the doc was "only 51 percent certain" the diagnosis was ALS.  Indeed, the regulation call for VA to give the Veteran the benefit of the doubt.  The doctor need only say that its at least as likely as not the diagnosis is ALS.  

Ask the PVA rep to show you court cases, or the VBM, where Vets were denied because the Doc opined his diagnosis was "at least as likely as not" correct.  

VA, however, is anal about nexus with the terms "could be ALS" or "may be ALS" or even "probably is ALS".  It needs to be in words they understand and search for, which is "at least as likely as not".  

[Berta]

I certainly agree that, since ALS became Presumptive for EVERY Veteran, many veterans would have a hard time with VA and many probably never even know that ALS is presumptive to ALL veterans.

This is some info- we have more here-

"VA Provides Benefits to Veterans with ALS and Families
Military veterans, regardless of the branch of service, the era in which they served, or whether they served during a time of peace or a time of war, are at a greater risk of dying from ALS than if they had not served in the military.  For reasons as yet unknown, veterans are, in fact, twice as likely to be diagnosed with ALS as the general population.
In 2008, the Department of Veterans Affairs (VA) implemented regulations to establish a presumption of service connection for ALS, thanks to the efforts of The ALS Association, key members of Congress, and advocates.  Under the regulations, the VA presumes that ALS was incurred or aggravated by a veteran’s service in the military.  As a result, veterans with ALS and their families and survivors are eligible for “service connected” benefits.
Anyone who served at least 90 days of continuous active duty in the U.S. military may qualify for VA benefits.  Survivors of veterans may be eligible for benefits, including monthly compensation, regardless of when their loved one was lost to the disease.
Qualifying veterans with ALS are entitled to receive VA disability compensation, which is a monetary benefit paid to veterans who are disabled by an injury or disease that was incurred or aggravated during active military service.  Disability compensation is paid monthly and varies with the degree of disability and the number of veteran’s dependents. Veterans with ALS may be eligible for additional special monthly compensation.  There is a minimum 100 percent disability rating for veterans diagnosed with ALS.  These benefits are not subject to federal or state income tax.  Tables listing current compensation levels are available at: http://www.vba.va.gov/bln/21/Rates/."

source: http://web.alsa.org/site/PageServer?pagename=va_provides_benefits

I bet many reps reps and VSOs still do not know ALS is presumptive.

I will go over the info you gave us very carefully----
 

 

[Berta]

We had a PLS vet here - as a possible ALS variant and  a DIC ALS widow and also there is more info here on ALS variants:

 

https://www.index.va.gov/search/va/bva_search.jsp?QT=ALS+variant&DB=2016&DB=2017&DB=2018&DB=2019&DB=2020&DB=2021&RS=11

 

This was an old search I did at the BVA, but will try to update it if that will give more info.

 

[broncovet]

A diagnosis is a "finding of fact" made by a competent physician.  Neither the BVA, nor the CAVC, nor a rating specialist at the VARO is allowed to substitute their own unsubstantiated opinion for the opinion of a competent medical professional.  

Assuming the doctor "made a diagnosis of ALS", then VA is not allowed to "develop to deny".   As Berta explained ALS is a presumptive, and VA should not be allowed to "weasel" out of it, by alleging uncertainty in the physicians diagnosis.  

This is all my opinion based on reading many BVA and CAVC decisions, as well as much research done with my VBM.    

Edited July 29, 2021 by broncovet (see edit history)

[Berta]

I am glad I looked into this further------

 

That BVA  search above is outdated -there are now 167 decisions at BVA on ALS in 2020 and 2021 so far-and it looks as if the BVA is certainly more up to speed on ALS claims!!!

 

1) https://www.va.gov/vetapp21/files5/a21009033.txt  

PLS variant - ALS granted 

The veteran's  private physician and a VA doctor agreed and the veteran also had submitted medical texts and info from good sources

to support his claim

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

2. "Service connection for a neurological condition, to include frontotemporal dementia and amyotrophic lateral sclerosis (FTD-ALS complex), is granted."

"Service connection for the cause of the Veteran's death is granted."

https://www.va.gov/vetapp21/files5/21032237.txt

_____________________________________________

 

3."ORDER Restoration of service connection for amyotrophic lateral sclerosis (ALS), with bilateral upper and lower extremity weakness with atrophy, persistent daytime hypersomnolence, bowel impairment, and urinary frequency, is granted. FINDING OF FACT 1. The grant of service connection for ALS in a March 2013 rating decision is not shown to have been clearly and unmistakably erroneous."

"After a review of the record, the Board agrees and finds that while service connection was originally improperly granted on a presumptive basis to a period of service that did not qualify for such presumption, the Veteran did in fact have a qualifying period of service for which presumptive service connection for ALS could be granted. Therefore, the severance of service connection for ALS was improper, and restoration of service connection is warranted."

https://www.va.gov/vetapp21/files4/a21007344.txt

( This case holds a very interesting CUE situation)

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4. " The appellant has established “veteran” status, as service connection is in effect for bilateral hearing loss and tinnitus due to his period of active duty for training (ACDUTRA). 2. The Veteran has a diagnosis of ALS. CONCLUSION OF LAW The criteria for service connection for ALS are met. 38 U.S.C. §§ 101 (24), 1110, 1112, 1113, 1131, 1137, 5107; 38 C.F.R. §§ 3.102, 3.303, 3.318."

https://www.va.gov/vetapp21/files4/21021092.txt

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I think these cases are good to review if ANY ALS vet gets denied.

 

[pwrslm]

The issue is the diagnosis for ALS is based on research criteria. Originally there was 4 base criteria similar to what they used for MS. These were suspected ALS, Possible ALS, Probable ALS, and Definite ALS. As more of the upper and lower motor neurons become affected, the higher up the diagnostic "ladder" you go. Newer criteria eliminated the suspected category, and replaced that with a clinical possible and clinical probable ALS, so that made it 5 levels of staging. And again, as the newest adjustment came out in the Awaji criteria, the suspected categories were eliminated and that left 3 diagnosis criteria. All of this happened from the early 90s through the around 2016.

The PVA rep explained to me in no uncertain terms that the VA policy is that if you do not have Definite ALS, it will not grant SC for ALS. As the attachment I posted above explains (see "A proposal for a new diagnostic criteria, pg 2) it clearly states that "all three categories describe patients whose disease is in fact ALS, to a very high degree of diagnostic certainty. " When I found this, I sent it to the PVA guy, and he is lost to explain it.  This triggered me (a brain thing I get)! This was why they denied my 1st application last year. How many more veterans are in that position, and are denied benefits for ALS because the VA is basing SC on information that is used to qualify for clinical trials, and not the diagnosis? The criteria of possible, probable, and definite, are not suspicions, but instead align more as a staging level. That opinion was written by 22 of the world most recognized ALS specialist, and the conclusions of that was adopted by the World Federation of Neurology. It is indisputable fact that cannot be overcome to the best of my knowledge.

My goal now is to insure that other vets are accorded the rights to the benefits the VA originally denies, because almost all of the people who are diagnosed with possible and probable ALS will certainly die of ALS (the statistics show that 96% will do so). Many people w/ALS will die and never progress to having definite ALS.

Good news is that my recent 12 July Visit to my Neurology Spec at VA got my claim Approved, and SMC's will be applied. Bad news was that they did so while totally ignoring that evidence I submitted, which was a side step to recognizing what I posted on here. What do I do to change the policy? Dozens, if not hundreds of veterans w/ALS are affected. 

Edited July 31, 2021 by pwrslm (see edit history)

[pwrslm]

On 7/29/2021 at 9:55 AM, broncovet said:

A diagnosis is a "finding of fact" made by a competent physician.  Neither the BVA, nor the CAVC, nor a rating specialist at the VARO is allowed to substitute their own unsubstantiated opinion for the opinion of a competent medical professional.  

Assuming the doctor "made a diagnosis of ALS", then VA is not allowed to "develop to deny".   As Berta explained ALS is a presumptive, and VA should not be allowed to "weasel" out of it, by alleging uncertainty in the physicians diagnosis.  

This is all my opinion based on reading many BVA and CAVC decisions, as well as much research done with my VBM.    

The VA C&P rep was a NP in my case, and knew less about ALS than I did IMO. He also omitted facts contained in the medical record, and made claims about what that did not exist in the medical record. The treatment I was given for ALS was overlooked, and he stated that I had never had a diagnosis for ALS. I tore his evaluation up and handed it to the VA which totally undermined the C&P. The medication I was given in 2019 was Radicava, and it may only be prescribed for probable or possible ALS, demonstrating my diagnosis in no uncertain terms because Radicava is not used for anything else. I was denied because the NP said I only had suspected ALS, when the term suspected never occurred in my medical record. The SC was denied because the basic criteria did not say "definite" ALS. See my post on that also posted today.

Edited July 31, 2021 by pwrslm (see edit history)

[Berta]

GOOD FOR YOU!!!!!!

That is how I proved the VA killed my husband ( FTCA and 1151 award.) Then I proved a few years later ( but this time I had 3 IMOs and had done extensive lay research on that claim) that he also had an additional undiagnosed and untreated condition- DMII from AO.

I filed for direct SC death and I won.

"What do I do to change the policy? Dozens, if not hundreds of veterans w/ALS are affected." 

When I wrote to former VA Secretary Dr.Shulkin, years ago - I gave a good legal argument with evidence for  2 regulations i 38 USC/CFR that should be changed. A few VA secs had responded to me over the pat 2-3 decades , but I did not really expect any response from this VA Sec.

A few months later Dr Shulkin's office called me to tell me my suggestions had been incorporated into the AMA.

M21-1MR was changed to reflect that.

Another policy might well be changed. I do expect that to happen.

Some time ago I contacted the Presidents Hot Line for veterans - President Trump wanted a lot more Accountability from the VA.

I had done from time to time about twenty years of research regarding a 'policy' that was actually a standing Mandate with the VA Office of General Counsel- VA and the NPDB. My information was given to the Office of Accountability-VA ,that the President had set up.

The Office of Accountability contacted me and asked for some more info----

The result of that was a Bill S 221, in the Senate. It passed the Senate unanimously and went to a HVAC medical sub committee,(still there) and then it will go to the House of Representatives.

The intent of my research and this bill, is to save lives of disabled veteran in the VA Health Care System.

I believe the VA saves live  every day. But their incompetent doctors, and other incompetent medical personnel, have to go------!!!!

Also VA hides their true malpractice statistics from Congress and from the Public. That has to change.

The Bill will hopefully change that as well.

You can also write a Bill yourself- there is instructions on the internet on how to do that- and then you need to sind sponsors in the H VAC r Senate VAC- I have a separate Bill there , with no sponsors yet-it takes a lot of work.

 

 

 

 

 

 

[Berta]

To add:

 347 237 4819  White House Hot Line for Veterans

https://www.va.gov/accountability/   (Office of Accountability)

I have no idea if these entities are still viable, due to the new Administration.

But they are still available on the internet.

This is where I sent my Letter to Secretary Shulkin:

"Secretary David Shulkin                                                                                                                                      February 19, 2017
Veterans Administration
810 Vermont Ave. NW
Washington, DC 20420                       XC #XX XXX XXX

Dear Honorable Secretary  Dr. Shulkin,
    I hope you will consider my suggestion here as one potential way to reduce the tremendous backlog of claims at the Board of Veterans Appeals. I have been a disabled veteran’s advocate for over 20 years, helping veterans and their survivors prepare and support viable claims for VA compensation , DIC, and other benefits they might be fully eligible for."

Gee I had no idea how long ago that was--

I suggest if you write to :
 

Secretary Denis Richard McDonough

(same address as above) that you word the letter , as I did ,' Dear Honorable Secretary McDonough'

and state briefly right away in the first paragraph ,what =your letter is about.

I used a personal statement for the next paragraph that sure got his attention !!!!

you could do that as well.

My letter was about 4 pages long, as I detailed the need for a regulation change-regarding CUE and also I proved with evidence that I had used this tactic successfully myself because nothing in 38 CFR/USC prevented me from doing that, and ,in most cases, my decisions was overturned ( and even one for my daughter, a veteran) in 3 weeks.  That staved off the long arduous appeal process.

(Also a few vets here used my approach with success.)

I wish you well in your quest for this much needed change in how the VA views ALS!!!!!!

We here have altered the lives of MANY veterans , survivors, and their families.

Thanks to Tbird and this wonderful site she created  !!!!!

 

 

Edited July 31, 2021 by Berta
cloud (see edit history)

[pwrslm]

Thanks Berta! You gave me the idea's that will be the direction I take this issue.

T-Bird is a hero, you are right. Much of what I learned about VA Claims came from the internet, and much of it from HADIT. I have been suggesting this site for years to vet's at my local VAMC and other places on the internet. This site should be a locus for RO's also, maybe they would learn something about what they do to Veterans.

(Edit: The WH hotline has been a disappointment to me. Used it successfully the first time out, then it flopped.)

Edited July 31, 2021 by pwrslm (see edit history)