Seeking Justice for ALS Veterans

Veteran and family

For unknown reasons, veterans who have served in the United States Armed Forces are more likely to be diagnosed with ALS than people who did not serve in the military.

In 2008, the Department of Veteran Affairs established ALS as a service connected disease. In doing so, the VA made it possible for veterans who were diagnosed with ALS to receive compensation based disability, grants for housing, vehicle modifications and much more.

A veteran's spouse and dependents may also be eligible for benefits, but a quirk in the law governing survival benefits means that spouses of veterans are being denied access to survival benefits after they lose their loved ones.

Connecting ALS recently talked to Jann Vasiloff, who lost her husband to ALS in 2015 and who has led the fight for equal access to survivor benefits for spouses of veterans who die from ALS.

The transcript below has been lightly edited for brevity.  

Tell us a little bit about your connection to ALS.
Well, my name is Jann Vasiloff and my husband was diagnosed with ALS in September of 2013. He exhibited symptoms in April or maybe a little bit before that of 2013, so he was actually diagnosed fairly quickly. Oftentimes it takes a lot longer to diagnose the disease. He lived 23 months, he died March of 2015. And because he was a veteran, that opened a whole new world to us for the care and the benefits and so forth.

You became engaged in advocacy around a bill that is before Congress right now and that is the Justice for ALS Veterans Act. Talk to me a little bit about how you came to understand the problem that this bill would address.
After my husband died, being the surviving spouse of a hundred percent disabled veteran, I was entitled to DIC, the compensation for surviving spouses. And I was told by, it was someone at VA, or it might have been PVA, that I don't remember. But that in addition to the monthly stipend, I would also get what at the time they referred to as an added death benefit because he was a hundred percent disabled and did die of that disease. Well, that never arrived.

So, I looked into it thinking it was a mistake and then came across, under the benefit section for surviving spouses, that in order to receive that death benefit, the added money, the veteran had to have had the disease at a hundred percent disability for eight years prior to death. So we didn't qualify as my husband only lived 23 months. And having learned a lot about ALS, I knew most veterans weren't going to qualify because the average lifespan is three to five years, falling far short of that requirement. So I thought this was not good because it meant that veterans who lived eight years, no matter what the disease, they were getting, their families were getting this extra stipend that wasn't open to ALS patients who did not live eight years, which most do not. Only 10% of the population, veteran or not live longer than 10 years with ALS, 90% die within three to five years of diagnosis.

How did you go about trying to get this rectified?
Well, I first made sure that I was understanding the benefit or the lack of the benefit correctly. And then, I first went to my congressmen, to their office. Because I knew it was going to make a change, it had to go through Congress because the rules are set by Congress for the VA. So I didn't know where to start, so I started there. And that didn't provide me with what I needed. And then, I met somebody who worked for the VA and said that I had to fill out this form from the VA telling them what I wanted and requesting an interpretation of the benefit, basically. I had to jump those hoops knowing what the outcome would be. But I did that and sure enough it came back and said, "We understand what you're talking about, so on and so forth, but to change this law, it takes an act of Congress."

But I had to have that in hand before I could proceed because that document, well, it really was emails back and forth, it wasn't a document per se, but PVA needed that from the VA stating I had applied, if you will, and been denied and that the law had to change. That gave us the basis for coming up with a bill.

I thought of it at the time and still do feel that it is something, that it was an oversight when the law was written. How they chose eight years, I don't know. But that they certainly, anybody with knowledge of ALS was not part of that discussion, let me put it that way.

Because they would've known that the majority of people aren't going to qualify for that eight years. So, I chose to look at it that it was an oversight and that it was something, a fall between the cracks, if you will, but something that needed to be and in my estimation corrected.

When did you first bring this to the attention of PVA and your member of Congress?
Meeting with Congress offices and so forth, actually it was Aids that I first discussed it with. I'm going to say it was maybe the fall, summer of 2015. Then I decided that this was worth looking into, seeing if we could get this rectified. And I was passed from one organization to the other, through ALS as well, ALS Association I mean, through my both senators offices and at the time my representative's office. And I didn't get anywhere. I didn't really get... The individual I spoke to, yes, they were all on board, but it never went any further than that. So I finally, I don't know, it was like a light bulb went on that I thought, "Well, what about PVA? They helped from the very beginning. Let me at least talk with someone there and make them aware of this situation if they're not. And if they are, let's see what we can do." So it was a year after my husband died that I finally got into PVA to talk with them.

What message do you have now, seven years into this fight about the need, continued need to address this gap in the law?
Well, I'd say right now in our current economy, which is we've been hit with inflation, it's more important than ever. Today we're talking about an additional $308,28 cents a month. Which is for a lot of families and individuals, a car payment, paying an electric bill, it could be a week's worth of food at today's prices or not even that. So it doesn't sound like a lot of money, but put in that context, it can make a difference, a huge difference, of having what you need just for your basics or not. And there are, I think maybe people think of ALS as an older person's disease, so maybe dependents are not part of the equation, but that's not true. A lot of, because it hits veterans in disproportionate numbers, a lot of families, it's younger men and it's mostly men, but younger men that are being diagnosed and they do still have children at home. And so, you are as a spouse having to provide for these children. So that's $308, while it doesn't sound like it would pay for a lot. Yeah, it does.

People should be aware that this is a bill moving forward. We are as far now as we've been in the whole process, it is out of committee in the house and needs to be introduced on the floor. If it passes the floor, then it goes to the Senate. Every time an administration changes, it goes to what I call the dead bill office, which is where they all go if they're not passed and you start all over again, getting sponsors and so forth.

So, it's important to try to stay the course no matter how frustrating it is. It comes down to finding the right organization and the right person that will take it on and carry it through to the end, till its passage. I would like to emphasize that we are not, I think it's a distinction that needs to be made, we are not asking for something new for these families, we're asking to be given what other families with other diseases already get and that ALS people are not, or families are being overlooked. And I think that that's important. This is not a new concept, it's not a new idea, it's just excluding victims of ALS.

To listen to the full episode with Jann Vasiloff, "The Fight for Justice for ALS Veterans," visit ConnectingALS.org here. You can subscribe to Connecting ALS here

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog

Comments

Submitted by: Dana B. on Thu, 12/01/2022

My husband also had ALS and was 100% service connected. He was diagnosed in February 2009 and passed about 18 months later. If they pass this bill, it would be really great.

Submitted by: Jayne S. on Thu, 12/01/2022

I too have the same experience. However, my husband was diagnosed in September 2015 and passed on June 18, 2016. This doesn’t even come close to the average 3 yr survival rate. It took us from July 2014 to reach the diagnosis and began to realize he manifested symptoms like dropped toe as far back as 2003. Like many others the additional funds would be beneficial. We were so thankful for the VA benefits that made our lives, especially his better for the remainder of his life. If there is a way for me to be additional support I would help gladly.

Submitted by: Amy L. on Mon, 12/05/2022

Jayne, so sorry for your loss. You can write your representatives and ask them to pass the Justice for ALS Veterans Act here: https://als.quorum.us/campaign/42907/

Submitted by: Kimberly H. on Thu, 12/01/2022

My father was diagnosed with ALS in October 2017. He served in the US Air Force for 20 years, and VA classified him as 100% service-related disability. His disease has progressed, and he is confined to a wheelchair or bed. Mom has had breast cancer, a mastectomy has, type 2 diabetes, and has had 2 toes amputated. She also has auto-immune hemolytic anemia. When Dad loses his fight with ALS, Mom will need all the assistance she can get from VA, including the additional benefit to surviving spouse of a veteran with 100% service-related disability. Dad will most likely not survive 8 years, as required for the benefit. The survival prognosis for a patient with ALS is 1-5 years.

Submitted by: Amelia B. on Thu, 12/01/2022

My husband, Lt. Col. Leonard E. Basurto, passed on to eternal life from ALS on December 29, 2019. He was diagnosed September 11, 2018 but had symptoms a year before being diagnosed with this horrific disease.

Submitted by: Rhonda S. on Thu, 12/01/2022

My husband passed away from ALS in 2018. He lasted 10 months from time of diagnosis. To understand this disease and understand how long a patient lasts is to realize that the majority of patients are not going to last 8 years. So much depends on where the disease starts. Does it start in the outer extremities, the arms, the legs. Or does it start in the diaphragm, which affects the breathing, talking, swallowing. They last a much shorter time. I hope this injustice can be rectified.

Submitted by: Janice H. on Thu, 12/01/2022

My husband was a 100% service connected veteran who passed away from ALS. How can I assist?

Submitted by: Loretta A. on Thu, 12/01/2022

I support all veterans and their families.

Submitted by: bob S. on Thu, 12/01/2022

As with social security (and not being able to access it if the patient doesn't have enough credits in the previous 10 years - tough to work with ALS) there is certainly a bias against people with motor neuron diseases. I believe that both of these issues affect mostly women - whether a survivor spouse or a patient. Absolutely horrendous!

Submitted by: James C. on Thu, 12/01/2022

Vet diagnosed Feb 2022. Would like to know what to expect.

Submitted by: Amy L. on Mon, 12/05/2022

James, so sorry to hear that you've been diagnosed with this awful disease. Your local ALS Association chapter can walk you through what to expect and provide free information, resources and support. Find their contact information at als.org/chapters.

Submitted by: Marcia W. on Thu, 12/01/2022

I agree.. I lost my husband to ALS in 2017. It is tough to go from 100% disability to a smaller income. We work hard to keep our husbands living and comfortable for their quality of life. Whether it is 8 years or 18 months like we had. Hopefully things will change soon.

Submitted by: Mary R. on Fri, 12/02/2022

I would like to help. My husband was a veteran and was diagnosed with ALS in 2006. I personally was involved with advocating making ALS a 100% Service Connected Disease in September 2008. Please contact me. Mary Robertson

Submitted by: Amy L. on Mon, 12/05/2022

So sorry to hear that ALS has touched your life, Mary. You can write your representatives and ask them to pass the Justice for ALS Veterans Act here: https://als.quorum.us/campaign/42907/

Submitted by: Annette A. on Fri, 12/02/2022

My husband AJ, only lived 5 months after he was diagnose, He was a veteran , I get some benefits but it hard receiving them,

Submitted by: Cindy J. on Fri, 12/02/2022

This is horrible. I hate when our vets and their surviving families are treated as they make no difference. My Father died in 1993 of ALS. Such a horrible disease.

Submitted by: Sandee B. on Fri, 12/02/2022

This is an important issue. We have been denied any benefits through the VA because my husband was in the Army Reserve and we were told that his service did not meet the requirements even though he went through his basic training and 8 years of summer camp and was honorably discharged. He was trained and served as Military police. We were told that he did not qualify and we continued on with the battle to no avail till they wore us down. Don’s battle with this dreadful disease began in 2014 but he was not diagnosed until 2019. When he was finally diagnosed, we were told that he presented atypical as a child and that led to finally diagnosing him after many neurologists which included 6 trips to Mayo Clinic in Jacksonville, Fl.
At this time, we have not received any help except through ALS association.
We have gone through a large part of our retirement with no help. Don is totally disabled and I am his only caregiver. They have just about worn us both down!!

Submitted by: Samantha T. on Fri, 12/02/2022

ALS is not only a fatal disease that affects just veterans. I have family members in the military, so please don't assume that I am making any comments about veterans.

I just think it's really important for average citizens to have access to the same kinds of resources that veteran/ employees do. The military is a choice that individuals make while being paid.

I have nothing but respect for all veterans, but in this country there is no one who is superior to another, and those of us who have ALS will all pass away in the same manner. Therefore, justice ought to be accessible to every single man and woman in this country fighting this demon disease. Everyday they are the ones fighting to live.

In the year 2020, my husband was given a diagnosis of amyotrophic lateral sclerosis (ALS), despite never having served in the armed forces. Nobody in my family who has served, including my dad, brothers, nephews, and cousins, has been diagnosed with ALS. Go figure!! My nerves are on edge after reading this article.

Submitted by: Susanne L. on Fri, 12/02/2022

I’m a military retiree. My mom died of ALS (not a veteran). I am at increased risk of getting ALS due to these combined factors (although I recognize it is still a very low probability).

Submitted by: Patricia G. on Fri, 12/02/2022

My husband, Jim, who was a veteran died of ALS in 2021 three years after his diagnosis.

Submitted by: Barbara E. on Fri, 12/02/2022

My veteran husband was diagnosed 18 months before he died with ALS. I totally agree families need the much needed compensation.

Submitted by: Barbara E. on Fri, 12/02/2022

My Veteran was diagnosed with ALS 18 months before he died. I am in total agreement that a surviving spouse needs to be compensated.

Submitted by: Charlene D. on Sat, 12/10/2022

My husband was Air Force he was diagnosed in Feb of 2013 and passed July 2014 he was also 100% disabled I so thank the ALS society and the VA for helping with all the paperwork. They additional money would be a blessing. Thank you for starting this bill
Charlene Dawson

Submitted by: Pat D. on Sun, 02/05/2023

My husband Jim was in the Army reserves for over 33 ;years. He began to exhibit symptoms in Jan. 2020, which progressed to the diagnosis of ALS. He died on Aug 20, 2022 All benefits were denied, including burial expenses - because he didn't have 60 days of 'continuous' active duty. He was in basic and then on to MOS for 120 days but only basic counted. It seems that if someone puts in 33 years they should be eligible for at least a pro-rated benefit. To say I am disappointed and disgusted is a major understatement. How many other reservists are there that are in this same situation? What if anything can be done about it?

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