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Jann Vasiloff is the widow of U.S. Marine Corps Veteran George, who passed away from ALS. Jann is the inspiration behind the Justice for ALS Veterans Act, which would make the spouses of Veterans with ALS eligible for the DIC Kicker regardless how long the Veteran had the disease. Currently, the benefit is only available to survivors if the Veteran had the disease for eight years or more, which is usually unlikely due to the extremely progressive nature of ALS.

What did George do for a living?

He primarily worked in the trucking industry. He was a branch manager in transportation. That’s what he worked at most of his career.

Why did he serve?

It was Vietnam, and he was drafted. His number came up and he had to report to the recruiting center. At the recruiting center is they lined them all up in a line, and they went down the line and counted, “One, two, three, four, five, Marine. One, two, three, four, five, Marines.”

How long were y’all together?

We were together 37 years before he passed.

Do y’all have any children?

We have two. One son, and one daughter.

Are they around you? Do they live close?

They’re both a little over an hour from me.

What year was it that he was diagnosed with ALS? Do you remember?

The actual diagnosis was September, 2013, but of course he’d had symptoms before that. ALS is always the last thing that they think of. They look at everything else first and then that’s kind of a process of elimination.

And he passed in March of 2015?

2015, right.

It was fairly progressive but fairly standard.

Yes. It went very quickly. I mean, within the parameters, but on the lower end of the parameter instead of what we’d been hoping for.

After he passed, were you aware of this DIC benefit? When did you start fighting and figuring out that you needed to?

Initially it was because through the ALS Association, the rep that we were assigned came to the house and one of the first things she asked was, “Are you a Veteran?” And he said, “Yes.” McGuire was our VA hospital and she took us down, and the first thing after we did all the paperwork, she said, “We’re going to the PVA office.” And we went over there and they said, “We do everything,” and they did. They filled out all the paperwork, everything that needed to be done. So they were our point of contact, other than the doctors themselves, but they absolutely handled everything and were our point of contact for everything. I don’t know what it would’ve been like without having that resource.

When you emailed me you said you had talked and met with a lot of people before you got to PVA and got real help.

I had gone through several people for help on the Justice for ALS Act before I connected up with PVA on the legislative end of things.

Okay. But after he passed you realized that you weren’t eligible for the DIC benefit.

Yeah. Somebody from the VA told me, “This is DIC, this is what you’ll be getting, and then you’ll be getting this death benefit.” Well, I didn’t get it. And so, I just thought it was a mistake and looked into it, and that’s when I figured out through talking to people what the regulation was and so forth. He died in March. It was probably summer by the time I figured all that out.

And then you started working with PVA?

Yeah. Once I got the official ruling from VA. I already knew what it was going to be.

In hindsight I should have gone straight to somebody that served on one of the VA committees, with either House of Representatives or Senate, but I wasn’t thinking that. I immediately thought of my own senators, both of whom claimed that VA affairs and VA benefits and so forth are one of their top priorities. So, that’s where my mind went. But I never got anything. There are bigger fish to fry, we all know that, but everybody thinks their own problem is the most important.

You weren’t really getting anywhere.

I was getting nowhere. So then I went to ALS, the national organization. And I can’t remember how many people I went through to get to where I got. But eventually they sent me over to the vice president of public policy who wrote me and said, “At this time I’m working with PVA staff here in D.C. on the best path forward on this issue.” That’s when the light bulb went on. I thought, “I need to go to PVA and ask, how can we get this [issue] noticed?” And that was how I circled back to PVA, which, had I been logical, I probably should have started with them to begin with.

These people serve and then receive this diagnosis, and then it’s almost like a kick in the pants after death for survivors not to get this benefit that they should.

The way the reg is written, you don’t get that death benefit unless the patient died of the disease, and had the disease for eight years or longer. And that was my whole point. People don’t survive eight years. Survival’s getting a little bit better because of the new drug therapies that are coming on the market, but there’s no cure. And eight years is not the norm. The norm is still two to five. Back when George was diagnosed the norm was two to three, and he fell right in that window. And I cited all of that.

How’s it any different than if a veteran develops cancer from Agent Orange and lives eight years and one day? His widow gets that death benefit. And an ALS patient who served, lives seven years and 30 days, his wife doesn’t. His spouse doesn’t get it. So, it was arbitrary. And it just needs to change. I don’t know how they came up with this, but whatever service connection they made to ALS, people that serve, they’re not getting the full benefit. And you need that benefit more as a surviving spouse because you’re getting the disability from the VA while your husband is alive and suffering.

They’re quite generous with that 100% disability but the minute the patient dies, that’s gone. The absolute minute. I mean, that’s it; that was your last payment, you’re done. And so, you go from being able to pay your bills and this, that and the other, down to the DIC only. When I started this the death benefit was $230 some dollars a month, so it’s not a lot. I don’t know what it is today, probably not too much more, but that’s a car payment. That’s the way I look at it.

I won’t get anything from this if this Act passes, unless it’s rewritten the way the original one was written. Couple Congresses ago, if it would have passed it would be effective only for those that died of ALS from October, 2018, forward. I always said, I wasn’t doing this for that money. Not that I’d turn it down, mind you, but I was doing it to change what is just a gross oversight.

I know someone else in Nebraska and her husband only lived a year, and he was a Veteran. After he was diagnosed I said, “You need to go straight to the VA in Omaha and sign everything up.” I tell everybody I meet, “If you know somebody that needs to walk through the VA system, contact me.” And of course, I’m going to take them straight to the PVA office and say, “These are the people that can help you.”

You could use McGuire in Richmond as a model hospital because they were great. We waited for nothing. They had a real grasp of the idea, this person is dying. He doesn’t have time to wait. And I’m sure that that had a lot to do with that PVA office being right there in the hospital.

The PVA office was absolutely top-rated.

If I called for something, if I had to leave a message, they were back to me that day. There was no such thing as waiting for answers, or they didn’t have an answer, they got it to me. So, I tell people a lot about PVA, whether it’s ALS connected or not.
I don’t even know if we’d would’ve ended up where we ended up if it hadn’t been for PVA, but it certainly would’ve been a whole, different experience and a longer experience to get those results.

And looking back, it was really a godsend because he ended up living only 23 months from the time of diagnosis. If you spend half that time trying to get where you’re supposed to be, it’s nothing. And of course, there’s no way to tell that at the time. And that’s the thing with that disease; it affects everybody differently in how they progress and so forth.

I appreciate that you can honor George’s memory by doing this and hope you can get this Justice for ALS Veterans Act passed.

Yes, exactly. This will be his legacy, if it gets passed. And he would be happy about that.

 

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