The Cost of ALS Is Killing Us, and Our Vets

November 19, 2015 - als

I’m partial of an disdainful bar where I’ve grown a many intimate, suggestive relations of my life. Let’s wish we never join. This bar is where we met Matt Bellina, a 30-year-old late navy pilot. He greets we with a genuine grin and handshake that immediately creates we wish to be his friend. The kind of handshake your father told we about when we were a kid. He’s a kind of man we could rest on for anything from parenting recommendation to bailing we out jail in a center of a night, no questions asked.


Matt lives with his mother and darling toddler boys in lifelike Newtown, Pennsylvania. Yeah, his life is fundamentally a Norman Rockwell painting. Well, solely for one thing, he’s in this bar with me. The one where members share a common bond – we’ve all got ALS, an illness that has no diagnosis or heal and is 100 percent fatal. Where statistics tell us we’ve got an normal life outlook of 18 months.


I initial met Matt in a halls of a US Senate final May, where we were perplexing to remonstrate senators to assistance us get entrance to an initial drug to provide a disease. Since that time, I’ve schooled some-more about ALS from Matt than many doctors. He’s finished his homework. Military veterans are twice as expected to get ALS. Every year, about 6,000 people in a U.S. are diagnosed, 1,000 of them are vets. ALS is deliberate a “service-related” disease. No one can unequivocally explain this though a numbers don’t lie.


ALS is a unequivocally costly disease, costing patients an estimated $300,000 a year. The infancy of patients broke their families with a costs, and an even incomparable series simply can’t means a cost to stay alive, so they don’t. Can we suppose – carrying to stop BEING ALIVE since it’s too expensive?

Lucky for vets – good kind of – a VA will cover your costs usually like they would if we were shot in battle. In speculation during least. Matt explains, “The VA is thankful to take caring of my medical needs. They compensate adult to a certain extent so we kind of have to make choices after that.” Seems to make sense, right? You dedicate your life to portion your country, we get a depot illness, we get caring lonesome by a government. Unfortunately, it’s not so black and white.

Matt describes his knowledge with a VA, “The medical staff is great, though unfortunately, they are gratified to covering on covering of official regulation. For example, from my diagnosis in Apr 2014, we was not seen by a VA medicine until Aug 2015. 16 Months.”

The normal life outlook for someone with ALS is 18 months. We wouldn’t leave a infantryman with a conflict wound sitting around watchful to see a alloy for 16 months. Let me explain what can occur in those 16 months. You can no longer walk, feed yourself, get dressed, or bathe. By a time we get into a VA doctor, it is expected we won’t be alive. Matt goes on to explain, “I know of other vets in a same situation. we know a man who is literally vital in a VA sanatorium while he waits for approval.”

In an mocking turn of events, Matt’s internal Home Depot recently detected how prolonged he had been watchful for a VA to get him a ramp so he could safely enter his possess home and jumped in to help. In 3 days, they orderly a organisation of volunteers and – with donated lumber from Home Depot – they built his much-needed ramp.


Getting behind to a DC revisit we’re during a final assembly with Alaskan Senator Lisa Murkowski. Senator Murkowski was one of a few senators to make time to accommodate with us. During this meeting, Matt says something that creates a whole room go silent. Matt explains,

I overtly consider nobody has looked during a costs. The Muscular Dystrophy Association (MDA) estimates a sum for all sovereign programs for ALS caring is costing taxpayers $350-$450 million per year. You review that to a $7.5 million spent on annual investigate and it unequivocally creates we consternation who is job a shots and since they are still employed.

Yes, we review that right: we’re going to spend $450 million to watch people die a slow, unpleasant genocide and usually one percent of that to try and save them. That’s some-more than bad for a vets, it’s bad for a country. It’s embarrassing. Matt goes on to explain with all sincerity, “I am unhappy to contend we will privately cost a taxpayer some-more than a sum annual investigate bill when all is pronounced and done. It is sad.”


Sad indeed. Sad since hundreds of millions will be spent on care. Sad since nothing of this caring will make a hole in assisting to save vets lives. Sad since another 1,000 vets a year will go by this with no finish in sight. Sad since membership to a disdainful bar is so fleeting. On a splendid side, with Matt’s help, and your help, we can vigour a senators to make smarter investments, to approach some-more supports to research, and to take improved caring of a vets. And, maybe one day we can one day take a travel alongside my friend.


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