2017 ALS Advocacy

So I wanted to give a little information about why I participated in the ALS Advocacy day on May 16th, in Washington DC.  To anyone that already knows my condition that answer would seem pretty straight forward.  But, as I truly discovered during the week, I was really there for people that are far worse off than me.  Let’s look at why.

On December 15th I sat in a room with my mother to receive the worse news of my life.  My immediate thoughts were not really about the future of my health, they were about how everything I have ever worked for will be gone and how will I be able to provide for my family/friends.  This was countered when I was asked one simple question, “Are you a veteran”?

With that answer I found out that I am entitled to receive a full disabled status that comes with monthly monetary support, full medical coverage and death benefits.  Full medical coverage is really “full”.  It includes participation in an ALS clinic run by Penn Medicine, special medical device coverage, medications, treatments, home modification, car modification, home nursing and tons of other things.

Simply put, this is not the case with other people that have been affected by this disease.  Let’s dive into this.

Waive the five month waiting period for Social Security (H.R. 1171/S.379): This bill will waives the five month waiting period for Social Security benefits for those suffering with ALS.  

This year was the first time I hung out with other people with ALS.  I discovered on simple thing, we are all in a race to get as much done, as fast as possible with whatever abilities we have left.  There are many people that don’t get the extra monthly VA benefits that I do, in addition to support from my wonderful fiancé, and they can’t afford to go six months without pay.  (I know it says 5 but, it actually turns into 6).  People end up working until it too late and they miss out on living as much as possible.

To be clear, this is a terminal disease that does not have any type of significant treatment.  We will not get better and getting that extra time with financial support is much needed.  

Medicare, Preserve Access to Complex Rehab Technologies (CRT)(H.R. 1361 and S. 486): This is another things I don’t need to worry about with my VA benefits but, it’s crucial to those without, and on Medicare support.  Do to the devastating bodily effects of ALS, the patient require complex equipment to maintain and standard of life.  We need to remove these hurdles in the Medicare System.  I’ll give an example: visually controlled computer screens that allow patients to have a voice after the disease takes it away.  Please remember something, the mind does not go with this disease.  Think about that.

Steve Gleason Act: Ok, this one is a head scratcher.  This act is already in play but has an expiration date of October 1, 2018.  We need to make sure this gets passed into a permanent act.  This ensures that Medicare will continue to cover speech generating devices and related accessories for patients with ALS, MS, Parkinson’s disease, paralysis and other debilitating conditions.  Without this act, under some circumstances, devices can be taken away from patients that enter nursing homes or hospice care.  YES, YOU DID JUST READ THAT.  Much less getting people devices, it ensures they keep them.

Now let’s look forward to something that will most likely not have an effect on my life but, is extremely important.  We need to push forward on funding for research and investigation for the disease.  Maybe one day people like myself will not be writing articles like this.

Provide $10 million appropriation to continue the National ALS Registry at the CDC: This is an effort to gather as much information as possible about people affected with ALS.  This includes both patients and family members.  The more information we gather about this disease the better we can understand who/how it affects people, discover trends and leverage information to help patients. 

I’ll give an example of how this could have helped someone in the past.  I met a 29 year old girl that was affected when she was 23 years old.  (Before we had this tool)  Her symptoms started in her arms and eventually lead to paralysis of both arms.  Her particular symptoms were not something ever seen by her physicians and she was young, female and it was focused on her arms.  Since there was no real documentation or database to compare her to, she was misdiagnosed for year as cancer.  As she but it “I wasted a year of my life taking chemotherapy that I’ll never get back.  Something like this could have helped link my symptoms to the correct disease.”

Provide $10 million appropriation to continue the ALS Research Program (ALSRP) at the Department of Defense (DOD): This seems to make sense since so many veterans are affected, right?  Well, there are some that think any type of DOD funding should go directly to the military and we should not mix spending.  This is needed funding to go toward ALS research and working for a cure.  We can’t just focus on helping veterans like myself after we have the disease.  The DOD needs to lead the charge in making sure this disease is defeated before we have to treated people.

I know it’s hard for everyone to directly do something about this today.  I ask something simple.  Digest these thoughts and make it part of you.  Not just for ALS but, for other devastating neurological diseases such as MS and Parkinson’s disease.  If you do that, it will help shape your thoughts as you move forward in life.  Always take the time to look at things from “the other side”.  Thank you.

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