Today I had a very cool experience that left me with the impression that I really have made a difference in the ALS community. Through my volunteer work with the I AM ALS group my name was submitted as a possible participant for a Veteran’s Administration, ALS care review. This review was of a document that defines how individual ALS care centers should interact with and provide services to veterans with ALS. In the meeting there were VA policymakers and ALS care program administrators, along with one participant from the ALS Association and one participant from the Paralyzed Veterans of America (PVA) group. This was significant because I am an ALS patient as well as a member of the PVA and I am a volunteer for the I AM ALS nonprofit organization.
In this meeting we were going over a document that describes many different facets, programs and types of care than an ALS patient might need throughout the various stages of living with the disease. In this review meeting I was the only ALS patient and veteran so most of the questions of how things work and what I have experienced were directed to me, so I felt pretty important and engaged in this particular group of people. It was really cool to see that the highest levels of veteran administration facilitators we’re asking the right questions to the actual people who would be affected by their policy and procedure changes. Having worked for the federal government for most of my adult life I can tell you that that is of rare occurrence and usually the process entails decision making at the top that is forced down to the lower levels without consultation of the people who actually perform real work based on other’s decisions.
One of the first points that I brought up when asked about my experience with the VA healthcare system was the difference in what I anticipated and the actual experience getting care from the VA. I work with almost all retired veterans and it is not uncommon to have discussions about the difficulties and challenges related to getting care with the VA. I told the meeting participants about my reluctancy to start ALS diagnosis through the VA when I had already begun the process through my other primary care physician. I had anticipated that I would have to start over with all of the testing and that it would be a lengthy process to come to a diagnosis. My experience though was that I brought all of my test results and provided as much detail as possible and within a single one hour appointment I was officially diagnosed.
From there we talked about a lot of the services and processes used in the ALS clinic where I get care. The style of care that I get is called interdisciplinary which basically means all of the various specialties come to me on a single day and in a single room to provide care listening to some of the feedback from other people in the group that is not always the case and many veterans prefer to do telehealth via the Internet. It was interesting to hear about the various levels of care provided by the different levels of ALS clinics around the nation. Apparently I live in one of the best possible locations having two ALS centers of excellence, run by the VA, within one hour of my house.
The meeting and interview lasted for a little over an hour and I provided as much direct input is possible relaying my experiences with the various programs that are afforded ALS patients. It was a great experience be part of that review process.
One of the only negative things I brought up during the meeting was the lack of information in pursuance of ALS related research and clinical trials. During my diagnosis phase it took almost three years to get through all of the testing required to eliminate other disease possibilities. So by the time I was officially diagnosed it had been almost three years since I had the first onset of recognizable symptoms. Almost all clinical trials require participants to be within 24 months of diagnosis and start of symptoms. I let the group know that I had anticipated once that I was officially diagnosed I would become a science experiment where multiple groups would want to test various things including new drugs and possible treatments to see if they were effective. The reality is that I haven’t received a single inquiry about being part of any clinical trials. I told them that I perceived this as a missed opportunity and that every veteran with ALS should be associated with and participating in some kind of clinical trials. This is significant because veterans are diagnosed with ALS 50% more often than the average population. That fact has not been lost on policymakers because ALS is an assumptive service connected disease or disability.
In summary I felt really great about being able to participate with policymakers and facilitators for the VA and that my voice was heard to hopefully make it better for others with ALS in the future.
