Ashok Verma, MD, Professor of Neurology and Director of Neuromuscular Medicine Training Program at the University of Miami, Medical Director of ALS programs at Miami Veteran’s Affairs Medical Center talks about the recent findings in connections between veterans and patients diagnosed with ALS.
Interview conducted by Ivanhoe Broadcast News in November 2019.
Tell us what ALS is first of all and then we’ll talk about how many people are affected?
Dr. Verma: ALS is a disease of motor nerve cells and these motor neurons are located in brain, brain stem, and the spinal cord. These nerves are connected with the muscles. So when these cells die, muscle doesn’t have business. So in a way, ALS sadly is a progressive disease with muscle weakness and muscle atrophy. And since it progresses over time, there’s progressive weakness of muscles in arms and legs, muscles in the throat with difficulty in swallowing and speaking, as well as difficulty of respiration; which is usually the cause of terminal death in these patients. ALS, we don’t know the etiology of ALS and we don’t have a cure for ALS. It is a progressive disease. On an average, a patient with ALS lives for about three to five years.
Do we know about how many people nationwide suffer from ALS?
Dr. Verma: The incidence of ALS is uniform all over the world. In our country we have about 330 million population. We have about ten to 15 thousand new cases every year. And because they live for three to five years, at one point of time we have in the range of 30 to 35 thousand people with ALS.
What are some of the beginning symptoms people might be experiencing with ALS in the beginning? It takes a while to get the diagnosis, if that’s what it is because it might mimic some other conditions. What are some of the symptoms?
Dr. Verma: Yeah, that is true because there is no biological marker for ALS diagnosis. ALS is a clinical diagnosis, and unless one is very experienced, it takes longer time to diagnose. On average, it takes about six to eight months from the time of onset of symptoms to the diagnosis.
And is it just general weakness that a person might feel or balance issues or it could be..?
Dr. Verma: No two ALS patients are similar. ALS starts in one place and depending on which part has become weak, the symptom pertains to that. For example, weakness of the hand muscles, then arm weakness, weakness of the leg muscle, then leg weakness or foot drop, weakness of throat muscles then difficulty in swallowing and speaking. From that point onwards the disease progresses. So for example, if weakness is first in the leg muscle then it will spread to arm muscles and to throat muscles or the other way around.
When we are talking about veterans, the numbers seem staggering. I was reading that people in the U.S. military, the incidence of ALS is more than double that of the general public?
Dr. Verma: Approximately one and a half to two times more than the population. This came after Gulf War, that is Persian Gulf War 1991-92. I mean, looking at people with ALS who have served in Persian Gulf War; it was approximately twice as common to general population. And then researchers investigated other wars and veterans who served starting from World War II, the Korean War, and Vietnam War. And it appears across the board, regardless of war and different time periods, veterans have a higher risk for ALS compared to general population.
Do we know why?
Dr. Verma: We don’t know. That has to be researched and that has to be looked into. And I mean, there are only speculations. To make it clear, Institute of Medicine Committee put up a report based on all published reports in 2006. And they confirmed that there is a small but definite higher risk of ALS in those veterans who have served in any of those wars. But we don’t know the cause.
So these people who served are now experiencing symptoms and being diagnosed with ALS years later?
Dr. Verma: That is correct. There’s association between veterans who have served in the war and later development of ALS after some time. And when people have looked into other wars they found the same thing.
In your experience and I know you say the research is ongoing – well, I assume there’s a need for research to find out what the cause is. I mean, do you think it’s environmental? Do you think it’s water, food supply? Could it be?
Dr. Verma: Yeah. It could be because since we don’t know the cause of sporadic ALS, apart from some form of nerve degenerative disease, probably there is some genetic susceptibility or some environment factor or interaction between genes and environment. The speculations about veterans and ALS is it may be injury, it may be trauma, it may be fractures, it maybe concussion, it may be blast injuries, or it may be environmental toxins. For example, exposure to oil well burning fumes in gulf war, or exhaust fumes, or blast injuries, or other environmental toxins which may be a transmissible agent or even vaccines, people have speculated. But we don’t know the cause yet and it has to be researched.
Because you’re seeing more and more veterans being diagnosed with the ALS? In other words, this is extremely serious – this correlation, this connection?
Dr. Verma: I think it is serious for two reasons. Number one, it’s terrible that veterans are affected with this after serving the country. And number two, there may be a clue there with regard to the cause, which may spill over for possible treatment. So I think this is very important.
And doctor, is this not only important for those veterans, you’re saying this is important for anyone who might be diagnosed with ALS?
Dr. Verma: Of course. I mean, we don’t know the cause but we are on the lookout for a cause. And maybe probably here is a clue to investigate further in order to find out a possible cause.
You said there is no current cure for ALS, what kind of treatment is possible now? Is it just maintaining the person’s abilities as long as possible? Are there any new medications?
Dr. Verma: So there are a couple of things here. I think I’m very impressed with VA services by the way, and it’s a service-connected disease. I did not know much about this until a few months ago when I started looking after veterans. And I think the type of service the VA system is providing to these people, I think that it’s state of the art. I have seen the multidisciplinary approach depending on the patient’s need. There’s a physical therapist, occupational therapist, nutritionist, speech pathologist, social worker, respiratory therapist; all these people or personnel are available. That’s number one to put more quality of life in veterans with ALS depending on what are their needs, so that is number one. And number two is medications, we don’t have a cure but there are two medications that are approved by the FDA. They have only modest effect in slowing down the disease process. None of those medicines are believed to arrest the disease or reverse the disease course, but they slow down the disease in some patients. The first FDA-approved drug was Riluzole, this was approved in 1995, we have been using this for almost 24 years now. And the second one was Edaravone, which was approved in 2017, and we are using that medicine also. So there are only two medications approved by FDA for ALS.
And as you’re saying they only help moderately.
Dr. Verma: Modestly, yes.
One thing that I was wondering about is does ALS affect a certain gender more than the other?
Dr. Verma: Slightly more common in males, about 1.6 to 1, but not a huge difference.
Why do we see some ALS patients live many, many years with this condition, with the disease and then there are some patients who seem to unfortunately get struck very hard? I know you say three to five years is the general, but do we know why? You’re just saying it’s very individual?
Dr. Verma: We don’t know that but you’re right. The duration may be anywhere between less than six months to 20 years. And over the years, we people who have been looking after ALS patients, we have to stratify these patients. We know reasonably well in the beginning which is more progressive or which is less progressive. But that is correct, we don’t exactly know why some people are struck hard. Our common sense dictates some person with foot drop will be living longer. And somebody who has got respiratory difficulty in the beginning probably will not be living that long if there’s no respiratory support.
So when it comes to veterans, if there are people out there who see this report, should they contact their local VA hospital? What do they need to do? Are there clinical trials they can get involved in now or what should they do to get help?
Dr. Verma: I think this is very important because ALS is a service-connected disease. Every single veteran who is diagnosed with ALS I think should contact the VA system and get enrolled because all the care is available with regard to ALS in the VA systems, number one. Second, they will also have access to participate in clinical trials in order to understand the disease and also to find effective therapy. And for these two reasons I think they should contact their local VA system. And by the way, I must tell you what was news to me was there are patient advocates in the VA system and there is a person here downstairs who interfaces between us, the care providers, and the VA system. He is always there to help us and veterans with ALS. We only need to do the paperwork and everything is done geared to veteran’s ALS needs.
END OF INTERVIEW
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