General Thomas Mikolajcik expresses his frustrations on finding a cure for ALS and explains what he is doing to streamline the research efforts.
Read the full transcript »
It was in the mid-1800s when ALS was discovered. Lou Gehrig stood on a baseball diamond in Fourth of July, 1939, he was the luckiest man alive. And what his doctors knew then and what our doctors know today, the therapies or for prevention or—there is no prevention, or for slowing the disease is one drug that’s questionable. So, we come really nowhere in 70, 70 years. Technology has said, “Yeah, well it could be X, Y, Z, Q1, Q7, S3, I mean it could be all these different things, but there is no one thing that connects the dots. There is no one thing that leads to, how does it start and there is nothing to slow it or prevent it thus far. So, part of my concern and issue has been—ALS has been underfunded for years. I reviewed the national study health budget five-year period of time. ALS and MS have almost the same incident rate. Except ALS is maybe 75% the incident rate of MS. There’s just a lot more MS patients because MS patients live a lot longer, ALS patients, we die too soon. So, there is a voce out there, but there is no correlation in the NIH budget, the funding of ALS compared to another drug—another disease. MS gets two and a half times of funding of ALS. Huntington’s disease gets a 120% times the funding of ALS yet, ALS has five times the incident rate than Huntington’s disease, and I can go through all these other things and see what's the correction. It’s just where pots of money are put and who speaks up or whatever, that’s why last year, I went to Washington twice. Both times to Congress to talk to congressman and senators, and the second time also, to the Department of Defense to say that, the government has a responsibility since in 2003, we found that Golf War veterans have a two times the incident rate of non-veterans, okay? That’s pretty high. And then in 2005, we find out that all veterans have a higher incident rate, 1.6 times. Every veteran has a 60% higher chance of contacting ALS than a non-veteran, but what is the government doing? Well, the DOD does a little, the NIH does a little, the VA does a little, Center for Disease Control, I mean there is different government agencies that are doing different thing. Do they talk to each other? Are they coordinating information? Who is being held accountable for the money and grants that are going out? I haven’t found an answer to that and I feel compelled that since there is a correlation between military service and ALS, that the government needs to take a leading role in solving the ALS rubik’s cube. Private industries, while they do some, they’re not doing very much. Foundations contribute money, ALS Association, MDA Association, ALS Therapy Development Institute, all the private entities raising money for ALS research and it has given out, but where is it coordinated? How is it pulled together? Can we go to a website and look at who is doing something at mass general? Who is doing something at the Medical University of South Carolina? Who is doing something at the Mayo Clinic? Is there is a propriety of information? Is there for profit? We have to break those barriers. If one government agency would subside a leadership role, are there government agencies supporting it? And you take a new approach to research different than just grants, but you build a strategic plan for ALS, where is that today? I don’t know, I haven’t found it, I’ve been looking for three years. Just as we want to put a person on the moon, we set a goal and our objective and we as a nation use NASA as the vehicle, use the other government agencies that are supporting entities, use private industry to support government agencies, and we put a man on the moon. Why don’t we try a new approach to one disease, ALS as a model, as a forerunner to maybe other ways of doing research than the way we have been doing it a 100 hundred years or 70 years, because in 70 years, AS patients like myself basically have nothing but hope. Hope being helping other people endure, helping other patients with ALS