Brig. Gen. Thomas R. Mikolajcik, USAF (Ret.)
Chairman Michaud, Congressman Brown and committee members, thank you for this opportunity to testify.
My name is Tom Mikolajcik. I am neither an MD nor a PhD. I am a P-A-L-S. A patient with ALS.
I was diagnosed in October 2003. I was given a death sentence….and told to get a second opinion, while given a prescription for Rilutek which has limited value. Only by the Grace of God am I here to speak with you today….And I have vowed to keep speaking until I no longer can.
Military veterans, like me, face a higher risk of this relentless killer. Fifty per cent die in one to three years, another 20% die within five years and only 10% may live to ten years. It was learned in 2001 that Gulf War veterans have two times the incident rate of the general population. We discovered in 2005 that all veterans dating back to World War II have 1.6 times the incident rate of the general population for developing ALS.
Four short years ago, the VA opened its voluntary ALS Registry. It registered 1,993 veterans suffering from ALS. I am sad to say, and it is unacceptable to me, that only 969 (less than 50%) are still alive today. And, ladies and gentlemen, that also means that somewhere between 1 out of 15 and 1 out of 30 ALS patients are military veterans. The government must step up to the plate on this issue!
We are currently exposing 100’s of thousands more service members to the elevated risk of this disease. There will be young men, women, and families celebrating a return from Iraq and Afghanistan alive, who have no idea that they may soon be facing a certain death from ALS. We will have to answer those families when they ask what the government has been doing to prepare for this onslaught. For this reason, the government is compelled to assume leadership of this issue.
If these soldiers were dying in the field …. rather than quietly at home as a consequence of their service, we would leave no stone unturned. We would use the best existing resources and programs to make sure they had whatever they needed to survive….to ensure that no man or woman is left behind.
Some say that a lot of ALS research has taken place. My response echoes the famous words of President Lyndon Johnson: “Research is good, results are better!” It’s been nearly 70 years since Lou Gehrig made his farewell speech…and we have basically nothing – one questionable drug in 70 years!? How many thousands of private farewell speeches must take place before we realize we’re not doing everything we can? Will I have to give mine before an appropriate, large-scale, comprehensive plan to tackle ALS is carried out?
ALS is more complicated than a Rubik’s cube which is many sided, with multiple connections and various colors – like this one. One must consider causes, therapies, biomarkers, genomics, existing drugs, patient needs, palliative care as well as all avenues of research. Who is in charge of ALS research today? I have found no one in charge! What is the strategy for solving this ALS Rubik’s cube? I’ve found no strategic plan! Who oversees and is accountable for existing medical research activities for ALS? No one!
So, yes, there may be many ongoing efforts into ALS, but potential success is thwarted by little cooperation, coordination, and sharing of information. From my viewpoint and understanding, there is no one entity in charge or accountable. These blocks or boxes represent ongoing ALS research. All are separate, none are connected and there is no communication among them. We have under-funded researchers across the country; each working in their own little “box”. This approach has been unsuccessful thus far.
We need to open the doors of labs and encourage collaboration. There should be no more deaths due to protection of ALS related intellectual property or potential profit…..Some of us are in a hurry. Therefore, it is the government’s absolute responsibility to direct research into a full understanding of ALS.
In other words, my hope would be that we just not think outside the box, but totally redraw it; enlarging it to fit the enormity of this horrific disease. Many people come to hearings with problems and needs. I come before you with a solution also. I fully understand bureaucracy’s aversion to change particularly within an industry as large as medicine and with the number of government agencies already dabbling, yes, dabbling, in ALS research.
Let’s look back to 1961, when our nation made a commitment to put a man on the moon within the decade. One government agency was put in charge and it was supported by other agencies, as well as private industry and individuals. My proposal is very similar. It worked then, it should also work now.
THIS IS WHAT I PROPOSE:
Establish a Congressionally directed ALS Task Force with specific milestones and a time line. Within 30 days, establish an ALS Task Force made up of government agencies, ALS researchers, private ALS Institutes, patients and a facilitating team not related to ALS or the medical industry. Within 60 days, the Task Force should recommend which government agency will be in charge and the supporting roles of other agencies. Within 90 days, develop a strategic plan which outlines all avenues of research to be included. It must be comprehensive, forward looking and all inclusive. The strategic plan should also outline agency and researchers’ accountability. An adequate and fair funding stream must accompany this strategic plan.
The decade of the 1990s was the decade of the brain. However, we invested too little time and too few resources on research to understand diseases of the brain, especially such a devastating disease as ALS. Over 30 years ago our country launched a war on cancer. Because of that effort, we now have many treatments for this dreaded disease, even some cures. Isn’t it time for us to launch a war on ALS and other neurodegenerative disease so that we can have effective treatments and even cures?
We designed and designated the Apollo Program to put a man on the moon. For ALS, we could call it The Hope Program—Helping Other People Endure.
From this day forward, this new direction can be a model program that has one government agency, designated by Congress, which has control and oversight of a lofty objective—solving the ALS Rubik’s cube. There are many private models of leadership to draw upon. Innovations have sprung up driven by those connected to the disease including several with which I am involved (ALS-Therapy Development Institute, ALSA, MDA and MUSC ALS Clinic). These efforts will succeed with public leadership that amplifies their private support into an integrated whole. In the future, this model could be duplicated as a test bed for research on other diseases. Because of the similarities among neuro-degenerative and neuro-inflammatory diseases, advances in ALS research will likely be relevant to Parkinson’s, Alzheimer’s’, Huntington’s and others.
We must prepare to offer our soldiers, sailors, airmen and marines an opportunity to fight this disease. We can not simply fight this battle defensively, hoping to limit exposure to environmental risk. We must fight it offensively as well, with an appropriate medical arsenal. Let’s do what it takes to finish this enemy off once and for all.
Congress can make the commitment, take the initiative, legislate a new way forward and hold agencies accountable. We have the intelligence, the resources, and the competencies. It’s time to apply leadership to the ALS Rubik’s cube to move this campaign in a new and uncharted direction!
Let’s have the answer ready for our Veterans and the general population suffering from ALS. Let’s show them they were worth a real investment and a real plan. Let us redraw and enlarge the “box” to allow for their futures.
Finally, and probably the easiest task, is to immediately establish and fund a National ALS Registry to ensure comprehensive patient information, tissue, genes, DNA, etc. are available for investigation. Such a registry will facilitate, even stimulate, additional research and research collaboration. This will provide “HOPE” for future treatment and increased understanding of this disease.
But what about veterans like me who may not benefit from these future discoveries and treatments? We owe our veterans treatment now, however limited.
Over 5 years ago, the Secretary for Veterans Affairs extended service connected benefits to Gulf War veterans like me based on the research study results. Since then new research has shown an increased incidence of ALS among all veterans. The Secretary for Veterans Affairs should act now with the same decisiveness and the same concern for veterans by extending veterans’ benefits to all veterans suffering from this terrible disease.
I’ve attached a copy of a letter I gave to and discussed with Sec. Nicholson on March 23rd of this year.
Thank you for your attention and for giving me this opportunity to speak.
God Bless Our Veterans! And God Bless America!
**Included with my testimony is the letter which I presented and discussed with Secretary Nicholson on 23 March 2007.
Mt. Pleasant, SC.
March 23, 2007
Secretary R. James Nicholson
Department of Veterans Affairs
Dear Secretary Nicholson,
In 2001, the Veterans' Administration and Department of Defense rightly recognized the relationship between Gulf War service and Amyotrophic Lateral Sclerosis (ALS), commonly referred to as Lou Gerhig's Disease. At that time the V A duly decided that Gulf War veterans with ALS automatically received a service connected disability. It also expedited ALS cases because this relentless disease, which is a death sentence, progresses so rapidly. This decision was widely applauded because of the compassion it showed to those who have served our country so bravely.
Since that time, an important study conducted at The Harvard School of Public Health has concluded that not just Gulf veterans, but all veterans are a higher risk of developing ALS. The 2005 Weisskopfstudy found that veterans who have served at any time in the last century are at a 60% greater risk than the general population. In a recent review of all relevant scientific literature, the National Academies' Institute of Medicine concluded that "the implication is that military service in general-not confined to exposures specific to the Gulf War-is related to the development of ALS."
These findings would suggest that the V A is therefore only granting benefits to a specific portion of those exposed to whatever trigger is responsible for our veterans' increased risk. How can we differentiate between all veterans with a 1.6 higher incident rate and Gulf War veterans with a 2.0 higher incident rate than the general population?
Because of the appropriate precedent set in 2001 and the additional studies subsequent to that, the V A should now grant service connected disability to all veterans! I would be more than happy to discuss this further with you or your staff. You may contact me at 843-971-5000.
Thomas R. Mikolajcik
Brig. Gen. USAF (Ret.)