Monday, May 3, 2010

Gulf War Veteran’s Death Provides Powerful Reminder of the Urgency of Military Medical Research

Written by Anthony Hardie, 91outcomes.com Publisher/Editor

(91outcomes.com) At the end of July 2007, I had the privilege of meeting and testifying before Congress in Washington, D.C. on behalf of our fellow Gulf War veterans alongside Retired Brigadier General Tom “General Mik” Mikolajcik. 

I learned this week that General Mik’s exhausted body had finally succumbed to the nearly always fatal ALS, a horrifying, paralyzing, degenerative neurological disease that leaves the mind intact, named for taking the life of baseball great Lou Gehrig just prior to the U.S. entry into World War II nearly seven decades earlier. 

Though the “expected” rate of ALS would have suggested at most just a handful of cases of ALS among Gulf War veterans age 60 or older, ALS has been diagnosed in that number of veterans of the 1991 Gulf War many times over.  Mainly in their 20s, 30s, and 40s, these Gulf War veterans’ disease have led involved scientific researchers to call it an outbreak while also potentially providing important clues about the nature of this and the other diseases affecting us Gulf War veterans at highly disproportionate rates.

General Mik’s home state of South Carolina carried news coverage at the time that captured his words from that hot summer D.C. morning:  

"Only by the grace of God am I here to speak with you today," he told the committee that day, "and I have vowed to keep speaking until I no longer can."

"It's been nearly 70 years since Lou Gehrig made his farewell speech, and we have basically nothing," he said. "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?"

His wife then emptied a briefcase of antique children's blocks on the hearing table, blocks that children would play with during Gehrig's time.

"These blocks represent ongoing ALS research," Mikolajcik said. "All are separate, none are connected and there is no communication going on between them."

Mikolajcik's voice and mind were as sharp as his body was limp.

Sitting next to General Mik on the three-person panel, I testified next.  Like him, and Maj. Denise Nichols, the other Gulf War veteran next to me, we had allowed our private health lives to become public in the urgent hopes of educating and aiding others.  Doing my best to also represent our fellow veterans at the hearing on another of the health issues unexpectedly affecting large numbers of us who served in the 1991 Gulf War -- the chronic multisymptom illness more usually termed Gulf War Illness or Gulf War Syndrome that is today known, according to the Institute of Medicine, to afflict 250,000 of the War’s 696,842 veterans -- I told the Congressional committee:

“For Members of the Committee who may not be familiar, Gulf War troops were exposed to a host of toxic exposures experienced, often in combination, including: multiple low-level exposures to chemical warfare agents, including from bombed munitions factories and detonated munitions bunkers; experimental drugs mandated without informed consent like Pyridostigmine Bromide (PB) pills intended to help survive nerve agent exposure; inhalation of the incredibly high levels of micro-fine particulate matter from the Kuwaiti oil well fire plumes; experimental vaccines like anthrax, botulinum, and others; inhaled and ingested depleted uranium (DU) particulate matter; smoke from the daily burning of trash and feces; multiple pesticides; and petroleum products and byproducts.

“For some of us who developed lasting health effects from this veritable toxic soup of hazardous exposures, it came while still in the Gulf.  For others, it did not come until sometime after returning home. 

“Hearing this list of exposures, most people would find it of no surprise that so many thousands of Gulf war veterans became ill, or that so many remain ill and injured today.  And it should be no surprise that so many have developed diagnosable, serious conditions like ALS, MS, and others. 

“What is stunning is that sixteen years later, there are still few tangible results that might improve the health of those who became ill and remain ill.  And we still have little information of any value to provide to Gulf War veterans or their health care providers that might help to improve Gulf War veterans’ health.

“Years were squandered disputing whether Gulf war veterans were really ill, studying stress, reporting that what was wrong with Gulf War veterans was the same as after every war.  An incredible amount of effort was put into disproving the claims of countless veterans testifying before Congress about chemical and other exposures.  Some of that negative effort appears to continue even today.

“It is stunning that after nearly two decades, we still have little information to provide to Gulf War veterans who remain ill from their service.”

It’s true that since that day in 2007, we have seen a few successes towards improving the health and lives of veterans suffering from ALS, Gulf War Illness, and other health conditions affecting Gulf War veterans.  However, given the sharply limited nature and number of useful outcomes to date, this is to reemphasize what I told the Members of Congress that day:

“The five-point statement of goals that came from Gulf War veterans more than a decade ago still holds true today: 

  1. Gulf War veterans deserved then and deserve now an assurance that an exhaustive investigation has been fulfilled to identify all possible Gulf War exposures;
  2. That appropriate scientific research is promptly completed to connect known or potential Gulf War exposures with health outcomes;
  3. That medical treatment is based on that scientific research;
  4. That compensation is provided to those veterans left disabled by their military service if the health conditions cannot be reversed; and
  5. That every effort is made to ensure that never again can what happened to Gulf War veterans be allowed to happen.”

For the Gulf War veterans who have died from or are currently suffering from ALS, MS, brain, testicular and other cancers, and for the more than one-third of us who today still suffer the debilitating effects of Gulf War associated chronic multisymptom illness, we must continue our nation’s efforts on behalf of our fellow veterans until effective treatments – and preventive measures – can be found.

ALS is the most deadly disease of them all, and most other diseases known to science pale in comparison to its dreadful effects.  Yet because it is so rare, it still has only minimal funding aimed at finding life-extending treatments. 

But, the current VA leadership, with its internal Task Force on Gulf War Veterans Illnesses and public report still open for comment through May 3rd, is clearly leading major change that again has hope on the horizon for so many of us.   And ongoing Congressional action on military health research funding is also renewing hope.

But what is urgently needed is an urgently pursued renewal of a comprehensive and coordinated federal health research program related to the causes and treatments of the array of disabling diseases that affect Gulf War veterans, including for ALS, MS, and for Gulf War Illness.  At the size and scope called for by the IOM that would be comparable to a Manhattan Project for today, this program would undoubtedly provide many long-awaited answers. 

Such changes are of course too late for General Mik and for so many of our fellow veterans of the 1991 Gulf War who have gone on before us from diseases directly resulting from Gulf War service.  Hopefully, these changes won’t be too late to provide tangible and potentially cost-saving improvements in the health and lives of those of us still living.  And, pursuing these military research and treatment avenues will help ensure that countless thousands of those who will come after us may well be able to avoid the health outcomes experienced by hundreds of thousands of us Gulf War veterans.

In joyful tribute to his life, in solemn honor of his painful death, in recognition of his work , and in eternal remembrance of his wise, firm, heartfelt words told to Congress that day and both publicly and privately to me and to so many others before and since, General Mik’s extended obituary from his hometown Charleston Post and Courier is shared below.

And for those of us veterans of the 1991 Gulf War still struggling with the enduring health effects of that war, short as wars go but long in impact on those who fought it, I think General Mik would have appreciated sharing the words of the man for whom the disease that would take his life was named, words that have meaning for all of us:

“So, I close in saying that I might have been given a bad break, but I've got an awful lot to live for.”    -Lou Gehrig, 1941

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Retired brigadier general used his battle with ALS to focus attention on disease

Written by Glenn Smith, The Post and Courier, with Diane Knich contributing.

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Retired Air Force Brig. Gen. Thomas Mikolajcik campaigned to raise awareness about amyotrophic lateral sclerosis, better known as Lou Gehrig's disease.

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Retired Air Force Brig. Gen. Thomas Mikolajcik of Mount Pleasant went to Capitol Hill in 2006 to seek support for ALS research and draw attention to a higher incidence of the fatal disease among military veterans.

(Charleston, S.C.) - Retired Brig. Gen. Thomas Mikolajcik, a career military man who waged his greatest battle fighting to help victims of Lou Gehrig's disease, died Saturday [April 17, 2010].

He was 63.

Mikolajcik, former commander of the Charleston Air Force Base, was diagnosed in 2003 with amyotrophic lateral sclerosis, better known as ALS, or Lou Gehrig's disease. The disease progressively kills nerve cells, robbing its victims of muscle control until they become paralyzed and die, usually within two to five years. There is no cure.

Mikolajcik knew there was no chance he would beat the disease. He fought to improve the odds for future victims.

Carmen, his wife of 40 years, said her husband never asked, "Why me?" He told her early on, "I could cry or I could do something to help others," she said. "He chose to do that."

Mikolajcik was "always a very persistent man, very ethical, very principled," she said. "Once he got on a cause, it was usually easier to say 'yes' to him than to say 'no.' "

The Mount Pleasant resident was instrumental in forming the first ALS Association chapter in South Carolina in 2005. He also pushed for the creation of a local clinic that opened in July 2006 to treat those stricken with the neurological disorder. He helped lead an ALS support group, promoted the annual fundraising walk for the ALS chapter and made public appearances to focus attention on the disease.

The brigadier general visited Washington three times to push for ALS research and he testified before a congressional committee in July 2007. He fought to spur government action on the link between military service and ALS. Studies have found that veterans are much more likely to contract the disease than those who have never served in the military. No one is sure why.

Mikolajcik's efforts helped win additional defense funding for ALS research, bolstered Pentagon interest in the disease and paved the way for legislation establishing an ALS database to warehouse information on the disease for scientists and patients. President George W. Bush signed the ALS Registry Act into law in October.

Mikolajcik's work won him much praise and recognition. Last year, the ALS Association South Carolina Chapter honored Mikolajcik and his family for their spirit, work and courage, describing them as role models for people living with the disease.

Rebecca Jordan, the chapter's executive director, said Mikolajcik's work helped thousands of veterans and other people with ALS. "Just being in his presence made people feel better," she said.

The last time she saw him was in February. He was completely paralyzed and was having difficulty breathing, but he told her he wished he could do more.

Mikolajcik spoke candidly about the toll the disease took on his body, but he wasn't interested in sympathy or pity. He saw himself as a strong-willed spokesman who could shed light on a disease that receives little national attention.

"God has given me a cross to bear, but he also allows me to still have the energy, the faculties and the voice to maybe make a difference, whether it be in helping other people or in raising awareness," Mikolajcik said in 2006.

The grandson of Polish immigrants, he made service to country and community a hallmark theme in his life. At his 60th birthday party in August 2006, 250 people from around the globe gathered in North Charleston to pay tribute to the aging warrior. Gov. Mark Sanford lauded Mikolajcik for leading "a true life of service before self." Brig. Gen. Susan Desjardins called him "an absolute hero."

Col. Martha Meeker, Joint Base Charleston commander, said Mikolajcik's favorite quote started with the phrase "Be Strong and Courageous," and he was both. "Throughout his life in the Air Force and in the community he was a leader who others looked up to, and the strength and courage he showed at the end of his life deeply touched everyone around him."

During a 27-year career in the Air Force, Mikolajcik commanded a C-130 Wing in Rhein-Main, Germany, during Desert Shield/Desert Storm, ran all air operations during the Somalia humanitarian campaign, and served as Air Force director of transportation at the Pentagon. He ran the Charleston Air Force Base from 1991 to 1994. He retired from the Air Force in 1996.

Mikolajcik remained active as a military advisor to the Charleston Metro Chamber of Commerce and as a mentor for military commanders in the area. His contributions proved a key factor in local and state efforts to minimize base closures and job losses during the Pentagon's Base Realignment and Closure process in 2005.

Last year, the Charleston Air Force Base honored its former wing commander by breaking ground on the Brigadier General Thomas R. Mikolajcik Child Development Center, a $9.8 million facility that will accommodate 305 children.

Meeker said, "every time one of our airmen takes their child to the General Mikolajcik day care center or a sailor arrives at the General Mikolajcik engineering laboratory, he will be remembered. And every time a veteran suffering from ALS receives VA care, he will be thanked."

Mikolajcik also was a founding member of the Mount Pleasant Open Space Foundation and a senior advisor to the National Defense Transportation Association's local chapter.

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