ALS-Gulf War treatment measure passes House

Written by Anthony Hardie, 91outcomes

(91outcomes.blogspot.com – Friday, August 7, 2009) – A provision in the defense spending bill currently winding its way through Congress would provide a $2 million appropriation earmarked for an ALS therapy development institute/Gulf War illness research project.

The spending measure was inserted into the version of the federal Fiscal Year 2010 Department of Defense Appropriations Act by Representatives Harry Brown (R-S.C.-01) and Michael Capuano (D-Mass.-08), and would be in addition to $1.2 million first included for the project in the FY08 Defense spending bill.

Previous research has noted rates of ALS much higher than expected in veterans of the 1991 Gulf War, particularly those who were near Khamisiyah, Iraq, when Iraqi munitions stores were detonated. The U.S. Department of Defense notified Gulf War veterans that the detonated munitions included those containing sarin and cyclosarin nerve agents. The detonated munitions may also have included mustard gas and other chemical warfare agents known to have been among those stored by the Iraqi military at the time.

The funding would be provided to the ALS Therapy Development Institute Gulf War Research Project (ALS TDI), a non-profit entity located at 215 First Street in Cambridge, Mass. 02142

According to the request:

Retired “General Mik” Led Efforts to Create the ALS/Gulf War Center in 2007

In his opening statement before a July 2007 Congressional hearing on Gulf War illnesses, Brown introduced Charleston, South Carolina Brigadier General Thomas Mikolajcik, a former U.S. Air Force pilot with advanced ALS, stating:

“Numerous studies have shown that individuals who have served in the military have a high propensity towards being diagnosed with ALS. The work of my friend General Mik has brought to my attention the growing number of veterans contracting ALS outside of service during the first Gulf War. His story serves as a testament to the need for leadership at the Federal level towards developing a comprehensive ALS research program and a clear VA/DoD policy ensuring that all veterans with service-connected-ALS receive the attention they deserve. We must step up to the plate and lead federal research into the causes of ALS and how we can better improve treatment for this terrible disease and we must do so now.”

During the 2007 hearing, Mikolajcik expressed concern over the decentralized research effort and testified, “The government should be compelled to assume a leadership position for ALS research. 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!’”

Mikolajcik proposed a congressionally directed task force to identify a lead federal agency for the research of ALS and a strategic plan to address a comprehensive, forward looking and all inclusive research program for the disease.

Brown concluded, “It is our duty to provide our Nation’s veterans with access to the best health care possible. It is necessary for a comprehensive VA/DOD policy to ensure this quality care, and the establishment of a research oversight committee may be the right direction to serve Gulf War veterans and the growing number of veterans with ALS.”

The FY10 Defense spending bill now goes to the Senate for consideration, where the full bill is expected to be addressed in September 2009. A companion version of the bill is already under consideration there.

Letters and emails expressing support or increased funding to the full $4.8 million for the ALS/Gulf War provision should be addressed to:

Rep. David Obey, Chair and Rep. Jerry Lewis, Ranking Member, U.S. House of Representatives Committee on Appropriations, The Capitol, H-218, Washington, D.C. 20515

Senator Daniel Inouye, Chair and Senator Thad Cochrane, Ranking Member, U.S. Senate Committee on Appropriations, The Capitol, S-128, Washington, D.C. 20510

Courtesy copies of the original letters or emails should be sent to the Senator and Representative who represent the state and Congressional district in which their author resides. A nationwide database providing complete contact information on local Congressional representation is available at www.house.gov/writerep.

Several studies (conducted by DOD and the VA) have concluded that veterans of the first Gulf War develop the fatal neurodegenerative disease known as ALS twice as frequently as the general population. Another study has concluded that military service is an identified risk factor for developing ALS. ALS TDI is requesting $4.8 million for continued support of its cutting edge fast track drug discovery & translational research program and to support clinical trials of effective drugs.1) Identify physiological pathways and molecules in animal models of disease progression. Compare animal gene expression (transcriptome) to that of humans by employing the largest database ever compiled of animal and ALS patient samples. 2) Operate large scale validation program, using profiling technologies, to modulate gene expression in those genes determined to be candidates for disease effect. 3) Create a comprehensive translational medicine initiative to identify biomarkers for disease staging and prognosis, and drug efficacy and patient response. (Visit the ALS TDI website). Request: $4,830,000