ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, July 30, 2008

Senator Coburn's Assertions

From the transcript of his statements to the Senate on Monday, July 28, when he fought having the Advancing America's Priorities Act (which includes the ALS Registry Act which he held) being put on the Senate's active agenda...

"The ALS Registry is something the CDC can already do. As a matter of fact, their own quote on it was that they spend only $29 million a year on ALS. We are going to spend $75 million on a registry that doesn't cure"

Does anyone have information that can prove or disprove his assertions (particularly the one regarding the CDC's ability to do a registry already)? Thanks if anyone has any insights.

Recap of Presumptive Disability for U.S. Military Veterans

From the Baltimore Sun an excellent recap...

Veterans get ALS disability
'Lou Gehrig's disease' to be listed as service-connected, U.S. says
By Josh Mitchell
Sun reporter
July 25, 2008

The Department of Veterans Affairs plans to provide full disability payments for Lou Gehrig's disease, tacitly acknowledging for the first time a generalized link between the fatal neurological disorder and military service.Veterans and patient advocates have advocated the change for years, citing studies showing that former soldiers are more likely than the general population to contract the disease, formally known as amyotrophic lateral sclerosis, or ALS. The VA already extends full compensation to ALS-stricken veterans of the first Persian Gulf war, who, according to a study earlier this decade, are twice as likely as other service members to contract the disease.Scientists don't know the cause of ALS, and various studies in the past decade have failed to identify a specific link with conditions of military service. But the higher incidence of ALS among veterans has led to comparisons with the controversy over Agent Orange, a highly toxic herbicide sprayed by the U.S. military over Vietnam and blamed for illnesses afflicting thousands of veterans.ALS is believed to afflict several thousand former service members."We cannot rule it in as being service-connected, but we can't rule it out," said Bernard Rostker, a senior fellow at the RAND Corp. and former special assistant to the deputy defense secretary for Gulf War illnesses. "Given the nature of the disease and the nature of care that is required, I think it is just a wonderful move by the administration.... It's the right thing to do."A department spokesman said that the VA secretary, Dr. James Peake, has tentatively decided to designate ALS as a "service-connected disability" but that details are still being worked out and must be reviewed by government lawyers.The tentative policy change was announced this month by Sen. Lindsey Graham and Rep. Henry E. Brown Jr., both South Carolina Republicans, who said the disability payments could be offered as early as Aug. 1. Graham and Brown had proposed legislation requiring the change at the urging of a retired Air Force general with ALS.Named after Lou Gehrig, the legendary New York Yankees first baseman who was its most prominent victim, ALS afflicts about 30,000 Americans. It progressively kills motor neurons until paralysis sets in, though the mind stays sharp. Most patients die within five years of diagnosis.Typically, veterans applying for disability compensation from the VA must prove that their condition is related to military service. If ALS becomes "service-connected," the department would presume that the victim had contracted it through military service and would automatically qualify for payments.Designating an illness as service-connected - as opposed to evaluating each case individually - is rare, said a VA spokesman, Jim Benson.With the change, veterans would receive full medical coverage, funds to buy equipment such as ramps and wheelchair-accessible vans and monthly disability payments. Their families would also be eligible for disability payments after the veterans die.Advocates say the cost of the benefits will be minimal because the disease is so rare. Edmund Sistek, an Army veteran who lives in Pikesville, said the extra compensation would amount to "pocket change" for the government but greatly improve the quality of life for dying veterans."There's a lot of guys out there not as fortunate as me to have been able to make enough money during their natural lives to afford the health care benefits I could afford," said Sistek, a retired middle school teacher.Sistek, who served with the Army for three years in the Panama Canal zone in the 1970s, was diagnosed with the disease a decade ago. He increasingly has trouble moving around and talking.In the years after the 1990-1991 Gulf War, ALS was one of the ailments grouped in the broad category of veterans' medical problems known as Gulf War syndrome. Many tudies have looked at potential causes for these ailments, including toxic emissions from oil well fires, exposure to depleted uranium munitions, pesticides, inoculations against infectious diseases and consumption of anti-nerve gas tablets. But none has been identified.The VA extended full benefits to ALS-stricken veterans of the first Gulf War in 2001, after a study released by the Defense and Veterans Affairs departments showed that Gulf War vets were twice as likely as other soldiers to get ALS. It did not suggest possible causes.A study several years later reported that veterans were 60 percent more likely than the general population to contract ALS. The VA also funded a registry between 2002 to 2007 that identified more than 2,100 veterans with ALS. Many have since died.Researchers at Duke University are in the final year of a five-year ALS study funded by the National Institutes of Health, the most ambitious attempt so far to interview veterans on the ALS registry and identify links between ALS and military service.

Tuesday, July 29, 2008

Shonda Schilling

Shonda gets it when it comes to ALS advocacy and awareness.

Shonda bags groceries for ALS.

From the ALS Association Washington, DC office

From the ALS Association Washington, DC office
_____

Let's Continue the Fight

By a vote of 52-40 yesterday, the Senate voted against proceeding to debate on S. 3297, the Advancing America's Priorities Act, which included the ALS Registry Act. Unfortunately, we fell eight votes short of the 60 that were required for the Senate to begin consideration of S. 3297.

The Senate still may return to the issue at a later date so the fight is NOT over. We already are working with Senate Majority Leader Harry Reid (D-NV) and our supporters in the Senate to find other opportunities to pass the ALS Registry Act as soon as possible this year so we need you to stay involved. Let's continue the fight.

We want to thank the thousands of advocates across the country who contacted their Senators over the past few days. Your outreach led 52 Senators to vote for the bill, including every Democrat present for the vote and three Republicans: Senators Norm Coleman (R-MN), Gordon Smith (R-OR), and John Warner (R-VA), who is the chief Republican sponsor of the ALS Registry Act. To see how your Senators voted, please visit the Advocacy Action Center of our website by clicking here or pasting this URL into a new browser window: http://capwiz.com/alsa/issues/votes/?votenum=189&chamber=S&congress=1102&alertid=11716726

Next Steps
We still have an opportunity to pass S. 3297 and the ALS Registry Act this year so it's absolutely critical that yesterday's disappointment not deter us from our goal. We need to continue the fight to pass the ALS Registry Act this year!

Yesterday's vote was not a reflection of the support for the ALS Registry Act. Indeed, more than three fourths of the Senate are on record as supporting the bill, meaning that we still have the support to pass the Senate. Unfortunately, S. 3297 and the ALS Registry Act became caught up in a broader, partisan debate between Democrats and Republicans about issues not related to ALS, like energy, heating assistance and other issues before the Senate. Unfortunately, election year politics are impacting every issue debated by the Senate. Nevertheless, it is important that we hold Senators accountable for their votes as we continue our efforts to pass the ALS Registry Act.

Therefore, as we work with Senators on additional opportunities to move the ALS Registry Act forward, there are two important things you can do:
First, please thank your Senators who voted in support of us to advance S. 3297. It is important that our supporters know we appreciate their continued efforts to find a treatment and cure.
Second, we need to hold those Senators who voted against us accountable for their votes. We need to let them know that it is not acceptable to play politics with the lives of people with ALS.
Senators who voted against us used several different excuses, including that a single Senator - Senator Tom Coburn - has a right to block legislation. They also claimed that the Senate should debate energy legislation before considering S. 3297. We need to let Senators know that a vote against S. 3297 was a vote against people with ALS. That they chose to support Senator Tom Coburn instead of their constituents. That they voted to debate the price of gasoline at the expense of the lives of people with ALS. And that we will remember the vote.

Sample letters you can send are available in the Advocacy Action Center of our website. When you enter your zipcode on the site, the system will automatically generate the appropriate letter either thanking them for their support or holding them accountable for their opposition. Please send these letters today and help us send a strong message to the Senate. And please make sure to only contact the Senators from your state. After all, they are accountable to you! Click here to go to the Advocacy Action Center to send your letters or paste this URL in a new browser window: http://capwiz.com/alsa/issues/alert/?alertid=11716726&type=CO

Thank you again for your continued advocacy. Although yesterday's vote did not produce the results all of us had hoped for, we cannot be deterred. Let's continue the fight!

If you have any questions or would like additional information about this Update, please contact the Advocacy Department at advocacy@alsa-national.org or toll-free at 1-877-444-ALSA.