May Was ALS Awareness Month - What Were The Outcomes?

May was ALS Awareness Month.

Again this year it featured daily vignettes of families dealing with ALS on the MDA ALS site. This year it featured a flatteringly similar campaign of vignettes of families dealing with ALS on the ALSA site.

We saw almost a thousand advocates converge (some enduring huge amounts of difficulty to get there) on Washington, DC, to talk to legislators about old and new legislative priorities related to amyotrophic lateral sclerosis and the wicked wake it leaves, especially for veterans.

What were the outcomes? What were the measurables? What value did ALS Awareness Month add?

Google gives us an interesting and inexpensive insight into news measures. Google "amyotrophic" and look at news items in May. There are a few items related to the vignettes. There are more items related to local human interest stories. There are more than enough obituaries. There are fundraisers. There are a few press releases from the bio-pharm industry with "promising" science which might impress investors.

Try the same exercise to look at the Google news archive from any other month.

Did ALS Awareness Month give us any increase in the quality or quantity of news related to ALS awareness?

Top 10 Worst Diseases?

The ALS Registry Act is needed to build on projects underway in three test cities and is supported even by this Administration. This act would help determine the causes of ALS, and more importantly help to find an effective treatment for this disease. We need this registry now! After ten years we still think that at any given time 30,000, in this country, are living with ALS. That is equal to the same old statistics that 5,000 will die annually. I would like to defend ALS but where do we draw the data from? How long are we going to allow our awareness efforts to be overshadowed by outdated recording methods? ALS is complicated as well as intense, 2-5 years life expectancies make it all the more important to monitor diagnoses as well as labeling the correct cause of death.
Millions of people each year have perished as a result of one of any number of seemingly unstoppable diseases. Here are but ten, in no particular order, that have wiped out mankind since the earliest recordings. The list, without ALS was found at "The List Universe.com".

1. Polio 10,000 Deaths since 1916
2. Influenza 36,000 Deaths per year
3. Spanish Flu Between 1918-19: 50-100 Million dead
4. Bubonic Plague 250 Million Europeans Dead (1/3 population)
5. Malaria 2.7 Million Deaths per year-2800 children per day
6. Ebola 160,000 Deaths since 2000
7. Cholera 12,000 Deaths since 1991
8. Smallpox Native Americans suffer a population drop from 12 Mil. to 235,000
9. AIDS 25 Million since 1981
10. The Black Death 75 million Deaths

"Democracies Don't Let People Die"

There is an op-ed in this morning's Wall Street Journal by Daniel Henninger entitled, "Democracies Don't Let People Die."

It speaks of what is happening (or more correctly what isn't happening) in Myanmar and China.

When I first read the title of the piece, I thought it might be about ALS in America.

Senator Tom Coburn Please Come

Senator Tom Coburn has successfully blocked the ALS Registry Legislation that passed the House by an overwhelming margin and enjoys rare bipartisan co-sponsorship by 74 of his Senate colleagues. It is hard to believe that one individual can hold this legislation hostage but it is true. It sure should scare all citizens that this can be so.

Over 500 ALS patients will attend the ALS Association National Advocacy and Public Policy Conference in Washington, D.C., next week where most of them will visit their Congressional legislations. While in Washington all of the conference attendees will band together in a candle light ceremony to remember the 5600 that died from ALS since the conference only a year ago.

Actually since there is no credible documentation of how many have ALS or die each year, the 5600 is a guesstimate that apparently has remained unchanged and unchallenged for the past decade. That is the whole purpose of the legislation, to build a credible database by which to evaluate the true prevalence of the disease and provide data that can direct research to help find the cause and a cure.

Why is a registry needed asks the good Senator Coburn? Without reliable data it is likely that direction of research and allocation of research funds will likely allow the absence of a diagnostic test, ignorance of the cause, and the failure to find meaningful therapies, much less a cure, will continue to be the status quo.

Somehow that status quo speaks ill of the will of a nation that can put astronauts in space on a regular and frequent basis. Or a nation who's pharmaceutical companies can spend billions on advertising rather than the research needed to address "orphan" diseases like ALS.

Shown above is a notice that has been posted by one of those who lost a loved one to this disease for which there are no effective therapies and no cure. It is a disease that ends up with a mind that is left intact in a body that is completely paralyzed. Maybe Senator Coburn missed these sessions in his purported medical training. No matter, because he is being invited to attend this commemorative candle light ceremony at the World War II Memorial on the Capitol Mall.

I wonder if he will have the courage to face those suffering from the disease and the many more who have lost loved ones. If he doesn't maybe some of these brave souls will hold a ceremony in front of his office in the Senate Office Building.

I think it is ironic knowing the Senator's one man log jam to view the warm image shown on his website.

ALS VA Registry Closed, Court Dismissed

The Department of Veterans Affairs (VA) Cooperative Studies Program was established to create a National Registry of Veterans with Amyotrophic Lateral Sclerosis (ALS). United States military veterans with ALS were identified through national VA electronic medical record databases and nationwide publicity efforts for an enrollment period of 4 1/2 years. Diagnoses were confirmed by medical record reviews. Registrants were asked to participate in a DNA bank. Follow-up telephone interviews are conducted every 6 months to track participants' health status. As of September 30, 2007, 2,400 veterans had consented to participate in the registry, 2,068 were included after medical record review, 995 were still living and actively participating, and 1,573 consented to participate in the DNA bank. 979 participants had been enrolled in the registry for at least 1 year, 497 for at least 2 years, and 205 for at least 3 years.

Fourteen studies were approved to use registry data for epidemiological, observational, and interventional protocols. This registry proved to be a successful model for identifying large numbers of patients with a relatively rare disease and enrolling them into multiple studies, including genetic protocols.
The VA concluded that if you served in the Southwest Asia Theater of Operations (Iraq, Kuwait, Saudi Arabia, the neutral zone between Iraq and Saudi Arabia, Bahrain, Qatar, the United Arab Emirates, Oman, the Gulf of Aden, the Gulf of Oman, the Persian Gulf, the Arabian Sea, the Red Sea, and the airspace above these locations) between August 2, 1990 and July 31, 1991 then ALS is presumed service connected. This means that those that apply for benefits are service connected automatically.

Just when the ALS data starts to really focus on the occurrences, would'nt you know it, the project runs out of funding and the enrollment was halted. The military areas of service where established and a set of new rules where ordained. This ALS VA Registry rule book was an opened and closed case.

What did the ALS VA Registry accomplish? Was it a genuine concern for the causes of ALS, basic benefits defined or to avoid possible future lawsuits? Was the VA aware of a similar study conducted by British researchers that reported ALS also occured in their soldiers who served thousands of miles away and that some never even saw battle? There were nearly 120,000 British and American soldiers participating in the 1990-1991 year of the first Gulf War. After the war these servicemen had two relevant nervous system disorders, the Gulf War syndrome and ALS (amyotrophic lateral sclerosis). This study published in the Nov. 26, 2002 edition of Neurology, found that like their American counterparts, many of the 50,000 British soldiers who served in operations Desert Storm and Desert Shield report a higher rate of distinct symptoms that occurred within months of their return from active duty.

http://www.citlink.net/~bhima/gulfwarsyndrom.htm

How naive of us to think the VA Registry was going to operate indefinitely but wait, we're still at war. In fact, this is the fifth year of the Iraq War. In fact, it is the 1,828th day since Mission Accomplished.
March 2007, Tom Mikolajcik, a retired Air Force general and former commander of the Charleston Air Force Base, testified before the House Committee on Veteran's Affairs. Mikolajcik was diagnosed with Lou Gehrig's disease five years ago.

He said, "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."
Recently, Dr. James Peake, secretary of Veterans Affairs, visited Charleston S.C. to meet with Tom Mikolajcik. The retired general urged Peake to grant all veterans with ALS a service-connected disability. Currently only Gulf War veterans are covered, Mikolajcik said. "My comrades in arms don't get the same benefits, and it's not fair," he said. For unknown reasons, veterans have a 60 percent higher chance of developing ALS. The retired general described the meeting as "very personable." In closing, he said "Now we just wait and pray."