Thursday, January 31, 2008

A Simple cause for ALS?

The most emailed story in the New York Times---
What if it's something really simple that causes ALS?

January 29, 2008
The Claim: Never Drink Hot Water From the Tap
The claim has the ring of a myth. But environmental scientists say it is real. The reason is that hot water dissolves contaminants more quickly than cold water, and many pipes in homes contain lead that can leach into water. And lead can damage the brain and nervous system, especially in young children. Lead is rarely found in source water, but can enter it through corroded plumbing. The Environmental Protection Agency says that older homes are more likely to have lead pipes and fixtures, but that even newer plumbing advertised as “lead-free” can still contain as much as 8 percent lead. A study published in The Journal of Environmental Health in 2002 found that tap water represented 14 to 20 percent of total lead exposure.
Scientists emphasize that the risk is small. But to minimize it, the E.P.A. says cold tap water should always be used for preparing baby formula, cooking and drinking. It also warns that boiling water does not remove lead but can actually increase its concentration. More information is at or
(800) 424-5323 (LEAD).
Hot water from the tap should never be used for cooking or drinking.

I'll bet you don't brush your teeth with warm water after reading that.

Many people feel that ALS is caused by a genetic predisposition and an environmental trigger. What if the trigger is something simple like washing Idaho potatoes in warm tap water?

We'll never know until someone takes the public health problem of ALS seriously enough to start a complete roster of cases. Who knows what the triggers are! They could be simple and avoidable. Tomorrow's cases of ALS could very well be preventable if we only make the necessary effort to compile the data to figure out the triggers.

In the meantime, we all live our lives wondering if we have the predisposition as we walk through a minefield of potential triggers.

BioShield of Shame

"If ALS were a terrorist group taking thousands of lives each year, this country would throw people and technology and money at it until we had won". It's like a terrorist in our midst, going strong. (Marilyn Adams, USAToday, June 30, 2004)

On September 11, 2001, the United States experienced the worst terrorist attack in our history. That day is planted in our minds forever and is a crisis we will not soon forget. As the nation dealt with this tragedy, it would face a second wave in the form of a biological attack. The suspicion of anthrax in Florida would lead to the discovery that deadly spores had been distributed through the postal system, causing 22 cases of anthrax, including 5 deaths, and for a while changing the protocal of public health.

Six years later America's homeland federal defense program named Project BioShield is still very much alive. BioShield was awarded $5.6 billion in funding in 2004 to develop drugs and vaccines to protect Americans against biological and chemical attacks. It constitutes the largest federal effort ever to protect civilians from an anthrax attack. Anthrax vaccines destined for wide civilian use despite uncertainty about their effectiveness and the ongoing debate about potential health problems.

All this funding for a fading threat using a questionable vaccine that was fast tracked through the FDA? This one instance may have changed public health awareness for a short period but has left similar health threats forgotten. ALS is not fading and will soon be the new public health concern that is a real terrorist threat. ALS is the threat that has been unnoticed for 134 years, has a profound amount of suffering and deaths world wide. Is BioShield a practicable program or more money for nothing?

What Might Have Been... Gulf War

The panel discussions on the networks the other night regarding the State of the Union speech had a recurring theme of the “what-might-have-been” quality that will follow the Bush 43 presidency. I feel that if we had done a better job of getting the word out about ALS that we actually could have helped the outcomes of the last seven years.

Before the decision to invade Iraq, there were published studies that showed the astronomical incidence of ALS among veterans of the 1990-1991 Gulf War in Kuwait. “We” knew that there was something horribly wrong about the health of our veterans of that war.

If “we” had made the ALS-Gulf War connection to register with the President and the Vice-President and the Secretary of Defense, would that have made a difference in their decision to send troops into Iraq? Probably not, but they should have been forced to acknowledge that there were clear and horrible ALS dangers to those who served in the region in the prior decade. If “we” had forced the facts about ALS and the first Gulf War to register with every legislator who was asked to vote to support the invasion of Iraq, would that have made a difference? Maybe it would have. I would hope it could have made a huge difference in their willingness to put our troops on the ground in that region, especially when there was a premise of toxic weapons that could clearly relate to neurological problems. What if we had pulled out all the stops and spread the word?

So, if “we” people who pay attention to ALS had done a better job of spreading the word to the public and to the every legislator and soldier and parent and veterans’ group and diplomat before the fateful decisions that led to the invasion of Iraq, what might have been? “We” must do a better job of spreading the word.

Sunday, January 27, 2008

Future Clinical Trial Recruitment

Application for this Invention
A method of recruiting clinical trial candidates using an online community is disclosed that includes creating an illness-specific online community. Membership accounts are created for members joining the online community. Personal and medical information is collected from the members and categorized and stored in a member database. Information on a clinical trial is collected from a client. The member database is searched to determine candidates for the clinical trial.
Related ArticleIn 2004,
U.S. pharmaceutical companies invested $39 billion on research & development. Of that investment, $18 billion was spent on clinical development, 16% of which, or just under $3 billion, was spent on the recruitment of suitable patients for U.S. States, 80% of which are delayed significantly due to unfulfilled enrollment. Patient recruitment accounts for 30% of time spent on clinical trials. Due to the challenge of finding suitable participants, 94% of clinical trials miss their enrollment deadlines in the U.S. Today's methods of recruiting participants have changed little in the past 20 years, and only 4%-6% of eligible patients who suffer from severe and life-threatening illnesses take part in U.S. clinical trials.
Tragic Truth by ALS Grumpy
These statistics are deplorable. It is hard to accept that the pharmas cannot devise a more fruitful enrollment process if they wanted to. Methinks they spend so much on advertising important developments like drugs for E.D., hair loss, leaky valves and other high return drugs, that they spend a pathetic amount of time and resources on improving enrollment procedures.I have found as a member of a terminal illness group that the enrollment criteria are so stringent and require relatively healthy patients, that those of us who are really sick fail to meet the criteria. So the biggest part of a specific illness group are written off right from the get go.
It seems to me using human models to screen drugs would be far for productive that using animal models, which in the case of ALS have proven unreliable after years of relying on them for the bulk of trials. I would rather offer up my remaining days for some trial than watching trial after trial eliminating me from the start. I suppose that is what makes me so grumpy. Well, it is one of the things, other things are the lack of available health care for such a large segment of our population.