Let's Start Some Peyton Manning Buzz To Defeat ALS

Compliments of Team Gleason, this morning in New Orleans...

https://twitter.com/#!/team_gleason/status/170950782689087488/photo/1

Everything Is More Difficult With ALS...

...including clinical trials and bringing products through trials. This article is shining some much-needed light on ALS and the dilemma of a system that protects patients to death.

It's Amazing What You Can Learn When You Ask, "What Should I Ask?"

One of the first things that can benefit an ALS patient after diagnosis is searching for a clinical trial that may give a chance at a beneficial new treatment and will certainly give a feeling of purpose in the battle against a disease without a good treatment.

There is a website that gives patients a lot of excellent information in evaluating clinical trial choices -- www.alsconsortium.org . The website doesn't have a catchy URL and the organization that maintains it doesn't have a name that really matches the mission clearly, but it is the go-to place for ALS clinical trial information. There is a physician who is an ALS clinical trial expert who is available for telephone or email consultations at no charge to patients. If only the well-meaning relatives who search the internet for hope for their loved ones would find this site rather than the Chinese miracle cure sites!

There are clearly choices in clinical trials, and one might wonder what a neurologist or ALS researcher would choose personally if faced with ALS. Some trials are more "promising" than others and some drug candidates have been around the block before without a lot of success. How does a patient sift through the trials to find the best personal choice.

It would be really helpful of neurologists and ALS researchers would contribute to a list of things that they would ask before choosing a clinical trial. Surely there are things like whether one trial excludes you from others, whether there is a placebo group, whether there is financial assistance for travel, whether the drug candidate has been tried for ALS before, whether there are likely side effects, whether the trial can move forward quickly, etc.

Is there anyone in our ALS organizations who might interview some experts to assemble the really good questions that they would ask? We're talking about the insightful questions that they would ask if they or their loved ones were in the ALS dilemma. This list of questions would be a valuable resource for patients (and for well-meaning relatives).

This Is My Dream World And Welcome To It

There are dozens of ALS multidisciplinary clinics throughout the United States. Each is branded as ALSA or MDA depending on the organization that provides standards and significant subsidies in its operation.

In my dream world, there would be a consistent message given by the neurologist to every patient and family on the first clinic visit --

1. Go to www.cdc.gov/ALS and self-register in the ALS National Registry. That is the only way to insure that your case will be counted and that your clues will be retained for scientific research. We will help you.
2. Find a physician doing clinical trials and participate in a clinical trial. The only thing the least bit "promising" would be experimental. We will help you.

Then this should be discussed on the second visit and the third until the patient and family have made an informed decision on each of these critical actions.

Now Showing At A Sony Pictures Theater Near You

Reports are that this has been seen at the movies in the last week --

Watch The Most Important Eight Minutes From The Super Bowl Coverage

Indy And The World Welcome Team Gleason!

http://www.wdsu.com/r/30374359/detail.html

Be sure to watch the video.

Be sure to watch for Steve Gleason on the Super Bowl pregame on NBC.

Super Bowl week has been outstanding in Indianapolis for many reasons. This is the perfect venue for Steve Gleason and a huge blast of ALS awareness. The world will be watching.

There Will Be Some Super Awareness on Sunday

http://www.alsa.org/news/archive/super-bowl-pre-game-show.html

http://sportsillustrated.cnn.com/2012/writers/peter_king/01/30/superbowl/2.html

Thanks to Steve Gleason and Peter King and all who will focus the eyes of millions on ALS on Sunday afternoon.

ALS affects NFL players (below) and firefighters and homemakers and teachers and soldiers and coaches and nurses and everyone. We must do more to stop it!

NFL ALS Roll Call

Steve Gleason

Eric Scroggins
O.J. Brigance
Glenn Montgomery
Pete Duranko
Peter Demmerle
Steve Smith
Tony Proudfoot (CFL)
Bob Waters
Matt Hazeltine
Gary Lewis
Orlando Thomas
Wally Hilgenberg
Kevin Turner
Bob Hohn

This Disease Is Simply Cruel

Dr. Richard Olney is dead at age 64.

http://www.washingtonpost.com/local/obituaries/noted-researcher-who-dedicated-life-to-researching-lou-gehrigs-disease-succumbs-to-ailment/2012/01/30/gIQA6gFVdQ_story.html

As You Watch The State of the Union Speech Tonight

Watch for Senator Murkowski. She deserves some camera time since she is a leader in eliminating the childish partisan behavior at the speech. She's also a leader in the fight against ALS and is wearing her Sunflower pin that represents the fight.

In a city where every lapel has its pin, Senator Murkowski has chosen one that is important to every person involved in the battle against ALS, and we are grateful for her and the awareness she raises.

http://sunflowertodefeatals.info/Welcome.php

Do you have your pin?

This Is Closer To The President Than We've Ever Been On ALS Advocacy Day

Here's an opportunity to speak up... ALS research needs, ALS in military, FDA reforms, ALS stealing our best and brightest but not (yet) perceived as a cash cow for pharma investment, dysfunctional healthcare delivery, lack of national (including governmental) urgency as people continue to die, using the wrong metrics to measure the impact of a disease,... Please pass along to anyone who might be willing to give the President and others in the Executive Branch an enlightening, compelling earful. regarding any ALS issues. Thanks!

Your State of the Union Interview With President Obama

http://www.whitehouse.gov/blog/2012/01/23/your-state-union-interview-president-obama?utm_source=wh.gov&utm_medium=shorturl&utm_campaign=shorturl

Teach People About ALS And They Will Come To Your Walk

Nice job, ALSA Florida Chapter and Dunn&Co.

If You Want To Be A Celebrity Spokesperson, Get A Disease Other Than ALS

The news is buzzing this morning about Paula Deen, her unfortunate diagnosis of Type II Diabetes, and the opportunity she will seize to be a spokesperson for Novo Nordisk in their direct-to-consumer marketing efforts. Phil Mikelson, Sally Field, Blythe Danner, Bob Dole, and others have raised awareness of both conditions and drugs to treat their conditions (and have made more than a few bucks for their efforts).

ALS would have some great celebrity spokespeople -- Lou Gehrig, David Niven, Jacob Javits, Michael Zazlow, Chairman Mao (how interesting that would have been), a significant number of NFL stars, Catfish Hunter, Charles Mingus, Dennis Day, Lead Belly, George Yardley, Georgia Bird, and on and on...

Oh, the problem is that they have no drug to speak about. And they die.

KING 5 Rules!

Thanks to KING 5 and to all who raised Cain and finally got through to the bureaucrats! This is good for veterans with ALS and good for taxpayers.

http://www.king5.com/news/investigators/Help-coming-for-veterans-with-Lou-Gehrigs-disease--137264418.html

Who Cares?

There is an article in this morning's Wall Street Journal about the spike in heart attack incidence within days of the death of a loved one.

Subscriber link.

A study of 1,985 adult heart attack survivors finds that heart-attack risk rises to 21 times higher than normal within the very first day after a loved one has died.

That sharp increase in risk tapers off with each day, but is still almost six times higher than normal within the first week and stays somewhat elevated for at least a month.

ALS caregivers work through a cruel mix of physical exhaustion and a creeping grief of watching a loved one slip away. They don't have time to go to the dentist. They don't have time to get the blood pressure checked. They don't have time for the routine bloodwork that can give an early signal to something serious. They get all kinds of bad advice from well-meaning friends. A healthcare professional never screens them for depression. Forget the colonoscopy. They self-medicate for aches and pains and skip vaccinations because there just isn't the time to deal with their own health when their loved one with ALS is seriously ill. Healthcare delivery doesn't give them an express line to a physician when they call for advice or an appointment.

Our ALS organizations, ALSA and the MDA, tout their multidisciplinary clinics as the most efficient and effective way for people with ALS to receive healthcare. They spend hundreds of thousands of dollars to keep these clinics available to patients. The caregivers drive patients to clinic and park the car and help the patient navigate the clinic and to listen to the advice of the neurologist and the pulmonologist and the therapists. Would it be that difficult to have a little primary care (think Walgreen's primary care) resource for caregivers during those visits? Would it not be part of responsible and holistic healthcare to include the basic health needs of the caregiver during that one-stop shopping visit for dealing with ALS? Talk about a missed wellness opportunity!

Has anyone done a study on the health outcomes of ALS caregivers after the deaths of their ALS patients? I'll bet there is a spike in a lot of health problems. Could we not save some lives by paying attention to caregivers' health?

Here's One For Ethics 101

Students in ethics classes love to sift through complicated scenarios that seldom are realistic. Medical ethics hypotheticals are among their favorites.

Try this one.

• 
  
  Patients have a quickly terminal disease.


• 
  
  They go from vibrant and healthy to unable to move or breathe in a matter of months.


• 
  
  Many sign up for clinical trials.


• 
  
  Nothing ever works. They struggle to figure out if they are getting worse less quickly after the experimental treatment than they were before. The bar for efficacy is low, and nothing ever clears that bar.


• 
  
  One clinical trial drug has resulted in some amazing, clear, anecdotal reports of improvements. This is huge. This is a surprise. This is different. This must be a clue.


• 
  
  The small clinical trial requires that after the patients' courses of treatment that they stay off the experimental drug for weeks.


• 
  
  During the weeks of no drug, the anecdotal reports show patients plummeting back to where they were before the trial started. The downhill slide continues with its former vengeance.

Are there not some ethical issues that need to be addressed here?

Are we not clever enough human beings to design trials where the data will speak and still allow the trial subjects a chance at life? Were we unprepared for a trial that would ever really do something for people with ALS? Are we right to simply watch and record data while patients fall like rocks?

This isn't a hypothetical scenario in some dream world. This is real. This is an ethical problem. This needs to be addressed.

We Hope They'll Show This During The Superbowl!

Drew Brees for Team Gleason from Team Gleason on Vimeo.

Thank you, Drew Brees!

Wish We Used Stats To Scare Up Support

In yesterday's Wall Street Journal, The Numbers Guy, Carl Bialik, has another interesting column. This time he writes of health not-for-profits who find ways to present scary statistics to state their cases for support.

Article (subscriber content)

Related Blog

Here is a comment posted below the article --

Unfortunately disease prevalence has traditionally been used to establish relative priorities for much research funding, and prevalence simply doesn't tell the story for some diseases. I've been involved in the fight against ALS (Lou Gehrig's Disease) for a number of years. It has a relatively low prevalence and a high incidence, and therein lies the problem. It's like a cruel game of musical chairs where we keep pouring people into the room and when the music stops, there are very few chairs. The only exit is a door labeled "death." Many of our ALS organizations are resigned to the fact that disease prevalence has been the gold standard for government and private research funding priorities. That attitude will never bring ALS the attention it needs to be handled as an urgent, fatal, and mysterious disease with a horrific throughput. I wish the ALS cause had some of those numbers people who can express the odds in a way that would make every healthy person squirm!

Here Are Some Realistic Goals

Occasionally ALSadvocacy is chided by some people who work for ALS organizations. Some ideas such as inter-organizational coordination, awareness programs with global punch, a case study of the cost of the disease, educational programs at many levels, normalized reporting on annual investments in research, or a new standard for measuring a disease's impact are perceived as not being realistic.

Perhaps we can agree on a few goals for 2012 that are completely "realistic" from any perspective. Here are two.

Insure that every newly diagnosed ALS patient in the United States

1. Is immediately advised of the importance of self-enrolling in the CDC's national ALS Registry.

2. Is immediately advised of all clinical trial options available.

Those are simple. They are deliverable. They are measurable. They are important. They are not happening today. If they're not "realistic" then perhaps our organizations should find an easier disease to fight.

Remember The Over 5,000 American Lives Lost to ALS in 2011

Thanks to ALSA Philadelphia Chapter for pointing this opportunity out to remember loved ones and to raise some huge ALS awareness in The New York Times --

http://submit.nytimes.com/lives-they-lived

Please spread the word to all who have lost loved ones to ALS in the last year. The holidays are rough, and this is a good way to remember and teach others about the toll that this beast of a disease takes.

Who Represents Patients In This Puzzle?

Here is an interesting perspective on clinical trials --

http://bioworld.blogs.bioworld.com/2011/12/13/it%E2%80%99s-about-the-patient/

ALS certainly poses a completely different set of challenges for the drug companies trying to move a therapy forward, yet the question about remembering the patient has a special sting with ALS.

Wow!

Nothing Is Easy With ALS

And sometimes the obstacles are just wrong.

http://www.alsa.org/news/archive/fda-approves-neurx-diaphragm.html

There has been an interesting saga described on the forum at patientslikeme.

A man with ALS recently made arrangements to go hundreds of miles to Cleveland to have the DPS described in the article at the above link "installed."

At the 11th hour in Cleveland his insurance carrier denied this treatment. He packed up his things and went back home.

Note that this man has ALS and travel is difficult and the breathing that he is trying to preserve with the DPS diminishes every day in the relentless ALS downhill slide.

Now he has finally found out what the difficulty was with the insurance coverage. The insurance company was not aware of the FDA approval of the DPS for ALS. The insurance company hasn't learned how to Google? Everything is fine now and he can go back to Cleveland for the procedure.

No, everything isn't fine now. The patient was jerked around by a healthcare delivery system that included an insurance company that made a big mistake at his expense. Precious time was lost. Precious resources were spent by the patient because an insurance company made a big mistake.

Nothing is easy with ALS, and we have a healthcare delivery system that continues to show its weaknesses at the expense of people trying to deal with this disease. Just as they introduced stress tests for banks during the banking crisis, perhaps ALS could be the stress test for healthcare delivery. Few organizations would pass.

And Walks Are More Than Fundraisers

They are reasons to talk about ALS in communities and in the media. They are a means to generate the awareness that will finally impress the urgency of the problem upon the healthy. They are a way to put ALS in the spotlight it needs so that we can break out of our rut of still having no known cause and no cure.

Are We Literally Protecting People With ALS To Death?

Here is an important perspective from a man with ALS. It was posted on the ALS TDI forum where patients with scientific backgrounds are collaborating and experimenting and sharing data.

I have a slightly different perspective than most coming from the radiation oncology field. The things we put our patients through would seem downright medieval to most. We expose people to enormous amounts of radiation that often makes them so sick they almost die form it. We have perfected the dose to bring them to the edge of death but not beyond. We all know what chemotherapy patients go through. They lose all the cells in their stomach and can barely eat for weeks. Again, we bring these people to the brink of death because that is what it takes to kill the cancer cells.

People with ALS are in no less dire straits than people with cancer. Getting sick from a potentially life saving cure should not deter us from trying. No doubt there is a risk with this sort of thing, perhaps even death, so only those willing to risk it all should attempt it, but we risk it all by doing nothing.