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.

Sunday, September 27, 2015

ALS, American Airlines, 6pm.com, La-Z-Boy, and YOU

Yesterday I had the privilege of delivering an Ignite! talk at Stanford University's MedicineX.  I appreciate the opportunity to present a message about ALS to so many outstanding people whose mission is to rebel and improve medicine.  Thank you, #medx .


Information.  It’s the food we use to improve everything we do.  It’s the feast that drives innovation, yet we waste so much.
Food deserts are a big problem in our urban areas.  I think that information deserts are a big problem in healthcare.  Do we find ourselves munching on what’s convenient rather than what’s really good for us?

 People dealing with ALS have a bumper crop of information that is often left to wilt on the vine.  That's an unacceptable waste, especially with a fatal mystery disease.
You see, the ice didn’t cure ALS.  There is still no known cause.  There is no effective treatment.  It is a difficult, steep, downhill path to death.
Yet everyone in this room, regardless of what your role is in medicine, can benefit from information from those dealing with ALS – you, physicians; you, drug developers; you, entrepreneurs; you, smart students.  Let’s talk a little about harvesting that information.

Before Mom died from ALS, she liked to take a trip every now and then.  American Airlines retained more information about her travel history than medical science retained about her case of ALS.  That’s outrageous.  All the clues that her life and medical history harbored were buried with her.  We’ll never connect the dots if we don’t start collecting the dots in an orderly and complete manner.  Somebody, call American Airlines, please!

Shopping for shoes is challenging for me, but not nearly as challenging as shopping for an ALS clinical trial.  Often when someone is diagnosed, a family member is put in charge of Dr. Google to go find something. 

You hope that “something” is a clinical trial.  It advances the science and is a legitimate Hail Mary for someone with ALS, but trials are not easy to find.  You have to sift through enrolling interventional trials to try to find the most “promising” science.  And you get emails out of the blue.  It’s confusing.  It’s time consuming.
And speaking of time, most ALS trials have a 24-month eligibility window from onset of symptoms.  There is typically a 12-month delay-to-diagnosis with this disease.  See a problem with time, here?
Last week I got an email from 6pm.com, Zappo’s outlet store – “The perfect shoes for you, and on sale!”  I took the bait.  I clicked on the message.  Up popped a cute pair of shoes that looked like they would work for me.  I’ve bought a total of three pairs of shoes in my entire life from 6pm.com, and they were able to make a pretty good match for me, yet clinical trial matching is stuck in the 1980s.  Somebody, call 6pm.com, please!

Yesterday we talked a lot about precision medicine.  I think we need to talk about accurate medicine, too – the right intervention at the right place at the right time.  So often with ALS it looks more like this… We constantly throw the ball five yards behind the receiver.  That does not help the patient.  It’s wasteful.  It’s expensive.

I have a wonderful old reading chair – a 50-year-old La-Z-Boy.  It is so comfortable.  Last winter it broke.  It was stuck in the upright and locked position.  I was heartbroken.  I called my local La-Z-Boy store and a fellow in the warehouse was able to diagnose the problem over the phone – a broken part.  Oh, no.  He said not to worry.  They would find one. I could pick it up after noon the next day.  Really?  Try breaking a part on a power wheel chair that is far more important than my reading chair.  You get a shrug and , “Four to six weeks, what can you do…” 
I’ll tell you what you can do.  You can and you must measure.  It’s about information.  You measure performance.  You set benchmarks.  You improve processes.  Somebody, call La-Z-Boy, please!
I have a challenge for you all and it doesn’t involve ice.  Please consider ALS to be a stress test for whatever it is you do in medicine.
You’ll never become a great skier if you stay on the bunny slopes, and trust me, ALS is no bunny slope.  It’s a difficult disease.  It’s a demanding disease.  It’s often a very fast disease.
If you can learn from those dealing with ALS, you will improve.  You will innovate.  And I guarantee you will be better for every patient you ever serve.






Copyright 2015 @ALSadvocacy All rights reserved. 

Saturday, September 19, 2015

Terms You Never Hear In The Same Sentence -- Nimble, Information, ALS

Several years ago, a local investigative reporter did a segment on lead in dishes and children's health. Our Board of Health offered free testing of dinnerware.  Lead is never good.

I took one of my everyday dishes to the testing site and brought along one of Mom's dishes that she and our family used every day for half a century.  Hers was Franciscanware, a high-quality, everyday china that millions of housewives of the 1950s treasured for their families.  The patterns each family had were expressions of mothers' favorite colors and themes.

When I had the china tested, I expected that my everyday china that I had bought on sale at Marshall's would test high and I would toss it.  Lead is never good.

I also expected that the Franciscanware would be deemed safe.  What a surprise I got.  Yes, my inexpensive everyday china tested high, but the Franciscanware tested even higher.  Yikes.  Lead is never good, and if you've ever seen ALS, you have no desire to take any potential chances with any substance that can possibly mess with your neurons.

On a recent webinar on possible causes of ALS, I asked if anyone had ever studied the lead content of   the dishes that people with ALS had used.  I didn't get a direct reply to my question.  The scientist just said, "Lead is never good."

ALS is a fatal mystery disease, yet we have no nimble systems for gathering and reporting on possible risk factors or causative factors.  The studies take years and the information-gathering nets are not cast widely (quite possible because the studies take years and the disease often kills people quickly).

We need nimble.  We need complete and organized information.  This is not rocket science.  We need ways to gather and harvest information quickly.  What if there are some simple preventive measures we can take in our everyday lives?  This is a matter of life and death.

Lead is never good.  In the meantime, I've tossed all the dishes.  I've seen ALS and it is never good, either.