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.

Tuesday, August 22, 2017

Ask The (Please Be Specific)

Over the years I've experienced many "Ask the Experts" sessions related to ALS.  It's always a panel of neuroscientists who talk a lot about ALS research and then take a few questions.

The "Expert" crown defaults to them.  They speak from the dais.  We get to listen a lot and ask.  They are by default "The Experts" in the fight against ALS.

But wait, there are all kinds of people with superb and valuable knowledge related to ALS --

  • There are people who know a lot about insurance.
  • There are people who know a lot about communication technology.
  • There are people who know a lot about low-tech hacks.
  • There are people who know a lot about suction machines.
  • There are people who know a lot about breathing.
  • There are people who know a lot about the FDA.
  • There are people who know a lot about moving a person on and off a commode.
  • There are people who know a lot about taxes.
  • There are people who know a lot about drugs.
  • There are people who know a lot about data.
  • There are people who know a lot about choking.
  • There are people who know a lot about financing research.
  • There are people who know a lot about stem cells.
  • There are people who know a lot about feeding tubes and nutrition.
  • There are people who know a lot about what's important in living with the beast ALS.
  • There are people who know a lot about primary care in ALS.
  • There are people who know a lot about constipation.

Our default implication for the word experts being neuroscientists is revealing. There are many people in the fight against ALS, including those living with it, who know a lot.  We still live in a hierarchy where people with ALS and caregivers are at the bottom.

Words matter.  "Expert" is not a royal title to be owned by anyone by default.

It's time for simple changes to some traditions.  "Ask the Neuroscientists," anyone?


Tuesday, August 8, 2017

That Looked A Lot Like The Basset 500

Anyone whose life is blessed with a basset hound knows about the Basset 500.  Occasionally hounds
will break into running gleeful circles.  Sometimes they do big circles outside in the yard.  Sometimes they zoom around a circular floor plan inside.  It's exercise  They have fun.  They get nowhere except right back where they started.

Last week my hound was in the office with me when we watched the CDC ALS Registry annual meeting.  She could relate to what happened.

Every year the paid contractors (ALSA, MDA, and now Les Turner ALS Foundation) come to the meeting without any data to measure their effectiveness.

Every year the group ponders how to increase Registry self-enrollment.  There is lots of discussion of things to do that might increase people with ALS contributing their data.

Every year one of the people with ALS invited to the meeting gives the common-sense advice that you have to measure and you have to set goals.  There are nods, but nobody discusses specific metric goals because nobody establishes the pertinent metrics and nobody comes prepared with a measure of the actual performance.

Every year the meeting concludes with no goals, no targets.

My prediction for 2018:

  • The contractors will come to the meeting without any data that measure their effectiveness. 
  • The government project leaders will insist on calling these paid contractors "partners" again (clouding the true relationship and a need for accountability for paid work).  
  • There will be discussion about all the stuff you can do to increase self-enrollment.  
  • A common-sense person (not paid to work on the project) will suggest that they need to set goals and measure.
  • They'll talk more about stuff.
  • The paid facilitator will never bring them back to the idea of measurable goals.   
  • They will leave for another year.

Every year they get lots of exercise and get nowhere except right back where they started.

The dog wants to know how she can get paid half a mil a year to run in circles.


Saturday, August 5, 2017

Expressing Gratitude

It's not just good manners.  It's important.

Yesterday afternoon I listened to a NEALS webinar about a clinical trial.  A gentleman with ALS spoke about his personal experience in this and other trials.  Listeners received wonderful insights.  At one point he had advice for those in charge of the trials.  It's important to say, "Thank you."  Boy, is he ever right about that.

Every year I sit through a lot of ALS research presentations.  There is traditionally a slide at the end of the deck that thanks the funding agencies.  Seldom is there a slide that thanks the people who volunteered for the research.   It should really be the first one in the deck.

Earlier in the week I listened to two days of presentations that included ALS epidemiology studies funded by the CDC ALS Registry project.  Never did I see all those anonymous people who supplied data (often having to supply the same data multiple times in two or three different studies) specifically thanked for their contributions to a study.

There is a lot of angst over getting people with ALS to participate in clinical studies.  Perhaps researchers could simply stop calling their project volunteers "subjects" and start genuinely thanking them as the most important members of their project teams.

Last evening I was invited to a gathering that really drove this home.

There is a project, Hero's Journey Art, that Eli Lilly and Company has been developing.  People who have participated in clinical trials have been invited to submit wooden bricks decorated with whatever their thoughts are about participating in clinical research.  No rules.  No censorship. No coloring in the lines.  Just express yourself. I did my brick many months ago.  It wasn't hard for me.  Mine wasn't a graphic masterpiece, but it contained the words that made a clinical trial so important to Mom.

Last night one of the three sculptures was (literally) unveiled in a cancer support center in my city. There was a larger crowd than I expected.  There were lots of people who had participated in cancer trials.  It was a good reminder to me that there are a many evil diseases out there that still need so much research so that people, especially young people, can live.

When the sculpture was unveiled, the artist, John Magnan, told us a little about the journey and invited us all to look closely and even touch the sculpture.  And that's when this art touched me in a way I never expected.

People approached it, and as I did, looked for "their" bricks.  But they also looked for their friends' bricks.  And they looked at the messages on bricks of people they didn't know but who shared an unspoken bond of having participated clinical research.  The brick themes were all so different, yet they formed something cohesive about facing disease. It was captivating to meet over 300 important and diverse contributors to research via their bricks.

And a major pharmaceutical company was simply saying, "Thank you," in a remarkable way.

In the next year when I need a quiet moment to boost my faith in the fights against diseases, I'm lucky that I can stop by and soak in that sculpture.

Thank you to everyone who contributed to a clinical trial and told a story in a brick, and thanks, Lilly and John Magnan, for an important expression of gratitude.

Thursday, August 3, 2017

Buy Your Own Lunch

Over the last few days we watched the webstream of the CDC's annual ALS Registry meeting.

I'll never forget one disappointing moment that had little to do with the Registry itself.

In the last session, people chimed in with suggestions for the coming year. Fine.

One world-famous ALS clinical research neurologist suggested that there be a meeting of ALSA and MDA clinic doctors the afternoon before the big ALS MND Symposium in December to speak to the value of the Registry.  Fine.

He turned to the CEO of the ALS Association to ask for coordination of such a meeting.  Fine.

He then matter-of-factly turned to a representative of a pharmaceutical company actively involved in ALS research and suggested they "sponsor" the event and even perhaps provide lunch.  Now wait a minute.

These are employed neurologists.  Buy your own lunch. 

This is a Registry project that burns through a budget of $10,000,000 every year.  It can pop for an urn of coffee and some sodas in a hotel meeting room.

Let the pharmaceutical company invest all it can in ALS research.  Expect the pharmaceutical company to invest all it can in ALS research. Treat that relationship in a businesslike and respectful and ethical manner.  Don't treat it like your personal piggy bank or a money tree to be shaken down.

There's no such thing as a free lunch.  Think about it.