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.

Monday, April 28, 2014

Let's Raise The Bar Ever So Slightly - Step 2

This one's so simple, too.

Every year we are surprised by events when we get social media updates from the events themselves.  Every year one ALS organization schedules an event on the same dates as another organization's event.  They schedule so far in advance that who knew?

Let's be efficient.  Let's be informative about what events agencies are sponsoring or attending.  Let's raise the energy bar on all that you do.

Technically a common, shared calendar where all ALS organizations contribute content would not be difficult.  The human and organizational factors may be a little more difficult, eh?  If you expect us to believe that you can advance the science against ALS, then you should be able to do this.  It's not hard. To do it the way you always have seems nuts.

Sunday, April 20, 2014

Let's Raise The Bar Ever So Slightly - Step 1

Let's raise the bar on how things are done in the fight against ALS.

My first plea is for all organizations and individuals who publish statements and documents in the fight against ALS to please date your documents.

We have web pages and documents and publications online and in print with no clue as to the publication date.

This is simple. Nobody would argue that this is a good practice.  Please take the pledge to raise the bar ever so slightly.

Thank you.

April 20, 2014
Easter Sunday

Wednesday, April 16, 2014

Now THIS Would Be Patient-Centric

"I feel like I've left tissue all over the country." -- Words of a man with ALS

Today there are countless opportunities for people with ALS and their healthy relatives to give blood and skin and fingernails and all kinds of tissue samples for ALS research.  Unfortunately the donors are treated like renewable sources of tissue rather than valued people.  Researchers who often brag that they work together all gather their own samples for their own needs.  It's not about the patients. It's about their immediate research needs.

Picture this.

A person diagnosed with ALS is given a unique identifier on the day of diagnosis.  Maybe even a nice card with a bar code is included.  After that, every medical record, every blood sample, every MRI, every test result includes that identifier.  A person's information and samples are suddenly connected with the person rather than with a scientist.  And shortly after diagnosis, people with ALS are offered the opportunity to opt-in to a master bio-bank.  The tissue isn't stored in one place, but the information about where the tissue samples reside is stored centrally.  It's called patient-centric.

Think about the way your tire store can find a set of tires that fit your car overnight, even if two tires come from a warehouse in Saint Louis and two from a warehouse in Cleveland.

When a researcher or a pharmaceutical company needs a random set of blood samples from people with C9 genes, they can get them.  When a researcher needs a completely random set of skin sample from people with ALS, they are accessible.  When a research needs some blood from young SOD1 male PALS with slow limb-onset, they can get them.

Fix the information problem  Fix the center of attention.  It's the patient.  Donate once, use many times.

This would be patient-centric.

Next time you hit a chuckhole and need a new tire, think about the days when Lou had to wait for the factory to make more 4.50x21s to fix the Model A.

Tuesday, April 15, 2014

Your Best Salespeople Understand the Features, Advantages, and Benefits

I'm still trying to learn about the MODDERN Cures Act.  Examples would finally make it come to life for me.

http://www.nationalhealthcouncil.org/pages/page-content.php?pageid=163


OK, for dormant therapies, we've often been frustrated by a lack of study of repurposing old drugs for ALS since they aren't commercially attractive to drug developers.  Some examples of how MODDERN Cures features work would be so helpful!

Is it correct that the dormant therapies must be things that have never made it to market?  Are old drugs that were on pharmacy shelves for other indications part of the MODDERN Cures Act?

1. What if there is a drug that is within a year of losing its patent and the manufacturer holding the patent decides to pursue testing of that drug for ALS?  It will take years to test the drug for ALS.  What happens?  What does it mean to waive the old patent rights?  What does the 15-year period of "data exclusivity" mean?
2. What if there is a drug that is within a year of losing its patent and another manufacturer is interested in pursuing it for ALS?  How would that work?
3. What if there is an old drug whose patent protection has long since passed.  Can it get new patent protection with this?

We will be dynamite salespeople if we understand the features, advantages, and benefits in some real-life situations that relate to people with ALS.

And does the following link mean that the companion diagnostic features of the MODDERN Cures Act have al been taken care of?  http://capwiz.com/alsa/issues/alert/?alertid=63177606

Thanks to whomever can help.


Saturday, April 12, 2014

Sometimes A Single Voice IS All It Takes


This is a story of two funerals and those single voices.

1.  Last week a powerful single voice was buried at Arlington National Cemetery.  An Army colonel, retired by ALS, had become a voice that called out weakness in the VA healthcare system for veterans.  He called out ALSA, the CDC, and ATSDR for weakness in the ALS Registry.  He called out the FDA for a system that needed to get ALS patients' perspectives.  He never minced words.  He knew how to lead and how to cut through government-speak.  He caused discomfort in a system that needs to change.  Our nation paid beautiful tribute to him for his military service.  Everyone involved with the fight against ALS should pay tribute to that single voice, too.  He asked good questions and demanded answers... regardless of how uncomfortable he made you.

2.  Last week a wife/full-time caregiver/soulmate to a man with ALS died unexpectedly.  It's not supposed to work that way.  The shock, pain, and practical problems were huge.  An individual woman who helps people who fall through the considerable cracks in ALS organizations' support systems stepped up.  She is one of those single voices who does not take "no" for an answer.  There were funds to raise for a funeral.  There were short-term and long-term arrangements to be made for the care of the gentleman with ALS.  There were difficult logistics in a system that doesn't move quickly enough.  Phone calls weren't being returned and a hospital's policies needed to be challenged.  Nobody should be kept from attending his own wife's funeral by a hospital's risk-management person.  And everybody with ALS deserves to live in a respectful setting that understands ALS.  And families need to grieve.  Yes, a single voice helped make it all happen.

This weekend I hope that all who pray will say prayers for those dealing with ALS and its aftermath... and special prayers of thanks for those single voices.  We need more like them.

Thursday, April 10, 2014

And The Answers Are ???


Words from one of the three patients selected to attend the ALS Registry Annual Meeting in July:

Following up from last year, I wasn’t here last year, but one of the big questions I received from patients was, "What were the actions taken from last year’s meeting? Was it productive?" I’m sure many of you knew a great man, Rob Tison, who was here and put a lot of work into trying to give feedback. Just a really good person, and a very smart person. One of the questions I received was, "What was done with that?" How were the questions that were raised last year resolved? I’m sure they all were resolved. I’m sure action was taken, but if not everyone realizes it, it doesn’t do any good.





I find no evidence in the meeting report that the questions were ever answered. I looked and I looked.  It's like the questions just rolled off the backs of everyone.  Click here for the meeting minutes.  If I've missed something, I'm all ears.  We're not so sure that Rob Tison's issues and questions were all resolved. We're not so sure any were resolved.  Time to stop the slow-pitch softball.

Tuesday, April 8, 2014

It's Simple

"I'm not asking for another $10 million for you until you tell me what you're going to do with it."
-Words of an ALS advocate




It's time for a high-level accounting of where the ALS Registry money goes.

It's called good stewardship.

Saturday, April 5, 2014

Picture This


In the past week we've learned bits and pieces about various not-for-profits' positions on a number of issues that are important to those with ALS.  There does not seem to be a place where we can read the letters and statements that they have made to government agencies and other not-for-profits about various policies and legislation.

We pretty much have our friend google guiding our way as we stumble along trying to find out about governmental agendas and policy statements that have happened in the past.

Picture how helpful it would be if organizations that take positions or make statements or send letters would simply post them for us to see them as they are made.

It would add perspective and information that would make advocacy efforts much more powerful and cohesive.  Please post those documents in a visible place so we can read them and learn and understand.


It's simple.  Transparency is good.  Timely transparency is best.  Everybody wins.



Friday, April 4, 2014

Times Have Changed, Thank Heavens

Yesterday I saw a new For-Sale sign in front of a home in my neighborhood. 

A couple of decades ago I either would have written down the brokerage phone number and made a call or stopped in at an open house to find the price on the home.  You see, the real estate broker owned "the book," and "the book" had all of the listings and prices.

Real estate brokers controlled the most precious information to potential buyers and sellers.  If you were shopping for a home, you never got to take "the book" home to shop in privacy.  If you just wanted to keep track of asking prices in your neighborhood, the real estate broker controlled that information.  You had to ask.  You could usually get the price, but the rest of the story could be quite selective.

When it was time for serious buyers and sellers to make decisions, brokers had a great deal of power to control the conversation with the information that they chose to share or not share.  And "the book."

Times changed quickly, thank heavens.  Enter the internet.  Consumers demand access to information.  They want to be fully informed as they make decisions.  Real estate brokers have had to change.  They can no longer define the value they add by controlling the information or the conversations.  They have to add value in different ways or find new careers.

And think about the travel-agent industry has changed.  They no longer own sole access to flights and seats and hotel prices.  Travel agents can't make a living today with control of information and access.

And think about the Voluntary-Health-Agency industry.  Whoops.  It hasn't changed yet.  It will.  It must.

Thursday, April 3, 2014

And In The "You Can't Make This Stuff Up" Department

Picture this.
  • One arm of our government has built a national ALS Registry featuring online information, data entry, and risk factor surveys for people with ALS.  They have spent almost $40 million taxpayer dollars and are asking for more.
  • Another arm of our government has just implemented rules for people with ALS who need Speech Generating Devices.  They will not be able to access the internet during a 13-month rental period.  
Duh.  Do these people ever talk to each other

We have just built a very expensive highway and have blocked access to the people who need it most. And those signs that were put up April 1 are going to be dreadfully expensive to take down.

This is just outrageously stupid.