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.

Saturday, June 29, 2013

We Need More Idea-Thons To Defeat ALS

We're so good at walk-a-thons.  Let's get really good at idea-thons.

The idea struck me during the consensus-building final portion of the Team Gleason ALS Research Summit yesterday. www.teamgleason.org/summit

It's harder to do online than they did at the tables, face-to-face, but I think some clever people could come up with a good online format that should include everyone -- rocket scientists down to low-i.q. bloggers.

This would be like speed-dating for ideas.  Get some sparks of creativity out there.  Capture them.  See if they generate other sparks or plop.  Move on.

In an online, chat-like format:

  • Pick a general topic
  • Have someone float an idea
  • People who want to discuss stay in the chat and start chatting
  • People who don't want to discuss or who don't like the idea stay on the sideline
  • Have at it for fifteen minutes
  • Float another idea...

Eventually the idea bag is full and it's time to deliver (thanks, Dreamfinder and Figment), but in the fight against ALS, we've not been very good at the new ideas. The more ideas you have today, the more ideas you'll have tomorrow.

Yesterday we had sparks of creativity and the discussions were all-inclusive. That's good and that's different.


Wednesday, June 26, 2013

Are We Really Keeping Score?

Every team knows you have to keep score.  Every business knows you have to keep score.

Ask the head of any ALS not-for-profit how last year went.  The answer will typically be financial. "We had a record fundraising year."  "It was a tough economy but we did fine by cutting expenses."   "We are thrilled with $3 million in new government grants."



After the financials, some other statistics may or may not follow.  "We screened 40 therapy candidates in the lab.  Two have 'promise.'"  "Fifty research grants were made."  "We held 4,211 support group meetings helping 12,200 patients." "Twenty-two dead mice eliminated some duds from the research pipeline." "We had ten mentions in national media."  "We helped pass one piece of legislation."  "1,214 new people self-enrolled in the ALS Registry."

Nobody says, "Over 125,000 died again from ALS."

Are we keeping the right numbers on the scoreboard?

Are we demanding the right statistics during the game?

Tuesday, June 25, 2013

Dear Smart ALS Scientists Who Are Meeting In New Orleans This Week

We need a shared, searchable, online source of ALS-related grant information that includes grantors, $, start dates, end dates, receiving institutions, investigators, topics, and outcomes.

Something like this but with more of the pertinent details like amounts and outcomes.  

That would really jazz your donor base.  It would help people searching for hope to have a real place to search.

It's our portfolio, yet nobody tells us exactly what's in it and how it's doing.

p.s. The search tool needs to be shared because we're tired of funding expensive, redundant, incomplete  silos of data like we have bought for clinical trial information.

Saturday, June 22, 2013

Let's Have A Pact

Here is a press release from yesterday --

http://online.wsj.com/article/PR-CO-20130621-906271.html?mod=wsj_share_twitter

The ALS Association is working to change that and has committed more than $67 million to find effective treatments and a cure. 
Wow, is that $67 million last year or over the last 30 years?  Does "committed" mean your direct expenditures?  That's a huge chunk of money.

Here's a past statement from the MDA --
MDA (mda.org) is the world’s leading nongovernmental provider of ALS services and funder of ALS research. Over the years, MDA has led the fight against ALS, investing more than $307 million in its ALS research, services and information programs.
Double-wow, is that $307 million over the last 70 years or the last 7 years?  How much scientific research is buried in that number.

And this is from als.net, the website of ALSTDI, a smaller, all-research organization --
12 M spent on research a year
That's a good wow because that is totally research and an annual number.  But how much of that came from the MDA?  Are we double-counting dollars?

One's impression is that ALS research is tremendously well funded.  The fact is that it's not.  Our ALS organizations, in an attempt to impress potential donors with their commitments, give the world a distorted view of the low research funding levels that have held back the fight against ALS.

So, how about a pact, ALS organizations?  It would be good for all.  Really.

Here's the pact:

Every year use a common format and share with the world --

  • The dollars you spent directly on ALS research in the last calendar year.
  • Any dollars that you received from other ALS 501c3s that were also counted in their statements.


That's it.  Simple.  No glitz. No spin. It gives your donors and the world a normalized view of the good research work you do and the tremendous need for more resources in the fight.  Please enter a pact.  We need a strong handshake and no arm-wrestling.  C'mon.  You can do this.



Thursday, June 20, 2013

Time To Raise The Lid And Smell The Cooking?

[If you've not read the June 15 post, please give it a quick scan for some background first.]

The national ALS registry concept was an easy case to make.  Take a look at www.alscounts.com if you're not familiar with the need and the history.

We fight hard every year for taxpayer dollars that will let the CDC's Agency for Toxic Substances & Disease Registry (ATSDR) develop its ALS Registry well.  You'll not find ALS advocates getting stingy over such an important project.  They go to great personal expense to get ATSDR what ALSA says it needs.

Here's the recipe.

  • ALS advocates get ALSA's legislative priorities in the first quarter of every year.  Those legislative priorities include continuing funding for ATSDR for the ALS Registry.  ALSA presents us with the number.  This year and last, the requested number was $10 million per year.
  • ALSA has an advocacy fly-in during the first quarter of the year for invited advocates and ALSA employees to promote the priorities with legislators.
  • In May all advocates who are able to make the trip and pay the fees and travel expenses are invited to a bigger Advocacy Day to call on legislators.  Many ALSA employees also make the trip at the expense of their donors as part of their jobs.  Some people with ALS may be assisted by their chapters' benefactors or by other not-for-profits to help with travel expenses.  This year, under the guidance of ALSA, we advocates asked legislators for another $10 million for ATSDR to continue the ALS Registry project.  Here's a recent ALSA pitch.  
  • Annually there is an invitation-only meeting of a committee that gives input to ATSDR on the Registry project.  The public is not informed of the meeting in advance.  The minutes of the meeting come out long after the meeting, and the minutes reflect a group very happy with the project.  There is little critical discussion.  Nobody's feet are held to any fires.  Expenses are not reviewed.  You can see for yourself here.  The list of 2012 participants is at the end of the document.  You'll see that ALSA, MDA, and the CDC and ATSDR and its contractors are very well represented.  There is only one ALS patient on the list of whom I'm aware, and he died shortly after the meeting.

That's it.  We sing for ATSDR's supper every year and we work hard so that they have the generous funding that they and ALSA say they need.

I was flabbergasted when I found this the other day at usaspending.gov.

Then when I downloaded the data, I became even more concerned.

Has ALSA been the recipient of large, no-bid, noncompetitive contracts out of the generous funds they had us request for ATSDR?

Was this ever mentioned to us -- the advocates who pitched hard for them for their suggested funding level for the Registry?

Has the ALSA-ATSDR relationship become too cozy?

This at best smells bad.












Saturday, June 15, 2013

"And Other Matters As Recommended By The Advisory Committee"

Here is the text of the ALS Registry Act -- http://www.govtrack.us/congress/bills/110/s1382/text .

I am one of many who worked long and hard to get this enacted and funded.  It seems essential to me that we have an excellent epidemiological inventory of cases of ALS so that scientists can better understand the disease.  Over decades we had buried the clues along with thousands of people with ALS.

Our government is good at census work.  It knows how to count noses.  One excellent disease registry is hundreds of times more valuable than a dozen independent, less complete registries.  Add the fact that most people with ALS go quickly into various government databases such as Medicare and Medicaid, for the U.S. government to be the chief nose-counter for people with ALS made so much sense.

It took years to get this passed.  People with ALS and their families were willing and able to fight for funding at a "Cadillac" (a word used by a man with ALS at an advocacy meeting) level so that the CDC could do the job right.  When the ALS Registry Act passed, the CDC even said that it was a well-funded project.  Hindsight is 20-20, but would a lean project have been better?

Here's the most recent pitch -- http://library.constantcontact.com/download/get/file/1113068431369-11/2013+ALS+Advocacy+Day+Talking+Points.pdf

Here is the melange we think we got for our $33,000,000 so far.  We think.


The Basic Data Surveillance
Data availability time lags and some kind of secrecy purported to be required by OMB keep us from knowing exactly what the government files indicate about incidence and prevalence of ALS, but we hope that something is reported later this year, $xx million dollars later.

The Patient Self-Enrollment Portal
This was added to the project to provide people with ALS a way to step up and make sure that they are counted.  The portal is there.  Where are the patients?  What is the uptake on self-registration? What percentage of the cases detected by passive surveillance also self-enroll?  What is the communication process to insure that patients are aware of and understand the value of self-enrollment?  Whose feet are held to the fire to insure that patient self-enrollment happens?  So many questions, so little accountability.  This isn't a "build it and they will come" proposition.  

Last year a man with ALS delivered this information to the advisory group -  https://docs.google.com/file/d/0B5nmEImgaRfudXc4ay1zUGNQa28/preview?pli=1  Has anything changed? He died. It's up to the rest of us to ask for some accountability.  If the same survey were administered today, would anything be better?
And what in the world are the details of this contract? https://www.fbo.gov/index?s=opportunity&mode=form&id=31776989bc48abbd46ddbe5dd2231b41&tab=core&tabmode=list&= 

The Risk-Factor Surveys
The self-enrollment portal could also provide a route for continuing engagement from willing patients to respond to risk-factor surveys.  That seemed like such a good idea to add onto the basic Registry, too.  So far we have learned that smoking is a risk-factor for ALS.  Does that advance the science?  Do patients even know about these surveys?  Do neurologists?  New surveys are awaiting review by OMB.  What is OMB looking for? We even learned in May that the CDC will use budget money left over to pay scientists to suggest new risk-factor surveys. Would a few of the smart scientists on the Advisory Committee not be able to rattle off risk-factor topics that would be as good as any paid government contractor? Why do more surveys if the uptake on the current surveys isn't good?  What is the communication process on these? 

The Booth and the The Tchotchkes
Shortly after Registry launch, we saw a big trade-show booth that would be shipped to various advocacy and neurology meetings (along with sponge baseballs). Are the booth workers trained to be on their feet and engaging with a five-second message that will stick?  What's the goal?  How does this fit into a larger communication plan that will have measurable results?  

The Registry Medallion for Websites
Great idea, but whose job was it to contact websites to ask them to add the medallions?  It seems that a few rogue people with ALS and advocates contacted many ALS-related websites that were glad to add the medallions and had not been asked to do so by the CDC or by ALSA or by the MDA.  Ah, communications.

The Website www.cdc.gov/als  
It is actually less cluttered than it was a year ago, but the calls to action to patients are still not clear.  As one advocate said, "It looks like a website designed by a government contractor."

The Clinic Locator
Why, oh why not just put links to organizations and agencies that maintain their own resource databases?  Why add a search mechanism that will require constant data maintenance?  Oh, and if you're curious, try zip code 46556, a zip in Indiana that is near the Michigan border and Chicago.  It's a great test zip code to see if resources in Indiana, Michigan, or Chicago show up.  Pffft.  Of course, if you use an iPad you'll not realize this since it doesn't work at all for you.  This service locator was unnecessary and is not particularly good and will require continuing data maintenance.  Cha-ching.

The Continuing Medical Education Modules
We certainly need more ALS education among healthcare professionals, but was this the right place to deliver it?  And again, what is the communication process to engage those who would benefit from this training?  Are we engaging healthcare professionals who need to learn about ALS, or are we providing CME to people who already work with ALS?  Just because the CDC had the ample budget to let them deliver these doesn't mean that it was the best organization to do so.  Are we slipping into the mode of having the CDC handle whatever projects our ALS organizations can toss their way?

The Video Tutorials on The Registry
How about fixing the underlying usability issues rather than adding expensive layers of tools to help people fight through the usability issues?  Would you ever buy a book at Amazon if you felt that you needed a video to show you how?

The Android Tablets
Tablets were supplied for ALSA clinics to assist PALS in self-enrollment.  Is there a process to insure that they are used appropriately?  Are there measures to see how well the process is working?   Did we throw money at a problem again without understanding its roots?

ALS Research Notification
Here's the scoop on this new Registry accessory -- http://wwwn.cdc.gov/ALS/ALSClinicalResearch.aspx

Again, just because you have the budget to do something doesn't mean you're the best person to do it.  Doesn't clinicaltrials.gov have better, more comprehensive information than the CDC is building separately here?  Do we need yet another database and administrative process?  is clinicaltrials.gov not working on gui enhancements as we speak? Are we not building another data resource that is duplicative with existing resources and that will require ongoing maintenance?  And is a poor precedent being established in leading people with ALS to believe that they will be informed when pertinent research opportunities are available?  Rather, they may be informed when some research opportunities are available.  They are still responsible to seek and find the others.

The Biorepository Feasibility Study
My a-ha moment was when a gentleman with ALS said, "I feel like I've left tissue all over the country."  Surely tissue samples are critical for scientists to understand ALS.  Will the huge biorepository project being proposed by the CDC (as another accessory to the basic Registry) fix the problem of a patient's tissue being left all over the country?  Is anyone thinking about having the Registry have the master directory of bio-samples of people with ALS so that tissue stored in any number of existing repositories could be indexed and not duplicated by the CDC's respository?  The government is good at tying together information about our bank accounts.  What if the CDC built something to pull biorepositories together rather than form yet another silo of ALS tissue and information?  At the recent ALS advocacy conference, we learned that the CDC was learning from the experiences existing biorepositories, but nobody said that the CDC would be working with existing biorepositories to prevent expensive duplication of efforts and tissue and data.  Patient #50239483226's brain is in a biorepository in Chicago, his blood/sweat/tears are in a refrigerator at the VA, and his son's blood is at the NIH.  Is anybody thinking along these lines, or will the CDC just build a bigger silo in our growing countryside of biorepositories?
The Burden-of-the-Disease Project
Again, this is a topic in dire need of quantification.  Biogen Idec undertook a similar project recently.  Again, is the CDC's Registry the best place to deliver it?
https://www.fbo.gov/index?s=opportunity&mode=form&id=beed7389158dc8cd169e14321a807591&tab=core&_cview=0 


If only we had confidence that the basic counting of noses of those with ALS was being done accurately and completely.  If only we had confidence that all of the extras were contributing to the core mission of the Registry and not distracting from it.  If only we had some measurable results to tell us.

We hope for timely minutes of the next meeting of the Advisory Committee and we hope that these experts see the value of sticking to one's knitting. We hope some advisors will challenge the scope creep.  Nobody gives a government agency a prize for not spending all of its budget, but maybe we should.





















Wednesday, June 5, 2013

We Need To Remember These Huge, Gaping Holes Left By ALS

A few months ago when a man with ALS who posted online using the name "Persevering" died, Emma, the forum administrator at www.patientslikeme.com wrote, "... a huge, gaping, Persevering-shaped hole is left."

That said it.

In the past year, we have so many huge, gaping, specially shaped holes left as ALS has stolen some very special people from us.

We love to see the stories of courage of those living with ALS, but those don't really remind us of all of those huge, gaping holes.  We need to remember.  We need to find ways to count the holes and not just the few who are allowed to live amidst us with ALS for such a short period of time.

God be with all who have huge, gaping holes in their lives.  God be with all dealing with ALS and with those searching for a treatment.  God be with us all because those huge, gaping, specially shaped holes that ALS leaves are a loss to every one of us.

Our gaping holes don't fill in like the waters in a wake, nor should they.