You Asked For My Phone Number, You Asked For My Email Address

Why was that, Dr. Clark?

Car salespeople touch base with even their most infrequent customers when there is a rebate that they would like to know about.

Bankers and brokers touch base with even their most impecunious customers when there is a policy change that they need to know about.

Shoot, our local ice cream stand reaches out to its customers via email so that they know when to stock up for the winter with their favorite flavors lest they miss their chance.

Why don't doctors reach out to their patients as soon as a clinical trial is recruiting that may make sense? Why don't doctors actively call or email patients who may qualify for a newly approved device such as the diaphram pacer that was approved for people with yesterday. With ALS speeding through their patients' vitality at an incredible clip, why do patients not hear about things that may help until their next regularly scheduled appointments. Three months can be the better part of a lifetime for a lot of people with ALS.

Those patient phone numbers work for things other than billing departments. Sleepy wishes that docs would take the same initiative to take care of patients as my car dealer or the ice cream stand.

Whoa, The Government Is Moving Too Fast?

Or perhaps the government is moving without thinking past its fiefdoms.

https://filemanager.capwiz.com/filemanager/file-mgr/alsa/Senate_LHHS_ALS_Registry_FY12.pdf

"The Committee is particularly supportive of the addition of a biorepository component and the development of strategies that can enhance clinical trials and clinical trial enrollment."

It appears that the CDC's ATSDR, the "owner" of the important ALS Registry project, is ready, able, and willing to take on scope creep that will enhance its budget and footprint, and could ultimately take its eyes off of the core mission of providing complete epidemiological data on ALS cases.

In the past few months we have seen how broken the process of getting good clinical trial information to patients is. Having the ALS Registry do an expensive push of information to potential patients won't fix the root problems. It will only add another problem.

Can someone in our government step back and look at the bigger picture? Can someone in our trusted ALS organizations step back and take on a more difficult problem than appropriations for a Registry project? Can someone in our clinical healthcare delivery system take on some responsibility for getting information to patients in a consistent, timely manner?

It doesn't take a Six Sigma Black Belt to figure out that we have a very broken process and taping expensive band-aids on it won't fix it. Who will take on the problem statement (that may leave a little egg on the faces of some in the current process to get information to patients)? Anyone?

Here are just a few of the process concerns that have jumped out to me as I've watched patients take clinical trial recruitment into their own hands in order to fill the Neuraltus NP-001 clinical trial.

• Are patients relying on their neurologists for guidance on whether a clinical trial is a good idea and on which clinical trials hold the most "promise?"
• Are patients getting that information from their neurologists?
• Are members of our ALS organizations' staffs who deal with patients knowledgeable at least on the phase 2 and 3 clinical trials within 500 miles of their locations?
• Are patients and families being led down wrong paths by the proliferation of websites that say they have clinical trial information (but carry information that is incomplete or outdated)?
• Do patients and families know that the most dependable source of clinical trial information is www.clinicaltrials.gov?
• Has anyone talked to HHS about putting a nicer, more friendly gui on www.clinicaltrials.gov so that patients could do things like a zip code search for nearby clinical trials?
• Would a better gui on www.clinicaltrials.gov eliminate the need for redundant websites that are provided for a number of medical conditions?
• Do some neurologists discourage patients from clinical trials? Why?
• Can patients in clinical trials have a formal feedback process that would provide better trial design for the next drug candidates?
• Can the 24-month-from-onset "rule" be revised based on the results of the recent 36-month-from-onset trial?
• Does the CDC's Registry even have onset date (which would seem to be required for any kind of matching of candidates to clinical trials)?
• What are the results of the recently introduced NEALS/ALSA Clinical Trial Expert?

Many of us complain about the length of time that it takes the FDA to evaluate and approve new drugs; however, every day wasted in filling a clinical trial is as critical in the timeline as an FDA day. We definitely have a problem in getting good information to eligible patients in a manner in which they can make informed decisions quickly. To add an expensive feature to a Registry that has its own problems getting people to self-enroll isn't going to solve the problem. We need to step back and look at all of the possible factors and fix some of the problems at the root. Throwing Registry money at this problem will not fix a broken process.

My plumber can offer to fix a structural defect in my home, but that's probably not a good way to really fix the problem.

Obsessive, Multi-Level Fundraising To Defeat ALS - Question 4

Today's question involves using walks as a reason to talk about ALS.

Strategy 1: You can raise ALS awareness with walks, but that does not increase walk revenues; therefore, walk staff time and energy should not be spent on awareness. It is not part of the successful walk formula.

Strategy 2: You can raise ALS awareness with walks, and every opportunity to talk about ALS in the community and in media should be pursued aggressively. The key to raising long-term resources and urgency to deal with ALS is increased awareness.

How do organizational rewards and expectations and priorities affect the awareness strategy selected?

Obsessive, Multi-Level Fundraising To Defeat ALS - Question 3

Business 101 classes usually teach that the flaw in many multi-level marketing schemes is that recruiting becomes more important than the quality and value of the underlying product being sold.

True or False: This theory can also apply to multi-level fundraising.

Obsessive, Multi-Level Fundraising To Defeat ALS - Question 2

Here is today's question. Consider two people --

a. An individual who shows up on walk day and writes a check for $100 and walks

b. A team captain who does online fundraising and encourages $150 from others but makes no personal donation and does not show up on walk day

Who is more valued by the walk cookbook?

Extra credit -- Who is more likely to be a donor and walker next year and the next?

Obsessive, Multi-Level Fundraising To Defeat ALS - Question 1

This is our question du jour --

Walk A: 500 walkers showed up, $100,000 raised, no media covered

Walk B: 1,000 walkers showed up, $95,000 raised, no media covered

Walk C: 10,000 walkers showed up, $92,000 raised, local press and tv covered

Which was the most successful walk?

Great Caesar's Ghost (Again)

A week ago an interesting press release was issued regarding ALS research findings which were about to be published in Nature. That press release caught the interest of major news outlets throughout the country. Obviously the media were starved for some good news about ALS and they got it.

Here is an interesting blog regarding the media buzz --

http://barbarabrenner.net/?p=286

I couldn't agree more with the frustration over optimism being rolled into euphoria because of a finding that can't possibly turn into a tangible benefit until tens of thousands of people with ALS continue to die.

Journalists today clearly like a little help with good ideas and stories. So why don't we make constructive use of that?

There are aspects to ALS that would make compelling media stories that would raise awareness (and therefore raise resources invested in ALS). Why don't we figure out how to tip the press to those in a manner that will help some engaging stories happen in the national media? ALS organizations continue to write materials for a company newsletter rather than tips that will pique major journalists' interest.

Will the news of last week teach anyone how to make more important news next week?

Is This A Zebra Or A Horse?

Physicians are trained that when hoofbeats are heard, they are usually from horses and not from zebras. "Zebra" is their term for an highly unlikely or surprising diagnosis. You don't go looking for zebras when most things are horses.

• Picture the older patient with the hoofbeats of slurred speech. Stroke?
• Picture the younger patient with the same hoofbeats of slurred speech. Alcoholism again?
• Picture the homemaker having trouble opening jars. Arthritis?
• Picture the businessman whose left arm feels funny and whose golf shot has gone all to pot. Stress?
• Picture the young athlete who can't hit the baseball. Time for eyeglasses?

People with ALS have incredibe stories to tell about the long and expensive paths they had to take to get a correct diagnosis. It often takes years for physicians to look past all of those red-herring horses and see the ALS. We don't know how many people die every day from ALS without ever having been diagnosed correctly.

Doctors are trained not to jump straight to that "rare" diagnosis. Even if they suspect ALS, they don't want to make the diagnosis. There is nothing in the doctor's bag that will treat ALS, and there is no more difficult conversation on earth than to share that with a dying patient.

What if there were an effective treatment? Would ALS be diagnosed sooner? Would ALS be a topic that would be on the radar of more primary care physicians, and thus addressed promptly? Would a larger recognized patient population make the world more aware that Aunt Mary may not just have arthritis or that Uncle Joe may not have fallen off the wagon again.

In past decades, markets in many therapeutic areas that did not have effective treatments had been grossly underestimated. Today we have promising clinical trials going on for ALS. Perhaps part of that promise will be that ALS will be diagnosed more quickly and accurately. There may be a lot more hoofbeats in the ALS market than anyone realized.

There Are Two Cars In Each Garage

Picture two houses, each with two cars in its garage.

One family buys a new car ever eight or ten or more years, cares for it, and is not terribly susceptible to that intoxicating new car smell.

The other family loves to trade in and get a new car every two or three years and loves the new car smell.

Each family has two cars in its garage. Which family provides more revenue for the automotive industry? There is no question that the garage that gets a new car every couple of years is General Motors' dream!

Think about ALS and other diseases. ALS never has very many patients "in the garage" at one moment. They exit and enter at a voracious clip in a cruel trade-in program.

Our agencies and government have a tradition of looking at a snapshot of garages to compare diseases. Two cars are two cars. Somebody needs to look at the number of new cars that enter the garages over time. The significance of ALS is much larger than a pair of full two-car garages would ever indicate!

The Most Elegant Solutions To Difficult Problems Are Simple

Here is an elegant solution for a very difficult problem... and we find that Patrick is not only smart, he's delightful!

Enjoy the video and then please pass the link along to everyone you know who works with people with ALS.

Speakbook - How it works from speakbook on Vimeo.

Calling A Day "Global Awareness Day" isn't Enough

We need a roar from all of our ALS and Motor Neuron Disease organizations that decided that June 21 would be Global ALS / Motor Neuron Disease Awareness Day.

Please roar this year.

On June 22 we don't want to have to say, "Who knew?" again this year.

So The Pyramid Is Out

People with ALS don't have the luxury of eating off a well-balanced plate. Perhaps they need their own symbol of good nutritional balance. Any ideas?