It's interesting how our calls to action have changed in the last decade, both in media and in causes.
Yesterday ALScounts received an email from Delta asking for support for their acquisition of routes for new service to China. I read how wonderful it would be for me, a Delta frequent flier, to be able to fly from Atlanta to China. I was asked to click a button to tell the DOT of my preference.
Later ALScounts received an email from USAirways asking for support for their acquisition of routes for new service to China. US seems to have been running a little late with their message They wanted me to tell the DOT that I want to be able to fly from Philadelphia to China using their service. I was urged to click their "Get Involved" button.
It's easy to "get involved" these days without really getting involved. Those buttons are easy to click. The causes aren't matters of life and death. They're simply matters of business and convenience. It takes a few seconds to click and we feel that we've somehow made a difference that may positively affect our flying options.
Getting involved in the battle against ALS is harder than simply clicking a button in a message and moving on. ALS is an overwhelming disease to deal with, both for PALS and their caregivers. They can't just drop everything and gather lots of public support and attention. ALS involves a pretty steady downhill slide that is steeper for some than others, but it is never an easy journey.
Those of us who are not in the throes of dealing with ALS have an obligation to get involved. We can click buttons and help with e-campaigns. We can also donate from our pockets and explain our wristbands and join a walk and donate a little more from our pockets and talk to our legislators. When we encounter someone dealing with ALS, we can mow the grass or drop off a meal or run some errands. Every day we can find a way to get involved. Some days it will be no harder than it was to tell the DOT which carrier we preferred to have the China route. Some days it will be a little harder, but it will be infinitely more important. When the world starts to see engagement from millions of involved people, the numbers of people affected by ALS become tangible, and other people will start to relate to this as in issue that could affect them.
The airlines understand the importance of numbers when talking to the government about routes to China. We need to have the same attitude about our matter of life and death called ALS.
Thursday, July 26, 2007 - Another Disease Gives Us Hope
There was news this morning that another significant achievement was published in the New England Journal of Medicine regarding testicular cancer. New treatments have been developed that offer remarkable cure rates for even the most difficult cases that don't respond to first treatments.
One line in the Washington Post jumped out at ALScounts -- "From 7,000 to 8,000 cases of the cancer are reported in the United States each year. The overall cure rate is 90 percent for the first round of treatment... "
7,000 to 8,000 new annual cases are not that much different from the new cases of ALS found in this country each year. We have hope that with some smart science and resources, people with ALS may see the same kind of hope and cures that testicular cancer patients are seeing. Oh, that our Lou Gehrigs can become Lance Armstrongs! An investment in a cure can indeed be worthwhile for a disease that has under 10,000 new cases every year. Ask Lance Armstrong.
Monday, July 23, 2007 - Today The Buzz is Business By Data
This morning's WSJ had an interesting article about the "business by data" concept which has taken over from "management by objectives" and "total quality management."
"The real trick, then, is to combine these skills, gaining advantage by analyzing today's problems while looking creatively for tomorrow's opportunities."
The road to corporate performance is paved with data turned into information. Google tracks every keystroke. P & G pays attention to every supply chain transaction and every market research study. Why aren't we even retaining the data that hold the clues to ALS? Today's ALS problem is indeed tomorrow's opportunity. It's time for some business by data rather than business as usual when it comes to ALS.
Sunday, July 22, 2007 - The Nobel Prize in Medicine Goes To______[fill in the blank]_____.
From "The Globe and Mail," July 21: "At least seven out of the province's 10,500 full-time firefighters have recently developed ALS, including two pairs from the same stations." [full article]
Is this an occupational or Canadian geographic cluster, or are we just better at identifying ALS when we're paying attention? Doesn't it make sense to save data about all who have been diagnosed with ALS, especially those who have dedicated their lives to keeping us safe?
Perhaps it's time for a little international rivalry to see which country can collect and connect the ALS dots first.
Or as a refreshing sign of international goodness, maybe it's time for countries to pool their dots and brains and cure this global menace together.
Either approach will be welcomed by those Canadian firefighters who are forced to listen to a terrible ticking clock we call ALS or Lou Gehrig's Disease or Motor Neurone Disease or Maladie de Charcot.
Friday, July 20, 2007 - Hurry, Children of PALS! You're Going To The Candidates' Debate.
ALScounts read in this morning's paper about the covergence of YouTube and the upcoming CNN debate for the zillion Democrats running for President. Get out a webcam. You can submit your questions to the candidates via YouTube.
This is the moment for all of those young people who are riding the out-of-control roller coaster called My-Parent-Has-ALS to ask some questions of (and give an education to) some candidates, one of whom may be living in the White House in a few years. This is the moment for all of those young people who have had their educations interrupted by caregiving and grief to ask some pointed questions that will help the next generation. This is the moment for youth groups to put some civics lessons into action. This is the moment to ask for some help from your schools to get an effective pitch together and on YouTube quickly.
Here's the link. We'll be watching! Hurry, the deadline for the first debate is July 22.
Tuesday, July 17, 2007 - Maybe It's Time For A Legal Name Change
A wise PALS used to become frustrated with the impossible name of her disease. "Thank God for Lou Gehrig, or it wouldn't even have a name that anyone can remember," she said. It gets lost in a muddle of all of the 'initial' diseases.
She also felt strongly that we need to get the word out. Often people who heard her slurred speech and saw her neck brace would ask about what had happened. Her reply was always, "It's ALS. Do you know what that is?" She never just said, "ALS." It was always, "ALS. Do you know what that is?"
Some people who had lost a loved one to ALS shared their experience, and other people who did not know ALS from any of the other 'initial' diseases learned about how Lou Gehrig's Disease is still going strong.
All of us could learn from that wise PALS. When ALS comes up in a conversation, it should always be, "ALS. Do you know what that is?"
Saturday, July 14, 2007 - Here's A Startling Number
Yesterday someone told ALScounts that a quarter of all American deaths are veterans. That certainly was an eyebrow-raiser.
Our friend Google helped us find a confirming reference -- "...about 28 percent of all deaths in the nation are veterans, according to the National Hospice and Palliative Care Organization..."
ALScounts started thinking about older age groups and the draft. That large percentage started to make some sense to this enquiring mind.
Enquiring minds might then wonder if 28 percent of PALS are veterans. Enquiring minds might wonder given the studies showing increased ALS in all military veterans if the percentages of ALS deaths who have earned flags at their funerals might be even higher... or might it be lower since we're seeing ALS in people who were much too young to even remember when there was a draft requiring military service. Enquiring minds do not have these data on PALS.
Enquiring minds need some dots to connect!
Friday, July 13, 2007 - We Need To Be Racing For A Cure
Yesterday Hoosiers learned that we will not be hosting a Formula One U.S. Grand Prix in 2008.
For race fans like ALScounts, that is a big disappointment. It seems that it boiled down to money and a business decision. $15,000,000 just wasn't enough to offer to host the race.
Rumor has it that India has offered many more millions to host a Formula One race.
Throughout the world, many have millions to spend on recreation. We have millions to spend on finding ways to make cars go faster and to make fans gravitate to some expensive souvenirs and have some fun. I hope that we can join together to keep our eyes focused, too, on some important ways to spend a few million so that ALS might be figured out.
Thursday, July 12, 2007 - Here's A Serious Business Case
ALScounts saw in the morning paper that a pharmaceutical giant is working on increasing its market share in a profitable existing therapeutic area. Here are the numbers cited --
- U.S. patient population = up to 30,000,000 men
- Current annual global sales of all products in that therapeutic area = $1,477,600,000
- Therefore, annual sales per patient = $49.25
- U.S. Direct-to-consumer advertising expense by the big players in that market = $229,300,000
Here's a business case for having a pharmaceutical therapy for ALS, a disease that kills thousands annually --
- U.S. patient population = at least 30,000
- That's 1/1000th of the population of the other therapeutic area.
- So could an effective ALS therapy give annual revenues per patient of 1000 times the other category, $49.25*1000 = $49,250 per patient?
- Given the amount of money that families and insurance companies and Medicare and Medicaid spend on equipment and care and home modifications and transportation for PALS annually, $49,250 would be money well spent on a drug that would cure the disease or at least stop the progression in a patient!
- So ALS is a therapeutic area where we think the revenues could generate the same revenue as that existing profitable category... in the range of $1,500,000,000.
- As icing on the cake, the direct-to-consumer advertising expense of $229,300,000 would not be necessary. PALS would be lining up to get the drug with no advertising required. Indeed, the Nobel Prize that the pharmaceutical company might win for curing ALS globally would be better than a billion dollars in direct-to-consumer advertising. Corporate image and all product lines would skyrocket.
- Here's another business plus for having an effective therapy -- the patient population would start to grow. The market size would increase by over 20% per year if maintenance therapy were used and the patients simply stopped dying of ALS.
Lives would be saved by curing ALS and we wouldn't have to be bothered with a lot of t.v. ads that we don't want to have to explain to the kids.
Wednesday, July 11, 2007 - We Lose Such Incredible Talents
Former German Chancellor Gerhard Schroeder poses in front of a his official portrait painted by late German artist Joerg Immendorff in the chancellery in Berlin, Tuesday, July 10, 2007. (AP Photo/Markus Schreiber )
Immendorff died of motor neuron disease (ALS) on May 27, 2007.
May those who view this portrait always be aware of the talented individuals whom we lose every day by not having a cure for motor neuron disease.
Friday, July 6, 2007 - It's All A Matter of Priorities
Today's big news on the business page read, "Microsoft said it will take a $1.05 billion to $1.15 billion pretax charge to cover defects related to the Xbox 360 game console."
Our best and brightest who are stricken with ALS deserve our investment! We who have so much to spend on games must not forget that there is much to do to rid this world of ALS.
Microsoft is extending the warranty on each and every Xbox for three years. That has a nasty tinge of irony when you compare that to the average life expectancy of a newly-diagnosed person with ALS.
Wednesday, July 4, 2007 - Jeopardy! ... What Are The Odds?
Last night on Jeopardy! in the Great Speeches category, the "Luckiest Man" speech was an answer. That was fitting since Lou Gehrig delivered that speech on July 4, 1939. That's the last most of us saw Lou Gehrig.
Later in Double Jeopardy! there was an answer that involved one of Lead Belly's musical instruments. How ironic that another talented man who died from ALS was part of a Jeopardy! answer in one show.
What are the odds?
Tuesday, July 3, 2007 - We Have Another Co-Sponsor in the House!
ALScounts just received an email from Brian in Congressman Ellsworth's office that the Congressman has signed on as a co-sponsor of the ALS Registry Act. Thanks very much!
Tuesday, July 3, 2007 -- Any Attention on the Front Page of the WSJ is Good!
There's a pretty startling headline on the front page of this morning's Wall Street Journal,
"A Risk in Cholesterol Drugs Is Detected, but Is It Real? Data Crunching Hints At Tie to Lou Gehrig's; FDA Isn't Concerned."
Attention-getters on the front page of the WSJ are something that ALS doesn't get just every day.
So please take some time and read the article. ALScounts is a bit of a doubting Thomas on statins being the big trigger, but we have not collected the right dots to know for sure. Maybe it's the lipid profiles of people who need statins that is the big clue. We simply have not collected the right dots to know for sure.
The FDA has a difficult job in sifting through adverse drug reaction reports of ALS. There is not a comprehensive pool of data on PALS who have never taken statins. There is not a comprehensive pool of data on when PALS started taking statins relative the ALS onset. There is not a comprehensive pool of data on the lipid profiles of PALS. There is not a comprehensive pool of data on the other general health characteristics of individual PALS.
If there is a possible statin factor in triggering ALS, certainly we need to figure that out. If there isn't, we need to figure that out, too. There are smart and caring people out there who can get to the answer when given the necessary data!
Once a person has encountered ALS in person, the whole idea of a triggering event or substance constantly comes to mind. PALS want answers and they deserve answers as to how they ended up with the diagnosis that nobody wants to hear. Thank heavens they and some physicians are raising the noise level about possible triggers.
ALScounts guarantees that some good will come from today's WSJ. Lou Gehrig's Disease is in the minds of millions of readers today, and they'll pay attention. Perhaps some cases that were being mistaken for back trouble or strokes will be diagnosed correctly today because Lou Gehrig's Disease is rattling around in some readers' minds. Perhaps some mysterious symptoms of a person who happens to be taking Lipitor will suddenly be recognized as ALS just because of that article.
This whole statin-ALS theory/dilemma is just screaming for more data so that some facts can be determined. It seems to ALScounts that a good ALS registry helps PALS and the FDA and the pharmaceutical industry and Jane and Joe Citizen. We are a nation that has excellent minds and cares for its people. Let's determine some facts so that we can care for our people respectfully.
ALScounts lost a loved one to ALS whose cholesterol and prescription history may have contained a clue on the cause. Her dots were important. We should have collected them. Out of respect to all with this disease, we should be collecting and connecting their dots.
Monday, July 2, 2007 -- Make it Pay to Count!
Here's an idea for a grantmaking foundation that wants to make a difference.
Offer $1 for every living person with ALS that a 501c3 is able to report that it serves. Surely in the big picture of grantmaking, that's a modest proposition that could shed a lot of light on the ALS numbers and our efficiency at helping people the disease.
Most of the not-for-profit ALS organizations that ALScounts has encountered are pretty lean ships that would definitely go the extra mile to submit a list of PALS in order to receive a few hundred dollars.
ALScounts also suspects that sometimes those organizations are so lean that staff members don't aggressively find every living PALS in their service areas for fear that they won't have the staff to help them all adequately. Another ALS Catch-22.
This would be an easy way to help organizations helping PALS and at the same time uncover some numbers and perhaps find how well existing not-for-profit agencies are finding people with ALS. Everyone could win.
.................................................................................. How can we connect the dots if we're not even collecting the dots? ..................................................................................