Saturday, December 29, 2007 - We Need Some Numbers To Crunch And All We Have Are Our Cornflakes
ALScounts heard an advisor for a Presidential candidate give some interesting statistics on TV last night. He said that 4600 Americans are killed annually in automobile accidents caused by illegal immigrants. He went on to express outrage at the cumulative effects over the years of this loss of life.
Being a curious person who likes numbers, ALScounts wondered about the 4600 figure. Would those accidents have the same outcomes if the drivers had been legals with Green Cards or U.S. citizens? What were the factors in those accidents. How precise is the 4600 estimate? Is that number constant over the last few years or has it grown? ALScounts didn't know if the claim was outrageous or not, but there are ways to find out.
Fortunately we have governmental agencies that retain extensive details on fatal automobile accidents. We wouldn't think of not having an accident report for a fatality! We have the information that one would need to validate the 4600 claim or to qualify it. We have the information that our considerable safety experts can use to learn from fatal accidents to try to improve the human and physical factors that cause these horrible deaths. We have the numbers to crunch.
Based on what spotty data we have on ALS, we're pretty sure that ALS takes a much, much larger toll of American lives than 4600 every year. We just don't have the trail of data to crunch. There is nothing akin to an accident report that is left behind when someone with ALS dies. If we had the data, some smart Americans could crunch them and come up with some improvements to the status quo.
Wednesday, December 26, 2007 - If Only This Were Required Viewing for Senators...
Wednesday, December 26, 2007 - Can You Hear The Increasing Noise Level?
There has been an interesting e-reaction to Senator Coburn's hold against the ALS Registry Act. PALS and CALS and grass-roots advocates are not taking this one lightly.
Senator Coburn, this might be a good opportunity to find some positive action that you can take to be part of the solution rather than being part of the problem. If the ALS Registry Act isn't the right solution in your professional opinion, please step up with some leadership for something that is.
Tuesday, December 25, 2007 - ALS Doesn't Take A Christmas Recess
Today there are many thousands of Americans dealing with ALS. Some are at the beginnings of their journeys. Some are finishing. It's a difficult road regardless of where the path goes. It's a trip that sometimes races from stage to stage, even on holidays.
Please remember all PALS and CALS in your Christmas prayers. Please pray, also, that by next Christmas we will have done the right things to enable researchers to unravel this mystery of a disease.
Peace be with all today.
Friday, December 21, 2007 - He Must Not Have Been Paying Attention The Day They Studied ALS In Medical School!
This morning's WSJ has a front-page article on Senator Tom Coburn of Oklahoma. He takes pride in being a one-man legislation blocker in the Senate. He likes being Dr. No. Evidently he's a practicing physician in addition to being on the taxpayers' payroll in the Senate. He thinks he's being paid to stop legislation. The article specifically cites his stopping the ALS Registry Act from coming to a vote.
This seems really odd to ALScounts. A man who took an oath to first do no harm is willing to stop a simple registry that can potentially hold the clues to save thousands of lives. He just doesn't get it. He likes being the obstinate Senator more than being the compassionate, competent physician, that's for sure.
ALScounts would encourage any of his patients to perhaps reconsider their choice of physician. ALScounts would encourage the voters of Oklahoma to find somebody else to represent them in the Senate.
Saturday, December 15, 2007 - Thank You, Julia.
Congresswoman Julia Carson of Indiana died this morning.
ALScounts met Julia in 1997. Mom had just died from ALS. ALScounts wanted to try to do something constructive with the grief and rage, and the old ALS Digest had sent out some information about the need to modify the Social Security waiting periods for disabilities. ALScounts called the Congresswoman's office in Indy and asked for 15 minutes on her schedule. The appointment was made. ALScounts had talking points ready and was ready to try to make the sale for some help for the cause in 15 minutes or less.
Julia was awesome that day. She was most gracious. We went into her office and we talked and we talked. It was over an hour. She asked good questions about ALS and she listened and then she asked more questions. By the end of that meeting, ALS had an advocate on Capitol Hill.
Occasionally I would run into her traveling or about town. She always recognized my face and would always point at me and say, "Lou Gehrig's Disease." That was usually followed by one of her famous hugs.
During the past few years when she has been in ill health, her Washington, DC, office staff has been most helpful as we have visited on Advocacy Day. They're always supportive of whatever we ask to help PALS and CALS. Julia and her staff were ones we could always depend on. She understood the issues and wanted to help.
Thank you, Julia.
Friday, December 14, 2007 - It's Time To Pick Up The Gauntlet And Do Something Truly Good For The Holidays
Senator Harry Reid issued a statement this week that cites the ALS Registry Act as being a victim of partisanship in the Senate. ALScounts wondered what effect his throwing down the gauntlet will have. Will it make Senators see a very simple way that they can do something decent and productive? Will it make Senators dig their heels in against being chided by the majority leader? The gauntlet was thrown down. What happens next?
ALScounts would like for the Senators who have not yet formally committed to support the ALS Registry Act as cosponsors to reconsider. To sign on as a cosponsor means that some of your most vulnerable and most innocent constituents will get a ray of hope that their data will contribute to a cure for the next person to be slapped with ALS. To sign on as a cosponsor means that you will have taken a very simple step that will make the CDC and private research more productive by giving our smart scientists some dots to connect in the search for the cause of ALS.
There's something in it for you, too, Senators.
When you Senators decide to join forces via the ALS Registry Act, other good things will happen. It will make opportunities for all citizens to find out that our elected officials chose to do something good and decent before the end of the year. The many PALS I've met are incredibly talented people who find creative ways to speak up. You can be assured that when our Senators come together and decide to treat the ALS Registry Act as a simple and decent and smart piece of legislation (and not a gauntlet) that PALS and caregivers and widows and orphans and not-for-profit organizations involved with ALS will step up quickly and make sure that the entire country knows about our Senate's ability to overcome the gridlock of partisan bickering and deliver something good for Americans. We'll make sure that the media know about the Senate that found a way to agree and deliver a simple and decent piece of legislation that will make a difference in lives.
This is the time of year when we're supposed to be very aware of doing the right thing and caring for others. Senators, here's your chance.
Sunday, December 9, 2007 - We Lose So Many Bright Lights Every Year!
ALScounts read about the Rockefeller Center Christmas tree and its 30,000 lights. The tradition of the tree started in 1939, the same year that Lou Gehrig took himself out of the lineup. In 1941, the year Lou died, lots of lights were added to the tree.
If they lost at least 6,000 light bulbs on that tree every year, it would have amounted to almost half a million light bulbs since 1939.
If they lost at least 6,000 light bulbs on that tree every year, do you think that the people in charge of Rockefeller Center would have figured out the problem by now?
Tuesday, December 4, 2007 - If Ever A Disease Needed A Spell Checker!
The U.S. Surgeon General has a wonderful online tool for tracking family health histories --
How many of us forget exactly what ailed our deceased grandparents or great aunts and uncles? ALScounts tried the family health history tool. The expected entries of heart disease, cancers, diabetes are provided, and you're able to add diseases at will. The Surgeon General gave us a terrific glossary and spell checker to assist in adding diseases that may have afflicted someone in our family tree. Unfortunately there is no glossary or spell check entry for the disease that is impossible to spell and pronounce - amyotrophic lateral sclerosis.
ALScounts emailed the Surgeon General to ask that it be added to the possibilities so that we might include it in family health histories. Once ALS strikes your family, you never want to forget it (even if you might not remember how to spell it).
Tuesday, November 27, 2007 - One Size Never Fits All
Thirty years ago we started to embrace the concept of hospice care. The inhumane practices of treating a 90 year-old cancer patient in a noisy hospital with noisy machines and incessant midnight blood tests were being replaced in our society with compassionate, realistic palliative care.
Our healthcare system has come a long way in offering patients and families end-of-life care. The paradigm shift to hospice care was embraced by our society.
With cancer in our society, most patients get a chance to enter the big fight with some good medical therapies and a determination to beat it. Sometimes that works and we have a survivor. Sometimes that doesn't work and the patient accepts the future knowing that it was a good fight.
ALS teaches us that one hospice model does not fit all diseases. PALS are handed a diagnosis that does not include the options for the big fight. They have the determination, but medical science doesn't have a good pair of boxing gloves for them to try to beat the disease. Instead they have to skip to a kind of acceptance that always includes the hope that the cure will be found tomorrow. They want to be around in case tomorrow is the big day. Like Morrie Schwartz taught us, they know that their time will come (and much of that timing depends on the interventions they choose), but as long as ALS is a mystery, it's not an acceptance that includes knowing that they've had a fair fight.
The New York Times wrote about hospice care --
November 27, 2007 In Hospice Care, Longer Lives Mean Money Lost
CAMDEN, Ala. — Hundreds of hospice providers across the country are facing the catastrophic financial consequence of what would otherwise seem a positive development: their patients are living longer than expected.
Over the last eight years, the refusal of patients to die according to actuarial schedules has led the federal government to demand that hospices exceeding reimbursement limits repay hundreds of millions of dollars to Medicare.
The charges are assessed retrospectively, so in most cases the money has long since been spent on salaries, medicine and supplies. After absorbing huge assessments for several years, often by borrowing at high rates, a number of hospice providers are bracing for a new round that they fear may shut their doors. In the early days of the Medicare hospice benefit, which was designed for those with less than six months to live, nearly all patients were cancer victims, who tended to die relatively quickly and predictably once curative efforts were abandoned. ... But in the last five years, hospice use has skyrocketed among patients with less predictable trajectories, like those with Alzheimer’s disease and dementia. Those patients now form a majority of hospice consumers, and their average stays are far longer — 86 days for Alzheimer’s patients, for instance, compared with 44 for those with lung cancer, according to the Medicare Payment Advisory Commission
It seems to ALScounts that it's time for the hospice model to be improved. We have muddled the ideas of palliative care and respect for life and death with dignity with a one-size-fits-all Medicare funding model. This is another area where we can learn from ALS. As a PALS once said, "If you can't cure me, then at least learn from me."
Tuesday, November 20, 2007 - WHO's On First...
This morning's paper had a story on the CDC and a new study on heart disease. Although overall deaths from heart disease continue to decline, they have increased in younger women. You can count on the CDC and our nation's healthcare stakeholders jumping on this information to prevent deaths in a group that wasn't fully acknowledged before. Give them some information, and they'll do something about a problem.
The article also mentioned that there are around 500,000 deaths annual due to coronary heart disease. That's a lot, but if you think about it, with ALS deaths estimates we have, for every 100 funerals for a victim of heart disease, there is at least one funeral for a victim of ALS.
ALScounts turned the page, and there was a big article on AIDS and new numbers released by the UN and the World Health Organization. The new cases of AIDS appear to be on the decline, yet it's still a huge world problem, and the numbers themselves are being scrutinized to make sure that the dots are connected correctly. The experts know the value of good information to stop a killer disease.
For the PALS we bury today, we bury their dots with them.
We should all take heed from the heart disease and AIDS efforts. They have made huge progress in reducing deaths by gathering dots and connecting them. They continue to fine-tune their strategies and meet new challenges efficiently by looking at the dots.
We need to smarten up nationally and globally to gather some ALS dots.
Monday, November 19, 2007 - Please Pass It On
On page A4 of this morning's Wall Street Journal there is a wonderful full-page ad. There is no hint of the advertiser Here is the text in the ad --
LET'S REDEFINE CHRISTMAS. BY PUTTING MORE THANKSGIVING IN IT.
No sooner does Thanksgiving end, than the loathsome shopping begins -- a month-long compulsion to buy something, anything, for everyone. We're pressed. We're stressed. And our money is wasted. But we can change all that by focusing on the giving. And redefining Christmas.
Give people donations to their favorite charities.
And request that they give donations to your favorite charities.
A lot more money would go to people who need it. Shopping would be easier and tax deductible. And our giving would be more in keeping with the Christmas spirit.
THE SOLE PURPOSE OF THIS MESSAGE IS TO FACILITATE CHARITABLE GIVING. PLEASE PASS IT ON.
If there's one thing that ALS teaches us all, it's that there are more important things in life than "stuff." There are many charities that help PALS and CALS. None is perfect (kind of like kids), but they're out there trying. Please consider supporting them this holiday season. Don't forget, you're not limited to donating to just one of them.
Please pass it on. Thanks to all this Thanksgiving week.
Thursday, November 15, 2007 - Good Public Health Is Also Good Business
Yesterday Wellpoint, one of our country's largest health insurers, announced a plan to use CDC data find specific problem categories and to improve the health in an individual state They are looking at things like physical activity levels, cigarette smoking rates, heart disease rates, low birthweights, etc. An ounce of prevention is worth an expensive pound of cure for them, and our states clearly benefit when our populations are healthier. It's good business and good public policy. Wellpoint is investing the resources to do things with the public health data that will pay off for Wellpoint in the long run.
ALScounts is always thinking about what we could do with a little data on people with ALS added to the CDC's big pots of information. Maybe ALS is as preventable as heart disease and complications from smoking. Maybe Wellpoint should look at the gazillion dollars in insurance costs for every case of ALS and see if it isn't good business to urge the CDC to gather some data so that they can connect the dots.
Then ALScounts realized that much of the cost of ALS is absorbed by Medicare rather than the Wellpoints. That's good and decent public policy given the nature of ALS, but we need to get our government to realize what Wellpoint realizes about their costly diseases. It's good business to figure out what's preventable and then to prevent it.
Wednesday, November 14, 2007 - Thanks For Listening, Senators!
This morning the ALS Registry Act received unanimous consent from the Senate Committee on Health, Education, Labor, and Pensions. That's one more step in the right direction.
Tuesday, November 13, 2007 - We're Tired of Monkeying Around When It Comes to ALS!
To the right is the agenda (click to enlarge) for tomorrow's meeting of the Senate Committee on Health, Education, Labor, and Pensions. The ALS Registry Act is on the agenda. As you can see, so are a lot of other things that are important to our citizens.
The ALS Registry Act is simply a matter of life and death to thousands and thousands and thousands and thousands of American citizens (sorry, but we can't be more precise than that since nobody has been counting noses).
ALScounts is pleased to update the list of Registry Act co-sponsors among the Presidential candidates currently employed in the Senate. Senators Biden and Brownback have recently joined the list of co-sponsors of the ALS Registry Act. Senators McCain and Obama are not on board. Please let them know that we expect more from those who aspire to the Presidency. How better for them to show their support of our military and to the average citizenry than to back this small piece of legislation that can store the clues that our scientists need to figure out the terrorist disease called ALS!
Senator Obama serves on the Senate Committee on Health, Education, Labor, and Pensions.
Friday, November 9, 2007 - There's Another Fringe Benefit To Military Service That We Need to Address!
On the VA website, there is a wonderful menu of benefits for our veterans. The list includes compensation and pensions, education, home loans, vocational rehabilitation, pharmacy benefits, and burial benefits. These are a small drop in the bucket of the good tangible things that we owe our veterans and their families who have borne the load for the rest of us.
There's also a horrible fringe benefit to military service that didn't make it to the VA website menu. It's ALS. For a number of years studies have shown that veterans of U.S. military service have a higher incidence of ALS than the general population, and veterans of the first Gulf War have an astronomical incidence. This isn't a rumor or a fabrication of the blogosphere. It's a fact. It's a fact that every American should know. It's a fact that every legislator who authorized the Iraq War should have been very aware of. It's a fact that we need to bring to America's attention.
Google "ALS Military" and you can browse and evaluate the references for yourself.
What in the world causes this? Is it neurotoxins? Is it stress? Is it the uniforms? Is it physical activity? Do we not owe our veterans an explanation and our current military personnel some protection from the disease that nobody deserves?
Can you imagine getting through tours in the Iraq war relatively unscathed physically and mentally, only to start tripping or dropping things or slurring some words in a few years? Can you imagine families having to deal with ALS after all they've already given up to military service? Can you imagine trying to make the case that the ALS was service-related in order to get the appropriate medical benefits? Can you imagine finding out that you were slapped with a delayed and difficult way of giving your life for your country?
This Veterans Day we owe our veterans much more than ceremonies and parades. We owe them action on this outrageous fringe benefit of military service. We certainly need to get the word out and shine some light on this dark problem.
Wednesday, October 31, 2007 - Yo, Legislators! Over Here! We're Ready!
Yesterday we learned that our legislators are anxious to beef up the Consumer Product Safety Commission, offering substantial dollars and staffing increases. We also learned that the Consumer Product Safety Commission doesn't want the beef in that form at the current time.
We have people with ALS who are literally dying for a little registry that would at least make their data count for something in the quest for a cure. Senators, if the CPSC isn't ready for you, people with ALS sure are... right now!
Wednesday, October 24, 2007 - Your Life Can Be Turned Upside Down in an Instant
ALScounts has friends in the San Diego area. Very early on Monday morning their lives were turned upside down in an instant. Step 1 - Get out of the house. Step 2 - Get out of the neighborhood. Step 3 - Get away from the fires. That was all easier said than done for them, but they made it to a safe haven that was pet friendly. Everyone acknowledged that they were all safe and that was the important thing, yet there is the angst that goes along with not knowing the outcome of the fires. Is the house still there? Are the kids' friends and neighbors safe? Television gives only a portion of the facts, and that portion isn't always reassuring or accurate. The uncertainty is agonizing, yet they know that in the next few days the facts will unfold and they'll know with certainty what they're destined to deal with in their upside-down lives.
An ALS diagnosis turns lives upside down in an instant, too. It comes with its own kind of angst and uncertainty. Unfortunately people with ALS live in a perpetual uncertain state like that which our friends in San Diego are suffering through right now. Not having a lot of facts about your situation and not knowing how to deal with whatever is ahead makes one twist in the wind. We humans are designed to gather information and take a deep breath and find solutions to our problems. Unfortunately with ALS we have an information dearth that is exasperating for those trying to deal with their ALS problem.
So when lives are turned upside down in an instant, it's never easy. Information and courage and the help of others will help victims of the fire get through their crisis. With ALS, the information piece is missing and we as a society owe some information about the cause and cure to people whose lives are turned upside down by ALS.
Also, please keep in your prayers those dealing with the fires, and special prayers for the hundreds dealing with the fires and ALS.
Sunday, October 21, 2007 - Going, Going, Gone
It appears that one of Lou Gehrig's jerseys has survived intact and has not been cut up into those dreadful little relics that are sold by the square centimeter to collectors.
There's something about seeing an historical piece of clothing that brings a special image of the person to mind. ALScounts saw St. Francis' garment displayed at Assisi and it gave quite a visual on the meaning of a 13th century vow of poverty. At the Louvre, ALScounts saw the display of Jaqueline Kennedy's clothing and it brought a vivid sense of a vivid White House (that was obviously beloved by the French). The Smithsonian's displays of Presidential togs leads one to compare the shoulders and times and personalities of our national leaders. A jersey that Lou Gehrig actually wore would bring a understanding of the physical and mental strength of a great man whose life was cut short by a disease that persists to this day. This was not a frail, sickly man who fell to an unknown disease. ALS had been around since Charcot had identified it shortly after the American Civil War. This was a man with broad shoulders and strong arms who could hit the ball and make plays and show up to do his job well every day. Lou Gehrig was a mountain of strength who was felled by a disease that continues to take people of strength today.
They anticipate that the jersey will be auctioned for over a quarter of a million dollars. ALScounts hopes that it will be kept intact to help us visualize the important man who was an Iron Horse in baseball and in courage. And may the day come soon when Lou's disease will be talked about in the past tense.
Monday, October 15, 2007 - It's Not Just Another Fundraiser
ALScounts goes to the local Walk to D'Feet ALS every year. It's a big fundraiser that keeps the local chapter of the ALS Association in business and present in our community. It's also a whole lot more than a fundraiser.
As a child of the Sixties, ALScounts knows the value of a good demonstration, especially when there is something outrageous going on in society. ALS is about as outrageous as it gets. Yesterday we had around a thousand people walking in a visible venue. That's a demonstration. It actually attracted a news crew that covered the walk and explained ALS on the local news last night. Score one for the demonstrators!
The gathering of people with a connection to ALS sends an important message about the pervasiveness of this killer disease. There are a lot of us who have lost loved ones years ago. There are people dealing with it today. There are friends and relatives and caregivers and patients of all ages and colors and religions and genders. There are young children wearing buttons with deceased parents' pictures. There are golden oldies who have lost spouses. It's a real melting pot of people who have been robbed by a disease with no known cause and no cure.
The biggest team got to lead the walk yesterday. Our pacesetter was a gentleman in a wheelchair being pushed by his best friend, and ALS wasn't even on his radar a year ago. We have to remember that when we see people with ALS such as this young gentleman, they've not spent their entire lives in wheelchairs or being sickly. Many are just like Lou Gehrig - vibrant achievers and usually healthy as oxen into whose lives this terrorist called ALS arrives. They are also pretty incredible people just like Lou Gehrig who have an attitude that some good must come of this. Their courage should humble us all.
We must continue walking and demonstrating and raising Cain and raising funds and demanding that the clues be gathered until this disease is stopped! It's outrageous in our society that the dots are not even being collected. Yesterday there may have been a man on a golf course somewhere having the round of his life who will be leading the Walk to D'Feet ALS from a wheelchair next year.
Tuesday, October 9, 2007 - Zero-Sum Game Advocacy= Zero-Sum Hooey
In the October 7 Los Angeles Times, David Rieff writes of "The Darful Deception" in an op-ed piece. He speaks of how the Darfur case is pitched in order to spark the needed advocacy efforts for the cause.
Rieff writes, "After all, to a regrettable extent, activism is a zero-sum game. When all is said and done, a group that is passionately committed to the plight of Darfur is competing for donations with groups that are equally passionately committed to curing Lou Gehrig's disease or stopping global warming or combating homelessness. For each group, their own cause is preeminent. But, alas, there are only a finite number of contributions to go around."
ALScounts respectfully reacts to that as a gross underestimation of the human spirit. The more we care, the more we care. The more we do, the more we do. The more we give, the more we give. We aren't groups of advocates fighting over a finite pool of energy and goodness and generosity. People working to improve the world should not be pitted against one another nor should they feel that they are competing. It's not that God will only allow us the brains and resources to solve one of the world's problems. When humans raise the activism level for goodness on this earth, everybody gets better.
It's the old principle that if you want something done, give it to a busy person. If you want a genocide stopped or a disease cured or homelessness dealt with or all of the above, give the problems to a society that is busy doing good things.
ALScounts was pleased that Lou Gehrig's Disease made Rieff's radar. It's not a zero-sum game, though.
Saturday, October 6, 2007 - Medical Records Are Waltzing Toward What Music Did Decades Ago!
The last couple of weeks have included some significant announcements regarding digital health records. See the September 17 entry below for a perspective.
It seems to ALScounts that digital health records will play a huge role in providing timely and accurate dots for the researchers to connect to figure out ALS. Our old ways of having health information silos which are slow and inaccurate to correlate have obviously not given us the cause or cure information we need.
Microsoft HealthVault beat Google Health to the marketplace this week. Microsoft is gathering alliances with not-for-profits such as the American Heart Association (to include a blood pressure management center in HealthVault). Microsoft is gathering alliances with major hospitals and healthcare providers and instrument companies. This gets interesting when a portal might be designed to gather particularly pertinent information on PALS that would be intrinsic with the PALS' medical records... or where a new environmental factor could be added for PALS to update as discoveries are made.
There is a flip side to the privacy issues that concern most consumers (and rightly so). There are data availability issues today because of our lack of integrated patient data. Many PALS would like very much for their data to be useful to researchers, yet today their data are buried in files and we're working hard for a registry to release them from their captivity. Once a Registry Act authorizes the release from captivity, there is a long row to hoe to deal with the melange of data that will need more than Arthur Murray to be put into a coordinated and meaningful form.
The fact that Microsoft and Google and dossia are racing to a common goal is good news to ALScounts. We don't know what company will set the gold standard in digital patient records (remember 78s and 45s and 33.3s and 8-tracks and cassettes and cds and mp3s,...) , but ALScounts is sure that once we start a sound implementation of well-designed digital patient data that the whole concept of a registry and connecting dots becomes much more do-able. Dots that are in file cabinets and proprietary computer systems are hard to connect as we have proven in the past with the lack of a cure.
It's time to waltz toward some 20th Century medical records (yes, ALScounts realizes it's really the 21st Century in most areas of our lives).
.................................................................................. How can we connect the dots if we're not even collecting the dots? ..................................................................................