Tuesday, August 28, 2007 - Time Is More Than Money
At the ALS Advocacy Conference in May, ALScounts attended the general session where the ALS Registry was discussed. One of the speakers from the CDC used the expression "months and months" when describing the process for designing and implementing such a disease registry.
The minute those words- months and months - slipped out, ALScounts cringed. The room was filled with PALS and CALS and former CALS, all of whom know that ticking clock that goes with ALS. The gentleman clearly didn't realize that he had used words that can describe a lifetime for some PALS.
After the session ALScounts asked the speaker privately how long it would take to implement the registry if everything went swimmingly well. He balked at answering the question. When ALScounts pressed for his most optimistic estimate (assuming no problems) once they had the approval and funding, he thought for a moment and said, "two years."
PALS and CALS know the frustrations of healthcare delivery that can't keep up with ALS.
Now we face the frustration of a legislative branch and agency that move at the pace of government. We need to pick up that pace since ALS is marching on to its own much faster drummer.
Saturday, August 25, 2007 - Sylvia Porter Could Have Handled This
ALScounts has been troubled over the lack of good data on the total cost of dealing with ALS.
Part of the problem is our healthcare reimbursement system. The party that pays out-of-pocket perceives the expense, but there doesn’t seem to be anybody keeping track of the cumulative expenses that all of those payers spend. We need somebody to tally of all of the expenses, regardless of payer... and there is certainly a complex network of payers in a case of ALS. There are PALS. There are insurance companies. There are CALS and family and friends. There are Medicare and Medicaid. There is the VA. There are not-for-profits that supply grants and equipment. There are providers who may be allowing discounts. There are a lot of people and organizations who pay for the tremendous expenses of ALS, and ALScounts doesn’t see anyone with a big master spreadsheet counting the payments of all of those payers.
ALScounts has a theory that ALS is the disease that the durable medical equipment dealers love. ALS requires a lot of stuff, and you barely use one piece of equipment before you need the next. The multitude of payers for these things along with the urgency of the ticking clock make it difficult (and distasteful when you’re in the middle of ALS) to focus on a total cost.
There are also a lot of indirect expenses associated with ALS. PALS and CALS pay for deliveries and services that they would not have needed were it not for the ALS. That gas guzzling van with a wheelchair lift could well have been an economical smaller car for the family without ALS. The household help or grass cutters or delivery fees for dry cleaning and groceries would never have been considered by some families before the ALS hit.
Caregivers also incur some very hidden expenses. Most would never complain and never regret their caregiving time, but many take a financial hit with lost employment hours or career opportunities. Caregivers with health problems that are exacerbated by dealing with the ALS also have special expenses that should not be ignored.
If we had a tally of all of the direct and indirect expenses of ALS, the numbers would be staggering. The government might then perceive that those Medicare and Medicaid and VA expenses make that ALS Registry a very smart business decision.
Maybe this topic would be of interest to some bright business students looking for a worthwhile and interesting project. Maybe some team competition among some bright business students would give us some interesting expense analyses. Maybe some budding business journalist could expose the real material cost of this disease. Maybe a national not-for-profit or foundation would see a smart opportunity to challenge and engage some students this way.
Friday, August 24, 2007 - The CDC Is Counting What???
Today's Wall Street Journal has a column by The Numbers Guy on the cost of weddings. The $30,000 that many people say is the average may not be telling the whole story. The median is actually closer to $15,000. A few ultra-extravagent weddings can skew that average. They cite several popular wedding industry sources for their information. Then came the sentence that floored ALScounts --
"Roughly 2.2 million weddings took place last year, according to the Centers for Disease Control and Prevention."
We've been begging for the Centers for Disease Control and Prevention to establish a registry for ALS (a disease that kills people) and they've been counting weddings.
Thursday, August 23, 2007 - The Natural Disasters Just Keep On Coming
ALScounts was disappointed that ABC didn't run the Nightline piece last night on the young family dealing with ALS. Yesterday seemed like a slow news day with good possibilities for some time to talk about ALS.
In retrospect, it wasn't a slow news day (or a slow news week for that matter). Natural disasters were rampant. The earthquake in Peru took over 500 lives and caused such terrible devastation and sorrow for people who have not been given a lot of material means. Hurricane Dean roared through the Caribbean and Mexico upsetting lives and destroying people's homes and livelihoods. Floods in Ohio gave new meaning to the concept of feast or famine when it comes to Mother Nature.
Oh, in the last week well over 100 Americans got the ALS diagnosis and right now are scurrying about trying to find out about the treatment or cure that their neurologists didn't know about.
Also in the last week, there were over 100 funerals for PALS who fought the fight but weren't given much help by medical science. If we knew the numbers worldwide, it would surely qualify as a huge, ongoing natural disaster.
We pray for everyone affected by these natural disasters, and we hope that ALS can stay in the fronts of our minds and and be addressed as a natural disaster that we can actually prevent with some research and some answers.
We look forward to the segment on Nightline on a future date.
Tuesday, August 21, 2007 - National News Is A Precious Thing For Those With An "Orphan" Disease
Many of us met Morrie Schwartz via Ted Koppel's wonderful series on Nightline. Morrie died over ten years ago, yet his wisdom lives on because of Ted Koppel and Mitch Albom.
Today's buzz amidst the ALS cyber-community is that there is a Nightline segment scheduled for Wednesday, August 22, featuring a young mother with ALS and her family.
This young family is too young to remember Koppel. ALS continues to terrorize both the elderly and the young. How many tens of thousands of precious humans has ALS taken from us since Morrie Schwartz died? How many tens of thousands of young families have faced challenges that no young family deserves? That "orphan" adjective for this disease has a terribly cruel twist.
We look forward to some national visibility for ALS on Wednesday night. We pray that it might move some movers and shakers to help us get the means to get to the bottom of this outrageous disease.
Thursday, August 16, 2007 - It's Time for Widows and Orphans and Widowers and Friends and Neighbors to Raise Some Cain!
ALScounts read some articles on Constitutent Lifecycle this morning. The smart people who write software to manage relationships with constituents of all kinds pay close attention to the lifecycles of those relationships and how information can enhance one's effectiveness in dealing with those constituents. A common example involved universities dealing with the student experience over those four dynamic years.
Four years. That one rang a bell. That's a very common lifecycle for a PALS or a CALS relationship with ALS. All within a window of four years, so many people have to deal with the shock, the rage, the difficulties, the acceptance, and more difficulties. So much happens in a short period of time, and we continue to lose these fine people as we lost Lou Gehrig in 1941.
Organizations that try to raise awareness of ALS and advocate on behalf of PALS have an interesting challenge. The lifecycle of their constituents is a problem. They're constantly dealing with green "recruits" (I hesitate to use that term... it's not exactly an all volunteer army against ALS). They're constantly losing their experienced advocates.
Those of us who were CALS and friends and loved ones of PALS have a huge obligation to continue the fight. If we don't, the cumulative memories of what we have lost to this disease will be diminished to the current patient population. That's wrong.
We had Tuesdays with Morrie, but the world now needs to deal with Wednesdays with Morrie's kids and Thursdays with Morrie's grandkids and Fridays with Morrie's students and Saturdays with Morrie's neighbors and Sundays with Morrie's friends and Mondays with Morrie's fellow teachers. We all need to continue the fight and insist that the hole that ALS has left in our lives will be remembered with some constructive action.
We must never "move on" from ALS. Its lifecycle must not end until we know the cause and cure.
Tuesday, August 14, 2007 - Somebody's Going To Try To Count "Anterior Horn Cell Disease Motor Neuron Disease Code G12.2!"
This was exciting news from Tuscaloosa, Alabama! We anxiously await the results. Some good will come of this, if only to prove how difficult it is to count death certificates when your "code" doesn't resemble any of the colloquial names for your disease. _______________________ Article published Aug 13, 2007 Health department to investigate local ALS cases Review may show if Tuscaloosa County has unusual number of cases
By Sarah Bruyn Jones Staff Writer
The Alabama Department of Public Health has taken the first steps in investigating deaths from Lou Gehrig’s disease, particularly in Tuscaloosa County. A state epidemiologist is conducting a preliminary review of death certificates from the past decade to see if they show a higher-than-normal incidence of amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease. While the review may give some insight into whether Tuscaloosa County has an unusual number of ALS cases, interpreting the reasons for it may prove more difficult. Observations Unscientific observations such as reports of six cases of ALS within one church in Tuscaloosa have some people wondering if there is an increase prevalence of ALS in the county. Dr. J.P. Lofgren, the medical epidemiologist performing the review, said it would be comforting if the evidence showed Tuscaloosa did not have a high rate of ALS. “If it happens that Tuscaloosa doesn’t look unusually high, that takes some of the worry out [of the community]," he said, adding that the investigation will include about 900 records. About 90 Alabamians die each year from ALS. Among those who will be following the study is Dr. Eugene Marsh, a neurologist and dean of the University of Alabama’s College of Community Health Sciences. He also is a member of First Presbyterian Church, where the six local cases occurred. “I was seeing more people than I felt like I should, both in the community and especially at our church," Marsh said in May. “It wasn’t scientific, just observational." Marsh asked the state to look into the matter. He has also tried to get the attention of the U.S. Centers for Disease Control and Prevention in Atlanta, but said he was told to start with the state government. Though some research has suggested there are genetic and environmental factors that possibly contribute to ALS, the disease’s cause is unknown. Interpretation Using death certificates in the investigation is not fool-proof. There are a number of factors that could yield results that might appear falsely troubling or optimistic. For one, Lofgren is reviewing deaths and not the current living population. That’s because searching death certificates is quicker, easier and less expensive than tracking down living ALS patients. But he said his review should be fairly accurate because the rate of death will approximate the rate at which people are contracting ALS. But there are also problems with relying on death certificates to reveal the answers. ALS is not a condition indicated on death certificates. That’s why Lofgren is reviewing all deaths caused or related to motor neuron diseases. ALS cases constitute 85 percent of motor neuron diseases, he said. “It’s not the primary cause of death," said Sharon Matland, with the national ALS Association, based in California. “It’s not always listed as a contributing factor, so it can be a problem in identifying ALS deaths." Typically, most people with ALS die from infections or respiratory failure. But, Lofgren said, those who maintain death certificates are trained to look for the underlying cause. “So the cause of death may be listed as respiratory failure caused by pneumonia caused by ALS," Lofgren said. Conclusions Even if Lofgren’s review shows an increased rate of motor neuron disease exists in Tuscaloosa, he said there may not be a reason to be concerned. “What is likely to happen, or what often happens when people say they’ve observed things like this, is they are often right," he said. “The rate may be higher, but that doesn’t mean that there is something special going on or something that is causing it. “I always compare it to rolling dice. Sometimes you throw four sixes in a row. And the dice is perfectly normal, you just happened to throw four sixes in a row." Reach Sarah Bruyn Jones at firstname.lastname@example.org or 205-722-0209.
Thursday, August 9, 2007 - The Good Hands People Make A Good Point
During a flight last week, ALScounts read a magazine. The back cover was chilling, especially to someone crammed on a regional jet. It was an Allstate ad.
"If 12 fully loaded jumbo jets crashed every year, something would be done about it. Every year nearly 6,000 teens die in car crashes."
They make an important point that got my attention.
The same premise applies to ALS, too.
.................................................................................. How can we connect the dots if we're not even collecting the dots? ..................................................................................