May 29, 2003
By Douglas Abel, Caregiver
douglasabel@earthlink.net
I would like everyone to close his or her eyes and concentrate on what I have written here, after you are done reading, of course. Try to imagine yourself in this situation, and think how you might deal with your death.
Now picture a healthy, vibrant, active woman, a teacher who truly loves her children. Who has taught for 34 years and prides herself in the fact that her students come back to visit her long after they have left those rooms, with their own children. To meet a person who positively influenced their lives. This teacher goes to UCLA Westwood Medical and SCRIPPS Research Institute in San Diego, where she is told by two of the leading doctors in their field that she has ALS. Amyotrophic Lateral Sclerosis, better known as Motor Neuron Disease or Lou Gehrig's Disease. ALS is considered an orphan disease, that is there are less than 200,000 people at any one time affected by the disease. Now here is where I want you to start using your imaging abilities. ALS is a neurological disease. It kills motor neurons, and muscles are not given the signal to move and behave as they normally would. Put bluntly, the person literally wastes away. Loss of muscle tone, the inability to use an extremity, loss of speech or the ability to swallow are the first stages of the disease, depending on whether you have bulbar or limb onset. That folks is the good news. The bad news is that this disease, without exception is always fatal and untreatable. You may know Stephen Hawkings, scientist and writer. He has had ALS for over twenty years. What keeps him alive is a ventilator, feeding tube and many personal assistants. That is good, he can afford them.
Most people hear the same thing from their neurologists before they make that dreadful and quiet ride home. " You've probably got two to three years to live". Sorry everyone I do not accept that fact, not with the resources that are available to us in this country. It may begin with weakness in one arm or leg, maybe some slurred speech. It then begins its inevitable march. The ability to walk, the ability to use your hands, the ability to swallow. Eventually you will be confined to a wheelchair and from there to a hospital bed. You will lose your ability to be independent. Someone will have to bathe you and wipe you when you go to the bathroom. You eventually lose the use of your diaphragm. This is decision time. Do you want to go on a ventilator or pass naturally, sometimes, not always by choking to death. Now for the really good part. Your mind is NOT affected for one moment as you watch your body break down around you. You are completely aware of what is happening to you and totally unable to do anything about it. I imagine it must be something similar to being buried alive.
So, why bring this up? Currently science is making incredible discoveries at paces we have never before seen. In many diseases we have seen effective treatments that slow other diseases, if not outright cures. So why is so little being done about ALS ? Simple answer. Money. A drug company is not going to invest hundreds of millions of dollars finding a treatment that could slow the progression of ALS or even a cure. I can understand why.
It does not make any sense financially. No return on their investment, no bang for the buck. If you are going to spend a fortune developing a drug, it had better be a drug that is needed by hundreds of thousands of people. That is not the case with ALS. There are approximately 5000 new cases diagnosed each year. They are all told the same things. Try some Rilutek, which is the only FDA approved drug for ALS, and take some supplements, "We are working on some promising new treatments but they are still in the experimental stage".
This is what I want to talk about. Drugs and therapies for ALS patients, or PALS as they call themselves. The National Institute of Health recently published its 2003 budget, funds given to them from the federal government and approved by Congress. This year NIH has received 27,335,000,000.00. That is TWENTY SEVEN BILLION DOLLARS. Do you know how much of that is spent on ALS research? Thirty Two million, three hundred thousand dollars. It is not my intent to minimize any other work the NIH funds. They are all worthy projects for serious diseases and conditions. I would like to point out a few inconsistencies however. Obesity has a budget of 274,000,000.00. There are existing treatments for obesity and in most cases, we know what causes it. Not so with ALS. Asthma received 255,000,000.00. Asthma can be a deadly and debilitating disease. However we have treatments for it and can keep it under control in most situations. Herpes received 208,000,000.00. A social disease that you will not die from. Not so with ALS. Alzheimer's is a truly horrible condition affecting untold numbers of our seniors. Alzheimer's received 644,000,000.00. Schizophrenia received 338,000,000.00. Another disturbing and life altering condition, to the best of my knowledge you do not die from it. Not so with ALS.
What I am asking for and looking for is some parity. We are treating diseases, which absolutely need to be addressed. However, in many of these cases we either know what causes the disease but do not have a cure, or we also have some very effective treatments. Not so with ALS. Most ALS research is funded privately through the National ALS Association or the MDA-ALS division. There are also smaller private groups that try to contribute. The last and only drug developed for ALS is Rilutek, which only slows the disease for several months. That was over six years ago.
I am asking folks to contact their Congressman, for local television to give this exposure. Unfortunately, if you are not a celebrity you usually do not get your cause noticed without endless hours of telephone calls and hard work. We need the federal government to step up its funding of ALS research. It is estimated that it will take 500,000,000.00 a year for four years to find a way to beat this incredibly horrible disease. If local newspapers could get in touch with their local ALS chapters to see who in their area are affected and bring some of their stories to light it would help to bring the awareness of this little spoken of disease to the public's eye. I would like to see more done on a local and federal level and am willing to volunteer as much time as is needed. The average cost per year of caring for someone with ALS is 200,000.00. Therefore, this disease is not only emotionally devastating but also financially. The federal government passed some long overdue legislation two years ago that allows someone with a fatal illness such as ALS to apply for Medicare as soon as they are unable to work. It takes six months to get your Disability benefits but they have eliminated the two-year waiting period for Medicare. It is a small step but still a positive step.
I firmly believe with the scientific minds that are working around the world on this progress could be made in halting the progression of the disease, hoping for a cure might be too much. But if everyone who has ALS could get another eighteen months, who knows what kind of new progress would be made in that time. Maybe they would discover something that would prolong their lives, at a quality that is bearable for another eighteen months, and so on, and so on. It takes money, exposure and hope, Hope is one thing all PALS have. Money and exposure are the things that can conquer this killer.
Back to the teacher. She is my wife of twenty-one years. If I could take this disease from her, I would. She knows God has a plan for her, she just has not figured out what it is yet. However, she will, she is also a good student. This disease was discovered over 130 years ago. And here we still stand in the Stone Age of treatment for it. Reach out, contact your legislators, call your local ALS chapter and ask if you can volunteer. Most of time the spouse is the sole caregiver, which can lead to serious health problems for the caregiver. In these uncertain times, give, you will receive it back many times over.
Thank you.