CHARLOTTE, NC: Remember “Simon Says” the game we used to play as children where you were required to follow instructions by saying “Simon Says, May I” or you would be eliminated. ALS has a version of that game where “May I” is the only requirement since the month of May is “ALS Awareness Month.”
Using the alphabet as a guide, the “ABCs of ALS” say “Awareness Breeds Compassion.” As physician Dean Ornish says, “Awareness is the first step in healing.”
As the great Greek philosopher Aristotle once said:
“The ultimate value of life depends upon awareness and the power of contemplation rather than upon mere survival.”— Aristotle
That being the case, here are some little known facts about ALS for the uninitiated:
- ALS always kills. It’s never a matter of if, only when
- Nearly half of all people with ALS die within three years of diagnosis
- ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries and can affect anyone without warning — even you
- If the patient has a direct or peripheral military association, know that former military personnel are twice as likely to be stricken with the disease
- The annual incremental cost to live with ALS is over $63,000 and that’s without an effective treatment
- Just one in 1,000 investigated drug compounds enter the U.S. Food and Drug Administration (FDA) approval process
As research continues, new drugs are constantly being tested for the treatment of ALS, but positive results have been slow.
For example, one recent success has been Radicava, but the drawbacks make the return on the effort of treatment barely worth the effort. Currently, Radicava requires ten days of infusions each month following an initial set of 14 such treatments. The infusions have no end. They must be done every month for the rest of the patient’s life, which means they completely disrupt a victim’s quality of life for one-third of each month.
Thankfully, grants are available to qualifying patients to defray the high cost of Radicava treatments which can run as high as $14,000 a month without supplemental funds.
For most people, that’s a solution without a solution
Fortunately, an oral version of the drug will soon be on the market at a greatly reduced cost, but the delay from research to availability is always a matter of concern.
Time for FDA approval can be up to eight-years
It took about two and a half years for a new drug to go from development to final approval by the U.S. Food and Drug Administration (FDA) during the 1960s. By the ’80s, that process ground to a very slow eight years.
Horrible as the AIDS epidemic was in the ’80s, it did draw attention to this slowdown and spawned the Right to Try initiative. However, even that process moved at a snail’s pace. Finally, just a year ago, on May 30, 2018, the Right to Try Act was signed into law.
According to the FDA:
“This law is another way for patients who have been diagnosed with life-threatening diseases or conditions who have tried all approved treatment options and who are unable to participate in a clinical trial to access certain unapproved treatments.”
One important, but little known, source of awareness is the National Amyotrophic Lateral Sclerosis (ALS) Registry whose goal is to identify the causes and risk factors of ALS, assist in the development of treatments and eventually discover a cure.
Paul Mehta, MD, principal investigator of the ALS Registry, says:
“The registry has already collected demographics for 80-85 percent of ALS cases in the U.S. It funds and publishes research and helps to link up interested ALS patients with clinical trials that are seeking participants.”
Travel and quality of life for ALS patients
As part of the awareness process, quality of life for ALS patients is a key factor. For me, and many others, travel is a significant aspect of maintaining the freedom and independence that was once so much a part of their lives.
For travelers seeking assistance, here are some Common sense tips when it comes to checking into hotels that may ease the process. Adapting this type of thought to any situation can help you be more aware:
- Calling ahead to arrange for an accessible motel or hotel room is imperative. Be sure to call back several times to reconfirm the details.
- If you find your room is not accessible — and pushing back the furniture doesn’t help — ask for an upgrade to a larger room such as a suite. At least you will have adequate space to move around and for your supplies and equipment.
- If you’re unsure about a certain hotel, try calling the ALS Association chapter for that state. They can recommend a hotel that is “ALS-friendly.”
It is possible to learn to live well while living with ALS, but, like everything else associated with the disease, it just takes a bit more effort.
In that sense, “Simon says, ‘ALS awareness is as simple as the ‘ABCs.'”
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor is an award-winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is the founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up