Saturday, January 1, 2011

Enough! Basta! Assez!

"Those who cannot remember the past are condemned to repeat it." -- George Santayana
"You've got to change your evil ways, baby." -- Santana

Think about the course of ALS -- a person often goes from healthy and vibrant through a nightmare of a decline to the grave within a very short period of time. This cycle constantly recruits new people. Its a kind of terrible revolving door. New patients and new families need crash course about the disease and dealing with it. New families mourn and grieve untimely deaths. Over and over and over, ALS organizations deal with the people entering the door and see them through the exit.

Sleepy lived the ALS nightmare, losing a relative to the disease 14 years ago.

If you took a snapshot of the outlook, the therapies, the "promising" science, the organizational fragmentation, the lack of awareness, and the theories in 1997 and put it next to a corresponding snapshot today, you would see very little difference. The wheelchairs are better now, but that's about it. The cause of ALS is still a mystery. The downhill course continues to be a difficult one for patients and families. There is still "promising" science (always with air quotes around that "promising" word). Organizations still compete rather than find ways to raise the tides of resources for all. The general public still does not have ALS on its radar.

We do the same things over and over. The patients change. The families burn out. The staff names at the organizations change. Tactics and approaches are horribly static. We've fallen into a rut of Groundhog Day with stakes far higher than weather forecasting. We have not delivered meaningful change.

It's time for a new war on ALS. The same old same old has failed. We need to shake some thunder into the movement. Organizations need to focus on ALS as the enemy (and not each other). It's time that the world learned about this monster of a disease, and it's time for everyone on earth to know to fear a disease that can strike anyone. It's time to pull together for added resources and new strategies.

The revolving door has caused a kind of institutional amnesia where we repeat the tactics of the past over and over.

We all have failed. Enough is enough.


Anonymous said...

The word "quagmire" comes to mind when describing this war on ALS.

Anonymous said...

The lack of people with long memories of the fight against ALS also enables organizations to avoid fessing up to the disappointments and failures that have occurred in the past.

Instead they brag on very limited successes (and ignore the disappointments) in order to stake their claims to a share of donor resources.

They don't have to face history honestly and in fact, to do so would be at odds with their existing competitive development mentalities.

Anonymous said...

My husband has had ALS for over 18 years and we are so ready for a cure. Living with ALS is rough. My husband is now on a ventilator and can only move his eyes, eyebrows, mouth, and one leg. PLEASE continue to raise awareness we need a cure. Everyone with ALS needs this cure, even their caretakers and loved ones. God bless.

Anonymous said...

How I agree with this blog. Please see my blog on which I have posted a poem relating just these thoughts. We are the forgotten many. Why is so little known about a disease whereby 5 people a day die?


ALS Grumpy said...

Sleepy, You hit the nail on the head not once but you pounded through it plumb through the board.

I have only been around the ALS community for six years of "promises." Thank God for the ALS chapters because they are so close to us they keep our needs to the forefront. If they had the resources in terms of revenue they could do so much more. But it is so important to keep the patients in the center of all programs and policies. To do this there is a continuing dialog with patients, caregivers, families, clinics, local DME providers, run equipment loan closets and the all important support groups. To their credit I find them willing collaborators and cooperators with other groups and organizations having an interest in ALS, at least I have found it so with our chapter.

Unfortunately our national and large regional organizations practice top down communication and there is precious little dialog or contact with the ALS community. One might conclude that they value competition, duplication and insularity more than their stated missions. In 6 years little has changed with this competitive philosophy and, God forbid,dialog with the patients, caregivers, or the healthcare workers who are woefully ignorant about the disease. Maybe it's not the difficulty that preserves this aloofness but lack of willingness to place patients before pride.

Do I expect that this will change in my ALS truncated life? Not very likely because we haven't even advanced to "promises" in such monumental improvements to the ALS community.

I should give recognition to the one major ALS organization that was founded by an ALS scientist with ALS and whose chairman of the board is a notable ALS patient. Of course I speak of ALS Therapy Development Institute, its founder, Sean Scott, who lost his battle with ALS, and Augie Nieto. We need more of the inclusiveness they seem to have successfully moved beyond "promises.>

I almost forgot one of the most innovative advances in developing and operating a patient, caregiver and healthcare team driven database. It was an ALS patient's family that conceived and operates Patients Like Me. Its success and continued improvements have allowed it to be applied as successfully to other disease communities. It was the national registry well before the multi-million dollar behemoth run by the Center for Disease Control that seems so bloated that it cannot produce time lines or status reports.

This blog is by far the most relevant, well written and incisively tuned to the issues of which I am aware.


Sleepy said...

More Groundhog Day advocacy...