ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Sunday, December 18, 2011

Wish We Used Stats To Scare Up Support

In yesterday's Wall Street Journal, The Numbers Guy, Carl Bialik, has another interesting column. This time he writes of health not-for-profits who find ways to present scary statistics to state their cases for support.



Article (subscriber content)






Here is a comment posted below the article --



Unfortunately disease prevalence has traditionally been used to establish relative priorities for much research funding, and prevalence simply doesn't tell the story for some diseases. I've been involved in the fight against ALS (Lou Gehrig's Disease) for a number of years. It has a relatively low prevalence and a high incidence, and therein lies the problem. It's like a cruel game of musical chairs where we keep pouring people into the room and when the music stops, there are very few chairs. The only exit is a door labeled "death." Many of our ALS organizations are resigned to the fact that disease prevalence has been the gold standard for government and private research funding priorities. That attitude will never bring ALS the attention it needs to be handled as an urgent, fatal, and mysterious disease with a horrific throughput. I wish the ALS cause had some of those numbers people who can express the odds in a way that would make every healthy person squirm!

Saturday, December 17, 2011

Here Are Some Realistic Goals

Occasionally ALSadvocacy is chided by some people who work for ALS organizations. Some ideas such as inter-organizational coordination, awareness programs with global punch, a case study of the cost of the disease, educational programs at many levels, normalized reporting on annual investments in research, or a new standard for measuring a disease's impact are perceived as not being realistic.

Perhaps we can agree on a few goals for 2012 that are completely "realistic" from any perspective. Here are two.

Insure that every newly diagnosed ALS patient in the United States
1. Is immediately advised of the importance of self-enrolling in the CDC's national ALS Registry.
2. Is immediately advised of all clinical trial options available.

Those are simple. They are deliverable. They are measurable. They are important. They are not happening today. If they're not "realistic" then perhaps our organizations should find an easier disease to fight.

Thursday, December 15, 2011

Remember The Over 5,000 American Lives Lost to ALS in 2011

Thanks to ALSA Philadelphia Chapter for pointing this opportunity out to remember loved ones and to raise some huge ALS awareness in The New York Times --

http://submit.nytimes.com/lives-they-lived

Please spread the word to all who have lost loved ones to ALS in the last year. The holidays are rough, and this is a good way to remember and teach others about the toll that this beast of a disease takes.

Wednesday, December 14, 2011

Who Represents Patients In This Puzzle?

Here is an interesting perspective on clinical trials --

http://bioworld.blogs.bioworld.com/2011/12/13/it%E2%80%99s-about-the-patient/

ALS certainly poses a completely different set of challenges for the drug companies trying to move a therapy forward, yet the question about remembering the patient has a special sting with ALS.

Thursday, December 8, 2011

Wow!

Nothing Is Easy With ALS

And sometimes the obstacles are just wrong.

http://www.alsa.org/news/archive/fda-approves-neurx-diaphragm.html

There has been an interesting saga described on the forum at patientslikeme.

A man with ALS recently made arrangements to go hundreds of miles to Cleveland to have the DPS described in the article at the above link "installed."

At the 11th hour in Cleveland his insurance carrier denied this treatment. He packed up his things and went back home.

Note that this man has ALS and travel is difficult and the breathing that he is trying to preserve with the DPS diminishes every day in the relentless ALS downhill slide.

Now he has finally found out what the difficulty was with the insurance coverage. The insurance company was not aware of the FDA approval of the DPS for ALS. The insurance company hasn't learned how to Google? Everything is fine now and he can go back to Cleveland for the procedure.

No, everything isn't fine now. The patient was jerked around by a healthcare delivery system that included an insurance company that made a big mistake at his expense. Precious time was lost. Precious resources were spent by the patient because an insurance company made a big mistake.

Nothing is easy with ALS, and we have a healthcare delivery system that continues to show its weaknesses at the expense of people trying to deal with this disease. Just as they introduced stress tests for banks during the banking crisis, perhaps ALS could be the stress test for healthcare delivery. Few organizations would pass.

Wednesday, December 7, 2011

And Walks Are More Than Fundraisers

They are reasons to talk about ALS in communities and in the media. They are a means to generate the awareness that will finally impress the urgency of the problem upon the healthy. They are a way to put ALS in the spotlight it needs so that we can break out of our rut of still having no known cause and no cure.

Saturday, December 3, 2011

Are We Literally Protecting People With ALS To Death?

Here is an important perspective from a man with ALS. It was posted on the ALS TDI forum where patients with scientific backgrounds are collaborating and experimenting and sharing data.
I have a slightly different perspective than most coming from the radiation oncology field. The things we put our patients through would seem downright medieval to most. We expose people to enormous amounts of radiation that often makes them so sick they almost die form it. We have perfected the dose to bring them to the edge of death but not beyond. We all know what chemotherapy patients go through. They lose all the cells in their stomach and can barely eat for weeks. Again, we bring these people to the brink of death because that is what it takes to kill the cancer cells.

People with ALS are in no less dire straits than people with cancer. Getting sick from a potentially life saving cure should not deter us from trying. No doubt there is a risk with this sort of thing, perhaps even death, so only those willing to risk it all should attempt it, but we risk it all by doing nothing.

Thursday, December 1, 2011

Now THIS Is Awareness


Since the top leadership from ALS and MND organizations worldwide are in Sydney at this very moment for their annual summit, perhaps they'll get some ideas about how to raise awareness. It is important. The AIDS cause knows that. When will the ALS cause figure it out?

If any of the ALS delegates or researchers went to see Bono light up Sydney, lets hope that they went to be inspired and not simply entertained.