Thursday, October 20, 2011

It's A Project, For Pete's Sake!

Yesterday we saw many congratulatory messages on the first birthday of the launch of the CDC's ATSDR National ALS Registry. As Sleepy watched the electronic high fives and pats on the back, Sleepy also wondered in what other sector do you party one-year post-launch simply because it's one-year post-launch?

Launch+365 is normally a time for some hard looks at project milestones and accountability. It's one of the many spots on the project timelines to evaluate the project status with an eye toward continuous improvement. What is working? What isn't working? What adjustments are in order?

Yesterday stakeholders celebrated. There's no reason to break our arms patting ourselves on the back yet. So far there have been no deliverables of epidemiological data from the project. There is an apparent low patient uptake on the supplemental surveys. Sleepy hopes that while the celebratory messages were strewn yesterday that somebody was working on the project milestones and adjustments to get the right deliverables to the scientists who can use the information.

Perhaps it's the nature of government work to need to sing for next year's supper. Sleepy would rather it had been a song about project milestones and adjustments rather than "Happy Birthday."

Wednesday, October 12, 2011

Be Careful

Those were my words to a man with ALS as we parted, having discussed some patients' do-it-yourself trial of an experimental treatment. The look on his face made me add, "I realize that the 'careful' bar is a lot lower when you have ALS."

Bright patients have researched and with neither multi-million-dollar budgets nor a cadre of scientists and clinicians, they have decided to roll some dice. They know that the risks are there, but the risk of not doing anything is clear, too.

We watch and we pray that they do no harm and perhaps will find something that will help... or at least will provide some clues for scientists and other patients.

The speed of research and clinical trials and approvals and healthcare delivery can't come close to the speed of ALS. We must fix that!

Tuesday, October 4, 2011

ALS and Drug Shortages

With serious drug shortages in the news, we have a new tagline --

ALS has the ultimate drug shortage. There are none.