ALS Gives One An Interesting Perspective On Healthcare Delivery

People with ALS and their caregivers have special insights into healthcare delivery and could add a valuable voice to the heathcare conversation that started at the White House yesterday.

The big White House powwow included key members of the Senate and Congress, representatives of associations of insurance companies, pharmaceutical companies, physicians, other healthcare professionals, independent citizens, etc. Many organizations representing consumers were there as were small business organizations and labor unions.

The focus was on healthcare reform, including cost reduction and increasing access to quality care. All of the stakeholders had a chance to be heard.

Once you've had the ALS experience, the inefficiencies in American healthcare delivery scream at you. The waste is sickening. The system doesn't deliver at the same pace that this very aggressive disease races through one's remaining years, and the system isn't exactly nimble enough to adapt to the need. It likes to do what it does.

Perhaps President Obama and our Senators and Congresspeople would benefit from some first-hand testimony on how healthcare delivery does not deliver. It's hard to build a truly better mousetrap if you don't confront the problems and their causes in the old mousetrap.

From the perspective of a caregiver to one with ALS, healthcare delivery today is much like package shipping was fifty years ago. You mailed the Easter package to be sent to your grandmother a few hundred miles away at the beginning of Lent, or it wouldn't make it by Easter. You had to wrap it with special paper and twine or it would be rejected. You had to buy insurance because there were pretty good odds that it would not show up in Cleveland or it would be damaged if it did get there. Today with improved logistics, better information systems, and effective competition, we have a choice of economical and effective ways to send a package to Cleveland. That is true progress.

PALS and CALS voices would be valuable for this discussion. We're not asking for the cure this time. We're simply willing to add some insight into out some areas where the system is failing expensively.