Activist Disease Foundations, Rationing, and Medical Ethics

Yesterday's New York Times had a moving article about the Parkinson's Disease foundations formed by actor Michael J. Fox and former Intel CEO Andrew Grove, both of whom have Parkinson's.

The Times focuses on the activist approach the two foundations are taking. Fox and Grove run their foundations like entrepreneurial businesses. They don't give grants and sit back to see what truths emerge. Here's the Fox Foundation mission statement:

"The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson's disease within the decade through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson's today."

The source of the passion behind the two foundations is obvious. Finding a cure for a bad disease is a worthy cause. Finding a cure for a bad disease we or someone we love is afflicted by is a consuming passion.

Here's what concerns me. We don't currently have the courage to set limits on what we spend on health care in the U.S. Perpetual cost increases 2-3 times the rate of inflation are - at a population level - as deadly as cancer. Businesses fail because of health care costs. Education and other life-advancing sectors are deprived. Individuals lose big chunks of potential income.

But no individual suffers from this economic cancer the way Michael Fox and Andrew Grove suffer from Parkinson's. As Howard Hiatt warned in 1975 in "Protecting the Medical Commons: Who is Responsible?" the realistic answer is - everyone and no one. Protecting the common good does not have the fire power of finding cures for diseases we have been touched by.

Foundations like the ones Fox and Grove have endowed are all to the good. But like medical treatments, they have unintended side effects as well. As long as we have a health system in which insurers simply pass on the increased charges from hospitals and clinicians to employers and government, the economic cancer will grow.

The various ideas bandied about for curing the economic cancer - disease management programs, better use of IT, reducing administrative costs, and many more - are good ideas, but they are palliative, not curative. We wont get a grip on the population disease caused by the economic cancer until we establish true budgets for health care. When we do that we, as a society, will learn how to deal with limits the way the Michael Fox and Andrew Grove have learned how to deal with the limits imposed by Parkinson's disease.