Lou Gehrig meet Elton John

Can the great Elton John teach us a lesson?

If you happened to miss the interview with music mogul, Elton John, this morning on CBS News Sunday Morning you missed an inspiring story. John, know for his long career as a named singer and musician, was also know for his outrageous clothing, glasses and his being very gay.

His life took a major change when he met a young American boy who had AIDS. HIV/AIDS was something that John found ubiquitous in his high living gay days, but never really something that he took to heart until his friendship with Ryan White. When Ryan died from complication of AIDS, Elton made this painful event a precipitant to make a huge change in life as he went into rehab, got sober, and got serious.

As John puts it, “I wanted redemption for the fact that during the '80s, as a gay man, I didn't do enough for HIV and AIDS." And when Elton John says "we have to help," people listen. Today his foundation, now based in New York and London, is considered among the most successful AIDS charities in the world.

"We're over $150 million in given-away grants and heading towards $200 million very quickly," John said.

Amazingly, he runs his foundation with a surprisingly small overhead, of only two in the US and 12 in the UK including volunteers. He says, “That way, you know where the money's going."

What catches my eye as a person living with Lou Gehrig’s disease is the power of celebrity in bringing awareness, funds and directed action to a serious terminal health problem. More so was the recognition that maximizing the funds going to patient care and research is done by minimizing overhead by which to best use the substantial amounts raised.

It seems that the ALS community could take a good lesson from the success that Elton John has brought and continues to bring to the HIV/AIDS community both in terms of the power of celebrity and the responsibility of small overhead.

If ever there was a crying need it is the careful and objective assessment of the structure that has evolved to provide resources for people living with ALS. Can the multiplicity of national organizations with each having paid staff possibly make the maximum use of the funds needed to research, awareness, education and patient care? One cannot truly discern the amount of money now being diverted from direct patient related affairs by competing and parallel overhead organizations.

When one looks as the annual reports of the two major national ALS organizations it is not apparent or transparent on what the true costs of strictly overhead functions. Most rely on generic statements like, “over 86% of each dollar goes to patient services and research.” What is never asked and it is hard to discern is how much more could be directed to patient services if there was some major consolidation of the management of these organizations.

As one whose years where asking such a question are limited, I am sure that I reflect the curiosity of many in the ALS community.

How do we get this careful and objective analysis, and how do we do a better job of accessing and allocating resources to support the people with ALS and their caregivers? I suppose if enough demand the analysis and consolidation, it may happen, but unfortunately we may not be around to see it or the holy grail of a “cure.”

It has to start sometime and that time is now. It has to start with you and you and you.