From my notes with Mickey Mouse

I spent the early part of June in lovely Orlando, FL, at the annual meeting of the American Society of Clinical Oncology (ASCO). This is an enormous conference or 30,000 cancer docs and other healthcare providers, advocates, and pharmaceutical industry people from all over the planet. This was my fifth time attending this meeting, and it always seems to take a few weeks to recover.

This year I had the opportunity to be part of a program for advocates, giving us tools and information to be better able to understand the content of scientific sessions and ultimately communicate this information to the communities we represent. Among the sessions was one called, "The Economics of Cancer care: It's Everyone's Problem." Among the key messages of the session were that we spend a lot of money delivering health care that doesn't really improve the health of the population. Why? The primary reason is that our system is set up to pay physicians and other providers NOT to ensure better health for their patients, not to spend time listening to patients concerns, but to deliver treatments.

In childhood cancer, any survivor or family member will tell you that the doctors, nurses, and other professionals that are part of the care team, spend lots of time with the patient. A lot of this time isn't paid for by insurance companies, so hospitals have to provide it at a loss. They see the value in time, in listening, in the value of the patient and family voice. I don't have the data, but I'd make the anecdotal observation that outcomes for kids with cancer are better because of the time spent with the patient, not just the treatments they receive.

I am frequently told that pediatric oncology is viewed as a model for the delivery of cancer care - 70%+ participation of patients in clinical trials, a multi-disciplinary team approach to delivering care, and ultimately great success in improving survival rates for many childhood cancers, DESPITE the fact that there is almost no pharmaceutical company interest in R&D for childhood cancers.

So all this good work in pediatric is happening on the cheap. Think of what we could achieve in improving healthcare and reducing costs if we could fix the payment incentives for all healthcare providers! Let's hope our President and Congress consider the model for childhood cancer as they assemble health reform plans.

CCCA Lobby Day 2009

Join these childhood cancer survivors in advocating for HR2109, the Childhood Cancer Survivorship Research and Quality of Life Act of 2009. Visit our Grassroots Action Center to write to your Congressman today!