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Camilla, I agree that cost of our meds is a part of cost to society......but be very careful in expressing this expense. Having been exposed to the wonderful world of transplants this summer....I learned that the cost of MEDICATION ONLY for two months following liver transplant were $70,000 for 22 pound child!!!!!! Cost per month will be about $1800 for many many years.....and his treatment is considered a cure!!!!!!! What is the cost for someone on dialysis??? What is the cost for other transplants where it might be a cure? What is cost for maintaining other diseases? We may find that our costs are more in the mainstream.... of other diseases...and some of those involving children do involved loss of income for the parents (caregivers). We can't say which is the worst scenario.....but we don't want to find that we are coming in lowball in comparison with other advocacy groups. Rita