BY GARY PETERSEN This a subject I have thought of writing about for a very long time. When we lost Pat Killingsworth recently it brought it back front and center for me. Pat has had a 9 year battle with a rare presentation of multiple myeloma. In the end he died from a brain aneurysm, aggravated by a rare form of blood disorder called TTP, and TTP was most likely caused by the chemotherapy from his myeloma fight. He was admitted into the hospital with kidney failure. So what was on his death certificate? Kidney failure, brain aneurysm, TTP, or complications from chemotherapy, or complications from multiple myeloma? Well, it was listed as a brain aneurysm. I am fairly certain Pat would say he died from complications due to myeloma. This would be important to him because funding for the NCI (National Cancer Institute) uses lives lost in there allocation of funds. So if Pat, a myeloma patient and fervent myeloma advocate, can not be considered part of the myeloma death statistics then who can. Let's take a look at the math. The National Cancer Institute reported the following:
This would suggest the cure rate would be (26,850-11240)/26,850 = 58%, however the long term survival of myeloma patients is only 10 to 15%. It can therefore be deducted myeloma deaths are under-reported by over 43%. Because the most likely causes of death for myeloma patients is pneumonia, kidney failure, infection, and bleedouts, these could easily be on the death certificates of many myeloma patients. So if cure was 15%, then the number of deaths would be closer to 22,822. Why is this important for the myeloma patient community? The NIH (National Institute of Health) and NCI (National Cancer Institute) use deaths, and lost years of life by cancer type to rationalize the research spending for the NCI research projects. The more deaths and lost years of life the more spending for that form of cancer. A study by the NIH tries to rationalize spending to the number of lives lost and years of life lost by cancer and you can read it if you CLICK HERE. A summary slide is shown below.
about the author
Gary is a myeloma survivor and patient advocate. His work centers around helping patients live longer by helping them to find facilities who are beating the average survival statistics. You can find Gary's site at www.myelomasurvival.com and follow him on Twitter at @grpetersen1