The last couple of days, two of my readers have shared their frustrations with the slow pace of myeloma research.
I believe the “cure” for multiple myeloma is already sitting on a researcher’s desk–or on the hard drive in their laptop.
But as Thomas from Germany explained:
“For example, I got in contact with a doc from a cancer research centre. They made findings about myeloma resistance:
Great findings. But do you think they’re brought to the bedside? No. The results are just there but nobody uses them. That’s enough for scientists. That’s printed paper. And why pressing this into useful medication?”
Thomas, I think you are half right. It isn’t that all scientists care about is finishing their studies and getting them published. It’s that the right hand doesn’t know what the left hand is doing.
Earlier today I wrote an article, New Cancer Commons.org Website Hopes To Coordinate Info Between Oncologists, Researchers & Patients, and posted it on my other daily site, Help With Cancer.org.
This new Website, http://www.cancercommons.org/, has an ambitious goal:
Modern molecular biology supports the hypothesis that cancer is actually hundreds or thousands of rare diseases, and that every patient’s tumor is unique. Although there is a rapidly growing arsenal of targeted cancer therapies that can be highly effective in specific subpopulations, the pharmaceutical industry continues to rely on large-scale randomized clinical trials that test drugs in heterogeneous populations. Such trials have an unacceptably high failure rate, approaching 70% because they don’t account for individual treatment responses. On the other hand, an estimated 70% of all cancer drugs are used off-label in cocktails based on each individual physician’s experience, as if the nation’s 30,000 oncologists are engaged in a gigantic uncontrolled and unobserved experiment, involving hundreds of thousands of patients suffering from an undetermined number of diseases. What if these informal experiments could be coordinated into a giant adaptive search for better, individualized treatments?
Great idea! But what if we combined the two? What if we did as Cancer Commons suggests and link the independent off-label results of all of these patients, PLUS use Thomas’ suggestion and enlist the IMF or some other independent watch-dog organization to sort through all of the obscure, theoretical research studies and then champion the most likely to succeed?
Who (or is it whom) might that be? Well, The IMF and MMRF are already trying to do just that. But they don’t work together. How can we (myeloma patients, caregivers, hard working clinicians and medical professionals dedicated to curing multiple myeloma) hope to make any progress if the two largest multiple myeloma related bodies don’t share information with each other?
And the same can be said for independent cancer centers like UAMS, M.D. Anderson and the Mayo Clinic. Politics and human nature won’t make this easy! But as computer technology improves, so do the chances someone out there will link two or more of these theoretical studies and combine them into a single, life saving blockbuster of an idea!
Let’s save discussions about proprietary information and drug company patents–and the influence of big pharma–on the process. I’m not sure even they can stop the avalanche of information streaming every-which-way across the world wide web.
That’s enough for now… I’m getting a headache! But if defining goals and then identifying obstacles standing in the way of our achieving those goals is half the battle, then I think “we” are already on our way!
Feel good and keep smiling! Pat