I was quite honored to be asked to participate in their interview series, and impressed with the quality of questions she presented. There were three questions that I felt were exceptional and required some quite reflection. I would like to repeat them here with my responses.
Priya: What according to you is the most interesting development in the field of multiple myeloma research that you feel is a step in the right direction?
Gary: There are a couple of developments, the first of which is the great clinical trials that have been completed. They have provided myeloma specialists with tools that are far more effective. New drugs are great, but what impresses me the most are the current developments of how to best use the existing drugs in combination for induction, transplant, and maintenance. VRd or the combination of Velcade, Revlimid, and dexamethasone as induction therapy with a 100% response rate is a prime example. If you look at these trials, they are the first line in the development of performance measures for treatment comparisons. The work of groups like the MMRC, IMF, and various international oncology groups are so important in providing the funding and resources to conduct these trials. The MMRC alone collected over $160 million dollars to fund this research, and as I know from business, “you will get the results you want if you provide a financial incentive.” And research funding grants are a great incentive to the research scientists!
The second and maybe most important development is related to the fact that multiple myeloma is curable. Studies are now available that indicate that this previously incurable disease has now shown evidence of curability in 10 to 15% of patients. They are living 10 to 15 years with no evidence of disease progression. Dr. Parameswaran Hari in his Cure Panel broadcast (available on the CureTalk website) indicated, he believes that within the next decade, 40% of patients will be cured. However, what is great about this for newly diagnosed patients is that in order to have 40% of patients to be cured in 10 years, they have to currently be in treatment. How cool is that!!!
Priya: Your site, myelomasurvial.com talks about survival statistics of various institutions dealing with myeloma treatment. What was your inspiration to start a site like this, rather than just a chronicle of your myeloma story?
Gary: Early on in my research of multiple myeloma treatment, I would do a Google search like “multiple myeloma survival rates,” and I would change it by putting in hospital names like Mayo, Dana Farber, M.D. Anderson, ad infinitum. The only thing that would come up were clinical trials, National Cancer Institute’s (SEER) survival rates, and some rates for Mayo and for UAMS. That was it! Having an operations engineering and business management background, I was shocked that performance based information was not available to the myeloma patient community.
A well-respected Senior Vice President of a multibillion dollar company, and my boss, once said, “You cannot manage what you do not measure!” From my operations engineering background, you use measurements to know where you are and to gauge the success of programs and improvements that you initiate. Total quality management has improved products for decades by using measurements to gauge improvement, so why not hospitals and their multiple myeloma programs?
But the real impetus was being in an IMF support group and watching people, my friends, die too soon. Some of them which I knew were getting inadequate care. In addition, places like Little Rock were showing survival rates of seven years whereas the National Cancer Institute indicated a survival of 33 months. I felt compelled to find a way to bridge the gap between the “What is (33months)” to the “What could be (7years)”. Yes, I was on a mission, a mission to SAVE LIFE!
Priya: What is the objective of your site?
Gary: I think there are effectively two key missions. The first is to provide a resource for the myeloma patient community to find performance-based data on survival by hospital and doctors. Currently the National Cancer Institute’s (USA) survival rate is 4 years, and that reported by United Kingdom, which has a National Health Service, reports a two-and-one-half year survival rate. However, we now see from many of the myeloma specialists that they have life expectancies of 10 years.
Their survival rates and life expectancies are now being reported on myelomasurvival.com. My objective is to allow patients to find doctors that will give them these extra six years of life! If we can do this, we would be able to save 480,000 years of LIFE. This comes from the fact that 20,000 myeloma patients are diagnosed in the US each year and the average life expectancy is 4 years. It therefore follows that there are 80,000 patients who could all live an extra six years each!
The second objective is to highlight the best myeloma programs and clinical trial results in the world, so that those programs and clinical trial results can be the new standards of excellence that other programs can emulate. One thing you will find is that this disease is so complex that it requires the skill of a myeloma specialist, and the data would confirm this. The myeloma specialist eats, drinks, and dreams this disease, and because he comes in contact and treats so many patients, he knows exactly what to do, and has seen most every eventuality. In effect, he knows so much he takes it for granted and most other hematology oncologists might be seeing only one or two patients a year and would not be familiar with all of the nuances of this disease. Do you know what the three most important things you can do as a myeloma patient to insure a long life expectancy? SPECIALIST! SPECIALIST! SPECIALIST!!!
I truly enjoy being a part of the Myeloma Cure Panel, and honored to be part of their interview series as well. I hope you enjoy this post and find time to read the entire interview at: http://trialx.com/curetalk/2012/10/cure-talk-interviews-gary-petersen-editor-myelomasurvial-com/ And as always "Together we can SAVE LIFE"/ Gary Petersen firstname.lastname@example.org