November 2nd will mark my 60th birthday -- and also mark the sixth anniversary of my return home after undergoing an autologous stem cell transplant to deal with cancer. It is a good time to reflect on the past six plus years and my long journey with this deadly disease.
I was diagnosed with multiple myeloma, a cancer that affects the white blood cells in your bone marrow, on St. Patrick's Day 2009. Nothing can prepare you -- or even your doctor -- to say the dreaded words "you have cancer." It was a shock, especially since I had never missed a day of work from any illness in my life, be it playing major league baseball or working on Wall Street. I considered myself very healthy and did not ever expect to hear these words.
At the time of my diagnosis, my version of myeloma was deemed high risk. If my initial treatment did not work, I might be dead within a year. Fortunately, the pill-based regimen that I received did work extremely well, and by October of 2009 I was ready to have the stem cell transplant to further battle the disease. Five weeks in an isolation room being anemic, having a limited white blood count and suffering from 103 degree fevers and a blistered alimentary system was stressful, but my response to the treatment was excellent. Shortly after coming home I was placed on a maintenance dose of the same medication and I have taken it ever since.
From November of 2009 through today, I have not shown any perceptible sign of the cancer. At this time last year, my oncologist told me that it was time to talk about the "C" word. I nervously asked "do you mean the cancer is back?" He said no, I mean "cure" - you are as close to being cured of an incurable disease as I have seen". I realize that the odds are that I will relapse at some time in the future, but for now I will enjoy the fact that I have told cancer to get lost for at least a few years.
My excellent response to the myeloma treatment made me an outlier, as the median survival rate when I was diagnosed was only one to three years, but science and innovation have changed that. The five year survival rate for myeloma patients is now almost 50 percent, and at some hospitals it is 63 percent. Continuous innovation in the blood cancer field has made remarkable strides in the past decade, and it is poised to do more. If and when I do relapse, other drugs have already been developed in the past few years that can be used to treat me.
Was I now returning home an invalid, unable to contribute to society? Hardly! After a brief period of excess caution to avoid infections, I was able to cook, clean and even assist with my mother-in-law's health care at her nursing home. I was able to be there when our daughter graduated from college. I was able to attend numerous lifecycle events, both happy ones and somber ones. In the past six years I taught approximately 1500 students at three colleges, served as a school advisor, counseled many on career and life choices. I coached hundreds of young baseball players at Major League Baseball Players Alumni clinics. And, I began to attend major medical conventions to deliver the patient's perspective on access and choice in care.
This last item is the most important. If I had lived anywhere other than the United States, systems such as QALY (Quality Adjusted Life Years) are used to evaluate whether treatments should be given to patients based on their expected survival time post-care. In my case, based on some average expected survival rate, I would have been denied the life-saving treatment that I received and would probably have died sometime in 2009.
Perhaps another treatment might have worked, but would you take that chance with your life? Insurance practices such as "fail first" exist, where patient must try the older and less expensive drug and fail to respond to it before being allowed to take the novel therapy. How many patients may have ended up prematurely dead under this scenario where the right drug at the right time is kept away from a person in need? Patients should be proactive and have DNR's, living wills and powers of attorney to make sure their wishes are honored. However, patients should also have a doctor who is ready to fight for their life, with access to as many weapons they deem necessary to battle a lethal disease. That decision should not be a theoretical and impersonal one made by an unseen administrator far removed from your bedside.
These medically harmful attempts to limit access based on an administrator's determination of value need to be debated in the public square. We patients pay the co-pays, insurance premiums, taxes and other fees that fund the entire medical system, but at conference after conference, when discussions on cost and value occur, patients are not represented on the stage. Panelists from on high -- medical administrators, Masters in Public Health and insurance executives -- lecture us about how much we should pay and how our dollars will be divided in the health care system. Bureaucrats want our dollars but do not want our opinions, even though the decisions being made affect the quality of our individual care. The reactions that I receive at conventions when I bring up this point and mention their usage ofOrwellian definitions like "choosing wisely," "evidence based" and "unnecessary care" is frosty at best.
I plan to redouble my efforts in 2016 and beyond through "My Life Is Worth It", an online campaign that I co-founded to fight for fellow patients because we want, need and deserve to be at the table when discussions linking cost and value of our care occur. We believe that medical innovation can and will save lives, reduce the cost of health care and stimulate economic growth.
We will continue to push back against "fail first", restrictive insurance formularies, obscene co-pay requirements, time consuming data entry requirements that do nothing other than keep doctors from looking into the eyes of a scared patient with a chronic disease. We will also question the propriety of medical administrators and medical trade groups forming agreements with insurance companies, a blatant conflict of interest against the Hippocratic Oath. We will make sure that the doctor is allowed to practice the art and science of medicine on behalf of the patient and not at the whim of the administrator.
I will question Big Data collection and whether it truly provides value to those who are ill, or does it merely create a system of medicine in which meeting the average or a satisficed level is considered proper care. To borrow a phrase from my baseball days, Big Data may get us in the ballpark, but personal care from a trusted physician gets us to our seat.
We patients are not averages; we have different genomic responses to the initial phases of the disease, its diagnosis, treatment and maintenance protocols. One size fits all care will not advance survival rates or cures. Treating cancer patients based on an average will only yield average results. What is needed is to beat, not merely meet, the norm, to raise the bar and to make the exceptional result today the norm in the future.
I want others to also become outliers, to live longer and better with their chronic illnesses - and to be able to fill their time not merely being alive, but using the time that innovative treatments provide us to be at those lifecycle events - to do the things that make living worthwhile.
I have a lot to be thankful for this November, and celebrating this day with people who reached out to me and my family during our time of crisis is where I want to be today. I lift a glass and say thanks to friends, family and medical professionals whose actions and words helped make today's birthday happen.
This day makes living worthwhile. This is an example of real value that cannot be captured by an app or in an accountant's spreadsheet by those trying to ascertain the value of medical treatments who know the price of everything and the value of nothing.
This party today is being held at the corner 60th and 6th, and I am glad you were able to meet me here. I'm still here, dammit, and I plan to be for a long time.
To all of you who helped, I say thanks again!