Treatment Options and Cost

As I wait for my latest oncology test results, I've been doing some research about treatments and drugs that my oncologist has discussed with us in a recent visit.  I have to admit that I actually have been losing sleep over the direction my health is headed in recent years and this research isn't helping any.  If anything, I'm losing more sleep!

My health has been so poor that the poor health makes it very difficult to sleep at times.  Most times, however, I can't keep my eyes open but, now, what I'm learning in my current research is keeping me up at night.  

For the first five years or so that I've had this illness, I was very active in support groups and research.  I was actually a board member and had written a few lengthy papers for this national support group to help newly diagnosed patients.  

In the beginning, this research helped me understand and come to terms with my future of surviving with this incurable illness.  Also, I was helping others in this national support group and that gave me a purpose.  Purpose is something I had lost when I lost my career.  Don't get me wrong...  I have far more hobbies to keep me busy than I have time and energy so I can easily keep busy but having a purpose is completely different.  So, for a while, this support group was a positive influence in my life and actually filling a hole in my life.  Everyone needs a purpose, each and every day.

The longer I stayed active in this group, the more patients who had become close friends had succumbed this illness and passed away, mostly, at very young ages (30s, 40s, 50s).  This began to drag me down and this national support group was no longer a positive influence in my life.  I it was time to step away and live my life as best as possible.  I had to put this seemingly parade of deaths out of my mind.  I had to stop focusing on the illness and focus more on what I can do each day.  

In stepping away from this group and putting a stop to all the research I had been doing as well as stop writing my own research papers I had written to help other patients (as well as myself), I lost track of clinical trials, current treatment options, new treatment options, and the outlook of future treatment options that had been developed in the ensuing 15 years or so.  Now, I'm trying to catch up on all that has been learned about my illness and diagnostic criteria by research teams around the world.  Even the diagnostic criteria and classifications of my illness have changed drastically in the past fifteen to twenty years.

As a result of ongoing research, new tests have been approved by research teams as well as the World Health Organization.  Some of my own new recent tests have come back positive in the past year.  My oncologist had to convince my insurance company to cover one test and I paid out of pocket for another test.  There were new things to search for in my bone marrow after my last bone marrow biopsy last year too.  I seem to be on a roll for testing positive for some of the more serious tests.  Naturally, this bothers me.  

The good news is that these test results seem to be providing a reason for why my health has been so poor in recent years.  The bad news is that treatment options are still rather limited.  However, compared to more than two decades ago when I was first diagnosed, there are more treatment options and more drugs available today because there is a better understanding of this incurable illness.  This availability of newer drugs doesn't mean everything is rosy...   the illness is still incurable...  treatment is still strictly for addressing symptoms just like my current treatment...  the side-effects are plenty and some are quite dangerous side-effects...  and the costs are astronomical.  

I am on maximum dosages of many of my current drugs already.  If I remember correctly, some of my drugs are beyond maximum dosages.  My health is needing far more drugs than most other patients just so I can manage to stay out of the hospital so we are hoping to find another treatment option to stabilize my health a bit and maybe cut back on my current treatment plan with something more effective.

These new treatment options are ridiculously expensive though and, honestly, the statistics on effectiveness aren't great either.  Effectiveness is in the "fair" or "okay" range (ie, 40-60% range) but certainly not in a range I would call "great".  Regardless, these new treatments all seem to be exorbitantly expensive.  As an example of the cost of these treatment options, see the photo at right.  This is a screen capture from my prescription insurance webpage showing the total cost column of a cost estimation for one of these new drugs.  

This $37,450.65 cost is for only 30 days.  The annual cost is $449,407.65...  close enough to call it a half-million dollars per year!  And, this isn't even a cure.  It is simply an option to try to improve my daily quality of life and perhaps extend my life a bit longer than if I were not on this treatment.  It is a drug to help stabilize my health a bit in an attempt to make my episodes less life-threatening.  As I get older, my body is having a more difficult time recovering from these life-threatening episodes.  There is only so much a body can take and we are now at a place where my oncologist is concerned.

This begs the question...  How bad does someone's health need to be...  How serious does someone's health need to be to warrant spending half a million dollars in a year in the hope of some sort of improvement?  This question is keeping me up at night.

What I'm learning in my research is also keeping me up at night.  All the stuff I pushed out of my waking life for close to twenty years to help my sanity and allow me to live my life rather than just survive is now coming flooding back and the gravity of it all is...  hmmm...  what word am I looking for here?  I guess to quote Marty McFly and Doc Brown, the gravity of it all is "heavy" and it really is weighing heavily on me.  

Clearly, there was good reason why I chose to live my incurable, debilitating, and deteriorating life in relative ignorant bliss.  This ignorant bliss allowed me to do things I probably would not have even attempted if I was laser focused on my health and preventive inaction.  That ignorant bliss is gone now and probably won't be back until I feel I am in a new, safe, "new normal".  The road to that new normal is looking like it will be a bit rocky and, at the moment, is shrouded in darkness.

Now I need to try to get some sleep.