Recently a Facebook friend posted what amounted to a rant on the destruction of unused embryos which could be used for stem cell research.  His rant is borne in his understanding stem cells may offer the hope of a cure for a problem with his neice’s eyes.  I’ve never really asked him for the specifics of her problem, but it is clear from his posts, somewhere along the line someone inferred, or perhaps told them, stem cells offer a cure.  As I don’t know of his neice’s specifics, he does not know of mine, of the probability of my succombing to my cancer within the next 3 or so years.  I responded to his post offering comment on the dilemma society faces when deciding to use these advances, the cautions and potential downside risks.  I don’t think he, or his sister, felt better by reading my post.

The funny thing about my situation is that in some ways it carries a sort of power, it seems to give my words and views greater relevance in the eyes of those who read or listen to what I say.  I liken it to what I experienced during the last days of one of my jobs when everyone listened intently to what I said and attempted to extract all I could offer.  In that situation I was kind of a lynch pin, I touched many parts of the organization and in meetings where I previously was heard, but often drown by the voices of others, I was now center stage.  In one such instance the CEO literally told others at the table to let me speak, to hold their words because “he is leaving and won’t be here to add to the conversation in the future”.  My cancer and its probabilities seem to carry the same weight, it quiets those around me and allows me to be heard.

Back to my friend and his neice, my comment to his post noted a couple of things.  First, the idea and dilemmas of cloning and embryonic research are relatively old.  In the late 1970’s I knew a researcher who was cloning mouse skin, recombinant DNA was on the fore of biotechnologic research and in the early 1980’s Dolly the sheep came into the world along with the commercial “cloning” of dairy cattle.  I’ll never forget the cover of the Holstein World, the official magazine of the Hosltein Association of America, which had a photo 4 bull calves lined up next to each other, all coming from the same embryo – not the product of true cloning, but rather the splitting of the blastocell.  It was all novel and all come with controversy.

During these times of innovation, when cloning and recombinant DNA were novel and unknown, detractors of the technology made note of other failures.  Who would have predicted the long term effects of diethylstillbestrol (DES) which offered relief for miscarriages and which was also used to enhance the growth of beef cattle, would affect the daughters of the women who benefited from its use.  Following Dolly, there were other clones and later it was learned that with cloning came some negatives, shortened life spans being one and which, to my knowledge, has yet to be explained.

The point I made in my response was all things are not necessarily the best and greatest, irrespective of the promise they hold.  With Dolly, everyone thought it was remarkable until it was discovered clones do not live as long as “normally” produced beings.  With the DES, most thought it to be the wonder drug and why not, it prevented miscarriages in women who could not otherwise carry a pregnancy to term.  The question, as with many things biologic, is at what cost?  DES resulted in high rates of cancer in the daughters of women who were treated with DES, but that took many years to discover.  Few would have anticipated a decreased life span with a clone, until Dolly and others demonstrated it to be the case.  And then there is the moral/abuse factor.

For those who may remember, there was a book written in the early days of organ transplantation titled “Coma”.  The premise was companies, in their zeal to make money from the “organ trade”, began crossing the line by orchestrating the induction of comas in surgical patients who were organ donators.  The plan was concieved in such a manner as to make the intentional undetectable and therefore kept it outside the realm of malpractice – the outcomes were considered a realization of “the risk associated with surgery”.  The coma induced people were then “warehoused” by suspending their bodies in climate controlled rooms were they were kept alive by artifical means until a tissue match was found for a particular organ.  If possible, the perpetrators of this horror would try to sell vital organs last so they could maximize profits.  A more recent, and real parallel to this came with the illegal cadeavor trade which involves the extraction of body parts from cadeavors – bones, corneas, skin and similar parts.  As things are coming to light, we are learnign of many unethical doctors and funeral directors who conspire to harvest parts from even those cadavors deemed unsuitable as donors, for example, those dying from cancer.  The result has been recipients who are contracting things like HIV and cancer from the parts they recieved, which, were supposed to help them.

So what has this to do with the title of this post?  The short answer revolves around the answer to the question of “how far do we go in preserving life or improving its quality?”, just what is acceptable, both morally and financially, when it comes to matters of life?  A very sensitive subject for many, the core of which may, in the end, reside within one’s own paradigm, one’s measure of life and the dichotomy of whtehr we are driven by a fear of life or a love of life – all topics for another post.

Time for another story, perhaps stories.  For those who may have been exposed, you will know that many cancer treatments are preceded by a number of tests, biopsies, imaging and blood work.  All look to narrow the treatment focus to that which would be most effective.  In my odessey, the one thing I noticed was that with all the tests, with all the doctors whom I met, never once did anyone question the value of a test or procedure.  All were shocked when I challenged them to prove the value of what they suggested rather than just let them move forward since my insurance company would foot the majority of the bill.  In one case, I had a bone scan which somehow the hospital “lost”.  The doctor said I would need another before they could do a treatment plan. My response was fine, but who would be paying for it?  The doctor’s initial response was they would charge it to my insurance company.  I said they most certainly would not and since they lost the one my insurance already had paid for, they should do the “replacement” on thier “dime”.  To insure my point was made, I refused treatment until they agreed to do the scan and to ensure there were no miscommunications going forward, I made them put it in writing, they did.  Just one story, but there are more.

In subsequent treatments the doctors suggested a number of  and teststhey “thought might be helpful”.  Again, I challenged them to make the business case.  I asked, what will the test cost, what will it provide, will it substantively add to the body of knowledge associated with prostate cancer and ultimately, what would it mean in terms of estimated extension of life for me.  As you can imagine, all novel questions and in one case, the doctor became a bit infuriated with the challenges, threw up his arms and said “well then we’ll do nothing”.  After I calmed him down a bit and explained my point, he reflected and in doing so reevaluated his initial suggestions.  He explained, this test is vital to treatment decisions, without it we can’t do anything, this is a “nice to have” – it will both contribute to the body of knowledge and likely allow us to make better choices and finally, that one is a “nice to have”, but in really looking at it, probably is of little value – it is something we consider as part of the “standard of care”.  Interesting response and one which enabled the establishment of a very strong realtionship, one in which we began challenging paradigms.  My sense is we not only saved the insurance company money, but also improved my care and maximize life extension.  On the insurance company, only once did they push back on any procedure, but quickly backed off when they realized my approach and how I indeed saved them money most would have spent.  There is more on the topic of money.

I think in a previous post I mentioned how dendreon has developed an immunothereapy for prostate cancer.  It was considered quite a development since the whole immunnotherapy approach with cancer was 20 years in the making and wrought with failures – most had given up on it.  Needless to say those around me were very excited since this was the first major development since my diagnosis and more importantly, it was different than anything I had done until that time.  It gave them hope and I received countless emails of the press release.  I, on the other hand, was not so enamoured with the prospect.  Few, if any, knew I had conversed with Dendreon’s Chief Medical Officer and knew a lot about the therapy.  What I found remarkable was the cost benefit ratio and what I also discerned, ws the company was hoping to prove the drug more effective though phase IV studies (collection and analysis of data after a drug is in the market).  However, what I realized was that in order to “contribute to the phase IV study”, I would first have to be sick enough to be in the candidate pool designated as eligible for the drug and pay, either out of pocket or through insurance $93,000.  On the surface this does not seem like a lot, but the key here is that they have only been able to prove an average life extension of 4.1 months when using the therapy.  Personally I’d rather leave that money to my son or make it available to someone who will receive a greater benefit.  My friends and family think differently.

Returning t the idea of what is reasonable, I think I may sort of outlined my view.  I think many people go to extraordinary means to keep themselves or someone else alive.  In some ways, I think the medical community likes these folks because by doing these extraordinary things, they learn, they add to the body of knowledge and do so with the hope of greater life extension for others they may encounter in the future.  For me, it is a tough balancing act, it teeters between several things.  The first being the idea of value relative to life extension and knowledge contribution, both valuable in my view.  The second, or counterbalance, is wasteful spending and sustaining false hope for both the afflicted person and those in their lives. 

For me, I am not sure if there is true value in moving forward with stem cell research with the hope of “curing” my friend’s neice’s eye problem.  For me, I look at it as another balance, the balance between what could be good versus what could be very bad.  Perhaps her eyes will once again be perfect, but the price may be another disease or malady of greater consequence.  For me, I may not be so quick to accept the hope offered by this relatively unknown frontier.  Hard decisions, but as many now seem to view my words, I say them with some sense of credibility.  Credibility bourne of being afflicted with a disease to which I will likely succomb and whose life continues to beat on.

As always, feel free to comment or you may email me at lifeabstractions@gmail.com

ciao

Lifesabstractions

© Life’s Abstractions, 2009-2010. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Life’s Abstractions with appropriate and specific direction to the original content.

Advertisements