I've talked and talked and rambled on about the disillusionment one stands to feel during one's progression in physician training over the years. My avid readers will remember the "Ladies and Gentlemen, Your Future Doctors!" 'saga'. If you don't, check out Part I and Part II. (Does time fly or what?).
Anyways in the second part I go on about how you lose this sense of idealism, this cleanliness, if you will, that people commonly associate with medicine. Now some one and a half years down the line, this incident comes and reshuffles my perception of the world of medicine and what it all stands for.
In the OPD (Out Patient Department) we care for patients on a visit-to-visit basis. It is usually the least expensive form of healthcare, and so inevitably we get to see the less fortunate patients who are paying petty fees for consults with doctors in a high-ranking hospital. The ramifications of this, which I will save for another -long- post, and the experience of such 'encounters' sometimes shakes you to your core. The socioeconomic aspect that we never really come to face on the ward floors with high class (I hate to say it) patients is a rude awakening to say the least. So one of my last patients in the OPD Pediatrics rotation was K. an 11 year-old boy whose chart (We view charts before meeting with patients) said that he had growth failure. As I read more and more pages, and came across more and more test results and differential diagnoses, I got to the note that was written when K. had last visited the OPD clinic. At the time (some 2 years ago) he was diagnosed with Laron-type dwarfism. In brief, Laron type dwarfism (also Laron Syndrome) results from a mutation of the Growth Hormone receptor, and a subsequent Growth Hormone insensitivity leading to failure of growth due to severe IGF1 deficiency (IGF1 mediates the action of Growth Hormone).
The Visit
K. walked into the room and I immediately saw his prominent foreheaed (typical of the syndrome). To me he looked like a 4-5 year-old toddler, physically, and somehow even though I knew about his condition, I was still dumbfounded when he greeted me with a noisy low-5 followed by a firm handshake worthy of a grown man. Or when I heard his 11 year-old voice and his 11 year-old vocabulary. Or as I saw his 11 year-old movements manifest in a 4 year-old body. His 11 year-old self confidence, assertiveness, and demand of autonomy also struck me as he insistently forbid his mother from answering my questions for him. I think I've stressed it enough, it was one hell of a surprise, despite the fact that I knew about it.
K. was without a doubt the most pleasant patient I've had during this rotation. He had a persistent contagious smile that revealed a set of run down, crooked and decay nibbled teeth. He made jokes, played with my stethoscope, and everything else he could find in the room. The whole interview and physical exam took place in a light atmosphere and in the best possible conditions. NOT to be soon forgotten.
Of The Sadness of Reality
One promising modality for the treatment of Laron Syndrome is recombinant IGF1 (marketed under the name Increlex in the U.S.), which can bypass the action of GH on its deficient receptor, thereby restoring growth satisfactorily if treatment is initiated in a timely fashion.
Sadly, Increlex is unavailable in Lebanon. And apparently it is a very expensive drug, which as you might have concluded makes it a problem for an OPD patient struggling to pay even the LBP 10,000 OPD fee.
As documented in K'.s chart, K.'s mother was told about this treatment when they had last visited OPD. She was also told that it was not available and that there was no way she could afford it even if it were. She was coming a couple of years after that visit in the hope (in her own words) that "Dr. N had something new for her and her son".
- Dr. N: There still are no significant efforts to market the drug in Lebanon.
- Mother: Oh.
- Dr. N: As I told you last time we are trying but your son's condition is so rare that it's hard to find proper treatment here. And the expenses would be just impossible.
One promising modality for the treatment of Laron Syndrome is recombinant IGF1 (marketed under the name Increlex in the U.S.), which can bypass the action of GH on its deficient receptor, thereby restoring growth satisfactorily if treatment is initiated in a timely fashion.
Sadly, Increlex is unavailable in Lebanon. And apparently it is a very expensive drug, which as you might have concluded makes it a problem for an OPD patient struggling to pay even the LBP 10,000 OPD fee.
As documented in K'.s chart, K.'s mother was told about this treatment when they had last visited OPD. She was also told that it was not available and that there was no way she could afford it even if it were. She was coming a couple of years after that visit in the hope (in her own words) that "Dr. N had something new for her and her son".
- Dr. N: There still are no significant efforts to market the drug in Lebanon.
- Mother: Oh.
- Dr. N: As I told you last time we are trying but your son's condition is so rare that it's hard to find proper treatment here. And the expenses would be just impossible.
Dr. N once again sent K. and his mother home empty-handed. I could not tell whether the expression on the mother's face was one of disappointment, helplessness and resignation, or of expectation.
My Reactions and Thoughts
I was deeply saddened by this outcome and for a brief moment I felt helpless and ashamed that we had to send a patient home after telling him in no uncertain terms: "there is a drug for what you have, we're sorry but you just can't have it". So what are the issues here? I mean after stepping out of that personal, humane, human, emotional roller coaster ride of a first reaction, what are the circumstances that need to be discussed?
We hear a lot every day about how medicine has been commercialized to a degree where incidents such as these are possible. We also hear about how shameful it is that medicine is a financially driven institution. And what we hear most are the sad individual stories such as the one I've told you in my long and by now surely boring account. But what is the bottom line? If anyone knows me they know I'm a bottom line kind of person. So what is it in this case?
Well the bottom line, stripped of all emotion, all sentience, and all humanity, is a sad realization that money is and always will be a major, major factor in the drive for research of all kind. Putting all of this baggage aside, a patient is buying a product (in this case a drug that is the result of years and years of expensive research and trials), in order to use that product for personal reasons.
This is how impersonal and desolate the bottom line of modern medicine has become. And to me that's all that matters because there simply is no point trying to discuss how and why it comes down to this. So is it correct to assume that my disillusionment has surpassed all the good that medicine has brought and is bringing to this world? That in the end it can be boiled down to a simple transaction between a care provider, a pharmaceutical company, and an ill person?
The answer is a resounding NO. To me there is always a positive side to this. One positive side that will not be affected by the source of motivation of pharmaceutical companies, is that no matter what happens, medicine will always strive toward a common goal. And that common goal (besides, of course, the financial rewards) being what it is, which ranges from the curative eradication of disease to the palliative nature of the most trivial of pain medication, I can confidently say that medicine does more good than harm.
Sure, unfortunate patients will benefit less than others and K. here is a prime example. But if we consider the long term outcome of the situation, we are hard-pressed to see that had there not been this monetary incentive for research, Increlex would have probably never seen the light of day! But the bottom line is that it HAS. As a result of this, we HAVE a drug, it IS helping SOME people and maybe one day this drug WILL be available to everyone. I will go out on a limb here and say that an inevitable period during the life of this drug (and this applies to all drugs and forms of medical treatment or diagnostic tools one can think of) when it will be administered in a discriminate fashion among patients is only an obstacle, a hurdle that we will overcome in our drive toward global availability and affordability of the drug. This situation now is better, in my humble opinion, than not having any drug at all, and I would be surprised if anyone argues otherwise.
Sad. But true.
