Do patients always benefit from clinical trials and medical research? Are patients consumers? There is an assumption that medical research automatically correlates into improved outcomes for patients, particularly those with chronic medical conditions, such as diabetes, or with life-threatening conditions, such as many forms of cancer. However, their are different viewpoints. After the recent anger over drug price hikes for pregnancy and MS drugs GxP Perspectives requested a Guest Commentary by Marc Stecker, who has multiple sclerosis, and is the author of the blog, Wheelchair Kamikaze: “The Rants, Ruminations, and Reflections of a Mad MS Patient.” He is also an outstanding photographer and his photo, “rail-shadow” is featured above left. Because Marc’s commentary is different than most on this blog I am going to start with his concluding comment. I think it will help put things into perspective:
“I’ll let my final words on the subject be these: As responsible members of a just and honorable society, please, view me first as a patient, not as a consumer. Human suffering should never be treated as a commodity, regardless of the considerable economic incentives to do so.”
There will be differing reactions to the viewpoints expressed in Marc’s Guest Commentary. Please feel free to comment with your own views.
A Patient Perspective on the Mechanics of Medical Research
by Marc Stecker
Although there have been some incredible advances made in our efforts to heal sick humans over the last 50 years, there are still vast swathes of patient populations whose illnesses remain poorly understood, insufficiently and ineffectively treated, and ultimately incurable. Problematically, many of these patient populations generate billions and billions of dollars for the modern medical hierarchy, a situation that sets up a paradox within our profit driven medical establishment. Cure these patients, and vast sums of money and an elaborate infrastructure would simply evaporate; keep them perpetually reliant on hyper expensive medicines and medical procedures, and reap the fruits of an unending money machine.
Before I am accused of being a conspiracy nut, let me state outright that I do not believe that there is a cabal of evil, mustache twisting, demonic connivers assembled around a huge flaming conference table, snacking on deep-fried baby’s arms while plotting to keep cures and remedies hidden and out of reach from the desperately ill. If this were the case, the solution would be fairly straightforward; simply “out” the conspirators, and the walls come tumbling down. Rather, the problem has become incorporated into the system itself, insidious and inherent, the logical outcome of the evolution of a medical industrial establishment that has come to view sick people as consumers and horrendous illnesses as opportunities for tremendous financial gain. This system does not require people with malicious intent to keep it functioning; it only needs decent people doing their appointed jobs to the best of their abilities to keep the gears turning.
The job of a publicly traded pharmaceutical company CEO is to constantly drive up the price of his company’s stock, not to facilitate the creation of drugs that would be of the most benefit to the patients taking them. This isn’t a question of morality, but of economics. The drug companies, and those who manage them, are merely doing what every other business endeavors to do in our free-market capitalist system, constantly increase profit. I’m all for free-market capitalism; in recorded history there has been no better economic driver and creator of wealth. Unfortunately, when applied to healthcare, in many cases good economics has led to very bad medicine.
Given that the mission of pharmaceutical companies is to generate the most bang for their research bucks, their research dollars are directed to projects that have the best possibility of leading to substantial profit. This, in turn, influences the behavior of even the most well-meaning medical researchers, who, just like everybody else, need to feed their families, pay their bills, and naturally seek to advance their careers. Thus, they are drawn to investigations that will most likely win hotly contested research dollars. That funding, the vast majority of which comes from the big pharmaceutical companies, goes almost exclusively into researching novel compounds that can be patented and remain the sole property of the company that discovers them for many profitable years.
I’ll let my final words on the subject be these: As responsible members of a just and honorable society, please, view me first as a patient, not as a consumer. Human suffering should never be treated as a commodity, regardless of the considerable economic incentives to do so.
Please see Marc’s Blog, Wheelchair Kamikaze where you can read more of his viewpoints and see his photographs .and videos. Here is one of his videos which is quite funny.
31 March 2011: MedPage Today: FDA allows compounding of pre-labor drug
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