Through 28 posts, I've managed to avoid any political topics, but that comes to an end here. If you know me at all, you know I'm very outspoken – some would say to a fault. I recognize that my passion can sometimes be construed as a bit too much at times, but I firmly believe that my passion is ultimately rooted in compassion, which can lead me to get worked up. I also give myself a bit of credit that I do try my best to be educated about the issues of which I discuss, but I'll admit I can start to get a little myopic in regards to my own views.
Let me start by saying one thing: I passionately believe that every American should have healthcare; in fact, I believe healthcare is a human right. We live in an era with unprecedented wealth, technology, and medical resources. I recognize that this is not an easy task with a simple solution, but I also refuse to accept that the country with the world's largest GDP has some shameful morbidity and mortality rates, uninsured rates, and other typical markers of nationwide health. America is the richest country on earth, and I believe with that responsibility comes the responsibility of guaranteeing health care to all people here.
Earlier this year, I read a book titled "An American Sickness" by Elisabeth Rosenthal. Rosenthal is a former physician turned journalist that has spent the last twenty years investigating why healthcare has become the big business that it has become. (Note: healthcare, in my usage, is intended to mean hospitals, pharmaceutical companies, insurance companies, providers, foundations, etc. There are ad nauseam moving parts here.) I've been meaning to write a post summarizing the conclusions in her book, with sourced material, citations, etc. It will be a long post with the goal of cliff-noting it so people don't have to read what is essentially a dissertation to reach an understanding of how bad the situation has gotten and how to cure it.
I will write that post, but for now, I'm going to appeal to emotion rather than facts. This post is written from the perspective of somebody viewed as a commodity to the industry. I am not writing to you from the perspective of a liberal, or a scientist, or from politics, but rather, from somebody that is adversely affected by viewing the patients as profits.
This may sound cynical, but when you get into the thick of it, viewing patients as commodities is an inherently capitalist viewpoint. A drug that I'm on – Orkambi – cost nearly $260,000 a year in 2015. Proponents of the free market will usually use the talking point that drugs for orphan diseases, which includes people with CF, typically cost about $1bn to develop. I understand that the money must come from somewhere, but insurers end up facing the brunt of those costs, which only perpetuates the issues we currently face.
But a part of this means that patients with orphan diseases have to be constantly concerned about the fiscal implications of the drugs designed for their diseases; we are conditioned to believe that companies – companies that will eventually profit; executives will oftentimes get multimillion dollar bonuses – are doing us an altruistic favor for developing drugs for us. If a drug can be successful for the community, we have to be worried it will benefit the shareholders. A drug could literally be life-changing for a subset of people with CF – as better modulators are developed for patients with rare CF mutations, the subset can theoretically become as small as less than 1% of the CF community – but since it isn't profitable, it may never reach those patients.
Let me make another point: I work in a lab sponsored by the CF Foundation; I work closely with people at the CF Foundation; I work with reps from pharmaceutical companies; I know people that work for insurers and providers. I am not demonizing the people that work in this industry; in fact, these people are why I'm so passionate about science, medicine, and better healthcare. There are great people at every level in this current framework; unfortunately, the bad actors can easily exploit the current framework to profit and perpetuate existing social, cultural, and economic issues, and oftentimes, I don't believe that the genuine selflessness of some will outweigh the greed of the few. (This is probably a jaded perspective, but being fully optimistic is probably the wrong mindset to take when approaching an issue like this.)
I believe we are currently working within a framework that exploits the people it's intended to protect: the patients. I also believe that free market principles will not solve the ailment that is our current healthcare crisis. Allowing healthcare to be approached like every industry disregards the reality that it is fundamentally different than every other industry; in fact, even calling it an industry (definition "c" from Merriam-Webster of industry: a distinct group of productive or profit-making enterprises) is an inherently self-defeating exercise; it is literally calling parts of the healthcare system "profit-making enterprises," meaning patients are fundamentally necessary for profit. I suppose there is a school of thought that believes it is okay to allow all pillars of healthcare to be for-profit; I, for one, do not subscribe to that belief as being the best healthcare system for all peoples.
And to those people, I ask: what would you say if you or your child was a commodity to other people? To be completely frank, we're all commodities in this framework; not everybody, however, is so blatantly commodified as those with chronic and/or orphan diseases.
For transparency purposes, I'll admit I have a strong opinion. I admit I can strengthen my thesis with more soundly-stated facts, but to begin to broach a societal (no, healthcare is not plainly a political issue) issue like this, disregarding emotion is fruitless. Emotion matters here simply because humans are affected and to disregard emotion is to disregard their humanity.
I invite you to consider my perspective and to reach out and challenge me. I want there to be disocourse. Part of being a writer means exposing myself and generating discussion. Let's get moving on making our society a better place for everybody.