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Friday, March 23, 2012

Public Commentary

My goal is not to preach to anyone or tell my family's stories to the general public. Yes, I have a blog. Yes, I often share my opinions--and strongly voice them. However, I am mainly doing this blog as an outlet for myself but also to keep some closer friends and family updated. I try to avoid broadcasting this information and also try to keep this somewhat anonymous. This is an extremely personal topic for my family, however there are many aspects of this situation that are impacted by public policies and opinions. Some I have already described, such as the national transplant system method of allocating organs--specifically livers using the MELD system. Others I have not brought-up yet, including the baffling low number of organ donors in this country.

I tend to get very frustrated with most media outlets easily about a range of topics: how the pharmaceutical industry is portrayed and how politics are covered as two examples. I actually get frustrated enough that I often avoid the news. However, in order to keep up with whats going on in my industry and the rest of the world, I try to listen to NPR and review articles in specialized forums, including the Wall Street Journal (WSJ) Health section. I came across one article the other day in the WSJ that I felt I had to bring-up in this forum since it was another case of a public opinion that the media is only exacerbating an ongoing problem in this country. In this case, this public opinion impacts Dad's situation.



The WSJ published an opinion by Dick Teresi titled What You Lose When You Sign That Donor Card. In case you don't have time or interest (or have access) to the article, the author talks about all of the rights that
you give-up if you sign-up to be an organ donor. He goes through the process of declaring someone brain dead (which, by the way, I'm not sure if he's entirely correct) and argues since there have been some anecdotal stories of cadavers having reflexes while harvesting organs after being declared brain dead, that essentially you should really re-consider becoming an organ donor.

This is the part where the record scratched and stopped for me. WHAT?

What's so offensive for me in articles like this is that most people that read something like this will be mis- and under-informed and will make a decision to never become or no longer be an organ donor. That is obviously what frustrates me the most: my father would have had a transplant three years ago if enough people were organ donors. Instead, he may not survive while waiting for a transplant since there are too many people that either do not care enough, do not know enough, or are swayed by articles such as this to never become an organ donor. Actually, it is estimated that an average of 18 people die every single day in this country waiting for an organ transplant due to lack of available organs. Every day! I think the even sadder commentary is that 98% of adults in this country have heard of organ donation, 90% say they support it, yet only 30% even know what to do in order to become a donor (http://donatelife.net/understanding-donation/statistics/). It is also a fact that if more people in this country became organ donors, there would not be long waiting lists and would not be as many people dying while waiting for an organ transplant.

The real issue based on the information presented that the author should be discussing is brain death determinations, NOT organ donation. In the cases he's describing where he's trying to convince people to reconsider being an organ donor, the medical staff considered their patient brain dead. The two options at that point: 1.They would be laid to rest by their family or 2. First give life to an average of 3.3 people before being laid to rest by their family. Why did he bring-up organ donation at all in this case? Now, there will be plenty of people that will read this ridiculous editorial or have someone tell them about this article that will now never become an organ donor. Let's just perpetuate the problem in this country more, shall we?

I have had a lot of time to think about advance directives given my parents' collective health history and existing problems. I think every single person in this country should sit down with their loved ones, describe their medical wishes (this covers a lot of issues! take time to think through this!), and put it into a document that is a legal record if it is ever needed. It is a set of personal decisions and should stay that way, but it really needs to be documented in case there comes a time that you cannot speak for yourself. This is a very important issue that SHOULD be discussed and be the topic of editorials. This is not what this article was discussing, however. In fact, I think he was far from the heart of the real issue/s in this country relating to what rights you really lose when you face death in this country. By the way--you do not necessarily need a lawyer to complete an advance directive, in case you have not written one yet.

This article skips the topic of having advance directives and then preaches how organ donation is a slippery slope as it relates to declaring somebody brain dead. I am going to keep the topic of declaring someone brain dead out of this (if you read the article, I recommend you review the comment made by Gary Lindenbaum on March 22), however he then goes into the price/cost of organ donation. He proceeds to tell the reader that an average organ donor will lead to two million dollars worth of organ donations and the organ donor family should get a piece of that.

Record scratch and stop. Again. WHAT?

Here, I could really rant on, however I'll try to contain my thoughts.

First, the cost of an organ transplant is not driven by the organ itself. If you read my last post, you realize that an organ transplant in this country is extremely involved, incredibly risky, and a highly regulated process in this country. I didn't even get into the details of the transplant itself, but that is certainly not trivial or inexpensive. The entire process involves a lot of highly trained medical professionals. The cost of the transplant is not due to the organ. The donated organ is priceless and people that donate their organs to give life to others are also priceless. They do not have dollar tags associated with them. They are heroes.

The most ironic part of the editorial is that the author says somewhat sarcastically that he is a "heartless, selfish bastard" when he tells the DMV worker that he is not an organ donor. Not only is he a heartless, selfish person, but he is one-upping that by convincing even more potential organ donors to not check the box at the DMV with this editorial. Do I sound harsh? Yes. This is one topic where a media outlet is perpetuating something incorrectly and having a direct impact on people. In this case, my family is directly impacted by this public commentary.

I am proud to say that I have been an organ donor since June 1995 when I received my first driver's license. This was many years before learning more about the potential liver transplant that my Dad would eventually need and the general organ shortage in this country. I am not bringing this up to toot my own horn. I certainly hope that I live a very long and healthy life, however if something terrible were to happen to me, I want to know that I provided another chance at life to several other people just like my amazing father.

My mazel.

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