Time to fix America’s organ donor system

Would you opt-out of saving a life like mine?

It may sound like a strange question. After all, you probably don’t even know who I am. But that is the stark question that many would be left to contemplate if America makes a much-needed change to its rules on donating organs — to people like me.

I was two days from graduating college when I was officially told last year that I needed a heart transplant, having been diagnosed with dilated cardiomyopathy when I was a child. I was still only 21, but everything that I had worked toward so far was about having a long and successful life. Hearing I needed a transplant — and that my life might be over before it had really begun — left me feeling like a shell of myself. On top of that, waiting for a transplant doesn’t mean that you just feel a little ill, are put on this arbitrary list, and go about your daily life — you must meet strict criteria to be listed. Plus, unless you are at the top of the list, your wait could be months or years

So I spent the first month of my wait for a suitable heart in the hospital, bound to a narrow bed by IVs and electrodes. With a resting heart rate of 140 and the inability to keep down food, waiting too much longer was simply not an option. Luckily, a donor was found for me within the following month. Considering myself “lucky” to have a transplant may seem odd, but it’s not when you consider 22 Americans die each day waiting for a transplant. Even more shocking is that more than 120,000 Americans are waiting for a transplant.

Clearly, the United States is approaching organ donation all wrong. Of course, as the recipient of a donated organ, I am probably biased. But the sheer numbers of people waiting in the United States suggest we could learn from countries like Wales, the most recent country to implement the new “opt-out” policy, meaning consent is presumed for anyone who does not formally decline being and organ donor.

The truth is that adopting the opt-out policy in America could potentially save tens of thousands of lives as the donor pool is given a massive boost. The 2003 report “Do Defaults Save Lives?” suggested that European countries that had implemented the presumed consent principle saw as much as 99% of their populations registered as donors, compared with about 30% with the opt-in approach.

In America, an estimated 40% of the population have opted in. Yet according to a 2012 poll by Gallup for the U.S. Department of Health and Human Services about 95% of Americans approved of organ donation. One of those was Thomas Cutinella, a star high school athlete who died as a result of a head injury suffered on the football field. That big-hearted Army hopeful was the donor of my heart, choosing to become an organ donor age 16, when he applied for his learner’s permit.

Most people probably aren’t feeling quite as generous as Thomas was after waiting in line at the DMV. From what I heard, he was one of the most popular kids in school. Unfortunately, you can’t bank on a world full of people as thoughtful as Thomas Cutinella was when he decided to become a donor. An opt-out policy, though, would make organ donation easy for those who want to make a difference, but don’t know how or aren’t ready to commit there and then at the DMV.

All this might sound simple, but there are some people who consider an opt-out policy to be unethical, believing that it is a violation of the right to choose what happens to our bodies. Others worry that defaulting to opt-out will affect the quality of medical care — that doctors might be more interested in harvesting a patient’s organs than saving a patient’s life.

Yet presumed consent is not taking away anyone’s choice. Quite the opposite — an opt-out policy raises awareness and forces people to make tough decisions. If 9-in-10 people support organ donation, an opt-out policy is surely the most efficient way to ensure that Americans are having their wish granted when they can no longer speak for themselves.

Of course, the fact that the vast majority of Americans support organ donation does not mean there won’t be plenty of misinformation and criticism on the Internet — I often see the argument that transplants are “prolonging deaths, not saving lives.” It is impossible to tell if those posting comments like this are Internet trolls or just truly ignorant.

But I can tell people from my own experience that a transplant can not only extend a life, but transform it. And any time I question the ethics of the opt-out policy, I remind myself that the only real unethical thing about this issue is to continue to let someone die almost each and every hour because there aren’t enough organs being donated. Other countries have shown us it does not need to be that way.

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