Advocacy Potpourri

The Importance of Information

A few weeks ago, I suffered a catastrophic hard drive failure. Even though the manufacturer has admitted it was a faulty product and one article says they were providing free data recovery services, I’ve been run in circles while a ton of precious data is trapped on a device best utilized as a door stop.

I spent the last year building a library of research articles and data regarding living donors and donation. Not only did I use these resources for content on LD101, I’ve referenced them in correspondence with other living donors, surgeons, organizations and professionals. Now, it’s as if I have to fix the toilet but I don’t have my wrenches. Worse, I can’t just drive over to Home Depot and pick up a new set.

Today, I was given this link to one journalist’s opinion on the decline of the newspaper industry in America:

It made me think of how precious Deborah Shelton’s 2005 articles on living donors still are, and how CNN was inspired enough to produce a two-hour show called “Body Parts”. Truly terrifying is knowing that other media outlets practically ignored the revelations in both, and NOTHING has changed for living donors in the past four years. When I try to talk to attorneys about the lack of informed consent, I hear phrases like “donor remorse” (insulting) and “these are well-known risks” (beyond patronizing. If they’re so well known, why aren’t they disclosed to the donor?). Meanwhile, living donors who were told “it’s perfectly safe to be a donor” are finding themselves with PTSD, permanent nerve damage, no health insurance, and complete isolation from their friends and family who don’t understand why they can’t “let it go”.

Nixon resigned because of a couple of newspaper reporters. Madoff was exposed because of a journalist. Countless other wrongs have been righted because someone took the risk of approaching a media outlet with incindiary material – when the official channels/systems failed, as they too often do – and our society is better for it. The only way the transplant system will stop abusing and manipulating living donors is if there is a public outcry. That will only happen if the public knows how dangerous the situation is.

An informed press is important. We should all be fighting to save it.

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