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Informed Consent Living Donor Misinformation Living Donor Research

Let’s Hear It For More Living Donor Misinformation

Not long before Christmas I was alerted to yet another Sally Satel’s one-sided editorials about paying living donors for their organs. This time she was utilizing a conversation she had with writer Mark Cohen regarding the effects the recession was having on people’s theoretical willingness to ‘sell’ an organ. I haven’t blogged about Ms. Satel, or Mr. Cohen’s columns thus far because I sent an email to Mr. Cohen correcting many of his misconceptions about living donation and hoped to have a dialogue with him before ‘going public’. Mr. Cohen has not yet seen fit to reply to my missive, but since I still hold out hope, I’ll delay writing about those particular articles in great detail.

What I do want to address today is a piece of information that has been used over the years in the tranplant community by people who want to convince the public that living donation is ‘safe’, a statistic that was cited by Ms. Satel and repeated by Mr. Cohen in his columns:

There is a .03% mortality rate for living organ donors.

 

Like many statistics, once they’ve been repeated enough, they become accepted fact, and no one questions their origin or veracity. Ms. Donna Luebke, RN CNP, living donor & living donor advocate did just that. Today, I received an email from her that said the following:

In reviewing information on donor mortality–one article in the NEJM from 2005 by Julie Ingelfinger, MD called “Risks and Benefits to the Living Donor” cites the 0.03% mortality risk but she does not give a reference or source of her data. Just states it. Why did the NEJM reviewers not ask for a source?

 

So I googled and found that this 0.03% mortality was cited in a 2002 U of MN article (Matas). The initial source articles were from 1987 and 1992. If the 1987 article was probably the first and only source — this indicates that there has never been current published mortality rates on any of the data (deaths) in the OPTN database, because UNOS only started collecting living donor data in 1988!!!

This means the data used in the 1987 study is very limited and not comprehensive. In fact, according to the abstract, the reseachers only used information on 8000 living donor nephrectomies conducted in the (then) twelve largest transplant centers in the U.S.

The 1992 Matas study, meanwhile, is based on nothing but phone calls the researchers made to the transplant centers, asking for their mortality rate. The study required no proof, no documentation – nothing. How reliable is that?

By contrast, the OPTN database now contains almost 102,000 living donors, 97,000 kidneys. Why are researchers, surgeons, doctors, public policy organizations, media, and otherwise still using outdated and invalid data from twenty years ago? Why wouldn’t they want to confirm the ‘safety’ of living donation with more recent statistics?

 

Even if the mortality rate is the same – long-term since 1998 or since surgeons have converted to the laparsopic procedure – OPTN’s definition of a ‘donor death’ is that which occurs within 90 days of surgery. In other words, LD suicides or overdoses due to the psychosocial stress of donating (or pre-existing mental illnesses that were overlooked during the evaluation process), or deaths to higher risk of hypertension, cardiac complications or kidney failure will continue to be excluded, providing a much rosier picture of living donation’s success than occurs in reality.

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