Tuesday, April 6, 2010

State Report Card for Organ Donation


I was actually a bit shocked when I saw this article. 1/2 of our states do not even have a proper sign up process or web access (What rock has the state that doesn't have a web sign-up page been hiding under?) Anyway, I thought I would post the report card.... California isn't even on the top 20 states. Louisiana is the 20th with just over 55% of their licensed drivers registered heroes... errr donors. Wow!! That is pretty sad. And I always thought us Californians were soooooo cool!



 Process May Contribute to Low Organ-Donor Rate
When I started thinking about writing about New York State’s exceptionally low number of registered organ donors — 13 percent of people 18 and older — I remembered that I had never signed up on the official registry to designate myself a donor. So I went online, assuming I would be able to click somewhere quickly, and was delighted at the prospect. How many virtuous impulses can you act on in the amount of time it takes to order staples from Fresh Direct?
Except that it was nowhere near as easy as getting broccoli delivered to my door. I had to print out a form and mail it. But my printer was broken. So I figured I would get to it at the office. (Note to self: bring a stamp.) I glanced at the form. What, specifically, did I want to donate, it wanted to know: Bone and connective tissue? Heart with connective tissue? Pancreas with iliac vessels? The next thing I knew, I was on freshdirect.com, perusing overpriced prepared foods and wondering if there was a Twitter feed highlighting specials. My thoughts could not drift quickly enough. A therapist might call it dissociating; my 8-year-old nephew’s technical term would be “grossed out.”
Were I not writing about the subject, I would quite likely have avoided it forever — which puts me in good (or, I should say, equally flawed) company, said Elaine Berg, president of the New York Organ Donor Network. In her opinion, the snail-mail process is a major barrier to increasing New York’s low rate of registration. All but 5 of the 49 states that have organ donor registries — Vermont is the holdout — allow for an electronic signature. That enumerated list of donation options is another hurdle. “It even turns me off,” Ms. Berg said. “It becomes a visual.”
Only four states rank lower than New York on the recently released national report card from Donate Life America, a national advocacy group.
It’s bad enough that New York, with all of its financial resources and brainpower, often cannot seem to get its act together to tackle the hard problems, like fixing schools or reducing health care costs or balancing a budget; but when this unusual collection of talent and creativity cannot handle the no-brainers, you really start to worry.
Ms. Berg has been working with the State Department of Health for years to make progress on an electronic signature, and a bill that would enable one is finally wending its way through the Legislature.
But the department maintains that the enumerated list is the best way to meet the requirements of the legislation governing the registry, which was established in 2000 but became binding in 2008. The law states that “the registry shall provide persons enrolled the opportunity to specify which organs and tissues they want to donate.”
So let them, Ms. Berg said. As many other states do, give would-be donors a blank space in which they can specify, or give them two options: “All” and “Everything except (blank).” As a journalist, I’m all for full disclosure, except for full disclosure about the gory details of a gesture I’d like to make regarding my organs in the event that I end up brain-dead on a respirator.
It’s amazing how a matter of marketing can mean so much for a matter of life and death. In the downstate region of New York, which includes the city, Long Island and the five counties immediately north of the city, Ms. Berg said, 8,000 people are waiting for organs.
In the downstate region, about 600 people die a year under circumstances conducive to organ donation (the typical qualifying donor is a middle-aged stroke victim); in these emergency circumstances, New York has around a 50 percent consent rate — much better than the 13 percent on the official registry, but still below the 67 percent rate nationally.
And yet cynicism plays in: New Yorkers are more likely than the average American to think doctors put less effort into saving the lives of organ donors, Donate Life America reports.
Also, the state’s cultural diversity clearly makes it hard to get the message out and understood. But the numbers on the registry are still surprising, considering it’s a region with such high organ donation needs, with obesity rates creating demand for kidneys and hepatitis-C rates doing the same for livers.

I resolve to reconcile my stamp and broken-printer problems, but until then, let the record show: Doctors, take my organs, please. Even my iliac vessels. Eww.

E-mail: susan.dominus
@nytimes.com

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