Living organ donor narratives

Cristy Wright donated a kidney to her sister three years ago, and it went badly. Her sister was back in surgery within 24 hours of the operation, and within a week, the kidney--which she had affectionately nicknamed Trixie--had to be removed and thrown away. She sought support, but when she talked to her surgeon, he never acknowledged her loss or referred her for counseling. Her Living Donor Coordinator never returned her call.

Cristy feels betrayed by a medical system that should have been there to protect her. She never received adequate information about the risks of transplant surgery, even though she at one of the best hospitals in the country. She suffers from post-traumatic stress disorder. In an attempt to better inform other donors, she started the website www.livingdonors101.com (which offers useful, though IMO gratuitously negative, information about the risks of donation).

I came across Cristy's story in a recent symposium on first person narratives of living organ donation (though we've encountered each other before*) in the journal Narrative Inquiry in Bioethics (i.e. the editors compiled a number of first person narratives from living organ donors and published them all together in this issue of the journal). As I began reading about the donor's experiences, I was blown away by how negative they were. A brief litany of horrific experiences (far from exhaustive):

• A 59-year old man donated a kidney to his 68-year-old husband, and then had to take care of him while they both were recovering from surgery. That is no mean feat, especially at their ages. At one point, they had to spend thousands of dollars out of pocket to purchase the drugs they both needed because there was some problem with their insurance.
• A woman donated to her brother, but like Cristy's the transplant was unsuccessful and had to be removed within a week or surgery. She had been under the mistaken idea that her kidney would be able to be used for research, and was devastated to learn that it had to be thrown out.
• A woman donated to a former lover and boss. Six months after surgery, when she went back to the transplant center to complain about her permanent nerve damage, she found out that 10% of their donors ended up with nerve damage like hers, and a few months later, they voluntarily shut down their transplant program because of "adverse events." She now suffers from chronic kidney disease and depression.

Who were these people, and how come I had never heard of them? I've talked to 9 other (living) kidney donors, and none of them had experiences anywhere near this bad. (And the living liver donation narratives were even worse, but I know far less about that...)

Disruption in the nonprofit sector, or, why the next CEO of Guidestar has a great opportunity

Note: there are bunch of relevant disclosures at the bottom of this post.

On Monday, "philanthropy wonk" (and PACS Visiting Scholar) Lucy Bernholz blogged about a proposal in the Knight News Challenge which is aiming to digitize and make public IRS 990 tax forms. These are essentially the only public records on charities, and they cover basics like, "How much do you spend on programs and fundraising? How much was the CEO paid?" (CharityNavigator, the organization everyone thinks I work for when I mention GiveWell, uses the data from these 990 forms to rate the financial performance of charities.) Lucy and I had a Twitter exchange about her post that got me thinking, and I wanted to expand on it a little bit.

A note about the proposal in question: Carl Malamud, who was apparently responsible for getting the SEC to provide corporate filings free online, proposes a $500,000 or $600,000 budget for a project to "Put 10 years of IRS Form 990... online in bulk, [and] extract 75 million fields of data." Lucy commented, "Look at the price tag - $600K - amazing to think what could be done for such little money."

What I initially said to Lucy was, "couldn't GuideStar just do this overnight?" GuideStar is the current hub for nonprofit financial information; they digitize hundreds of thousands of 990s a year and serve as the data backbone for a variety of different initiatives in the sector. Lucy responded by pointing out that (a) they haven't yet, and (b) it would be counter to their business model to do so.

The Mathematica Evaluation of Charter Middle Schools

The most rigorous study yet on the average impact of charter schools came out in June 2010. I remember that study, which just about everybody else in the world seems to have forgotten, because for the past two years it has been the thing I pointed to when I said that I wanted to start blogging.

I now find myself in the unfortunate position of writing my first blog post on this study, having found this morning that the press reception to it at the time was pretty much crickets. The most extensive article on the evaluation was a brief piece from CSM.

Anyway, the authors of the study emphasized that the average effect of the charter schools was zero, but with significant heterogeneity: charter schools that served poor kids in urban areas were far more likely to improve their test scores, while charter schools that served wealthy suburban kids tended to have negative effects on their test scores. The pretty clear interpretation of this is that charter schools serving poor kids are better than charter schools serving rich kids.

The point I've been wanting to make for the last two years (aren't you just waiting with baited breath?) is that the study doesn't show that at all. Your faithful correspondent was one of the half-dozen people lucky enough to be sitting in a webinar in July 2010 to find that out.