Body brokers

Investigative Reporters and Editors, Inc. The IRE Journal, May/Jun 2001 by Campbell, Ronald

From skin and bones to fat profits

One afternoon in September 1999 the medical school at the University of California Irvine made an odd announcement: The school was firing the head of its willed-body program for selling donated spines out the back door.

This wonderfully macabre story attracted a few weeks of media frenzy. By then, The Register and its competitors knew a great deal about Christopher Brown, the young mortician who had run the UCI program. We knew a lot about the people who had willed their bodies to science. We knew how critical donated bodies were to medical education.

What we didn't know was why anyone would pay cash for 80-year-old spines.

Answering that question took six months of reporting, writing and rewriting. In April 2000, we published "The Body Brokers," a five-part series describing how donated skin and bone had become the raw material for a $500 million industry.

Among our findings:

* Nonprofit tissue banks work hand-- in-glove with for-profit processors, often through exclusive contracts. Nonprofits are the industry's public face. For-profits work behind the scenes, turning human tissue into gold.

* Tissue from a single donated human body can generate products worth a combined $222,000.

* Not one tissue bank tells families that their gifts will reap profits for others.

* Some of the for-profits trade on Wall Street and pay top dollar to their executives. As reporter Mark Katches wrote in a story about one such company when it went public: "You can now own a piece of a company that ultimately wants a piece of you."

* The profit motive ensures plenty of cadaver skin for processors while creating a shortage of skin for burn centers. Among the uses for scarce skin: vanity surgery to enhance lips and penises.

* The pressure to get more bodies is so strong that tissue bank employees and researchers occasionally take body parts without asking. A Red Cross employee in Arizona, who was later fired, forged a grieving father's initials on a form authorizing the harvesting of his daughter's bone.

* The Food and Drug Administration, the federal government's watchdog on the industry, doesn't know how many tissue banks exist. Six years after it began regulating the field, the FDA did not yet have a consistent set of standards for tissue banks.

* Although the FDA and the industry claim a near-perfect safety record for tissue products, they aren't looking very hard. We documented the case of a Colorado woman who died from Creutzfeldt-Jakob Disease (aka "Mad Cow Disease"), probably because of a tissue implant.

* Our series prompted the enactment of two laws in the California Legislature in 2000 as well as two reports by the inspector general of the U.S. Health and Human Services Department, FDA's parent. In addition, the main tissue industry association urged its members to make more complete disclosures to donors and conducted a survey of members that confirmed there was a shortage of skin for burn victims.

Not so hidden story

In retrospect, perhaps the most surprising aspect of this oftensurprising story is that no one had done it before. Ads begging for organ and tissue donors are everywhere. Stories about organ donors and recipients are commonplace. Yet again and again, we found ourselves the first reporters ever to visit this tissue bank, the first to see that product being made, the first to ask detailed questions about the industry's finances and operations.

This story was hidden in plain sight.

But finding it wasn't easy. It took the combined efforts of three reporters (five initially), a graphic artist, a photographer and two editors. It also required a collective gut check. None of us wanted to discourage donations of vital organs, which are perpetually in short supply. We suspected - correctly, as it turned out - that we would be accused of doing just that.

Our strategy was to cast the widest possible net - finding and reading every document available on the trade, interviewing every executive who would talk, visiting every tissue bank or processor that would let us in the front door and tracking down dozens of donor families. Documents and interviews led to more documents and interviews. Eventually we would interview more than 300 people and review several thousand pages of documents.

I cannot overemphasize the value of getting - and reading - every document.

Early in our research we combed through the Internal Revenue Service database of nonprofits, identifying every group with "tissue" or "bone" or "skin" or "eye" in the name. That query produced about 100 names. We then asked the IRS for every Form 990 those groups had filed in the preceding five years.

The 990s tipped us to several partnerships with for-profits. We used the SEC EDGAR database to get quarterly, annual and proxy statements for those companies. The SEC forms in turn led us to competitors and yet more SEC documents.

Then we entered highlights from the 990s and SEC documents into a series of spreadsheets.

It was tedious work. But the payoff was profound. The 990s and SEC statements allowed us to document the rapid growth of the industry as well as the pay awarded to its top executives. When we reported that the founder of a small Los Angeles tissue bank was far and away the nation's best-paid nonprofit tissue banker, we had the facts to prove it.