How we did it: Investigating organ transplant centers

By Charles Ornstein and Tracy Weber
Los Angeles Times

From the Winter 2007 issue of HealthBeat

When the first of the scandals broke in September 2005, we knew little about the insular world of organ transplantation. St. Vincent Medical Center in Los Angeles admitted its doctors had improperly given a liver to a Saudi national using an organ intended for a higher-priority patient on its waiting list – an egregious ethical violation. Staff members subsequently covered it up. The hospital halted its liver program.

Two months later, the liver transplant center at UCI Medical Center in Orange closed the day our newspaper reported that the hospital had been turning down a disproportionately high number of organs as patients died on its waiting list.

What was going on? Was the oversight of transplant centers adequate? Were programs putting their financial health ahead of patient health?

We committed to finding out. Using publicly available – but often obscure – data on two Web sites (www.unos.org/data and www.ustransplant.org), we began looking for trends, patterns and changes that could point to problems.

In early 2006 we began investigating a tip that Kaiser Permanente's kidney transplant program in Northern California was in chaos and could be leaving patients vulnerable to harm. The giant HMO had launched the program – its first – in 2004 and insisted its patients transfer there from established programs at University of California, San Francisco and University of California, Davis.

Kaiser initially contended all was well and refused to share any transplant statistics that would show otherwise. We then requested data from the University of California centers, which showed that the number of transplants performed on Kaiser patients dropped significantly once the HMO took over. (One of those requests was filed under the state's public records act.). In fact, Kaiser had endangered hundreds of patients in its botched start-up, stranding some between programs and postponing critical surgeries for others.

We developed sources inside and outside the program that allowed us to detail the problems in the program and track down the families of patients who died. Our lengthy first-day story was followed by a series of dailies detailing further lapses.

Nine days after our first article appeared, Kaiser announced it would close the program. It subsequently agreed to pay a record $2 million fine to the California Department of Managed Health Care and donate another $3 million to organ donation outreach.

After this series of transplant program failures, we naturally began looking at those responsible for overseeing the quality and safety of the nation's transplant system: the regulators.

In June, we wrote how the U.S. Centers for Medicare and Medicaid Services had failed to uphold its own standards for transplant centers. The agency continued to provide federal funding to nearly 50 transplant centers that failed to meet basic benchmarks for patient survival or for the number of surgeries needed to maintain competency, or both.

To determine this, we reviewed the federal standards and the list of federally funded transplant centers, both on Medicare's Web site. We compiled the latest volume and survival statistics for each of the federally funded centers (see sidebar on transplant data). We found that one in five federally funded transplant centers did not meet the government's standards.

Separately, we reported in October that the United Network for Organ Sharing, a federal contractor charged with overseeing the system's safety and equity, took years to investigate problem centers and then kept its results from the public. We reviewed hundreds of pages of confidential reports and summaries from the group's disciplinary committee and interviewed current and former board members. These documents allowed us to detail the group's secretive disciplinary system, which sometimes allowed years to pass before action was taken against errant programs.

After we inquired about Medicare's lax oversight, the federal government sent out letters to every federally funded transplant program asking for detailed information on survival rates and the numbers of procedures performed. Medicare subsequently pulled funding from two such programs, and a third dropped out under pressure. The agency said a second round of sanctions will follow and it has vowed to keep a closer eye on the performance of the programs it oversees.

The United Network for Organ Sharing has taken action against several transplant programs following our coverage. The group's board also has voiced its dissatisfaction at learning about critical lapses from the Times. It is in the midst of implementing reforms to streamline its disciplinary process and make more of its findings public.

One key for us in these stories was developing a familiarity with transplant statistics and a confidence in analyzing them. Equally important was ensuring that our editors gave us the time to pursue those impacted by the problems – patients and the relatives of those who died. This can be difficult with federal patient privacy laws. But those human sources were critical to connecting what we learned in the numbers to real lives.

Transplantation relies on a public trust – i.e. people donating their organs – so it is vital that the media play a watchdog role to ensure that transplant programs, and their regulators, are acting appropriately.

Charles Ornstein and Tracy Weber, both AHCJ members, were lead writers on an investigative series on Martin Luther King Jr./Drew Medical Center, a troubled hospital in South Los Angeles. The articles won the 2005 Pulitzer Prize for Public Service and several other major journalism awards. Their transplant stories can be found at www.latimes.com/transplants.