David Wahlberg, a health reporter at the Wisconsin State Journal, is using his yearlong AHCJ Reporting Fellowship on Health Care Performance to focus on how well the organ transplant system is working in Wisconsin. The result has been a revealing look at disparities and access. His project so far has led to stories not only on access issues to liver transplants in Wisconsin and kidneys in Chicago, but also wider geographic disparities across the nation. Here Wahlberg offers AHCJ members tips on how to look at the organ transplantation divide for their readers. – Susan Heavey
When it comes to organ transplants, where people live has a lot to do with when they receive care.
I explored geographic disparities in access to kidney and liver transplants in May in the first part of an ongoing series, “Living On: Improving The Odds of Organ Transplants,” supported by an AHCJ Fellowship on Health Care Performance.
As this interactive map with the series shows, the median wait time for a kidney transplant is more than six years in much of Texas and Pennsylvania but less than 18 months in Mississippi and Nevada.
In addition, a patient must be sicker – with a higher Model for End-Stage Liver Disease (MELD) score – to get a liver transplant in California and New York than in Indiana and Tennessee. Chicago-area patients wait much longer for kidneys than patients in most of neighboring Wisconsin. Within Wisconsin, people must be sicker to get livers in Milwaukee than in Madison, where I am based.
It is likely geographic differences also play a role in who gets transplants near you.
Here are some tips on pursuing stories about geographic disparities in access to transplants:
Data
The Scientific Registry of Transplant Recipients is a treasure trove of data. You can get reports for transplant programs (by organ, including median wait time) and organ procurement organizations from the registry, run by the Minneapolis Medical Research Foundation’s Chronic Disease Research Group. Its transplant program reports provide national center-level summary data. That is where we got the kidney median wait time data for our interactive map. Registry staff were helpful in answering questions by phone and email.
The Organ Procurement and Transplantation Network also has a lot of data. Staff at the United Network for Organ Sharing, the nonprofit which runs OPTN, directed me to online resources and provided additional data. That is how we got the data on median MELD scores at liver transplant for the interactive map.
Data on transplant programs flagged by the government for performance issues, which informed one of my stories, came from the Centers for Medicare and Medicaid Services. I had to be very persistent to get the government information, but CMS eventually produced it.
Patients
Transplant centers connected me with patients who had received transplants, but many centers were reluctant to share names of people who had waited a long time and hadn’t received a transplant. I tried several other places – online support groups, dialysis centers, disease advocacy groups and organ donation groups – which eventually led me to such patients. My tip: Try many approaches.
Doctors
Transplant center doctors near you likely will talk about geographic disparities and proposals to address them, especially for livers. Members of the OPTN/UNOS liver committee can discuss the redistricting proposals they are considering.
Documents
To learn more about geographic disparities and the liver redistricting proposals, read the OPTN/UNOS report released last year and presentations made at a meeting in June, which I covered.
David Wahlberg (@davidkwahlberg) is the health reporter at the Wisconsin State Journal in Madison, where he has worked since 2005. His projects on doctor discipline, rural health care and patient safety have won awards from AHCJ and other national organizations. He is completing a yearlong AHCJ Reporting Fellowship on Health Care Performance.
