Reporting all the angles on organ transplants and improving their odds Date: 09/06/16
By David Wahlberg
After two insurance companies stopped referring patients to the University of Wisconsin Hospital’s kidney transplant program several years ago because of its lower-than-expected success rates, I learned there is much more to organ transplants than feature stories on joyful recipients.
I explored transplant policy last year through an AHCJ Reporting Fellowship on Health Care Performance. I initially thought I would focus on the increasing attention to success rates by private insurers and the Centers for Medicare and Medicaid Services. But while one of my stories touched on that, my research revealed other issues, which I organized into three main themes in a nine-part series for the Wisconsin State Journal:
Where people live has a lot to do with when they can receive a transplant, especially for kidneys and livers. People with money can travel to places with shorter wait times, but this adds a socioeconomic disparity to the inherent geographic disparity.
By using data from the Scientific Registry of Transplant Recipients and the Organ Procurement and Transplantation Network, I helped develop an interactive map that shows the significant variation in access to kidneys and livers around the country. The data, for example, show that access is much more limited in Chicago and Milwaukee than in Madison, where I am based. That fact gave me a local illustration of a national issue to examine.
Ethical Debates in Donation
Donation after circulatory death, an alternative to the more common donation after brain death, is somewhat controversial, although researchers say greater use of the technique could allow thousands more transplants each year. Data from the Association of Organ Procurement Organizations show that Madison’s University of Wisconsin Hospital consistently has one of the highest DCD rates in the country. This data informed another interactive map with my series.
A proposal for “imminent death donation” – recovering organs before life support is removed – is even more controversial. I framed a story about the concept around a patient with amyotrophic lateral sclerosis after UW doctors wrote about his situation while arguing for imminent death donation in The Atlantic.
Living-donor transplant chains have received well-deserved attention in recent years, but the medical risks people face when donating a kidney or part of a liver – and why many of them lose money doing so – seem to be neglected. I reported on studies showing a higher-risk of kidney disease among donors compared to similarly healthy non-donors, and I interviewed living donors who said doctors ignored their complications. I also talked to donors who had to patch together financial assistance packages and second jobs so they could afford to donate to loved ones.
The Organ Procurement and Transplantation Network’s living donor committee has beefed up requirements for informed consent and follow-up of living donors. A work group of the American Society of Transplantation and the American Society of Transplant Surgeons has called for trials exploring incentives for living donors.
Through PubMed and other sources, I reviewed many studies about transplant issues and referenced some of them in my stories. I also read studies referred to me reports and by the researchers I interviewed. The studies involved a range of study designs and types of data.
Transplant policy is intriguing because it is driven more than most medical issues by limited supply and growing demand. There are so many issues to explore. Fortunately, a treasure trove of data is available to inform many of the debates.
David Wahlberg (@davidkwahlberg) has been the health reporter at the Wisconsin State Journal in Madison since 2005. He previously covered health and other topics at the Atlanta Journal-Constitution, Ann Arbor News, San Bernardino Sun and Wausau Daily Herald. His projects on organ transplants, doctor discipline, rural health and patient safety have won top awards from AHCJ and other national organizations.