Tag Archives: organ donation

New tip sheet examines issues surrounding brain death

Liz Seegert

About Liz Seegert

Liz Seegert (@lseegert), is AHCJ’s topic editor on aging. Her work has appeared in NextAvenue.com, Journal of Active Aging, Cancer Today, Kaiser Health News, the Connecticut Health I-Team and other outlets. She is a senior fellow at the Center for Health Policy and Media Engagement at George Washington University and co-produces the HealthCetera podcast.

Photo: Indi Samarajiva via Flickr

Photo: Indi Samarajiva via Flickr

Are there different levels of death? Are you alive if you’re brain dead but on life support?

Many journalists and members of the public are unclear about the nuances of brain death. According to this new tip sheet from author and researcher Alan Cassels, this confusion directly affects issues such as organ donation rates.

Cassels notes that while a patient’s organs can be “kept alive” while awaiting transplantation, brain death is legally the same as cardiopulmonary death – death is death. It matters because the organ donor transplant list keeps growing. Continue reading

Maine journalists wrestle with distinguishing news from promotion in medical crowdfunding

Joseph Burns

About Joseph Burns

Joseph Burns (@jburns18), a Massachusetts-based independent journalist, is AHCJ’s topic leader on health insurance. He welcomes questions and suggestions on insurance resources and tip sheets at joseph@healthjournalism.org.

Troy R. Bennett/BDNWhen Maine resident Christine Royles went to the Internet to pay for a kidney transplant, her crowdfunding campaign also raised ethical concerns for a local newspaper.

Troy R. Bennett/BDNWhen Maine resident Christine Royles went to the Internet to pay for a kidney transplant, her crowdfunding campaign also raised ethical concerns for a local newspaper.

When the health insurance system fails — as it does too often — patients in need frequently turn to crowdfunding to raise cash to cover their medical expenses. Most such requests are so loaded with pathos and emotion that stories about them often end up on Page 1.

But when Jackie Farwell, enterprise editor for the Bangor Daily News, wrote about a young mother from South Portland, Maine, who needed a kidney donation, she also delved into some of the ethical questions involved when media cover crowdfunding campaigns. Continue reading

Kidney swap connects six in small Mo. town

Andrew Van Dam

About Andrew Van Dam

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism.

lickingJoy Robertson of KOLR-Springfield, Mo., tells the story of the coincidences and generosity that led to six residents of Licking, Mo., (population 1,471) swapping kidneys in a St. Louis hospital. Here’s a quick timeline, to give you an idea of how it all came together.

  1. Licking resident Stephanie Hood needed a kidney.
  2. Friends Randy and Melissa Lewis wanted to donate one for her, but neither was a match.
  3. Randy decided to donate his kidney anyway.
  4. Carrie Goforth, a 29-year-old Licking mother on dialysis, was a match for Randy.
  5. Meanwhile, Melissa Lewis decided to donate her kidney as well.
  6. Hers went to Gern Beasley, another Licking resident.
  7. Finally, Stephanie Hood, the patient who started it all, also got the kidney she needed. Her donor? Her cousin Diane. From Licking.

Reporting on kidney donation

Josephine Marcotty of the Minneapolis Star Tribune recently wrote a series addressing the increasing demand for kidneys, a need spurred by an aging population, increases in diabetes, obesity and high-blood pressure. In a recent AHCJ article, she explained how the story came together and how other reporters can follow in her footsteps and expand upon her work.

Coincidence leads to remarkable transplant story

Andrew Van Dam

About Andrew Van Dam

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism.

Last month, Salt Lake Tribune reporter Heather May was following a family as they waited for the liver donation that would ensure their 13-month-old daughter’s survival. The infant’s mother, Liz Badger, struggled with the unavoidable fact that the donor her daughter so desperately needed would likely be somebody else’s dead child.

At the same time her co-worker, Erin Alberty, was reporting on a 12-year-old girl, Ashley Maynard, on life support. That child’s mother hoped she would slip away in such a manner that her organs could go on to save as many other children as possible.

That’s when, as the reporters watched from the sidelines, the two stories came together. It’s a deep look at transplants, donors and ethics made possible by luck and thorough reporting. For an inside-the-newsroom look at how it all came together, I e-mailed May. Here’s her response:

After reading Liz Badger’s blog, I wanted to write a story about one family’s experience waiting for a transplant, never imagining the story we would get.

I started following the Badger family Jan. 5 — which happened to be the day that Ashley was struck by a car, though of course we didn’t know that until later. So I was with Liz as she spoke about waiting for another child to die as Ashley was in the hospital.

I was with the Badgers during their weekly doctor’s appointment while Ashley was literally down the hall on the same floor in the hospital, again, unknown to us.

On Jan. 14: Liz called me to say they were headed to the hospital for the transplant. Hours later, Ashley’s father called our newsroom to tell Erin Alberty that his daughter was going to be taken off life support and would become an organ donor. Erin had not been following the family, but the paper had written a brief about Ashley having been hit a week earlier while waiting for the bus. Her father called to update the paper about her condition.

At that point, the paper figured that Ashley was going to be LuLu’s donor, but we couldn’t ethically link the two families. I considered attending the funeral with Liz and James with their permission. But after consulting with an ethicist at Poynter, the paper decided I shouldn’t go: We couldn’t tell Ashley’s family that the reason we wanted to attend was because we thought Ashley was likely LuLu’s donor and that we wanted to watch as the families met.

Later, I got permission from Camie to talk to Ashley’s doctors about Ashley’s care. I recreated the hospital and funeral scenes from interviews. I was there when Camie met LuLu for the first time.

Addressing the growing demand for kidneys

Pia Christensen

About Pia Christensen

Pia Christensen (@AHCJ_Pia) is the managing editor/online services for AHCJ. She manages the content and development of healthjournalism.org, coordinates AHCJ's social media efforts and edits and manages production of association guides, programs and newsletters.

Josephine Marcotty of the Minneapolis Star Tribune recently wrote a series addressing the increasing demand for kidneys, a need spurred by an aging population, increases in diabetes, obesity and high-blood pressure. KidneyShe found that it is a public health crisis that costs the nation $33.6 billion a year, and there is no end in sight.

Marcotty covered one woman’s search for a kidney, the ethics of paired donations and how the medical center decided who would get organs.

In this article for AHCJ members, she shares what she learned about kidney donation and how she reported the story.

Related

‘Kidney pirates,’ organized crime and health care

‘Kidney pirates,’ organized crime and health care

Andrew Van Dam

About Andrew Van Dam

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism.

In a recent episode of HDNet’s Dan Rather reports, the journalist criss-crossed the globe alongside an academic/activist and others trying to trace the international black market for human kidneys (PDF transcript).

Rather and his crew pieced together the path a kidney would have taken, all the way from a tiny, desperate Moldovan village (where furious villagers once attempted to lynch the woman who’d lured about 40 young men to Turkey with promises of work, then sent them home minus a kidney) to brokers like Levy-Izhak Rosenbaum, the New Yorker arrested for his alleged role in matching live donors to ailing patients.

While hard numbers are difficult to pin down in the ‘kidney pirate’ universe, Rather says black-market transplants like these are a growing problem, citing anecdotal evidence and a 2005 WHO report that found that a tenth of kidney transplants were arranged through the black market. Another reason for the black-market organ boom, Rather finds, is the emergence of new anti-rejection drugs that make it possible for almost anyone to give a kidney to anyone else.

kidney

Image from Wikimedia Commons

With more than 83,000 people waiting for kidneys in the United States alone, the potential benefit to patients is evident (though far from guaranteed, as Rather makes clear in the second half of the piece). The benefit to the donors is much more questionable.

While buyers spend up to $200,000 for a kidney, most of the money goes to a web of middlemen. Everyone from brokers to rogue surgeons, to bribed police and corrupt customs and border officials… all the average seller gets out of the deal, if he’s lucky, is about $3,000… and a tell-tale scar.”

For more on the price paid by the donors, Rather talked to well-known University of Pennsylvania bioethicist Arthur Caplan, Ph.D., who advocates criminal penalties for doctors who turn a blind eye to donors with dubious backgrounds as long as it saves their patient’s life.

If you say you are going to sell a kidney, coming from a poor village or a poor nation, nobody looks out for your health or your interest once that kidney’s out of your body. They toss you aside like an old piece of Kleenex. They don’t care. So you’re getting infections, you’re getting bleeds. You’ve got all kinds of problems going on, it’d be pretty easy to manage if you were getting followed post donation in an American or European hospital or in a developed country. You go back as a poor person who has sold their kidney, you’re in trouble.

The web of organized criminals matching donor to patient often centers in Istanbul, an international hub for illicit donations. The Turkish organ donation racket was pioneered by Yusuf Sonmez, a talented surgeon with questionable ethics and a knack for avoiding punishment. Somnez has recently been driven out of Turkey, but word on the street is that he’s still operating with impunity out of Azerbaijan.

There are signs in Istanbul that police are finally cracking down. … Turkish police rounded up more than 40 alleged kidney traffickers, but authorities here are still fighting an uphill battle against an insatiable global demand for kidneys. And it’s not just Turkish doctors. Rather even cites a recent incident in which a donor and patient hooked up through Craigslist, went to a Los Angeles hospital for the transplant, and apparently exchanged $25,000 in a restroom or hallway after the operation.

In the course of the story, Rather also visits Israel, another organ trafficking hotbed, and examines the toll the trade is taking up on patients as well as donors.

Related

Addressing the growing demand for kidneys

Josephine Marcotty of the Minneapolis Star Tribune recently wrote a series addressing the increasing demand for kidneys, a need spurred by an aging population, increases in diabetes, obesity and high-blood pressure. KidneyShe found that it is a public health crisis that costs the nation $33.6 billion a year, and there is no end in sight.

Marcotty covered one woman’s search for a kidney, the ethics of paired donations and how the medical center decided who would get organs.

In this article for AHCJ members, she shares what she learned about kidney donation and how she reported the story.