Tag Archives: liver failure

Coincidence leads to remarkable transplant story

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.

Hep C emerges from dormancy to hit baby boomers

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.

Newsweek‘s Sarah Kliff looked into hepatitis C, a virus which can be dormant for decades then emerge to cause liver fibrosis and cirrhosis. It affects between 2.7 million and 3.9 million Americans, two-thirds of them baby boomers.

The virus is transferred through contact with infected blood, typically through intravenous drug use or transplants or blood transfusions that occurred before 1992, the year when officials started screening blood for the disease. Because it can remain dormant for so long, many boomers who contracted the disease during their free and easy youth are just starting to show symptoms.

“Even though Boomers moved on with their lives, they could be living with an infection that happened many years ago,” says John W. Ward, division director for the Center for Disease Control’s Division of Viral Hepatitis. “Now, they’re aging into a period of their lives when Hepatitis C could become manifest through physical symptoms.” One study published last May estimates that, in the next 20 years, total medical costs for Hepatitis C patients will nearly triple, from $30 to $85 billion.

Many don’t even know they have the disease, and Kliff writes that general public awareness is lagging.

Despite affecting 1 percent of the population, hepatitis C remains a disease generally misunderstood by the general public with little in financial commitments from the federal government. The CDC’s National Center for HIV/AIDS, Viral Hepatitis, Sexually Transmitted Diseases, and Tuberculosis Prevention had a budget of almost $1 billion for 2008. Only 2 percent of that was allocated to hepatitis B and hepatitis C despite both viruses being five times more prevalent.

Because of the stigma associated with a virus often linked to drug use that causes symptoms (chronic liver disease) often associated with alcohol abuse, officials have found it tricky to convince now-affluent and settled boomers to come to terms with their wild past and acknowledge that they may have exposed themselves to the virus. To get past those barriers, officials have even considered comprehensive age-based screening requirements, Kliff writes.

The CDC is considering a blanket, age-based screening recommendation. “We’re launching studies to see if it’s feasible and makes sense,” says Ward, the CDC official. “Just like everyone over 50 should have a check for colon cancer, it might fit into an age-based checklist of preventative services.”

Related

From the Institute of Medicine: Hepatitis and Liver Cancer: A National Strategy for Prevention and Control of Hepatitis B and C (PDF)

Organ network looks to address regional disparities

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.

American Medical News‘ Kevin O’Reilly writes that, spurred on by attention paid to Apple boss Steve Jobs’ trip to Tennessee to take advantage of shorter liver transplant waiting lists, the United Network for Organ Sharing (which has a government contract to run the country’s Organ Procurement and Transplantation Network) will meet in the spring of 2010 to address socioeconomic and regional variations in access to donated organs (see a graph of regional waiting list sizes here).

clocks
Photo by futureatlas.com via Flickr

Jobs did not break any rules, experts say, but he did use his resources to take advantage of an imperfect system. One of the biggest problems? Multiple listings, in which one wealthy patient hops on waiting lists across the country and plays the odds to get the fastest-possible transplant. In what may be an obstacle to reform, some argue that multiple listing is a reasonable practice used by rich and poor alike. Additionally, others say that regional differences in transplant wait times reflect more than just differences in access to health care; they also reflect the high cost of transporting live organs and differing regional success rates in encouraging new donors and standards for harvesting organs.

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FDA weighs tougher warnings for acetaminophen

About Scott Hensley

Scott Hensley runs NPR's online health channel, Shots. Previously he was the founding editor of The Wall Street Journal's Health Blog and covered the drug industry and the Human Genome Project for the Journal. Hensley serves on AHCJ's board of directors. You can follow him at @ScottHensley.

When it comes to acute liver damage, acetaminophen, the painkilling ingredient in Tylenol, is a bigger hazard than alcohol.

acetaminophen1

Photo by sun dazed via Flickr

Some 56,000 Americans end up in the ER each year as a result of the drug, a ubiquitous ingredient in over-the-counter cough and cold remedies and also one half of the most prescribed medicine in the United Stateshydrocodone-APAP.

So the Food and Drug Administration, which has ratcheted up warnings about acetaminophen’s risk in recent years, is holding a two-day meeting seeking advice on what to do next.

For consumers, a big part of the problem is that taking even a little more than the highest recommended daily dose (4 grams for adults) can lead to serious liver damage.

About half the nearly 500 annual cases of liver failure linked to acetaminophen are accidental. It’s easy to overlook the total dose of acetaminophen when taking a pain pill and a combination medicine, for instance.

One option would be a ban on combination drugs, like Theraflu and NyQuil. Makers of over-the-counter drugs say prescription-strength medicines containing acetaminophen account for most of the problems.

The outcome of the meeting will be “an important first test of the FDA’s new power to impose risk evaluation and mitigation strategies on manufacturers of widely used drugs that pose a small but distinct public health threat when misused or abused,” writes FDA-watcher Merrill Goozner on the blog GoozNews.