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Ethics, Events, Health Policy, Medicine and Society, Public Health, Transplants

Stanford Health Policy forum on organ-donation crisis now available online

Stanford Health Policy forum on organ-donation crisis now available online

The latest Stanford Health Policy Forum, which focused on ways to end our country’s organ-donor shortage, is now available online. More than 100,000 Americans currently need organ transplants, and the panelists discussed a variety of solutions for solving the problem. Among the ideas brought to the table was a compensation system for donors – an option that was also the focus of an article in today’s San Francisco Chronicle.

Previously: At Stanford Health Policy Forum, panelists dig into the issue of organ donationHow can we end the donor organ shortage?, Stanford visiting professor and founder of kidney-exchange program wins Nobel economics prize and One gift saves three young lives 

In the News, Pediatrics, Stanford News, Surgery, Transplants

Parents’ heroic effort help 12-year-old daughter receive a new heart and lungs

Parents' heroic effort help 12-year-old daughter receive a new heart and lungs

Fewer than 10 children received a heart-lung transplant in the United States last year. One of them was 12-year-old Katie Grace Groebner, who was diagnosed with pulmonary hypertension in 2008 and given a year to live.

Determined to save their daughter’s life, Katie Gracie’s parents sold their house in Minnesota and most of their belongings and moved to the Bay Area so she could be treated by Jeffrey Feinstein, MD, director of the Center for Pulmonary Vascular Disease at Lucile Packard Children’s Hospital Stanford.

As reported in the NBC Bay Area segment above, the Groebners understandably call Katie’s doctors and nurses “heroes,” but Feinstein says it’s the other way around. “You want to find a hero? Talk about the parents,” he says in the video. “If you look at the amount of work that I did, compared to amount of work Katie Grace’s parents did? There’s no comparison.”

Previously: Living long term with transplanted organs: One patient’s story, Stanford study in transplant patients could lead to better treatment, Anatomy of a pediatric heart transplant and ‘Genome transplant’ concept helps Stanford scientists predict organ rejection

Ethics, Events, Health Policy, Stanford News, Transplants

At Stanford Health Policy Forum, panelists dig into the issue of organ donation

At Stanford Health Policy Forum, panelists dig into the issue of organ donation

Sally Satel, MD, was a practicing psychiatrist with a long history of scholarly research and policy-making in health care when a diagnosis of kidney failure popped her across the line that separates doctors from patients. Without a transplant or dialysis, the 16 percent of function left in her kidneys wouldn’t last long, and she became one of the 60,000 people in the U.S. waiting for a deceased donor kidney. That was in 2004.

One decade later, there are more than 100,000 people on that list. Last year, according to the National Kidney Foundation, just over 14,000 people received donated kidneys, a number that has remained flat since 2007. About 18 people die every day waiting on the list; another 12 are taken off the list daily because they have become too sick to survive transplant surgery. Satel was lucky – an acquaintance volunteered after others had bowed out – and Satel did receive a life-saving kidney transplant.

We need a transparent, safe and ethical system of exchange

From that unexpected experience, Satel wrote a book, ‘When Altruism Isn’t Enough: The Case for Compensating Kidney Donors,” to highlight the shortage. She also became a vocal advocate for changes in the organ donation system that could improve those increasingly dire numbers. This week, she joined a couple of thousand health professionals and interested others at the 2014 World Transplant Congress in San Francisco and also came here to participate in a Stanford Health Policy Forum on organ donation. She spoke alongside David Magnus, PhD, director of the Stanford Center for Biomedical Ethics, and Tom Mone, former president of the Association of Organ Procurement Organizations.

The forum was hosted by the office of Lloyd Minor, MD, dean of the medical school. “Our Health Policy Forums were created to serve as a platform for experts from Stanford and across the globe to discuss important and sometimes controversial medical topics,” he said in a post-event interview. “Our hope is that fostering dialogue on issues of critical importance to our clinicians and patients will take us one step closer to developing solutions.”

At the forum, moderator/Stanford professor Keith Humphreys, PhD, began the conversation by asking Satel what it was like being on the waiting list. “It was extremely difficult,” she answered. “You’re really put in a position of facing years of dialysis (and the wait for a deceased donor kidney) can be five years. In Los Angeles, it’s almost 10 years. The average person doesn’t survive that long.” Asking friends and family isn’t easy either, she said: “You are asking someone to give you a body part.”

Satel has proposed a system of rewards – “not, a check, but some sort of in-kind incentive like a contribution to a charity or a 401k,” she said. “We need a transparent, safe and ethical system of exchange.”

The ethics of such a compensation system is what worries Magnus, who told the audience:

Every time we’ve drawn a line — ‘Here’s what we think is acceptable’ — [it’s] almost always been erased and moved somewhere else… Because of the incessant drumbeat of need, there’s a tendency to move and move the line, and maybe those moves are okay and appropriate, but it makes the slippery slope very, very, very steep. We have had only two absolutes: the rule that prohibits taking organs while people are still alive and the prohibition of payment. Both of these principles are now under attack.

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Ethics, Events, Health Policy, Stanford News, Transplants

How can we end the donor organ shortage?

How can we end the donor organ shortage?

organ donorOur country’s organ shortage is an issue of critical importance – especially to the more than 100,000 Americans currently waiting for an organ transplant. In the words of Stanford’s Keith Humphreys, PhD, “Everyone agrees that 18 people dying each day on transplant waiting lists is unacceptable, but there is fierce disagreement about what to do about it.”

Next week, Humphreys will moderate a panel discussion that delves into the issue. He’ll be joined by three experts – including Stanford bioethicist David Magnus, PhD – who will discuss the effect of the organ donation on our country’s overall health and debate the ethical and practical aspects of proposals to solve the problem. Among the most controversial proposed approach and something that will be vigorously debated: paying people to donate their organs.

The event, part of Stanford’s Health Policy Forum series, will be held on July 28 at 11 AM at the Li Ka Shing Center for Learning and Knowledge, in room LK130. For those local readers: It’s free and open to the public, but space is limited. More information can be found on the forum website.

Previously: Students launch Stanford Life Savers initiative to boost organ donation, Full-length video available for Stanford’s Health Policy Forum on serious mental illness, Stanford forum on the future of health care in America posted online and Stanford Health Policy Forum focuses on America’s methamphetamine epidemic
Photo by Mika Marttila

Ethics, In the News, Research, Transplants

Physicians more likely to become organ donors, Canadian study finds

Physicians more likely to become organ donors, Canadian study finds

When receiving advice from a physician, one might wonder what the doctor would choose for him- or herself. Recently we discussed here a study on doctors’ preferences for their own end-of-life care. Now, a study published in the Journal of the American Medical Association has reported on physicians’ views and behavior surrounding their own organ donation.

As a news@JAMA piece reports on the Canadian study, physicians are nearly 50 percent more likely than non-physicians to register as an organ donor. More from the piece:

Despite waiting lists for organs in many countries, the percentage of individuals registered in national organ donation registries in most countries is below 40%. The United States fares a bit better than average, with 48% of adults registered as organ donors.

Concerns about organ donation have led to lower-than-average rates of registration in Ontario, Canada, where only about 25% of adults have registered. Currently, there are more than 1500 people on transplant waiting lists in Ontario.

Study author Alvin Ho-ting Li, BHSc, a PhD candidate at Western University in Ontario, Canada, discusses the study’s purpose and findings further in a Q&A section of the piece.

Previously: More on doctors and end-of-life directivesStudy: Doctors would choose less aggressive end-of-life care for themselvesStudents launch Stanford Life Savers initiative to boost organ donation and Family ties: One sister saves another with live liver donation

Pediatrics, Stanford News, Transplants

How mentorship shaped a Stanford surgeon’s 30 years of liver transplants

How mentorship shaped a Stanford surgeon's 30 years of liver transplants

Carlos Esquivel - OR_560

This year, pediatric liver transplant surgeon Carlos Esquivel, MD, PhD, is celebrating the 30th anniversary of his first liver transplant and his long career as a innovator of transplantation for tiny, fragile babies. When I was researching a story to mark the milestone, I wondered what led Esquivel to perform his very first transplant back in 1984.

As my story describes, a high-powered mentor shaped Esquivel’s career:

Near the end of his surgical residency at UC Davis, [Esquivel] realized that his planned career in vascular surgery would not challenge him enough. He sought a fellowship with the University of Pittsburgh’s Thomas Starzl, MD, PhD, who had performed the first successful human liver transplants a few years before and was refining the difficult, esoteric procedure. Soon, Starzl guided Esquivel through a transplant on a man with acute liver failure who had come to the hospital in a deep coma. The operation went well. Two days later, the patient awoke.

“Once I saw that — somebody who was at death’s doorstep waking up — it was unbelievable,” Esquivel said. “I never looked back.”

The background to that first surgery, which didn’t make it into my story, is quite interesting. When Esquivel arrived in Pittsburgh, Starzl’s team was conducting 300 liver transplants per year, sometimes several in a day. Esquivel was one of 40 fellows vying to learn the procedure. Surgeons operated with crowds of these apprentices peering over their shoulders.

Liver transplant was tricky. Because the liver performs many unique functions, including filtering toxins and secreting essential proteins into the blood, the patients were very ill.

“They’re some of the sickest patients in the hospital,” Esquivel told me. “When the liver doesn’t work, the blood doesn’t clot.” During transplant, patients could lose significant amounts of blood.

Esquivel was fortunate: As he described it, Starzl quickly took a liking to him. Many fellows were in Pittsburgh for a long time without being allowed to operate, but just three months after Esquivel arrived, Starzl said “Carlos, you are going to do your first liver transplant.”

Esquivel’s first-time jitters were mild until he learned that his patient was also a surgeon, a young surgical resident who had contracted acute hepatitis through a needle-stick injury. The man’s liver was failing fast. He came to the hospital on a respirator, in a deep coma. Despite Esquivel’s anxiety the procedure went smoothly – so well that, when the patient woke up, he was hungry.

“Even still hooked up to the respirator, he was asking what there was for breakfast,” Esquivel said, adding the comment I quoted above about his amazement at seeing the awakening of someone who had been at death’s doorstep. With Starzl’s guidance, Esquivel went on to tackle the toughest liver transplants with aplomb, eventually saving the lives of many babies and young children whom other surgeons turned away.

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Patient Care, Stanford News, Transplants

Living long term with transplanted organs: One patient’s story

Living long term with transplanted organs: One patient's story

Organ transplant has been a life-saving option for decades now, but its science is still evolving. One of the most pressing questions is why some people with transplants surpass the standard expectations. I recently spoke with David Weill, MD, director of Stanford’s Center for Advanced Lung Disease, and Bruce Reitz, MD, the Stanford physician who performed the first successful adult heart-lung transplant in 1981, about one patient who has definitely exceeded expectations.

Steve Rasmussen was a 28-year-old Santa Cruz resident when cystic fibrosis finally claimed his lungs in 1988. The best solution then was a heart-lung transplant. Twenty-six years later, Rasmussen is now celebrating the 25th anniversary of his transplant – and his remarkable record of transplant longevity. (Earlier this year, Stanford’s lung transplant program hit a milestone of its own, marking its 500th adult transplant.)

As I wrote in my article about why Rasmussen has survived so long:

Reitz knows that Rasmussen’s transplant longevity is unusual. He thinks that it might be related to some kind of difference in Rasmussen’ immune system. Another possibility is the combination of a particular donor and a particular recipient. “Frankly, we don’t have any real clue what it is about the long-term survivors that has given them this tremendous gift,” Reitz said.

There’s more in the video above.

Previously: Life-threatening diagnosis leads to powerful friendship for two California teensA story from the edge of medical possibility: Operatic soprano sings after double lung transplant and Celebrating the 30-year anniversary of the world’s first lung-heart transplant

Cardiovascular Medicine, Genetics, Research, Stanford News, Stem Cells, Transplants

Stem cell medicine for hearts? Yes, please, says one amazing family

Stem cell medicine for hearts? Yes, please, says one amazing family

SM image of bird and heartRecently, a medical situation with one of my children had me gnawing my fingernails and laying awake at night waiting for scary-sounding test results. Thankfully, my growing anxiety was relieved after several days by a reassuring phone call from our doctor. Unfortunately, the health concerns of the stars of my most recent magazine story - the Bingham family of eastern Oregon – are not so easily dismissed.

Three of the five Bingham children have a heart condition called dilated cardiomyopathy; two of the three (14-year-old Sierra and 10-year-old Lindsey) have already had heart transplants at Lucile Packard Children’s Hospital Stanford. Their parents, Jason and Stacy, were gracious enough to share their family’s story with me for my article in our most recent issue of Stanford Medicine magazine.

Heart transplants are life-saving, but they come with a lifetime of medication and monitoring. Many physicians feel that cardiac medicine is on the cusp of a revolution – one in which the power of stem cells will be harnessed to help hearts heal themselves, or perhaps even to grow new, perfectly matched organs for transplant. The California Institute for Regenerative Medicine has awarded more than $120 million to pursue potential therapies. No matter how fast any advances occur, however, they can’t come soon enough for the Bingham parents, who are now anxiously monitoring 5-year-old Gage’s battle with the same disease that led to his sisters’ transplants.

At the same time, physicians at the Stanford Center for Inherited Cardiovascular Disease are searching to find the (presumably) genetic cause for the Bingham family’s heart problems through gene sequencing while researchers in the laboratory of Stanford cardiologist and director of the Stanford Cardiovascular Institute Joseph Wu, MD, PhD, work to create induced pluripotent stem cells from the family to better understand the molecular basis of their illnesses.

I’ve been thinking a lot about Jason and Stacy this past week while I faced my own fears for my daughter. I cannot comprehend how strong they have to be for their children. And, although I work daily with many amazing doctors and researchers, I have to say that Jason and Stacy (and other parents like them) are my true heroes.

Previously: Mysteries of the heart: Stanford Medicine magazine answers cardiovascular questions, At new Stanford center, revealing dangerous secrets of the heart and Packard Children’s heart transplant family featured tonight on Dateline and
Illustration, which originally appeared in Stanford Medicine, courtesy of Jason Holley

Cardiovascular Medicine, Research, Stanford News, Technology, Transplants

Mysteries of the heart: Stanford Medicine magazine answers cardiovascular questions

Mysteries of the heart: Stanford Medicine magazine answers cardiovascular questions

spring14_magazine-coverThe heart is a paradoxical organ. It declares its presence with that distinctive thump thump, yet its moment-to-moment condition is really hard to decipher. But as I learned while editing the just-published Stanford Medicine magazine special report “Mysteries of the heart,” new technologies and research are making it easier to assess heart health and diagnose disease. With heart disease the No. 1 cause of death worldwide, that’s good news.

The issue, published during American Heart Month, was supported in part by the Stanford Cardiovascular Institute. Among its contents:

  • A change of heart“: An interview with former vice president Dick Cheney on having “virtually everything done to me that you could do to a heart patient,” culminating with a transplant.
  • Fresh starts for hearts“: A feature on using stem cells to revolutionize cardiac care, and a family for which new treatments can’t come soon enough.
  • The ultramarathoner’s heart“: Visionary computer designer Mike Nuttall’s exploits as an ultramarathoner, despite having severe heart disease (online only).
  • Hiding in plain sight“: The story of a man born with high cholesterol — a surprisingly common but hidden and deadly condition.
  • Switching course“: A piece detailing the untangling of a heart surgery that saves babies, but threatens their lives in adulthood.
  • The heart gadgeteers“: A report on the new wave of heart- and fitness-monitoring devices, and why it’s hard to integrate them into the medical system.
  • Easy does it“: An article on an alternative to open-heart surgery to replace aortic valves.
  • Dear Dr. Shumway”: Catching up with a kid who in 1968 wrote to transplant pioneer Norman Shumway, MD, for advice — on his frog heart transplant.

The issue also includes articles on the use of big data in medicine, which will be the focus of the Big Data in Biomedicine conference May 21-23 at Stanford.

Previously: From womb to world: Stanford Medicine Magazine explores new work on having a babyFactoring in the environment: A report from Stanford Medicine magazine and New issue of Stanford Medicine magazine asks, What do we know about blood?
Illustration by Jason Holley

Cardiovascular Medicine, Stanford News, Transplants, Videos

A physician shares his story of being diagnosed with amyloidosis

A physician shares his story of being diagnosed with amyloidosis

Long before Kevin Anderson, MD, was diagnosed with amyloidosis, a disorder in which abnormal proteins build up in tissues and organs, his physical health began deteriorating. The most noticeable change was his increased difficulty in walking up the stairs to the hospital room where he practiced. In the above video, Anderson shares his story of working with Ron Witteles, MD, co-director of the Stanford Amyloid Center, to receive a heart transplant and get his health back on track.

Via Stanford Hospital & Clinics Facebook page
Previously: Survey shows Americans need a refresher course on heart health, Ask Stanford Med: Answers to your questions about heart health and cardiovascular research and Ask Stanford Med: Cardiologist Jennifer Tremmel responds to questions on women’s heart health

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