From The Washington Post, Wonkblog By Keith Humphreys
Thirty years ago this week, President Reagan signed the National Organ Transplant Act (NOTA), which established the federal legal framework for the procurement, donation and transplantation of organs needed by desperately ill Americans. The law’s advocates hoped that it would end organ shortages, but today over 120,000 Americans are on waiting lists. With the need for organs – especially kidneys -- projected to outstrip supply even more in coming years, intense debate has broken out over whether NOTA should be amended to allow funding of incentives for donors.
The interests at stake are colossal. About 30 Americans a day either die on the waiting list or are removed from it because they have become too ill to receive a transplant. Taxpayers also bear a significant burden in the case of kidneys because of the special status of renal dialysis within the Medicare program. In 1972, Congress mandated that Medicare cover the costs of care for end stage renal disease regardless of patient age. In 2011, over 500,000 people took advantage of this benefit at a cost of over $34 billion, which is more than 6% of Medicare’s entire budget.
One commonly proposed solution to the organ shortage derives from behavioral economic “nudge” principles. Rather than requiring Americans to complete paperwork in order to opt-in to donation at death, the country could shift to the European model of presuming that donation at death was acceptable. But Tom Mone, chief executive of OneLegacy, the nation’s largest organ and tissue recovery organization, points out that “The recovery rate for deceased donors in the United States is actually better than that of European nations with presumed consent laws. The United States rigorously follows individual donor registrations whereas presumed consent countries actually defer to family objections.”
In any event, because less than 1% of deceased individuals are medically eligible to donate organs, and 75% of this group in the United States in fact does so, there simply isn’t enough “there there” to remedy the shortage with improved recovery from deceased donors.
This brings up the currently illegal option of providing incentives for living donors. NOTA’s main Capitol Hill champion, a then little-known Congressman Al Gore Jr., allowed for the possibility of rewarding donors if the purely altruism-driven donation system did not keep up with demand. Today, one of the leading exponents of this idea is Dr. Sally Satel, a resident scholar at the American Enterprise Institute. Sally recently participated in a forum on organ donation at Stanford Medical School, after which I interviewed her regarding her proposal to incentivize kidney donation. Below is an edited transcript of our discussion. [Read more]
Dialysis Protocols for Ebola
From Reuters.com, BY JULIE STEENHUYSEN AND SHARON BEGLEY
(Reuters) - The Ebola crisis is forcing the American healthcare system to consider the previously unthinkable: withholding some medical interventions because they are too dangerous to doctors and nurses and unlikely to help a patient.
U.S. hospitals have over the years come under criticism for undertaking measures that prolong dying rather than improve patients' quality of life.
But the care of the first Ebola patient diagnosed in the United States, who received dialysis and intubation and infected two nurses caring for him, is spurring hospitals and medical associations to develop the first guidelines for what can reasonably be done and what should be withheld.
Officials from at least three hospital systems interviewed by Reuters said they were considering whether to withhold individual procedures or leave it up to individual doctors to determine whether an intervention would be performed.
Ethics experts say they are also fielding more calls from doctors asking what their professional obligations are to patients if healthcare workers could be at risk.
U.S. health officials meanwhile are trying to establish a network of about 20 hospitals nationwide that would be fully equipped to handle all aspects of Ebola care.
Their concern is that poorly trained or poorly equipped hospitals that perform invasive procedures will expose staff to bodily fluids of a patient when they are most infectious. The U.S. Centers for Disease Control and Prevention is working with kidney specialists on clinical guidelines for delivering dialysis to Ebola patients. The recommendations could come as early as this week.
The possibility of withholding care represents a departure from the "do everything" philosophy in most American hospitals and a return to a view that held sway a century ago, when doctors were at greater risk of becoming infected by treating dying patients.
"This is another example of how this 21st century viral threat has pulled us back into the 19th century," said medical historian Dr. Howard Markel of the University of Michigan. [Read more]
Gift of Life
From Lowell Sun, Lowell, MA, By Katina Caraganis
WORCESTER -- As Richard Finlay sat in the surgical waiting room of UMass Memorial Medical Center on Tuesday morning, he couldn't help but be thankful for the young woman who was willing to make a decision that would help prolong his life.
Two of Finlay's three children attend Page Hilltop Elementary School in Ayer, and when special-education teacher Kaitlin O'Connell heard the 52-year-old Ayer resident would die without a transplant, she knew she had to step in.
Finlay has been on dialysis for the last year because his kidneys were currently only functioning at 6 percent. Finlay suffers from polycystic kidney disease, a disorder passed through families in which cysts form in the kidneys, causing them to enlarge.
His two older brothers also suffer from the disorder, and Finlay is the second of the siblings to receive a transplant. His grandfather died from the disease, and his father received a kidney from his elderly mother.
O'Connell, 28, had previously tried to be a liver donor for her father, Barry, who is in liver failure, but she was not an ideal match and was denied.
Barry O'Connell contracted hepatitis when he was 18 after he and his friends gave each other tattoos. Everyone he was with that day likely contracted the disease.
The hepatitis has been treated, but he's in stage 4 liver failure, and the disease is attacking his lungs.
Finlay called O'Connell's decision to donate to him "selfless" and said without the transplant or continuing on dialysis three a time a week, he would likely die.
His wife, Karen, said the process leading up to the transplant hasn't been easy.
"At times, it's been stressful," she said while sitting in the waiting room as O'Connell was prepped for her portion of the surgery. "It was a long time waiting. Some days we were down, and some days we were up."
She remembers the day O'Connell came by their house to tell them she was going to donate her kidney.
Richard Finlay, who works for Verizon, wasn't home from work yet, and Karen was eating dinner with the couple's three children. She remembers there was a knock at the door, and when she answered it, there was a teacher she knew with someone she didn't.
"They had a beautiful cake with them, and I just thought they had stopped by to check in on us like so many people had," she said. "Kaitlin introduced herself to me as my husband's donor, and I was just completely shocked."
She said she was unable to speak while her children were in the background yelling and screaming with excitement. [Read more]
So when Whalen, 54, discovered he needed a kidney transplant, Hauer didn’t hesitate to offer one of his own kidneys.
The transplant surgery took place Monday in Seattle and both men are feeling great about the operation and about their friendship.
They both work as biomedical technicians at Fairbanks Memorial Hospital. The two are part of a team of five people who repair hospital equipment used to treat and diagnose patients.
“Our role is to keep patients safe,” Hauer said.
The two men met on the job in 2004 and have worked closely together since then. A couple years ago, Hauer became Whalen’s boss.
“We’re pretty close as far as workers, side-by-side,” Whalen said.
Whalen has known since 2000 that he suffers from polycystic kidney disease, an inherited disorder that occurs when clusters of cysts develop in the kidneys. Over the years, the disease progressively worsened. By the time 2014 rolled around, he realized he needed to get on the kidney transplant list.
Whalen said it would never cross his mind to ask Hauer or anyone else to donate a kidney.
But one day, Hauer just offered.
The conversation took place, Hauer said, where most of their serious conversations happen: at work. [Read more]
Fighting PKD
From Express & Star, United Kingdom
But the Turners from Staffordshire then had to cope with the news that three more had been diagnosed with it.
Now though they are using their experience battling polycystic kidney disease to help others and raise cash to fund research into the hereditary disease that has struck four generations.
Thirty-seven-year-old Craig Turner and his three-year-old son Charlie from Chasetown are both being treated for the condition.
Mr Turner's father Phillip died of a brain haemorrhage caused by the disease 14 years ago, aged 42, and his grandmother Jean died before him of the same condition.
Debbie Turner, his sister is also suffering from the disease, which causes cysts to grow on the kidneys.
Now Craig's wife, 33-year-old Kay Turner is now raising money for the Polycystic Kidney Charity in the hope that new drugs will be developed to battle the condition.
Craig only found out he had the disease when he was being checked by doctors after volunteering to donate a kidney to his sister.
And shortly after Kay found out she was pregnant - and then discovered unborn Charlie would have the same condition.
Despite the devastating impact PKD has had on her family, Kay says they want to use their experiences to help the thousands of people across the country that are affected by it each year.
The disease can have varying levels of seriousness - but there is little medication available to treat it at its more serious stages.
It can cause enlargement of the kidneys and also damage the liver, pancreas and, in some rare cases, the heart and brain.
Craig, a manager for a delivery firm in Tamworth, is currently continuing with life as normal other than taking blood pressure tablets and having regular check-ups.
And the outlook also looks bright at the moment for their son Charlie as he has so far showed few signs of any effects of the condition, he will be monitored though to check for any symptoms.
Mrs Turner said: "It's so difficult to know what will happen to someone when they get PKD but often they would be expected to live to 40 or 50.
"Charlie is very healthy at the moment but next month we will find out how big the cysts are growing."
She has already generated £1,000 and is hoping that more donations will flood in over the coming weeks.
Kay, 33, took part in the Great Birmingham Run last weekend and has also staged a fundraising fun day that saw her brother Phillip get his eyebrows waxed completely off. [Read more]
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