• New Utah law allows organ donations from prisoners; nearly 250 sign up

    Trent Nelson / AP

    Convicted murderer Ronnie Lee Gardner, who was executed in 2010, was part of the inspiration for a new Utah law that allows prisoners to donate organs. State Rep. Steve Eliason, who spearheaded the law, said it prevents valuable organs from "going to waste."

    By JoNel Aleccia, Senior Writer, NBC News

    Joanne Ford was a designated organ donor for decades, years before she was sentenced to time in Utah’s Draper Prison for possession and distribution of methamphetamines.

    But it wasn’t until two weeks ago that the 48-year-old inmate was guaranteed the right to honor her wishes if she happened to die while incarcerated.

    Utah’s governor, Gary R. Herbert, signed the first state law on March 28 that explicitly permits general prisoners to sign up for organ donation -- and cracks the door to the controversial option of allowing death-row inmates to donate as well.

    “I think, why not?” says Ford, who is among 247 Utah prisoners who’ve signed up to donate their organs. “If you have healthy organs, why would you not be able to help someone else?”’

    Whether to accept organs from prisoners has long been a thorny issue. Ethics experts say it pits questions of coercion of a vulnerable population against the desperate need for organs in a country where nearly 118,000 people are waiting for hearts, kidneys, livers and other life-saving transplants, according to the United Network for Organ Sharing.

    In most states, accepting organs from inmates who die while in custody is permitted only rarely and under strictly controlled circumstances. No state allows donation of organs from executed prisoners.

    “In a case where the prisoner is on death row and the question is of harvesting organs after execution, I remain steadfastly opposed,” says Dr. Paul R. Helft, director of the Charles Warren Fairbanks Center for Medical Ethics at Indiana University.

    The practice would “use unfree prisoners as a means to an end,” Helft says.

    Others argue that there are also practical barriers to prison organ donation, such as high rates of disease, difficulty of retrieving organs quickly and execution methods that render organs unusable.

    But not everyone believes those barriers should deter donation. Utah state Rep. Steve Eliason, who pushed the law through the legislature, said he was inspired by the 2010 death of Ronnie Lee Gardner, a murderer who wanted to donate his organs but was prohibited from doing so.

    “How disappointing is that, there’s somebody who maybe wants to atone for his sins in some way,” says the Republican from Sandy, Utah. “It’s a waste of perfectly good organs that could help others.”

    Eliason first proposed a bill allowing prisoners to donate organs last year, but time ran out before it could be fully considered. The next time, it passed unanimously.

    Meanwhile, the Utah Department of Corrections already had begun allowing inmates to fill out organ donation cards voluntarily as part of their prison paperwork, said spokesman Steve Gehrke.

    “We have more firm information on hand to have that back-up to know what that person’s wishes might be,” he said.

    Now that the law has passed, records of inmates who want to donate have been sent to Intermountain Donor Services, the agency that manages organ donations in Utah. They’ve been added to the state donor registry.

    “Any time we can expand the donor pool or make people aware of organ donation, we’re supportive of that,” says Alex McDonald, a spokesman.

    The chance that the prisoners will become organ donors is very small; only 1 percent to 2 percent of deaths involve donation, McDonald says.

    But every organ donor can save the lives of up to eight people and tissue donors can help more than 50 people, transplant experts say.

    That’s long been the argument of Christian Longo, an Oregon death row inmate who has mounted an aggressive campaign from his cell to donate his organs after he’s executed. Longo, 39, who murdered his wife and three young children in 2001, has launched a website and a Facebook page and made his plea in a New York Times op-ed piece.

    Oregon officials have declined to consider his request and, last year, Gov. John Kitzhaber announced a moratorium that halts death penalty executions.

    Still, Longo is not deterred. In an email from prison, he said he is working to raise the issue of prison organ donation in other states first.

    “Utah is the first success,” he wrote to NBC News. “Eventually I will use the success as weight to hopefully prompt Oregon to make a similar change. But for now, we’re helping other inmates navigate their states’ roadblocks.”

    The Utah law does not discriminate between general population prisoners and death-row inmates, Eliason noted. “Any prisoner is able to do this,” he says.

    Prison officials have not yet distributed the organ donation forms to the eight prisoners on Utah’s death row or to all of the 6,900 inmates in the system, Gehrke says. On average, about 10 prisoners die in custody each year in that state.

    Some may wonder whether people in need would accept organs from prisoners, but Lori Haglund of Salt Lake City says there’s no question. Her son, Brock Butler, had a progressive liver disease. He died in September, a week before his 21st birthday, after spending three years on a waiting list for a liver.

    “We were acutely aware of what we were asking someone to be giving,” says Haglund, 51. “For anyone who would be willing, it gives them a chance to give something back.”

    Joanne Ford agrees. Although she may have damaged her organs, particularly her liver, with drug use, she still hopes she may one day help others.

    “There still may be one or two things that could still possibly be used,” she says.

    Donating her organs after death would be one way to atone for her actions -- in addition to prison time.

    “I feel like I owe society a big debt,” she says. “I caused a great damage out there. I feel good about this.”

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  • Who gets a kidney? Organ transplant policy may change

    By Rachael Rettner
    MyHealthNewsDaily

    The way that donated kidneys are allocated to patients needing transplants might be changed next year, so that the fittest organs would be given to those likely to live the longest with the donated organ.

    That was the announcement today from the United Network for Organ Sharing (UNOS), the nonprofit organization that manages organ donations in the U.S.

    More than 93,000 people in the United States are on the waiting list for a kidney transplant, and the demand far exceeds the supply.

    Currently, when kidneys from deceased persons become available for donation, they are offered to transplanted patients based primarily on how long the patients have been waiting for an organ.

    Best kidneys should go to the right recipients, bioethicist says

    While this system can be thought of as fair, "it does not strive to minimize death on the waiting list, nor maximize survival following transplant," UNOS says. In some cases, patients that receive relatively poor kidneys are likely to live many years after their transplants, and later need a second or third transplant from the already limited pool of donated organs.

    Under the proposed policy, kidneys would be given a score that reflects how long the organ is likely to keep working in its new owner. People needing transplants would also be given scores — based on their age, years on dialysis and other factors — that reflect how long they are likely to benefit from the transplant.

    The top 20 percent of kidneys would be offered to the top 20 percent of patients based on this score, UNOS says. The remaining 80 percent of kidneys would be allocated in much the same way as before.

    Children would be prioritized to receive high-quality kidneys — those in the top 35 percent. Patients with very sensitive immune systems, who are extremely limited in the type of organ they can receive, would also have priority over those with less-sensitive immune systems. 

    Organs with low scores would be offered to patients in a wider geographic area than under the current system, to increase the chances that they would be used rather than discarded. 

    The changes could result in more than 8,000 total extra years of life, among all patients receiving a kidney in a given year, UNOS says.

    However, experts say the effects of the changes will be marginal, and do not change the reality that the demands for organs is still far greater than the supply.

    "It's not a major change," because it only affects 20 percent of patients, said George Annas, chair of the Department of Health Law, Bioethics & Human Rights at Boston University School of Public Health. "Obviously, it's not going to solve the shortage of organs problem," Annas said.

    To address this problem, doctors need to do more to prevent kidney disease in the first place, so fewer people need transplants, Annas said.

    "You can't just look at a shortage problem from the supply side, you have to look at the demand side too," Annas said.

    UNOS is seeking comments from the public on the proposed changes until December, and the organization will vote on the proposal as early as June next year.

    MyHealthNewsDaily:

  • Bioethicist: Families, stop thwarting organ donors

    By Art Caplan, Ph.D.

    Despite the great demand, very few Americans donate their organs when they die. But the reason for that may not be what you’d think -- it’s your relatives.

    That’s what David Shaw, honorary lecturer at the University of Aberdeen in Scotland, thinks the real problem is. In an article published Tuesday in the British Medical Journal, he writes that one of the biggest reasons more people don’t wind up donating is veto by their family.

    Even when you have signed a donor card or checked off your driver’s license a family member can still object to your being an organ donor.  And some do -- at least 10 percent of the time or more, says Shaw. (That number may be even higher, according to other U.S. researchers.) Shaw says doctors ought to forget cousin Fred’s second-guessing or your sister’s distaste for donation  and ought to honor your written wishes and use you as a donor.

    Interestingly enough, that’s actually the law in the U.S. In nearly every state, a signed driver’s license or organ donor card is fully adequate for allowing donation no matter what your brother-in-law or other family member thinks. But despite that, doctors are still swayed by the family’s wishes.

    Shaw is up against some tough problems when he urges doctors to ignore family protests. Is it really realistic for organ and tissue procurement to proceed no matter how upset family members might be about it?

    And even if doctors are willing to plow ahead no matter what kind of emotional chaos is occurring in the next room, which hospital wants to risk a headline that says, “Liver removed while widow wails; Doc says ‘But I had a signed driver’s license’”?

    Shaw is right to urge doctors not to give up at the first sign of family discomfort. When you sign a card or your driver’s license, you should expect that you will be able to be a donor.

    I would argue, however, that the problem with family objections is not fearful doctors backing down in the face of distressed or divided families. The problem is what you and I often fail to do when we sign those cards and licenses — tell others!

    If you sign your driver’s license at motor vehicles it is not likely that the friendly employee you waited an hour to see is going to be there when you die. Your family and friends will be. You need to tell them while you are alive that you want to be an organ and tissue donor. That is the antidote for avoiding an outbreak of objections when your number is up and being a donor is the last way you can help those in need. If you make it clear while alive what your wishes are that is the most important step you can take to having them honored when you are not.

    Arthur Caplan is the head of the Division of Medical Ethics at NYU Langone Medical Center.

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  • Transplanted lungs didn't come from Colo. victims, despite reports

    Lucas Massey

    This photo, posted to the website Reddit, claimed that Greg Muzzy, 45, had received lungs from victims of the Aurora, Colo., theater shootings. However, officials said that's not true.

    By JoNel Aleccia, Senior Writer, NBC News

    The coincidence seemed too real to ignore.

    Early last Friday morning, within an hour of the horrific movie theater shooting that killed 12 in Aurora, Colo., the Dallas family of a man waiting for a double lung transplant got a call saying the scarce organs were suddenly available.

    “I thought, ‘That is very odd,’” recalled Tami Teeples, the sister of Greg Muzzy, a 45-year-old emphysema patient. “Something tragic happened and it could have possibly saved my brother’s life.”

    The news quickly spread, both within the family and online, after an excited cousin, Lucas Massey, 18, posted a photo of a recovering Muzzy on the website Reddit.

    “My uncle Greg just got two new lungs from a victim of the Aurora shootings,” Massey wrote. “Amazing that such a tragedy saves a mans life, too. (sic)”

    More than 2.2 million people viewed the photo and more than 2,000 comments poured in. News sites including the HuffPost Living Canada and the British tabloid the Mirror ran stories touting the transplant.

    “A feel good story has some out of the Aurora massacre,” the HuffPo story read.

    Trouble is, it isn’t true.

    Greg Muzzy, a former construction worker from Wichita, did get his lungs in a successful operation on Friday. But the donor wasn’t in the Aurora movie theater early Friday morning, hospital and transplant officials said.

    “We can tell you that those lungs did not come from Colorado,” said Pam Silvestri, public affairs director for the Southwest Transplant Alliance in Dallas. A spokeswoman for UT Southwestern Medical Center, where Muzzy was treated, said the same. 

    It’s not clear whether any of the 12 victims of the movie theater shooting were organ donors. That information is confidential, said Jennifer Moe, communications director for Donor Alliance, the organ procurement organization, or OPO, in Colorado.

    Ten of the victims -- those who died in the theater -- likely would not have been eligible to be solid organ donors because their bodies remained so long at the site, more than a dozen hours in some cases, because of the police investigation. 

    Nor would they have been able to donate corneas or living tissue, which must be recovered and preserved within 12 hours of death, said Robert Austin, spokesman for the Rocky Mountain Lions Eye Bank in Aurora. 

    In general, organs such as the heart, lungs and kidneys remain viable for only about an hour after circulation stops, said Dr. John Friedewald, a kidney transplant expert with Northwestern Memorial Hospital in Chicago.

    The Arapahoe County Coroner's office confirmed that two victims were taken to area hospitals, where they later died: Jessica Ghawi, 24, and Veronica Moser-Sullivan, 6. Their organ donation status remains unknown.

    Silvestri, the Dallas expert, understands the confusion. Whenever there’s a mass tragedy, recipients of donated organs often assume that’s the source.

    “People think they know where they come from and they just don’t,” Silvestri said.

    'We have a miracle in itself.'
    Muzzy’s sister, Tami Teeples, never said the family was certain the organs came from Aurora. On Sunday, before the situation was sorted out, she told NBC News they were grateful no matter the source.

    “My brother’s still alive,” she said. “We have a miracle in itself.”

    She said she didn’t want that positive story “turned into a negative.”

    Muzzy suffers from a worsening form of genetic emphysema in which people have too little of a vital protein called Alpha-1 antitrypsin circulating in their blood. He’s become gradually weaker and more debilitated in recent years, to the point that he had only 7 percent of lung capacity, his sister said. In March, doctors said a lung transplant was his only option.
    “They said, ‘You need to say your goodbyes,’” Teeples said.

    In June, she moved her brother from Wichita to Dallas and helped him get on the local lung transplant list. They were waiting until last Friday, when the call came through just after midnight.

    “My mom came into my room and said: ‘We have lungs,’” Teeples recalled.

    If averages bear out, those lungs were among five allocated per day in the U.S., and some 1,822 transplanted last year, according to Anne Paschke, spokeswoman for the United Network for Organ Sharing, which tracks donation data.

    Overall, some 114,651 people are waiting for organs now, according to statistics from the Organ Procurement and Transplantation Network.

    Most of the donations come from everyday tragedies, the private deaths that receive no national news attention, no presidential condolences.

    That’s the message that Muzzy’s family would like to share, said his sister.

    “No matter how big the tragedy, whether a mass murder or a car wreck, we never know when we may lose our life,” said Tami Teeples. “Being an organ donor is a blessing for many in a time of loss.”

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  • For organ donation, Facebook beats the DMV, bioethicist says

    By Art Caplan, Ph.D.

    Right now, nearly 114,000 people in the United States are waiting for organ transplants to save their lives. Tens of thousands more are in need of tissue, bone and cornea transplants to restore their mobility or sight. Facebook has decided to do something about the constant shortage of donors. 

    The company has announced that members can now declare their desire to be an organ donor on their Facebook page. According to a press release signed by Facebook CEO Mark Zuckerberg and COO Sheryl Sandberg, "…by simply telling people that you're an organ donor, the power of sharing and connection can play an important role." 

    I agree. 

    Donor cards and check-offs on driver’s licenses work, but not well. Sixty-two percent of Colorado's licensed drivers and ID card holders have signed "yes," for instance. But in the rest of the U.S., many more Americans have not. For example, fewer than 15 percent have checked the driver’s license donor box in New York State. Since most Americans say they do want to donate when they die -- a Gallup study found 95 percent support organ donation -- and since most families, when asked, do consent to donation by a loved one, why the poor donor card rates?

    The answer, in part, is that the Department of Motor Vehicles is not the best agency to recruit organ donors. As I have argued in a recent article in the American Journal of Bioethics with philosophy professors Kyle Whyte and Evan Selinger, asking people to do something nice for others when they have been stewing in a long line, getting angrier and angrier while they wait is not conducive to altruism.

    True story about my experience at the DMV: When I went to renew my license here in Pennsylvania, I told the official at the counter that I wanted to be an organ donor. She frowned and said maybe that was not a good idea, since she had heard that people who check the wish to donate box might not get aggressive care at the hospital. She had heard wrong, of course. But the point is, being asked to donate by someone who does not know the facts, or, does not really care about them, while waiting in a crummy environment, is not the best way to identify donors.

    Facebook can help. That's mostly because the power of a donor card really is to let others know about your wishes when you die. However, if for some reason your card is not found when you die, or your family and friends do not know you signed it, then your desire to donate might be unknown -- or ignored. Facebook gives one more avenue for others to learn about your wishes -- and that is all to the good.

    Some might argue that it could be coercive to have your friends publicly state they want to be organ donors, especially if you are not sure. I don’t think so. The choice is yours, but seeing that your family and friends have chosen to donate is a fact that might sway, not coerce, your decision.

    So, good for Facebook for trying to help find more donors for those in need. Let’s hope, for the sake of all those waiting for the gift of life, it helps.

    What do you think of publicly sharing your organ donor status on Facebook? Tell us... on Facebook

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  • Tom Brady turns to social media to find coach's kidney donor

    New England Patriots quarterback Tom Brady is trying to find a kidney donor for his ailing mentor and Tom Martinez, whose kidneys began to fail five years ago after he got a staph infection.

    By Rita Rubin

    Tom Martinez figures he first set eyes on Tom Brady when the New England Patriots quarterback was 10 and tagged along with his sisters to a softball clinic Martinez ran at the College of San Mateo in California.

    At 13, Brady signed up for Martinez’s quarterback clinic, and the rest, as they say, is history. Brady, now 34, has worked with the coach every year since and has said he would never have been the Pats’ quarterback without Martinez as his mentor.

    Now Brady, bound for his fifth Super Bowl on Sunday, is trying to repay his ailing 66-year-old coach by finding him a kidney donor. On his Facebook page a month ago, Brady posted a photo of himself and Martinez and a link to a website, www.matchingdonors.com, whose goal is to match altruistic living organ donors with strangers in need.

    A staph infection after leg surgery five years ago caused his kidneys to fail, Martinez says, and he has required dialysis four hours a day, four days a week. He also suffers from diabetes and heart problems.

    Now he’s one of the more than 90,000 U.S. patients who are waiting for a kidney, according to Anne Paschke, spokeswoman for the United Network for Organ Sharing, or UNOS, the nonprofit that manages the U.S. organ transplant system under contract with the federal government. UNOS works with organs only from deceased donor and has no official guidance about living donors.

    About a dozen Americans die every day while waiting for a kidney donor, according to the Alliance for Paired Donation, which helps facilitate transplant “chains” involving patients who have a willing but incompatible donor.

    Since 1988, nearly half of all transplanted kidneys, or about 110,000 out of about 243,000, have come from living donors, according to the Organ Procurement and Transplantation Network, part of the Department of Health and Human Services. Usually, living donors are relatives or friends, although they might be strangers involved in paired donation.

    Martinez, the father of three grown children, says no relatives have volunteered to be tested to see if they might be suitable kidney donors for him, and he doesn’t plan to ask them because it would put them on the spot.

    “I think it’s something you really have to want to do,” he told msnbc.com.

    Martinez says a friend found out about MatchingDonors.com, which was launched in 2004 by CEO Paul Dooley, who previously had run a job-matching website. Over the years, 150 kidney transplants have resulted from matches made through the website, says MatchingDonors medical advisor Dr. Jeremiah Lowney, an internist in private practice in Hyde Park, Mass.

    The website charges patients $595 to be listed but has waived the fee for some patients who can’t afford it, Lowney says
    More than 10,000 people have signed up to be donors, but only about 500 patients have posted profiles, he says.

    “I think people still might have some apprehension about putting themselves out there on a website,” he says. “They might just be worried that there might be people who are going to try to ask them for some kind of payment.”

    MatchingDonors warns on its website that “it is absolutely against the law to have any financial benefit from organ donation,” but, Lowney says, he’s heard that some patients have been contacted by people trying to sell a kidney.

    Although donors recruited through MatchingDonors might not request payment before the transplant, that doesn’t mean they won’t afterward, cautions Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania and a frequent contributor to msnbc.com.

    In addition, Caplan says, some patients may not want to become public. And even if they do, he says, they might not be good at marketing themselves to prospective donors. Caplan says he’d prefer to see a national organ donor bank that would protect donors’ and patients’ privacy and allow transplant experts sort out who should get which organs.

    On the plus side, Caplan says, websites like Matching Donors might add a few kidneys to the overall pool from donors who might not otherwise be motivated.

    “Any time you can take someone off the (waiting) list, other people will move up that list,” Lowney says.
    Martinez’s listing on MatchingDonors was just posted Tuesday, but publicity about his need for a kidney has already attracted potential donors for two other patients on the site, Lowney says.

    “Coach Tom Martinez is the world’s best father, grandfather and football quarterback coach,” reads his profile on MatchingDonors, which also quotes a Boston Globe article about his impact on Brady’s career.

    “It’s unbelievable for me to believe that a person who doesn’t even know you would be willing to give a body part,” Martinez says. “That’s overwhelming to me.”

    During the week, dialysis and doctors’ appointments leave Martinez little time for coaching. “God bless Sundays, ‘cause nobody’s around,” he says, leaving him free to coach budding Tom Bradys and watch pro football at his San Mateo, Calif., home. He needs a walker to get around, but says, “I’m able to coach just as well, because I coach with my eyes and I coach with my mouth.”

    This Sunday, of course, he’ll be watching The Game.

    He’s not one for any of the “opinions and fanfare” leading up to it, although chances are his name will come up during the pre-game broadcast. “I really focus once the game starts on how he’s doing.”

    Would you donate an organ to someone you don't know? Tell us on Facebook.

     

  • Donating your body to science? Nobody wants a chubby corpse

    featurepics.com

    People intending to leave their bodies to science might find they bump up against weight limits, especially given America's growing girth.

    By JoNel Aleccia, Senior Writer, NBC News

    It’s a rare day when Richard Drake turns down a dead body, but last week, he had no choice.

    At 6-foot-1 and 350 pounds, the deceased in question was simply too big for the Cleveland Clinic Body Donation Program, which provides specimens for anatomy classes at the Lerner College of Medicine and elsewhere.

    “Someone that’s shorter and carrying a lot of weight, that is a problem,” said Drake, director of anatomy and a professor of surgery. “The storage is one issue, but when you are obese, there’s a lot of tissue everywhere. The students don’t get as good a learning opportunity.”

    Reluctantly, Drake informed the dead man’s family he’d have to turn down the donation request because their loved one exceeded the size limits for medical research.

    “They understood that, because, actually, they had tried a few other places,” Drake said. “They were sort of checking around.”

    In a country where more than a third of adults are obese, the impact of extra weight extends, it seems, even beyond death.

    Officials at some whole body donation programs in the United States tell msnbc.com they’ve turned away corpses that are too fat for scientific study. Others say the bigger issue is that potential donors simply don’t sign up once they learn of weight limits that can be as low as 170 pounds, but generally top out at 300 pounds.

    “Family members, or the person themselves, sometimes they’re a little taken aback,” said Stephen D. Anderson, coordinator of the Willed Body Program at the University of Louisville School of Medicine in Kentucky.  “They didn’t assume there were any restrictions.”

    That surprise could be a problem, considering that a 2004 Johns Hopkins School of Medicine study found that about half of adults surveyed would consider donating their bodies to science.

    But officials at the university-affiliated programs that supply perhaps 10,000 to 15,000 dead bodies each year to the nation’s nearly 140 medical schools say that weight and height limits are an unavoidable part of the process.

    “The embalming process adds considerable weight. Generally, a 250-pound person might weigh 350 to 400 pounds when embalmed,” said Richard Dey, professor and chairman of the Department of Neurobiology and Anatomy at West Virginia University in Morgantown. His program receives about 275 bodies a year and turns away at least a few.

    To be frank, bodies taller than about 6-foot-4 or heavier than about 300 pounds simply don’t fit on the trays that are sometimes stacked six high in the coolers where the deceased are kept, experts say.

    It can be difficult for technicians to handle huge corpses, which have to be lifted and transferred frequently, often by slim technicians or students, said John Lee Powers, curator of anatomical materials at the Brody School of Medicine at East Carolina University in Greenville, N.C.  That program limits donors to between 170 pounds and 180 pounds, though an exceptionally tall donor might be allowed at 190.

    “It’s the maximum our equipment will handle,” Powers said.

    There’s also the educational aspect to consider. Donated bodies are used primarily for first-year anatomy students, who need to learn how the human body is supposed to look, said Ronn Wade, director of the Anatomical Services Division of the University of Maryland Medical School in Baltimore.  

    Bioethicist: A final reason to lose weight

    “In a perfect world, they’d like to have a perfect body with perfect anatomy -- or near perfect,” said Wade, whose program is among the largest in the nation, with a peak donation of some 1,800 bodies a year.

    Studying obesity and other pathologies can come later, once students are familiar with the basics, he added.

    Obese bodies are more difficult, time-consuming and unpleasant to study, said Wade, who also heads his state’s anatomy board.
    “Basically it’s having to get at the structures you want to see,” he said. “Between the skin and the rest, there’s layers and layers of fat cells.”

    Only about a quarter of the bodies Wade receives meet the ideal criteria, he said. Perhaps 5 percent of them are morbidly obese.

    Wade generally doesn’t reject them outright. But they won’t be used by medical students in first-year classes. They might wind up as clinical specimens used for practice by paramedics or other medical professionals. Some obese bodies can't be used at all, so they're simply cremated and the remains are returned to the families -- without ever serving any research purpose.

    So far, medical schools are still able to get enough lean bodies for students to use, experts said. Some programs use corpses from for-profit tissue brokers, which are loosely regulated and supply an unknown number of bodies each year.

    Still, considering America’s growing girth, some experts are worried about the future.

    Anderson, the director of the University of Louisville program, says he can’t use about 10 percent of the 175 to 200 bodies donated each year because of size problems.

    He said he’s thought about upping the program’s weight limit from 200 pounds to 250 pounds to ensure a steady supply.

    “If we keep it at 200, we may see that we’re turning down potential donors because of that,” he said.

    Having to turn down any willing donor is a shame, said Drake, the Cleveland Clinic expert who is also an officer with the American Association of Anatomists. He doubted the family of the 6-foot-1, 350-pound man would find a program to accept his remains. Instead, they likely had to make other arrangements for the man’s disposition.

    “It is an emotional thing,” he said. “People really do want to do this.”

    That was the case for the mother of Tara Parker-Pope, a New York Times health reporter who recently wrote about the struggle to lose weight and keep it off, both in her own family and in the population at large.

    “My mother died of esophageal cancer six years ago,” Parker-Pope wrote. “It was her great regret that in the days before she died, the closest medical school turned down her offer to donate her body because she was obese.”

    Those who leave their remains to science tend to be sensitive folks interested in enhancing the public good, said Wade, the Maryland expert who has promoted whole body donation for more than 35 years.  

    At the end of a life perhaps spent struggling with weight, learning they’re too heavy to fulfill those altruistic wishes can be devastating.

    “It’s kind of another stigma,” said Wade. “They kind of feel victimized.”

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  • Too promiscuous to donate an organ? Maybe, CDC says

    The Star-Ledger

    Organ transplant experts are worried that proposed new federal health guidelines will limit the number of available donors and recipients willing to accept organs newly classified as risky.

    By JoNel Aleccia, Senior Writer, NBC News

    If you've had sex with two or more partners in the past year, you may be considered a risky organ donor, at least according to proposed new federal health guidelines that have drawn sharp protests from transplant experts who say they're far too broad. 

    “With the new guidelines, every college student in America will be high risk,” said Dr. Harry Dorn-Arias, a transplant surgeon at the University of Virginia. “Right now, it's probably a prostitute or a guy with a needle in his arm. Next time, it will be just a young guy."

    Under the new policy proposed this fall by the Centers for Disease Control and Prevention, deceased and living donors who were not monogamous in the previous 12 months would be considered at increased risk of transmitting HIV, hepatitis B and hepatitis C -- even if they had no other risk factors

    CDC officials say the proposed guidelines are aimed at making the organ supply safer and preventing accidental transmission of life-threatening infections. The policies wouldn’t absolutely ban anyone from donating, especially in an exceptional or life-saving situation, but they would call for more scrutiny and testing.

    “It’s geared for the patient so the patient knows as much as they can about the organ being transplanted in them,” said Dr. Matthew J. Kuehnert, director of the CDC’s office of Blood, Organ and Other Tissue Safety.

    But transplant experts are outraged because they say the proposal arbitrarily focuses on monogamy and could limit both the number of available donors and the number of recipients willing to accept organs newly classified as risky.

    They worry that potential living donors may balk at donating if they know their sexual history alone could raise questions about their suitability, particularly if the situation involved a family member.

    “If you were going to give your organ to your mom or dad or sister, you’re going to be ashamed of that,” said Dorn-Arias. “You’re either going to say no, or you’re going to lie.”

    The proposed policy could also require families of deceased donors to answer uncomfortable questions -- ones they may not even know the answers to -- about the specific sexual behaviors of their loved ones.

    “It’s probably going to triple what we consider high risk at this point,” said Tracy Giacoma, transplant administrator at the University of Kansas Hospital. “It may scare patients off from taking these organs. More patients may die because they don’t take these organs.”

    More than 28,000 organs are transplanted each year, but more than 112,000 people are on organ waiting lists, according to figures from the Organ Procurement and Transplantation Network.  

    The guidelines could affect a wide swath of potential donors, particularly younger people. About a quarter of women and nearly 30 percent of men ages 20 to 24 said they had two or more sexual partners in the past 12 months, according to a 2006-2008 report by the National Center for Health Statistics.

    When tragic deaths occur, those are precisely the people who should donate their organs, if possible, Giacoma said.

    "If you have a [donor] that's 19 years old and he had multiple partners, we'll have to tell the recipient, this is a high-risk organ," she said.

    The sexual partner tally is only one of several new factors that could tag a potential donor as being at increased risk of infection. It’s part of a larger set of guidelines that would update 1994 Public Health Service policies for preventing transmission of HIV through human tissue and organs.

    "Our priority here is patient safety," said Kuehnert, who noted that the guidelines describe "increased risk," not "high risk," of infection. "[Patients] should know if they're getting an organ at elevated risk."

    The 1994 guidlines exclude certain groups as donors, including men who have had sex with other men within the past five years, people who've used IV drugs or exchanged sex for money or drugs in the past five years, hemophiliacs, those exposed to HIV, and people who've had sex with anyone in those categories. They also limit people who've been incarcerated.

    The new plan calls for the first-ever guidelines for testing living donors and it adds hepatitis B and hepatitis C to the list of must-test viruses, along with HIV, Kuehnert said.  As it stands now, only HIV is included in the guidelines, though most organ transplant centers do test for a range of other potential diseases. 

    The proposal also calls for use of the most sensitive tests available to detect infection and for shorter testing windows to avoid transmitting infections, which occurs in an estimated 1 percent of transplant cases and has been fatal, Kuehnert said.

    Between 2007 and 2010, the CDC participated in more than 200 investigations of suspect unexpected transmission of infections including HIV and hepatitis B and C, with dozens of cases confirmed, Kuehnert added.

    The risk of infection from organs may be rare, but it's real. Helen Boucher's husband, George, 54, of Pawtucket, R.I., died in 2005 after receiving a kidney tainted with a rare infection traced back to a virus from the donor's pet hamster. The new guidelines wouldn't have helped detect the Lymphocytic Choriomeningitis virus -- known as LCMV -- but Helen Boucher, now 61, said preventing the trauma her family endured is worth any extra scrutiny.

    "My gut feeling is if you want to be a donor, you’re doing a wonderful thing, but you also have to think about what could happen to the recipient," she said. "If I’m willing to be a donor, I’m willing to answer any of those questions that someone is going to ask of me."

    The proposed guidelines shorten the time frame for many of the higher-risk behaviors from five years to one year. But they also classify as risky people who have used kidney dialysis during that time; people who have snorted cocaine or heroin nasally; those who've been in prison, jail or juvenile detention centers for more than three consecutive days in the past year; those who currently have or who have been treated for syphilis, gonorrhea or genital ulcers in the past year and people who have immigrated to the United States within the last year from a country with a high prevalence of hepatitis B.

    Other aspects of the plan have drawn fire from transplant experts who object to tests that might be too expensive and too slow for all centers to administer.

    But it's the new emphasis on two or more sexual partners that has ignited most ire, judging from public comments about the proposal being accepted through Dec. 21 at www.regulations.gov.

    “I am opposed to the guidelines as written,” wrote Dr. John Radomski, chief of surgery at Our Lady of Lourdes Medical Center in Camden, N.J. “The list of high risk behavior seems way too broad.”

    CDC officials downplayed the controversy, saying that the proposal is a draft and can be changed, particularly if there's strong evidence to support any alteration. They said the primary goal is to obtain as much information about transplanted organs as possible, whether that comes from personal histories or advanced screening tests.

    Using a set of behaviors to gauge risk makes sense, Kuehnert said, and studies suggest that having more than one sexual partner raises the risk of infection.

    “We can quibble about whether it should be two sexual partners or three or five or 10, but we’ll have to have a cut-off point,” he said.

    Should donors who had sex with more than two people in a year be considered high risk? Tell us on Facebook.

    Related stories:
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    Killer's quest: Allow organ donation after execution
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  • Baby thriving after life-saving heart transplant

    Infant makes major strides after heart transplant. WTVJ's Diana Gonzalez reports.

    By Kristin Kalning

    Just five weeks after her heart transplant, Kylee Faith Jones is recovering exceptionally well.

    It's especially remarkable considering Kylee is just five months old, born with a congenital heart defect that required a pacemaker when she was three days old, according to NBC's Miami affiliate, WTVJ.

    She’s also the youngest transplant patient ever at Joe DiMaggio Children’s Hospital, in Hollywood, Fla. In fact, little Kylee is only the third case at the hospital, which started its pediatric heart transplant program in December 2010.

    Over 2,000 patients received heart transplantations in 2010, according to the United Network for Organ Sharing. About 88 percent of patients survive the first year, and about 72 percent survive for five years, says the National Heart Lung and Blood Institute.

    Infant transplantation, though, is much riskier. A recent study from Children’s Hospital Boston showed that 1 in 9 babies who undergo transplantation die before leaving the hospital.

    But without a transplant, baby Kylee faced difficult odds.  An ultrasound detected a heart defect when mother Trace Jones was 16 weeks pregnant.

    “Her heart was flipped. It was on the right side of her body and it was a mirror image,” Jones told the station. “She had third degree heart block which meant the top of her heart and the bottom didn’t fire at the same times.”

    Kylee did well on the pacemaker for three months, but then became very ill, and was unresponsive at the hospital's emergency room, . “When I picked her out of the baby seat, I realized her body was limp. It was a very scary feeling,” said John Jones, the baby's father.

    Doctors resuscitated Kylee, who spent the next seven weeks in the pediatric intensive care unit waiting for a donor heart. Donor hearts are in short supply, with over 3,000 patients currently waiting, according to the U.S. Department of Health and Human Services.

    But Kylee got lucky, receiving a donor heart, and transplant surgery on August 31. She “required maximal medical support in order to sustain her until the time of transplant, “ Dr. Maryanne Chrisant, director of pediatric cardiac transplants at the hospital told WTVJ.

    An ultrasound of Kylee's own malfunctioning heart showed it was contracting very poorly and the rhythm was abnormal. A recent ultrasound done after the transplant is a different story. “It’s pumping beautifully, it’s ejecting blood perfectly, it’s really doing great,” said Chrisant, monitoring Kylee’s progress.

    That's the best possible news for the Jones, who feel forever indebted to the donor family.

    “It was sort of a mixed feeling in the sense that you feel guilty for another family that lost their child in order to give our child life,“ said Kylee's father, John. “We would love to meet them and just thank them,” added a grateful Trace. And now, all family members have registered to be organ donors.

    Interested in becoming an organ donor? Visit organdonor.gov to get more information.