Making sure kidney donors fare as well as promised (AP)

WASHINGTON � More and more people are donating one of their kidneys to a loved one, a friend, even a stranger, and now a move is on to make sure those donors really fare as well as they're promised.

Specialists insist the surgery rarely brings serious complications for the donor. What's less certain is the risk of any long-term health consequences, in part because transplant centers can lose track of donors after they go home.

"Who's taking care of the donor after the surgery? Really, no one is," says kidney donor Krystal McLear, 32, of Indian Head, Md., who serves on a committee for the network that runs the U.S. organ transplant system.

The United Network for Organ Sharing is debating some new policies to change that. Among the proposals: A checklist for evaluating would-be donors and fully explaining the risks � plus requirements to better monitor those donors' health and social stability for two years. Centers would have to track such things as the condition of the remaining kidney, and whether the donor has a hard time getting health or life insurance afterward.

There is reassuring data. A 2009 study from the University of Minnesota, for example, traced the records of nearly 3,700 people who had donated a kidney there dating back four decades. It concluded those donors lived a normal life span and were no more likely than the general population to suffer kidney failure later in life, probably in part because they were so super-healthy to start.

But there have been more than 109,000 living kidney donors nationwide in the past two decades, and they're a bit different today. Donors are getting older. Some transplant centers are accepting donors who would have been turned away not too long ago because they're overweight or have high blood pressure. More African-Americans, who are more prone to kidney disease, are becoming living donors and there's less information about their outcomes. Even if people were the picture of health when they donated, later-in-life obesity, high blood pressure and diabetes can raise the risk of kidney disease.

"We're changing," says Dr. Connie Davis of the University of Washington in Seattle, who heads the UNOS living donor committee. "We really do need to take a look at things again in real time to say, OK, in this current climate what are our risks?"

More than 90,000 people are on the national waiting list for a kidney, and the wait can stretch for years. There are fewer than 17,000 kidney transplants a year. But more than 6,000 of them each year are thanks to living donors.

Surgery always brings risks, but donor deaths are extremely rare. UNOS data shows that since 2000, there have been 13 donor deaths within 30 days of a kidney donation that were not from a clearly unrelated cause. Davis says no more than 5 percent of donors experience surgical complications such as bleeding or blood clots.

What about later? Transplant centers are supposed to do minimal monitoring but a UNOS analysis found they lose track of too many donors. Just a year after donation, they only knew if two-thirds were still alive or dead, and far fewer had had their remaining kidney tested.

"There is this perception out there that donors don't want to be followed up. That's not necessarily the case," says McLear, who insists that her doctors check her kidney and that her blood pressure remains low.

McLear traveled to Michigan in 2008 to donate a kidney to her 26-year-old cousin, and is glad she did � her cousin is thriving. But McLear had trouble finding out what to expect about her own post-surgery health. And a week after the donation, she developed a dangerous pancreas inflammation, a rare complication. She was readmitted to the hospital for seven more days and out of work for 12 weeks, nearly twice as long as she'd expected.

The new proposal: Transplant centers would have to track at least 90 percent of their living kidney donors for two years � not just if they're still alive and having their kidney checked, but if they've had hospital readmissions, developed any other health problems, and had any loss of income or insurance due to their donation.

Separate proposals lay out the first standard informed-consent document to explain the risks, and aim to eliminate variation in how centers test a donor's fitness.

The proposals are open for public comment through late December, before a final decision next year. Among the concerns are donor cooperation and whether transplant centers have the staff and money to do the tracking.

The National Kidney Foundation has long pushed for such monitoring, and some transplant centers that specialize in living donations already try.

New York's Mount Sinai Medical Center, for example, opened a living-donor center two years ago that offers nutrition and other post-donation counseling in addition to health checks.

At Georgetown University Hospital in Washington, Dr. Jennifer Verbesey recently saw a woman who was doing fine medically after donating a kidney to her son, but had post-surgery depression.

"For a lot of people, there are a lot of ethical and emotional issues after transplant," Verbesey says. "If you tell me 99 percent of people will not have a problem, I still want to make sure I'm there to find the one person that might."

___

EDITOR'S NOTE � Lauran Neergaard covers health and medical issues for The Associated Press in Washington.

___

Online:

Transplant proposals: http://tinyurl.com/lja8nx

Powered By WizardRSS.com | Full Text RSS Feed | Amazon Plugin | Settlement Statement

AP IMPACT: More kids skip school shots in 8 states (AP)

ATLANTA � More parents are opting out of school shots for their kids. In eight states now, more than 1 in 20 public school kindergartners aren't getting all the vaccines required for attendance, an Associated Press analysis found.

That growing trend among parents seeking vaccine exemptions has health officials worried about outbreaks of diseases that once were all but stamped out.

The AP analysis found more than half of states have seen at least a slight rise in the rate of exemptions over the past five years. States with the highest exemption rates are in the West and Upper Midwest.

It's "really gotten much worse," said Mary Selecky, secretary of health for Washington state, where 6 percent of public school parents have opted out.

Rules for exemptions vary by state and can include medical, religious or � in some states � philosophical reasons.

Reasons for skipping some school shots vary. Some parents are skeptical that vaccines are essential. Others fear vaccines carry their own risks. Some find it easier to check a box opting out than the effort to get the shots and required paperwork schools demand. Still others are ambivalent, believing in older vaccines but questioning newer shots against, say, chickenpox.

The number of shots is also giving some parents pause. By the time most children are 6, they will have been stuck with a needle about two dozen times � with many of those shots given in infancy. The cumulative effect of all those shots has not been studied enough, some parents say.

"Many of the vaccines are unnecessary and public health officials don't honestly know what the effect of giving so many vaccines to such small children really are," said Jennifer Margulis, a mother of four and parenting book author in Ashland, Ore.

But few serious problems have turned up over years of vaccinations and several studies have shown no link with autism, a theory from the 1990s that has been widely discredited.

To be sure, childhood vaccination rates remain high overall, at 90 percent or better for several vaccines, including those for polio, measles, hepatitis B and even chickenpox. In many states, exemptions are filed for fewer than 1 percent of children entering school for the first time.

Health officials have not identified an exemption threshold that would likely lead to outbreaks. But as they push for 100 percent immunization, they worry when some states have exemption rates climbing over 5 percent. The average state exemption rate has been estimated at less than half that.

Even more troubling are pockets in some states where exemption rates much higher. In some rural counties in northeast Washington, for example, rates in recent years have been above 20 percent and even as high as 50 percent.

"Vaccine refusers tend to cluster," said Saad Omer, an Emory University epidemiologist who has done extensive research on the issue.

While parents may think it does no harm to others if their kids skip some vaccines, they are in fact putting others at risk, health officials say. No vaccine is completely effective. If an outbreak begins in an unvaccinated group of children, a vaccinated child may still be at some risk of getting sick.

Studies have found communities with higher exemption rates sometimes are places where measles have suddenly re-emerged in outbreaks. Vaccinated kids are sometimes among the cases, or children too young to be vaccinated. Last year, California had more than 2,100 whooping cough cases, and 10 infants died. Only one had received a first dose of vaccine.

"Your child's risk of getting disease depends on what your neighbors do," said Omer.

And while it seems unlikely that diseases like polio and diphtheria could ever make a comeback to the U.S., immunization expert Dr. Lance Rodewald with the federal Centers for Disease Control and Prevention says it could happen.

"Polio can come back. China was polio free for two decades, and just this year, they were infected from Pakistan, and there is a big outbreak of polio China now. The same could happen here," Rodewald said in an email.

He cited outbreaks of Hib, a disease that can lead to meningitis, among the Amish who don't consistently vaccinate their children. Russia had a huge diphtheria outbreak in the early to mid-1990s, he said, because vaccine coverage declined. "Measles is just visible, but it isn't the only concern," Rodewald said.

For its review, the AP asked state health departments for kindergarten exemption rates for 2006-07 and 2010-11. The AP also looked at data states had previously reported to the federal government. (Most states don't have data for the current 2011-12 school year.)

Alaska had the highest exemption rate in 2010-11, at nearly 9 percent. Colorado's rate was 7 percent, Minnesota 6.5 percent, Vermont and Washington 6 percent, and Oregon, Michigan and Illinois were close behind.

Mississippi was lowest, at essentially 0 percent.

The AP found that vaccine exemptions rose in more than half of states, and 10 had increases over the five years of about 1.5 percentage points or more, a range health officials say is troubling.

Those states, too, were in the West and Midwest � Alaska, Kansas, Hawaii, Illinois, Michigan, Montana, Oregon, Vermont, Washington and Wisconsin. Arizona saw an increase that put that state in the same ballpark.

Exemption seekers are often middle-class, college-educated white people, but there are often a mix of views and philosophies. Exemption hot spots like Sedona, Ariz., and rural northeast Washington have concentrations of both alternative medicine-preferring as well as government-fearing libertarians.

Opposition to vaccines "is putting people together that normally would not be together," observed Elizabeth Jacobs, a University of Arizona epidemiologist looking at that state's rising exemption rates.

What many of exemption-seeking parents share, however, is a mental calculation that the dangers to their children of vaccine-preventable diseases are less important than the possible harms from vaccine. Or they just don't believe health officials, putting more stock in alternative sources � often discovered through Internet searches.

"We are being told this by every government official, teacher, doctor that we need vaccines to keep us safe from these diseases. I simply don't believe that to be true. I believe all the diseases in question were up to 90 percent in decline before mass vaccines ever were given. I don't think vaccines are what saved the world from disease. I think effective sewer systems, nutrition, and handwashing (are the reasons)," said Sabrina Paulick, of Ashland, Ore. She's part-time as a caregiver for elderly people in their homes and a mother of a 4-year-old daughter.

Parents say they'd like to reserve the right to decide what vaccinations their children should get, and when. Health officials reply that vaccinations are recommended at an early age to protect children before they encounter a dangerous infection. "If you delay, you're putting a child at risk," said Gerri Yett, a nurse who manages Alaska's immunization program.

Analyzing vaccination exemptions is difficult. States collect data differently; some base their exemption rates on just a small sample of schools � Alaska, for example � while others rely on more comprehensive numbers. So the AP worked with researchers at CDC, which statistically adjusted some states' 2010-11 data for a better comparison.

It's also not clear when an exemption was invoked against all vaccines and when it was used to excuse just one or two shots. CDC officials think the second scenario is more common.

Also, states differ on some of the vaccines required and what's needed to get an exemption: Sometimes only a box on a form needs to be checked, while some states want letters or even signed statements from doctors.

Meanwhile, some parent groups and others have pushed legislators to make exemptions easier or do away with vaccination requirements altogether. The number of states allowing philosophical exemptions grew from 15 to 20 in the last decade.

Some in public health are exasperated by the trend.

"Every time we give them evidence (that vaccines are safe), they come back with a new hypothesis" for why vaccines could be dangerous, said Kacey Ernst, another University of Arizona researcher.

The exemption increases have come during a time when the government has been raising its estimates of how many children have autism and related disorders. Some experts suggest that parents have listened intently to that message, with some believing the growing roster of recommended shots must somehow be related.

"I don't understand how other people don't see that these two things are related," said Stacy Allan, a Summit, N.J., mother who filed religious exemptions and stopped vaccinating her three children.

Several parents said that while they believe many health officials mean well, their distrust of the vaccine-making pharmaceutical industry only continues to grow.

"I wouldn't be one to say I am absolutely certain these things are hurting our children," said Michele Pereira, an Ashland mother of two young girls. She is a registered nurse and married to an anesthesiologist. While her daughters have had some vaccinations, they have not had the full recommended schedule.

"I feel like there are enough questions out there that I don't want to take the chance," she said.

___

Associated Press writer Jeff Barnard in Grants Pass, Ore., contributed to this report.

Powered By WizardRSS.com | Full Text RSS Feed | Amazon Plugin | Settlement Statement