Living organ donors may get new protections

Still, some doctors object to the government stepping in to regulate a field that has been self-policed. The last time HHS tried to regulate transplantation — specifically, how organs were distributed — it led to a yearslong battle.

Dr. Richard Freeman, a liver surgeon at Tufts University, noted the proposed standards were developed by the private transplant network, which does its own, more collegial review of transplant programs. He fears the government will automatically conclude there are problems when a detailed inquiry might find none.

“Maybe the quality is just fine,” he said.

Boone, whose husband died after donating part of his liver, rejects that argument, saying, “Any transplant center of excellence that’s doing a good job will not be afraid of accountability.”

Risks without medical rewards
Many say federal oversight is particularly essential to protect living organ donors, who agree to undergo a procedure that has risks without medical rewards.

Kidney and sometimes liver transplant patients are now routinely urged by their physicians to seek living donors after being told it will take years before they reach the top of the waiting list, which now numbers more than 87,000 for all organs. Relatives and friends could feel pressured to say yes.

Last year, there were nearly 7,000 living organ donors — more than double the number a decade ago. Most gave a kidney; about 300 gave a liver lobe, and 28 donated a piece of lung.

The proposed Medicare rules would include requirements that transplant centers “fully inform” potential donors about their right to opt out at any point, as well as the “medical or psychosocial risks to the donor.”

Additionally, centers would have to tell would-be donors that future health problems related to the donation may not be covered by their insurance and that their ability to obtain health, disability or life insurance may be affected.

Even so, that wouldn’t guarantee that potential donors would know the risks, because little national data exist on long-term medical effects on living donors. An HHS advisory committee has recommended a long-term registry of donor health and welfare, but it has not been implemented.

That committee also recommended that an independent advocate be established at each transplant center to look out for donors’ interests without regard to the would-be recipient’s health or the surgeons’ interests.

It’s essential, argued Vickie Hurewitz, whose husband Mike died in New York City after giving a piece of liver to his brother.

“An advocate must follow the donor from the time he walks in the door until discharge,” she said. “Somebody has to protect the donor from himself.”

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