Eight years ago, Los Angeles resident Patricia Abdullah decided to donate a kidney to an acquaintance. She calls it one of the proudest moments of her life.
Last year, Abdullah, 61, lost her job with a publishing company. With it, she lost her employer-based health insurance.
Now she wonders what will happen if she can't find another job with group coverage. If she turns to the individual insurance market, will her act of compassion as an organ donor be perceived by insurers as a "preexisting condition," resulting in higher premiums or even denial of coverage?
"My fear is that they won't accept me because of this," Abdullah said. "It's what they say about no good deed going unpunished."
This is a blurry aspect of the healthcare system. Advocates for organ donation assert that insurers can and do treat donors as having a preexisting condition, but there is little empirical evidence to back that up.
"I'm sure it happens," said Jason Kimbrough, a spokesman for the California Department of Insurance, "but it's not something we track."
Major insurance companies, including Blue Shield of California and Anthem Blue Cross, say they take such matters on a case-by-case basis and do not have standing policies.
But medical experts and people involved with organ transplants say that by not making clear what the financial risk to an organ donor may be, insurers are putting people in danger of losing affordable coverage and discouraging potential donors from helping others.
"It's a matter of informed consent," said James Walter, chairman of the Bioethics Institute at Loyola Marymount University. "To not make this risk clear is both dishonest and immoral."
Tom Mone, chief executive of OneLegacy, a L.A. nonprofit group that facilitates organ and tissue transplants throughout Southern California, said many people probably would think twice about donating an organ if they knew there was a chance that it could affect their health coverage. "Without a doubt it would be a factor," he said. "If people thought they could potentially lose coverage for something like this, I'm sure it would be a consideration."
According to the United Network for Organ Sharing, which collects data on every transplant in the United States, nearly 6,000 people donated a kidney last year. Almost 250 people donated a portion of their liver.
I contacted most major health insurers to ask whether a person who had donated a kidney or partial liver would be regarded as having a preexisting condition and thus subject to higher rates or denial of coverage.
Not one responded with a definitive answer.
"We would have to look at the specific facts before making a decision," said Ashley Wilkerson, a spokeswoman for Blue Shield of California.
A spokeswoman for Anthem Blue Cross advised me to put the question to the California Assn. of Health Plans, an industry group.
A spokeswoman for the association told me instead to put the question to Anthem and other individual insurers.
The only major insurer that agreed to discuss the matter in some detail was Kaiser Permanente, although its basic position was no different from its more reticent kin.
"Something like this is viewed like any other complicated surgery," said Jim Anderson, a spokesman for the healthcare provider. "It would be on a case-by-case basis."
He added: "Looking for black-and-white answers to complicated medical questions is a difficult thing to do."
Not that difficult, actually. A considerable body of data exists for the well-being of kidney and liver donors after the transplants are completed. In most cases, the donor goes on to live a normal and healthy life.
"I'm perfectly fine," said Kevin Monroe, a Lakewood resident who donated a kidney to his brother in 1998. "I do everything now that I did before."
He said he's been fortunate to remain covered by his employer, the oil company ConocoPhillips. But Monroe, 56, said he's concerned about what would happen if he had to seek insurance elsewhere and had to report that he donated a kidney to a loved one. "Even though I'm perfectly healthy, it could be a problem," he said.
Health insurers are sensitive to being perceived as an obstacle to organ donation. They don't want to be seen as discouraging such selfless and courageous acts.
"We and every other healthcare organization would encourage people to donate organs," said Kaiser's Anderson.
If that's the case, the answer seems obvious: Make it the clear policy of an insurance provider to not penalize organ donors in any way.
In other words, insurers should specify up front for policyholders that donating an organ will in no way affect their rates or access to coverage.
Better yet, they should reward organ donors by offering, say, a 15% discount on premiums for at least five years as an incentive for helping others.
They should also provide free wellness tests annually to ensure that the donor experiences no complications related to the transplant.