How Haley Barbour's Freedom-for-Kidney-Deal for Scott Sisters Makes U.S. Like China
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On Friday, the State of Mississippi and Gov. Haley Barbour released two sisters from prison as part of an organ-donor deal done in callous disregard for organ transplant law and transplantation ethics. While no one with a modicum of compassion would object to the suspension of the sisters' unduly harsh sentence, the suspension demands that one sister trade a bodily organ for her freedom.
But despite major protests by the transplant community, Barbour and the state refused to change the terms of the prisoners' release. It now remains to be seen if the U.S. attorney general will enforce the law, and whether the United Network for Organ Sharing -- the entity responsible for overseeing transplants -- will ensure that no hospital violate the provisions of the 1984 National Organ Transplant Act by accepting one of the sisters as donor when there is suspicion that she has received what the law calls “valuable consideration in return for donating her kidney. Lack of compliance with the law could open the door to coercive practices in transplantation where prisoners are concerned.
Gladys and Jaime Scott went to a Mississippi prison on a life sentence in 1994 after their conviction for committing an armed burglary which netted the then-teens $11. On December 30, 2010, Mississippi Gov. Haley Barbour suspended the life sentences, but one sister's release is contingent on her giving a kidney to the other.
There’s no doubt that a life sentence for an $11 robbery -- even one for which they were convicted of hitting the victims over the head with a shotgun before making off with 11 bucks -- was extreme, and parole after 16 years in jail is long overdue.
What is not sensible, as well as illegal and unethical, is demanding that one sister donate her kidney to the other, even if the sister says she would have done so anyway. Barbour and the parole board, it seems, were swayed as much by the cost to the prison system of the daily dialysis Jamie needed as by any sense that the verdict and sentence were unjust.
The sisters’ cause was championed by the NAACP which lauded the decision to release them. Their civil rights lawyer is actually the one that offered the kidney deal as a way to convince the reluctant governor and prison authorities to release both women. A classic case of passionate conviction for a good outcome ignoring the dangerous implications for some other issue.
According to the Associate Press, Barbour spokesman Dan Turner said that Jamie Scott was released because she needs the transplant. He said Gladys Scott's release is contingent on her agreement to donate her kidney. The parole board agreed to an indefinite suspension of their sentences, which is different from a pardon in that it comes with conditions and can be revoked. If, after her release, Gladys does not go ahead with the transplant, she can go back to jail.
According to USA Today, "It is unclear whether Gladys Scott is an organ match for her sister or whether she has health issues that could make the procedure risky." Barbour has refused to say what will happen if circumstances prevent Gladys from donating her kidney to her sister.
Now, perhaps there is a humanitarian bone on Barbour’s body, but it sounds far more like a state official who just wants to get an expensive prisoner off his hands. Jaime’s dialysis costs the state $200,000 a year. Budget cuts abound and health care -- including transplants -- is not immune from the knife. This past October, Arizona Governor Jan Brewer cut state funding for certain kinds of pancreas, liver, heart, lung, and bone-marrow transplants.
While donating a kidney is extremely safe when donors are healthy and a rigorous evaluation has taken place, it does have a small risk of death. Requiring a prisoner to agree to take this risk in return for parole violates international transplant standards and human rights. The idea that prisoners are able to consent to risky medical treatment in return for benefits is one that ethicists have long questioned. It’s one step removed from the Chinese government practice of selling the organs of executed prisoners and kidneys from live Falun Gong and others in jail.
The Chinese have made the practice illegal in response to international pressure, although few experts think it has stopped. Gov. Barbour and the prison board seem unaware that under the 1984 National Organ Transplant Act (NOTA) (42 U.S.C. 274e) it is "unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation." What could be more “valuable consideration” than a get-out-of-jail card? And given the state’s concern about the cost of Jaime’s dialysis, they too receive valuable consideration in dumping Jaime and Gladys on Florida for a possible transplant.
Now, according to NOTA, any person who violates the valuable consideration provision “shall be fined not more than $50,000 or imprisoned not more than five years, or both.” The state attorney general in Mississippi should move immediately to bar the parole if the condition of transplantation is not rescinded. And the U.S. Attorney General Eric Holder should uphold the National Organ Transplant Act and ensure that if the parole proceeds as planned -- with organ donation a requirement -- it be made clear that any hospital, physician or other individual including Mississippi state officials who participated in the procurement and transplant of the organ will be charged under NOTA.
NOTA, which was primarily designed to prevent organ trafficking, has been rarely enforced against traffickers. Instead it has served as a mechanism for that segment of the transplant community that is attached to the idea that the only ethical form of donation is one in which a donor makes a substantial sacrifice and takes the full risk of donation on themselves privately. The valuable consideration prohibition has been used to prevent government sponsored funeral benefits for deceased donors and health and life insurance for living donors. Even the now lauded kidney exchanges which involve several recipients exchanging matching kidneys from their donors were not implemented in many hospitals until NOTA was changed to specifically permit them. It seemed getting a donated kidney from someone else’s donor was no longer a gift, but a commodity. Some in the transplant community are obsessed with the purity of the gift, but not so concerned when it comes right down to dealing with real exploitation in the form of trafficking. Report after report has been written by the United Nations, the World Health Organization, and various professional associations, all wringing their hands about the importance of altruism while patients on the list die and organ traffickers continue to exploit the shortage. Last year only 17,000 kidney transplants were done for the over 87,000 people on the official UNOS kidney waiting list. While waiting for a kidney this year, 80,000 people died; they were replaced on the list by more than 80,000 new people with end-stage renal disease.
Organ traffickers in the U.S. operate with impunity, as do the off-shore brokers who arrange kidney transplants in developing countries. Those with kidney disease who return to the U.S. having taken advantage of transplant tourism (trafficking) obviously get care in the U.S., but no one is reporting their overseas jaunts to the cops. In fact, they have done nothing illegal. In particular cases, there is sympathy for the person whose life is at risk who goes on the black market and exploits someone poorer than they in order to live. These are tough, life-and-death decisions that are immoral, but perhaps not the kind of thing we want to put people in jail for.
Yet such sympathies do not justify turning a blind eye to brokers or even government officials who just don’t get what it means to voluntarily consent to give up your kidney. If we are serious about stopping organ trafficking, there are two solutions and both must be implemented. The first is to get serious about organ traffickers -- starting with Haley Barbour and the State of Mississippi -- and put all states on notice that prisoners do not lose their human rights and cannot be exploited for their organs. At the same time, those professional associations and opponents of trafficking, such as the National Kidney Foundation, should demonstrate their seriousness by lobbying for legislation with strict enforcement mechanisms that would make it a crime to arrange or go overseas for a commercialized transplant. So far, these groups have shown no political will to actual go after the worst violators of human rights, the traffickers in our midst.
The second and more effective solution to trafficking and the organ shortage is to stop pretending that we can solve it with better education about registering as an organ donor on death. Few of us are going to die with healthy organs just ready to be transplanted. And recent experience shows that all too few people are going to give their spare kidney on the basis of pure altruism, especially an altruism that leaves them exposed to medical risks. It is time to study whether or not an ethical, non-exploitative and safe regime of incentives for living and deceased donation would bring us closer to saving the lives of those with end-stage renal disease and putting the traffickers out of business forever.