Wednesday, June 24, 2009

Is Steve Jobs a registered organ donor?

"Reports that Apple CEO Steve Jobs traveled to an unidentified hospital in Tennessee for a liver transplant this March have sparked a debate over whether the wealthy are able to use their resources to game the national organ donation system," according to an ABC News story.

Did Steve Jobs jump the waiting list? Is it fair that Steve Jobs was on the waiting list at multiple transplant centers? Should multiple listing be allowed? These are the questions being asked.

Here is the question nobody is asking: Is Steve Jobs a registered organ donor? If he wasn't willing to donate his organs after his death, then he got an organ that should have been given to a registered organ donor.

If you'd like to donate your organs to other organ donors, please join LifeSharers at www.lifesharers.org. Membership is free.

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Saturday, June 20, 2009

UNOS says deceased directed donation is legal

A few weeks ago, singer Natalie Cole received a kidney transplant through directed donation. The family of a deceased donor asked that her kidney be offered to Ms. Cole. The kidney turned out to be a good match for her, and the transplant was performed.

The United Network for Organ Sharing, which runs the national organ allocation system, decided to clarify the status of directed donation after Ms. Cole's transplant sparked a lot of public questions. Here is an excerpt from UNOS' news release:

Directed donation is a request made by a donor or donor family to transplant a specific recipient. This practice is legally authorized by the Uniform Anatomical Gift Act (UAGA) and by most state anatomical gift laws, which use the UAGA as a guide. (A few state laws are silent on directed donation but do not specifically disallow the practice.)

The policy of the national Organ Procurement and Transplantation Network (OPTN), operated by United Network for Organ Sharing (UNOS) under federal contract, recognizes directed donation as long as the agencies involved take steps to verify the medical suitability of the organ offer for the specified recipient. The Federal regulation that guides the OPTN (the OPTN Final Rule) expressly allows directed donation to a named individual.

In recent years, at least 100 deceased donor transplants each year have occurred through directed donation. Such requests occur most frequently when the donor or donor family either are related to the recipient or know the recipient personally. Past instances of directed donation that have resulted in media coverage include a daughter-to-father heart transplant and a heart transplant from a church member to the church's pastor. In many instances, only one organ from a deceased donor is directed to a specific recipient; other organs from the donor are allocated according to OPTN policy.

Directed donation is the process that LifeSharers members use to offer their organs to other LifeSharers members. Our donation process is carefully designed to comply with federal and state laws.

Some people say LifeSharers members donate their organs to a group (which is not allowed), not to a specific recipient. These people are misinformed. The LifeSharers donation agreement reads, in part: "For each organ of my body donated, I designate as donee that LifeSharers member who is the most suitable match as defined by the criteria in use by LifeSharers at the time of my death." When organs from a LifeSharers member become available, we rely on the member's next-of-kin to call LifeSharers at 1-888-ORGAN88, get the names of members who need those organs, and direct the donation of those organs to these specific recipients.

There have been suggestions that transplant personnel might not cooperate with this process. This is highly unlikely. In fact, it is specifically their job to cooperate, as UNOS' news release explains:
The role of transplant professionals is to ensure that any donor offer is handled properly and that the safety and interests of the donor and donor family are protected. This is true in the rare instance of directed donation as well as the commonplace, non-directed allocation of organs to transplant candidates.
It's hard to imagine that transplant professionals, who are all highly trained to do everything they can to facilitate organ donations, would not help make sure that legal directed donations take place.

Please join LifeSharers if you want to donate your organs to other organ donors.

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Steve Jobs' transplant highlights organ allocation unfairness

"Apple Inc. CEO Steve Jobs's decision to travel to Tennessee for a liver highlights the significant disparities in transplant waiting times across the country -- the source of a longstanding controversy over the fairest way to distribute scarce organs," according to a story by Laura Meckler in the Wall Street Journal. The waiting time for a liver transplant in Tennessee is much shorter than it is elsewhere.

Disparities in waiting times are not the only unfair aspect of organ allocation in the United States. Under the rules written by the United Network for Organ Sharing, people who haven't agreed to donate their own organs when they die get treated the same as registered organ donors. It's not fair to give organs to non-donors as long as there are registered organ donors who need them.

If UNOS gave organs first to organ donors it would create an incentive for non-donors to donate. More organ donors means fewer people dying waiting for organ transplants.

In the face of UNOS inaction on this, LifeSharers has created a way for Americans to donate their organs to other organ donors. We use directed donation, which is the process that got Natalie Cole her kidney a few weeks ago. Directed donation is legal under federal law and under the laws of all 50 states.

Anyone who wants to donate their organs to other organ donors can join LifeSharers at www.lifesharers.org.

And by the way, many people think organs are allocated first to the people who need them most, but that's now how the system works. Instead, geography plays a big role, as Ms. Meckler explains:

The current system relies heavily on illness and geography, with the chances of getting a donated liver much better for those waiting in the same local area as the donor. In many cases, priority is given to those who sign up locally, even if there are sicker patients waiting in the next city or next region.

Keep this in mind the next time you hear someone criticize LifeSharers because our system doesn't give organs to the people who need them the most.

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Friday, June 19, 2009

More old people dying waiting for transplants

Nearly half of kidney transplant waiting list patients over age 60 are at risk of dying before they receive a deceased-donor organ, according to a paper published in the Clinical Journal of the American Society of Nephrology.

A MedPage Today story says the paper's authors projected that 46% of older patients placed on the waiting list in 2006-07 would die before receiving a deceased-donor transplant, up from a projected 22% in 1995.

The waiting time for a deceased-donor transplant rose significantly from 1995 to 2007, as demand for transplantable organs grew faster than supply.

Things may get even worse for older patients who need transplants. The United Network for organ sharing is studying a proposed policy for organ allocation that would give younger patients more rapid access to deceased-donor transplants at the expense of older patients.

Meanwhile, half of the organs that could be donated are buried or cremated instead. A big reason for this is that UNOS allocation policies allow people who haven't agreed to donate their organs when they die to remain eligible to receive organs if they need one to live. If UNOS allocated organs first to registered organ donors, more people would donate their organs and fewer people would die waiting for transplants.

If you'd like to donate your organs to other registered organ donors, please join LifeSharers at www.lifesharers.org.

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