Earlier this week, the California senate unanimously passed state SB 1395, which is now before the state assembly. This bill will make California a leader in trying to ease the shortage of organs for transplantation. This is significant because currently California has the longest transplant waiting lists (for both average wait time and total number of patients) in the country.

Last year, Steve Jobs, the founder and CEO of Apple and who lives in California, received a liver transplant in Tennessee. He was on the waiting list in both states. He put himself on multiple lists because it increased his chance of getting an organ quickly. The waiting time for a transplant varies considerably. In California the median wait time for a liver is over three years while in Tennessee it is only about four months. (Mr. Jobs’ case was mentioned in an Apr 2010 blog post.)

After this experience, Mr. Jobs lobbied Gov. Arnold Schwarzenegger to push for changes in California law to improve access to organs. The two of them appeared at a press conference in March to announce the introduction of state SB 1395. A really good description of Mr. Jobs’ role is given in Business Insider Apr 2010.

JobsSpeaksl When Jobs speaks, Schwarzenegger listens. Photo from Business Insider

The bill does a couple of things. First, it makes a seemingly minor change to the procedure required to get a drivers’ license. Currently, applicants are told that they can indicate on their licenses that they want to be organ donors upon death. Those that agree have a pink dot added to their license, a process called opt-in. The bill would change this to require that all applicants declare whether they want to be organ donors or not, called mandated choice. Previous research indicates that about only about half of people who would donate actually bother to sign up (New York Times Sep 2009). Thus, mandated choice may double the number of declared donors.

Incidentally, not all states actually compile and distribute a registry of organ donors based on DMV records. In states without a registry it is up to each hospital to get donor information from the patient. Further, in the U.S., regardless of what is stated on the patient’s driver license, organ procurement organizations (OPOs) always seek permission from family members prior to harvesting organs and tissue from a deceased patient. In one-fifth of cases, family members do not honor the wishes of the deceased and refuse to allow the organs to be removed. So if you want to be a donor, it is important to make your wishes known to your family members.

Also note that mandated choice is different from presumed consent, in which people are presumed to be willing to donate unless they state that they want to opt-out. Presumed consent is controversial and unlikely to be adopted anywhere in the U.S., though it is under discussion in Illinois, New York, and possibly other states. Several countries, including Spain and Greece, use it. These countries have higher deceased donation rates. However, it turns out there is an inverse correlation between deceased donor rates and live donor rates. Transplants from live donors provide much better medical outcomes than transplants from deceased donors. Thus, presumed consent may actually be detrimental to the goal of improving patient outcomes.

The second impact of the California bill will be to establish an Altruistic Living Donor Registry, a list of people willing to donate a kidney to a stranger. They would be matched with compatible recipients on the UNOS waiting list. Since there are over 10,000 Californians on the waiting list, any person who signed up to be a donor would be matched almost immediately. So it is unlikely there would actually be a donor list.

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A story about California’s proposed Altruistic Living Donor Registry in the San Fran. Chron. Apr 2010 focuses on the experience of David Jacobs a kidney transplant recipient who later founded Silverstone Solutions. Silverstone’s Matchmaker software was mentioned in a Mar 2010 blog post.

[Update1: I erroneously stated in the fifth paragraph that no state maintains a registry of donors. Most states do. Much thanks to Alvin Roth at Harvard for pointing out that the Massachusetts DMV maintains the registry that it then shares with the OPOs. In addition to having a sharp eye, Mr. Roth is an expert on market design and a founder of the New England Program for Kidney Exchange. His work is mentioned in a Mar 2010 blog post.]

[Update2: Gov. Schwarzenegger signed SB 1395 in Sep 2010.]

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