Federal Presumed Consent Law: The Answer to the Shortage of Organ Donors in the United States

As of June 28, 2008 there are  99,193 people waiting for an organ transplant in the United States.  One person is added to the waiting list every 12 minutes.  Every year, more than 7,500 people on the waiting list die needlessly because the U.S. donation rate meets only about half the need for organs.  The waiting list has doubled in number since 1996.  Only abou 35% of potential donors actually become donors.  This is due to diseased and deteriorated organs that, when inspected by transplant surgeons, are not found suitable for transplantation.  In the United States, we only allow donations by altruistic means; we are entirely dependent upon charitable organ donations.  The need for available organs has outpaced our donation rate.  In contrast, several European countries operate their donation systems  by "presumed consent".  In other words, unless an individual or his/her family chooses to "opt out", a loved one's organs are always available to be gifted because it is "presumed" they consented to do so.  This can greatly increase the organs available for recovery,and as a result decrease waiting times and prevent the deaths and lessen the suffering of those who are so greatly ill.  With a "presumed consent" law in effect between 1989 and 1999, the number of donor gifts in Spain increased from 14.3 to 33.7 per million population, a 136% increase.  Compare this to an increase in the U.S. during the same period from 16.4 to 21.8 donors per million population, only a 33% increase.  In Belgium, after passing its "presumed consent" law in 1986, donations rose dramatically.  A specific example illustrates the difference between "presumed consent" and the "opt-in" approach when a transplant center located in Leuven adopted the "presumed consent" and within 3 years its donation rate climbed from 15 to 40 donors per million.  The Antwerp center did not change its policy and as a result, its rates remained static for the same period.  In Australia, a "presumed consent" law was passed in 1982; by 1990, rates of donation had quadrupled to almost equal the need.

The National Organ Transplant Act (NOTA) passed by Congress in 1984 outlawed the sale of human organs.  In addition, it required the development of a national system for organ sharing and scientific registry to collect and report transplant data.  This organizaton is known as the Organ Procurement and Transplant Network (OPTN), and is currently the nationwide network responsible for organ procurement, allocation and distribution.  The OPTN consists of the United Network for Organ Sharing (UNOS) and many Organ Procurement Organizations (OPOs) throughout the United States. This organization has done a remarkable job of directing this system, but it has been unable to increase organ donations to meet the need.  The medical costs associated with those gravely ill patients on the waiting list are phenomenal.  I waited on the list for abut 5 years. The medical costs for 15 hospitalizations were roughly $250,000.  Weekly infusions of albumin cost in the neighborhood of $100,000 per year.The transplant surgery  and post-operative care was circa $350,000.  Pre-transplant medical costs were higher than the cost of the surgery itself.  For kidney transplant patients waiting on the list (who constitute a majority (75k of 98k) the cost of 1 year's dialysis is equal to the cost of the  transplant surgery.  If Americans would adopt a "presumed consent" policy rather than the "opt-in" or altruistic/charitable donation method currently in practice, those medical costs would not have been incurred and could have gone to help others in medical distress or for medical research to stop the suffering of others.

I lost 5 years of my life, waiting.  I could have finished college, gone to grad school, enjoyed my grandchildren.  As it was, I toughed it out...waiting....sick...hoping...  Thousands of others are doing the same thing, right now, needlessly.

Those opposed might say, "Why should we have to bother to "opt-out"?  Isn't it our right to assume we don't become donors unless we make an affirmative choice?"  The reply:  should the loss of someone's life take precendence over an inconvenience for you?  In fact, "presumed consent" does take into account the individual's right to choose.  In the European countries currently participating, an individual's wishes are carried out and their organs not gifted.  This approach preserves the American ideal of "freedom to choose" and does not encroach upon the rights of those who do not wish to participate, whatever their reason.

By starting this petition, alliances can be formed with organizations in (hopefully) all the states, encouraging them to begin conversations with their Senators and Representatives.  This issue can then be examined, discussed, and considered by the public and the Congress.  Expert testimony can be offered by those in the medical community, educational organizations associated with the transplant community, transplant recipients, donors and their families.  Bills can be introduced on the floor of Congress and we can all work for passage of this extremely important legislation.

Thank you for your support!