Tuesday, December 23, 2008

Incentives for organ donors, continued

Two eminent transplant docs, Drs. Frank Delmonico and William Harmon, have sent me an open letter expressing their concerns about proposed legislation described in a recent WSJ editorial (which I blogged about here). Dr. Delmonico, a transplant surgeon, is a man of many parts, including being past president of UNOS, and a founder of the New England Program for Kidney Exchange, and one of the most active speakers on the "against" side of the debate about compensating organ donors. Dr. Harmon, a transplant nephrologist, is the Chief of the division of Nephrology and a Professor of Pediatrics at Children's Hospital in Boston. Here is their letter:

The recent Wall Street Journal (WSJ) editorial “Wait Listed to Death” portrays an unrealistic picture of organ transplantation in the United States and proposes a change in our national policy that the rest of the world considers unethical and repugnant. The WSJ is recommending a market for organs which is the basis of legislation now proposed by Senator Specter of Pennsylvania.

Senator Specter’s legislation would lift NOTA’s restrictions on the payment of “valuable consideration” for organs from any “actions” by any level of government (from federal to tribal) that aim to increase the number of organs for transplantation. These “actions” could include authorizations for organizations—whether for-profit or nonprofit—to run incentive programs, different from one state to another, with no federal regulatory oversight.

Thus, the Specter legislation introduces a radical change after more than 50 years of transplantation that has always considered donated organs to be a gift. Benefits such cash equivalents would be permitted that could include stocks, bonds, housing, motor vehicles, tuition, funeral costs, tax incentives, etc. These “benefits” are no different than cash in soliciting individuals to be organ donors.

We commend Senator Specter’s concern about the imbalance of organ donors and candidates awaiting transplantation; but the WSJ editorial exaggerates that imbalance by citing statistics that are not true: a large proportion of those who die “while waiting” are not really active candidates and would not be helped by a system of financial incentives for organ donation. Moreover, approximately 40% of those that are dying on the list are in need of hearts, livers and lungs that will not be affected by markets for living unrelated donors. An eBay offer for lung donors, as the WSJ misrepresents, is not the issue; but a market for kidneys is an international concern.

These markets have been tested in many parts of the world. The single consistent result of those experiments has been the abuse of human rights. For that reason, the international transplant community was recently convened in Istanbul to combat organ trafficking and transplant tourism. The result was the Declaration of Istanbul that condemns transplant commercialism, because it targets the indigent and impoverished and inevitably leads to inequity and social injustice.

The Istanbul Declaration is now having success by regulatory authorities closing rogue transplant centers and prosecuting unethical doctors.

Importantly, in the United States, volunteer efforts such as the “Collaborative for Organ Donation” initiated by Secretary Thompson, have resulted in a major increase in deceased organ donors by appropriately educating both professionals and donor families. The expansion of these voluntary efforts has not yet reached its maximum potential.

Legislation can also support live donors by programs that do not currently exist. Federal protections for live donors to have job security, assured donor leave, and health and life insurance for donation-related events, would provide donor care and remove obstacles for those who wish to be organ donors.

Legislation must also consider provisions for organ failure prevention. The National Kidney Disease Education Program is an initiative of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH), and the Department of Health & Human Services (DHHS) that can perform blood pressure screening and an inexpensive urine analysis to detect patients with hypertension and kidney dysfunction and treat them before the necessity of dialysis or transplantation.

Please join us in supporting legislation that will be a model testimony for the rest of the world. Otherwise, the legacy of transplantation is at risk if the United States endorses market programs that permit payments for organs; it will immediately and irreversibly open the door to a resumption of human rights abuses in many parts of the world.

NB: here is the 2008 Istanbul Declaration to which the letter refers.


Unknown said...

A free market in human organs would save thousands of lives every year. Americans bury or cremate 20,000 transplantable organs every year. Most of that deadly waste would be eliminated if people were paid for their organs.

As the death toll from the organ shortage mounts, public opinion will eventually support an organ market. Changes in the law will then follow.

In the mean time, there is an already-legal non-monetary organ market operating in the United States. It's called LifeSharers.

LifeSharers offers a trade -- if you'll donate your organs through LifeSharers when you die, LifeSharers will increase your chances of getting a transplant should you ever need one to live.

Membersship in LIfeSharers is free at www.lifesharers.org or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.

Anonymous said...

Lifesharers may be "legal" but it is also non-binding. You simply can't 'direct' where your deceased organs go. It's a Stephen King story waiting to happen: someone kills themselves in such a way to 'preserve' their organs because someone they love needs a heart?

Also, there is a vast difference between increasing the supply of deceased organs and those of living organ donors. Organ donation surgery is not minor, and some donors do experience short and long-term physical consquences. Dr. Starzl, inventor of the liver transplant surgery, is a strong opponent of living donation on the grounds it violates the Hippocratic Oath of "First, do no harm..."

More so, there is no mandated follow-up for living donors. Only in the past two years has UNOS required two year physical follow-ups for living donors but many LDs do not comply because they are uninsured and the recipient's insurance only covers 1 yr post-surgery.

While the transplant community recognizes that a certain percentage of LDs suffer depression post-surgery, there is no support system in place, locally or nationally, for LDs' emotional and psychological needs. An LD who has watched their 'gift' be rejected or their recipient die is left to fend for themselves.

Much needs to be done to care for our current living donors before we, as a nation, can implement provisions to increase their numbers.

Unknown said...

LivingDonr101 wrote "You simply can't 'direct' where your deceased organs go." That is incorrect.

Directed donation as practiced by LifeSharers members is legal under federal law and under the laws of all 50 states.

UNOS does not interfere with legal directed donations.