Not nearly enough to go around

Health Reporter

September 5, 2004

If you want to be an organ donor in Illinois, it isn't enough to sign your consent on your driver's license.

After you die, your next of kin can still veto a donation. It happens in about one out of five cases, and these family vetoes have cost Illinois transplant patients hundreds of life-saving organs.

To make more organs available, a state task force is studying whether to make an individual's desire to donate binding on his or her family.

"It would be a step in the right direction," says Dr. Michael Millis, a University of Chicago transplant surgeon. "It would increase donation."

HOW TO BECOME AN ORGAN DONOR

Sign the organ-donor portion of your driver's license or state ID card. Also, you can join the Illinois Organ and Tissue Registry by going online to www.cyberdriveillinois.com or calling (800) 210-2106 toll-free.

Discuss your desire to donate with your family because, regardless of your stated wishes, a hospital won't take any of your organs without permission from your next-of-kin.

ORGAN-TRANSPLANT COSTS

Heart: $472,000
Lung: $428,000
Heart-lung: $616,000
Liver: $389,000
Kidney: $190,000
Pancreas: $166,000
Cornea: $17,000

These typical fees include total billed charges for evaluation, hospital, organ procurement, doctors' fees, follow-up and anti-rejection drugs. Health plans typically negotiate discounts as high as 50 percent from billed charges.

SOURCE: MILLIMAN USA

Chart: U.S. organ transplant waiting list

In another move to increase donations, the Illinois Legislature recently passed a law to allow HIV-positive donors to donate to HIV-positive patients.

Other states are experimenting with measures to boost donations such as providing financial assistance to donors.

Fifty years after the world's first successful transplant, organ transplantation has, in a sense, become a victim of its own success. So many organs are being transplanted -- more than 25,000 in the United States last year -- that there aren't nearly enough to go around. An average of 17 patients die each day while waiting for an organ.

The shortage of deceased donors is prompting more living donors to give kidneys or portions of their livers, lungs or intestines to family members or friends. Last year, there were more live donors (6,822) than deceased donors (6,457).

Here's a look at some of the efforts to increase the supply of organs:

Honoring a donor's wishes

From May 2002 to April 2004, 48 Illinois families refused to let organs be taken from the bodies of family members, even though their loved ones had registered as organ donors before they died. Each donor supplies an average of four organs, so these 48 vetoes meant nearly 200 fewer organs were available for transplants.

Thirty-two states have enacted "first-person consent" laws that give the final say over donation to the individual. Earlier this year, the Illinois General Assembly formed a task force to study whether Illinois should also adopt first-person consent.

Helping donors

Some doctors and ethicists question whether appeals to altruism are enough to get people to donate organs. Paying for the organs is a federal crime, but several states provide indirect payments. A new Wisconsin law lets living organ donors deduct up to $10,000 in lost wages, travel and hotel bills related to the transplant. (Insurance plans typically pick up the donor's medical bills.) Donors, on average, will get an estimated $550 tax break. "If you donate an organ, that's noble enough," says Wisconsin state Rep. Steve Wieckert, architect of the legislation. "You shouldn't have to pay to be able to do it."

Georgia has passed virtually the same law, and similar bills have been introduced in Illinois and nine other states. Earlier this year, the Illinois House passed the bill, but the measure stalled in the Senate. Texas gives state workers up to 30 days paid leave to donate an organ. And a new federal bill will provide $25 million to states to pay for live donors' travel and related costs.

Swapping organs

Let's say Mr. Johnson would like to donate a kidney to his wife, and he's not a good match, but he does match Mr. Smith, an unrelated kidney patient. Meanwhile, Mr. Smith's wife doesn't match Mr. Smith, but she does match Mrs. Johnson. So they swap: Mrs. Smith gives a kidney to Mrs. Johnson. In return, Mr. Johnson gives a kidney to Mr. Smith.

A different kind of swap is called a list exchange. Let's say Mr. Rodriguez wants to donate a kidney to his daughter but doesn't match. So he donates to whomever is at the top of the kidney-transplant waiting list. In return, Mr. Rodriguez's daughter goes to the top of the list.

The New England Organ Bank has arranged five paired-donor swaps and nine list-exchange swaps. Chicago transplant centers are studying similar swap programs.

Accepting donors with HIV

Illinois recently became the first state to allow surgeons to transplant HIV-infected organs into HIV patients. Such transplants could not infect transplant recipients because the recipients already are infected. Northwestern Memorial Hospital doctors, who proposed the law, estimate there could be between five and 12 HIV donors a year from the Chicago area. Before it can take effect, though, Congress would have to amend a federal law that prohibits transplanting an organ from anyone with HIV.

This article posted October 9, 2004.