When love isn't enough

September 10, 2004

HARVARD SCHOOL OF PUBLIC HEALTH

Center for Health Communication

Jay A. Winsten, Ph.D., Associate Dean and Center Director

Highlights from this week's issue of Harvard's World Health News

(www.WorldHealthNews.harvard.edu):

When love isn't enough

Without connections, Vermont woman died waiting for lung transplant

By , Globe Staff | September 7, 2004

By the end, had more seniority at Spaulding Rehabilitation

Hospital than some of the people who took care of her, celebrating holidays,

birthdays, and even high school graduation while tethered to an oxygen tank

as she waited for a lung transplant. For 18 months, lived on the

ninth floor of this hospital 200 miles from home, never giving up hope that

she would get her " miracle. "

But as a rare degenerative disease finally destroyed her lungs,

would get no miracle. Neither her youth nor her worsening condition

made any difference under the rules that determine who gets the few lungs

available for transplant and died this summer at 22, still waiting.

's death illustrates much that's wrong with the organ

transplant system, where patients are subtly pitted against each other in a

high-stakes competition: 86,177 people are waiting for an organ transplant

in the United States, but only about 25,000 will get them this year, leaving

thousands to die. Though the system is governed by elaborate rules to

prevent favoritism, ethicists say that the well-connected can improve their

transplant chances by maneuvers that include joining waiting lists in more

than one city to running advertisements appealing for an organ donation.

's surgeon said her best shortcut to a transplant would have been to

find two people each willing to give her a portion of one lung. But the

difficult task of finding these " living donors " fell entirely to 's

family, people from rural Vermont who had no connections in the Boston media

and who felt uncomfortable asking relatives and friends for such a profound

gift. New England organ transplant officials, meanwhile, as grew

sicker, could do little for fear of appearing to favor one desperately needy

patient over another.

" It's a question that still bothers me: Could we have written more letters?

Could we have asked more people? " said Ann Gilbert, 's mother.

" It's easy to ask people for money. It's hard to ask people for a part of

their body. "

But some families have no such reservations, doing whatever it takes to give

their loved one an edge. The family of Todd Krampitz, a 32-year-old dying of

liver cancer, put up billboards around Houston this summer appealing for

someone to give him a liver and directing people to a website,

ToddNeedsALiver.com.

Ethicists such as Arthur Caplan of the University of Pennsylvania, condemned

the strategy, saying Krampitz used money to " cut out of line " for a

transplant. But the publicity paid off: a family of an organ donor directed

that his liver go to Krampitz, who received his transplant on Aug. 12,

scarcely a month after his doctors said he needed it.

The Virginia-based United Network for Organ Sharing, set up by Congress in

1984 to manage the national organ supply, has tried to eliminate favoritism,

but the system has loopholes, Caplan said. In addition to end runs like

Krampitz's, affluent patients can seek treatment at more than one transplant

center so that they can be considered for organs in more than one region.

Currently, about 6,000 people are registered on more than one regional

waiting list.

Dr. Leo Ginns, a lung transplant surgeon at Massachusetts General Hospital,

said patients have offered to pay enormous amounts of money to get a

transplant more quickly " and I have categorically told them we don't do

that. " Still, public faith in the fairness of the system has been shaken

when celebrities receive transplants after very short waits. Former New York

Yankees slugger Mickey Mantle got his liver in Dallas after just two days on

the waiting list in 1995, prompting widespread criticism, though doctors

denied giving him special treatment.

Unfortunately, 's step-father Denis, a furniture store employee, and

mother, a snack bar manager, were in no position to offer bribes, put up

billboards, or get treatment at multiple transplant centers. Instead, they

played by the rules and waited.

got her last glimpse of Canaan, Vt., from the back of an

ambulance on Nov. 2, 2002, as she was rushed to an intensive care unit in

Concord, N.H., to keep her lungs from failing. Doctors quickly sent her on

to Mass. General, where she arrived weighing just 82 pounds.

suffered from a rare, genetically inherited condition, Ehlers-Danlos

Syndrome, that, doctors told the family, " made her lungs look like an

80-year-old, three-pack-a-day cigarette smoker. " For years, she had not let

respiratory problems get in the way of a normal life, playing baseball,

riding horses, and even playing the clarinet. When her breathing got so

labored that she needed oxygen, would sling the tank over a shoulder

as she headed out the door.

By the end of 2002, her condition was much worse: had a

tracheotomy, a hole cut in her throat, that allowed a ventilator to

mechanically inflate and deflate her lungs. Ginns, the lung transplant

surgeon, was blunt in his assessment: needed two new lungs or she

would die.

Unfortunately, lungs are among the most scarce organs for transplant, with a

waiting list that tripled during the last decade, while the number of

donations remained stagnant. As a result, lung transplant candidates

commonly wait two to three years for their surgery, and 9 percent die

waiting each year, a higher death rate than for any other organ waiting list

except intestines.

had to face a second reality: she would have to live at the

rehabilitation hospital because she needed to remain on a ventilator and be

close by, since lungs must be transplanted within six hours of removal.

Soon, she became the adopted daughter of the ninth floor, with Spaulding

Rehab staff sneaking her junk food, planning parties for her, and holding

her hand as she fell asleep. " She was so far from home. We were like her

family, " said Anne Marie Larocca, program director for Spaulding's complex

medical unit.

Early on, Ginns told and her parents about the possibility of living

lung donations, a relatively rare procedure that Mass. General most commonly

performs on younger transplant patients like . For the donor, the

procedure carries the same risks as any surgery and reduces his or her lung

capacity by 20 percent, which may preclude activities like marathoning or

mountain climbing.

But staff at Mass. General could not help the family find living donors, in

part because they don't want to seem to be pressing healthy people to risk

the surgery. Since there is no centralized system tracking people who have

agreed to make a lung donation, 's family started from scratch.

Ann Gilbert had the wrong blood type to make the donation, and both she

and felt uncomfortable asking people to take such a risk. So the

effort to find living donors didn't really take off until March of this year

when Spaulding chaplain Joan Horgan arranged TV interviews for to

discuss her need for a transplant. Horgan even offered to donate a lobe of

her lung, but she was too small. In the end, the family identified one

suitable donor, her aunt Shirley , but couldn't find the crucial

second.

As 's health slid precipitously in July, there was nothing the Mass.

General team could do to speed her transplant since lungs are allocated

based on seniority and whether the lung is a good match for the patient. The

United Network for Organ Sharing board voted to change the rules next year

so that the sickest patients who would benefit most from a transplant get

preference, but it comes too late for , who died on July 18.

Ultimately, the best hope for avoiding tragic endings like 's lies in

expanding the pool of available lungs, said Dr. Egan, a University of

North Carolina transplant surgeon who chaired the United Network for Organ

Sharing subcommittee on lung transplants. Egan is working with a team that

is studying the possibility of transplanting lungs from people who die

outside of the hospital, which is not done now for fear that the lungs begin

deteriorating too soon to make a transplant viable.

's mother wants more support for families pursuing living donations.

Most people don't even know such donations are possible, and hospitals

nationwide have never done more than 59 of them in a year. A registry of

people who would consider being donors and more guidance for families could

greatly boost those numbers, she said.

Despite everything, Gilbert is grateful for the care her daughter received

during her ordeal, hugging medical staff at the tearful memorial they held

for at Spaulding last month. Ginns, the surgeon, said the memory of

sticks with him, concluding sadly, " It was not the outcome anyone

wanted. "

can be reached by email at allen@...

September 10, 2004