Severe Organ Shortage Expected to Worsen
The shortage of organs for transplant in the United States has never been so severe. Every day, 12 patients die waiting for hearts, livers or other organs. In the last 10 years, organ transplants have doubled--but the waiting list has tripled.
In desperation, surgeons have used partial livers or organs from less desirable donors like animals, the elderly and even the diseased. Local organ procurement centers, working with hospitals, are trying to shore up their donor programs, aware that only about one-third of the 15,000 potential donors who die each year are actually used for transplants.
New Public Service Initiatives Launched
The public health community has launched new public service initiatives to encourage more people not only to earmark their organs for donation but to be sure to tell their loved ones of their intentions.
And the federal government has imposed new rules requiring hospitals, as a condition of receiving Medicare payments, to report every death to local organ procurement organizations so that the centers themselves can identify medically suitable donors and approach potential donors’ families.
But experts warn that even if more organs become available, the shortage is only expected to get worse.
While a national debate continues over who gets priority for scarce organs, the great irony is that transplantation has become a victim of its own success. The better doctors get at doing transplants, the greater the shortage will become.
Three decades ago, no one survived a heart transplant for more than a few months. Today, the procedure is routine. Medical advances--in tissue typing, immunosuppressant drugs, surgical techniques and better methods of organ preservation--have resulted in larger numbers of transplants and longer survival time for patients.
Because of new techniques and advances, more patients are being referred for transplants, including many who probably would not have been placed on such a list 10 or 20 years ago when the field was much less successful. This makes the wait all the longer.
“In the late ‘80s, my mother waited only about two or three weeks, and my father, who was quite ill, only waited a week or two,” said Craig Irwin, president of the National Transplant Action Committee, a consumer advocacy group based in Portland, Ore.
His parents, now in their 60s and thriving, both received liver transplants. “I think today my mom would’ve had a much, much longer wait. And I don’t know that my dad would have made it at all.”
The supply of organs cannot keep up with the demand, and it probably never will.
“Even if you got every single donor, and every single family said yes [to donation], there still would be a shortage,” said Howard Nathan, president of Gift of Life, the organ procurement center for the Philadelphia area.
The reasons for the nationwide organ shortage go well beyond the numbers. Motor vehicle safety factors--such as seat belts, air bags, new penalties for drunken driving and helmet laws--have reduced the number of head trauma deaths, once a major source of donations.
And because of a complicated set of emotional, psychological and procedural factors, many families are never even asked to donate their loved ones’ organs, and those who are asked often say no.
Solving this latter situation could go a long way toward narrowing the gap between organ supply and demand, experts believe.
While millions of Americans indicate their willingness to donate by signing up--mostly through the driver’s license renewal process--many neglect to tell their relatives that they have done so. Without family consent, regardless of a donor’s wishes, organ procurement centers will not take an organ.
And, despite the fact that so many Americans have checked that little box on their driver’s licenses, only about eight states (California is not among them) have databases containing their names.
Also, there is no national computer registry to quickly identify them, a situation that becomes especially problematic if someone unexpectedly dies far from home.
There is no drive to establish such a system. The idea has been dismissed as too costly, and officials in organ procurement organizations believe there is also an underlying fear in some quarters that having one’s name in an organ donation database could negatively affect the quality of medical treatment that would be received.
“Some people actually think that if they’re brought into a hospital and it’s known they are a donor that they will be allowed to die,” said Joel Newman, an official of the United Network for Organ Sharing, which runs the nation’s organ transplant system under a contract with the federal government.
The biggest roadblock by far, however, is the dilemma that results when an individual fails to share his or her plans to donate with loved ones. In the event of a sudden death, family members--already struggling with shock, grief and loss--are often incapable of dealing with an additional decision, particularly one of such magnitude.
A recent study sponsored by the Agency for Health Care Policy and Research examined families who faced real-life decisions about donation and found that only 43% had ever discussed donation with their loved ones and only 25% knew whether their loved ones carried donor cards. And 95% said that knowing their loved ones’ wishes would have had a substantial influence on their final decisions.
“They didn’t know what the person wanted and they’re afraid to make the wrong decision,” Newman added. “If the family is not sure, the default answer is very often no.”
In California, “50% of the families we ask say no,” said Gloria Garcia Bohrer, director of communication and education for the Southern California Organ Procurement Center, which covers Los Angeles, Orange, Riverside, San Bernardino, Kern, Santa Barbara and Ventura counties.
Until recently, hospital personnel, preoccupied with medical and emergency situations, often failed to discuss donation options with family members. And organ procurement centers, who have staff specially trained for these discussions, often were never told that a donor was available.
The new federal rule on notification, which went into effect last year, may help by shifting responsibility from the hospitals to local organ procurement organizations who specialize in dealing with sensitive issues raised by families. They make a point of explaining, medically, the issues involved in brain death, something not everyone understands.
The rule is modeled after a 1994 Pennsylvania law that prompted record increases in organ donations in that state. By 1998, donations there were the largest in the nation, jumping 43% since the law was implemented. Similar laws were enacted in New Jersey in 1995 and Delaware in 1998.
It is too early to know whether the change nationwide has made a difference, but expectations are high.
Most agree that the waiting list, about 65,000 at any given time, will not be wiped out by these efforts. “But there is no question we could reduce the number of deaths,” said Kevin Sparkman of the Philadelphia organ procurement program.
Surgeons Turning to Other Measures
Currently, only about 5,800 individuals provide organs of the 15,000 potential donors who die annually. That adds up to about 17,000 transplants, since one person is often the source of several organs. But, if all 15,000 people donated, about 49,000 organs could be used, a hefty increase.
The Department of Health and Human Services has launched a nationwide initiative to increase public awareness and education with the goal of increasing donations 20% by September. Federal health officials are working with public, private and volunteer organizations to spread the word.
For example, organizations representing minorities--such as the National Medical Assn. and the Council of National Black Churches--are trying to make minority communities sensitive to the need for genetically compatible donors, particularly since representation of minorities on the transplant waiting list is growing out of proportion to their presence in the population.
Researchers are also exploring the use of new cells to repair already damaged organs, such as livers. And the promise of stem cell research, only just getting started, has raised hopes that ultimately new organs can be created on demand.
For the moment, though, transplant surgeons are turning to other measures to keep their patients alive longer. There is active research underway using animal organs, such as pig livers. Machines, such as ventricular assist devices, are routinely used to keep heart patients going until a suitable heart becomes available.
Also, there is an increasing reliance on organs from older patients and even, in rarer cases, from those who may have had an infection, such as hepatitis C, but whose livers are still undamaged and functioning. Sometimes, but not always, these serve as temporary measures until a better organ comes along.
“Our oldest liver donor was 80,” said Nathan of the Philadelphia program. “Much depends not on the age of the individual but the physiological functioning of the organ. The physician makes the determination if that organ is right for that patient.”
