SICKEST TO GET TRANSPLANTS FIRST
Some question wisdom of making urgency, not location, priority
By John Tuohy - USA TODAY, 8/29/00
After years of polarizing debate, the nation's organ-transplant system is being revamped to give the sickest patients first crack at donated livers and kidneys.
The new policy aims to end a controversial system that resulted in gravely ill patients getting passed over for livers because they weren't on the right waiting list at the right time.
Proponents of the plan claim it will save lives of hundreds of the sickest patients every year by making medical urgency, rather than location, the priority. Opponents, including many doctors, say it will discourage donations, waste organs on people whose bodies are too far gone to accept them and put small hospitals out of the transplant business.
`'One of the biggest complaints we've had from people on waiting lists is that these boundaries and separate lists prevent organs from going to people who need them most,'' says Jon Nelson of the Department of Health and Human Services, which oversees the organ transplant program and writes the rules. ''That just doesn't seem fair to many people.''
Here's how the new system, which applies mainly to livers, will work:
When a donated liver becomes available, it will be offered to the sickest people in an area of at least 9 million people before `'less urgent'' patients get a chance at it. That replaces the current scheme, in which everyone in a (usually) much smaller area is offered the liver first. And with liver recipients, the term urgent is no overstatement. The sickest patients, Status 1, have less than a week to live.
There are still many critics of the new plan, including the non-profit organization that has run the transplant program since its inception in 1986, the United Network for Organ Sharing.
Though UNOS fought against the changes, it must abide by them if it hopes to renew its contract for a fourth time when it expires in November.
`'We still believe they (the changes) are not appropriate, but we realize this is a contract, and we will be in compliance with all the provisions,'' says Mark Rosenker of UNOS. `'There is really no more debate left, just nuance. We'll do what we have to do.''
UNOS has competition for the contract this time around from a new non-profit company that could capitalize on any residual acrimony between UNOS and the government. The Center for Support of the Transplant Community claims it can do the job better and save more lives. The organization has ties to the University of Pittsburgh Medical Center, a frequent critic of the way UNOS has run the transplant program.
The new rules went into effect March 16. They won't be fully applied until after the new contract is awarded Nov. 1, but UNOS has already started to make some of the changes.
Resistance to the new policy persists, however. There is a bill pending in the House of Representatives that would strike down the rules, although that seems unlikely to succeed, because the Senate favors them. Several states have passed local laws to try to supersede the new rules and at least one state, Wisconsin, is suing the federal government to block them.
About 14 people die each day waiting for transplants of the liver, kidney, heart, lungs or pancreas because the demand for them far outpaces donations. Last year, when 21,692 transplants were done, 6,012 of the 60,000 people awaiting organs died. This year, the waiting lists have already grown 15%, to 71,105.
With organs being so scarce, an allocation policy of `'sickest first'' might seem most logical. But for reasons both practical and political, the transplant program has never been run that way.
Instead, it has been a system of local control, with limited sharing of organs between geographic areas. UNOS officials contend that this system gets the maximum benefit from each organ: Livers can only stay healthy for 12 hours once they are removed, so the range during which they can be transported is limited. People are more willing to donate organs if they know the organ is going to someone in the community. Giving livers to people with the best chance of living afterward is the most responsible way to allocate. `'Given the limited supply of organs, there is an ethical obligation to make the best use of them, put them where they do the most good,'' says Walter Graham, UNOS executive director. `'On the one hand, how do you make the best use of the limited resource? But on the other, how can you say no to someone who is at death's door?''
There are 63 local organ banks, called Organ Procurement Organizations, that keep waiting lists. But because the populations the OPO serve varies widely - from 1.1 million in southwest Florida to 12 million in New York City - the length of the waiting lists also varies.
For example, in September 1999, the number of people waiting for a liver in the two OPOs that serve Arizona was 116, while in the two OPOs that serve Illinois there were 1,250.
The possible result: a Status 1 patient, days away from death in Peoria, could have less chance of receiving an organ than someone with a life expectancy of years in Tempe.
When studies began to illustrate the disparity in the early 1990s, polls showed that the public favored changes in the system. After years of hearings, HHS completed its new policy guidelines in 1998, which it called the Final Rule. Congressmen who opposed it voted to delay implementation two years.
One powerful argument for maintaining the local allocation process, advocates say, is that it encourages donors. People like to know that their organs will stay in the community and possibly go to help a neighbor after they die.
Even though donors give their consent by filling out their donor cards, organ bank officials always like to get consent from family members at the hospital before taking organs.
`'It just makes it a lot easier for them if they can say to the family that some goodwill come from the death because the organ will go to save a person at the hospital down the street or in the next town,'' says Joel Newman of UNOS.
Allan Brownstein of the National Liver Foundation says he doesn't agree organs should stay local, but says he understands that point of view. ''These places work very hard at organ donations and think, why should they go elsewhere?'' he says.
That's the thinking behind laws in more than a half-dozen states that ban organs from crossing state lines. In Wisconsin, Gov. Tommy Thompson went a step further: He sued the government to prevent the law from being enforced.
`'We feel that (HHS) is exceeding its constitutional powers by passing this law,'' says the governor's spokesman Tony Jewell. `'Wisconsin's donor rate is double the national rate, so we feel like we are getting penalized for doing a good job if our organs go elsewhere.''
Other people oppose giving organs to the sickest people because they often reject them and need another transplant, which wastes the organ. A study by the Institute of Medicine found that the sickest patients reject organs 11% of the time, compared with rejection rates of 2% to 5% for less sick patients.
But the government says the moral thing to do is to give organs to the sickest patients. Especially when it is impossible to predict who will reject a liver and who won't.
Robert Gibbons, a University of Illinois at Chicago researcher, who was part of the IOM study, is a strong advocate of the sickest-first policy. He and his colleagues did a follow-up study that found that 298 less severely ill patients were transplanted over more critically ill patients in 1998. At the same time, the number of the most critically ill patients nationwide increased by 731.
"'I call for broader sharing. I know they can do better,'' he says.
But Graham says any system will have shortcomings, and he repeats a well-worn truism in the transplant community: `'Until we have enough organs,'' he says, `'no system is fair.''
Historic Transplant: 1 Donor, 4 Recipients
An Advanced Study of the Insect Repellant Qualities of Cyclosporine
By Don S. Marshall A.C.(Almost Certifiable), UpBeat Medical Center
Background: As the initial drug of choice in organ transplantation, cyclosporine continues to be in common use by transplant recipients. There have been side effects, mainly negative, such as a propensity of the patient to develop various types of cancer due to lowered immunity. However, one side effect of positive ilk was noted early on by transplant recipients; that was the apparent ability of the compound to repel insects from the body of the person into which the material was systemically induced. This property has been confirmed not only with other users, such as those taking the product for severe arthritis, but also in comparison with non-users standing in the same field so to speak.
It has also been learned that those patients who have had their cyclosporine dosage reduced at the on-set of cancer, often no longer are availed of the insect protection they formerly had. [One day we will also study why the cyclosporine dosage is so often reduced after the on-set of cancer, yet still continues to provide anti-rejection protection. Ergo, why not reduce it before the on-set SOP?]
We set out to learn whether it was a combination of being systemic in the human body that set up the repellant situation, or perhaps would the mere presence of the "raw" chemical itself produce the same "go away" result.
Method: The UpBeat Medical Center was fortunate to have on its staff a patient who fit the required criterion for our study perfectly. This patient had been on a level of cyclosporine for approximately 9 years, when the onset of laryngeal cancer indicated the dosage should be cut by 50%. One of the effects immediately noted by the patient, who's abode is about 2 feet above mean high water in the Virginia swamps, was that he was no longer immune to mosquito bites. After a good deal of persuasion that he should donate his surface skin to the scientific cause the study began.
Initially to determine whether all repellant effect had indeed dissipated our subject was sent into the swamp (Actually where he lives merely cracking the front door would have been good enough!) and asked to stand quietly for 5 minutes. [See Illus. 1] There were two problems that developed right away: 1. Our technician, the patient's principal caregiver and wife, refused to leave the house to observe. 2. The patient was nearly removed from the site by hoards of mosquitoes about his body. He fled in seeming fear after only two minutes, which we clocked from our car.
For the second and final exposure, in an effort to determine potential toxicity of the chemical alone, we pinpricked a recently expired gel-cap of Sandimmune and daubed just a bit on a tissue. We then wiped this tissue gently on two approximately 2 x 2-inch areas on the patient's right forearm.
Results: The patient withstood the swarm for approximately 1 minute and 50 seconds. Our technician, nee wife, nee caregiver, dashed from the house with all deliberate speed and hastily documented the feat. Then as a technician she said, "Sir, may I respectfully request that I be allowed to withdraw from this project?" As a wife and caregiver she screamed, "Your really are an idiot! I'm being eaten alive! I'm going in the house and wipe the blood off! Later the camera was retrieved and it was found she did indeed get the required picture. By actual count of the patient, because no one else would even approach him, he had 4 immediate "perches" on the left arm, 2 on the back of neck, and zero, as in none, on his right arm!
Conclusion: Cyclosporine does indeed have insect repellent properties. If taken in large enough quantities internally this function will become apparent. The patient's caregivers and nurses early on in transplantation noted that this level of dosage also produced a rather pungent body odor in the patient that was eventually traced to the olive oil carrier. If however, the patient's dose falls below a level in PPM yet to be determined, all insect effect is lost. In that instance the only potential retrieval of the benefit would be to either sneak more cyclo. on the sly, or take some of those old bottles of the stuff you still have lying around and dab it on like perfume in critical areas.
Further Result: The technician/wife is now under observation for West Nile virus and from her hospital bed keeps mumbling," My God, let's hope there aren't any others out there as stupid as he is, who might actually try it!"
Illustration 1 Patient shows scientific tech- nique in swamp. It was found if the IQ of the patient is low enough, very little training is required.
To those of us who sought eye care after reading last month's UpBeat, we offer our apologies. It is indeed a mystery how most of the copy got italicized. Somewhere in this great cyber age a an actual human must have punched the wrong button and we launched a newsletter that by the time I had finished caused me to seek help in getting my eyeballs untwisted. Later I did find that a couple of glasses of medicinal lite wine assisted the vision quite a bit.
We are duty bound to note the passing of heart recipient Cal Stoll of Minneapolis. The former head football coach at the University of Minnesota turned his energies in full to transplant recipients and organ donation after his heart transplant 13 years ago. His motivational off the cuff talks were fascinating. Cal completed his "pay back" in full with extra credit.
Thought perhaps you might be interested in this for "Upbeat" since we always enjoy publication and felt your readers would find the program enlightening.
NTAF is Subject of PBS Documentary
Kirby Foundation Underwrites Program
National Transplant Assistance Fund (NTAF) has been selected as a documentary subject for the PBS television series called, "The Visionaries." Check local listings for dates and times or see the web pages of NTAF (www.transplantfund.org) and The Visionaries (www.visionaries.org).
A $100,000 grant was awarded by F.M. Kirby Foundation to finance production of the program that focuses on the mission and the people of the National Transplant Assistance Fund. This television series, currently being seen throughout the country, features non-profit organizations doing extraordinary work.
Recognizing NTAF's outstanding fundraising efforts on behalf of transplant patients throughout the United States, the 30-minute program will examine the transplant process and the financial challenges faced by the recipients.
The program will highlight a patient's initial contact with National Transplant Assistance Fund, show how the organization helps identify uninsured expenses of transplant and establishes a network of friends and family willing to help with fundraising to cover the transplant-related expenses.
Dr. Jack Kolff, a cardio-thoracic surgeon, and NTAF director, Patricia Kolff, were selected by the producers as "visionaries." The couple envisioned a way to help patients to achieve transplant who otherwise could not afford the procedure and created the organization to carry out this vision.
NTAF, located in Bryn Mawr, Pa., was established in 1983 for just such a purpose and over the past 17 years has helped raise over $16 million through grass-roots fund-raising campaigns.
Submitted by: Sidney Constien - National Transplant Assistance
Our local Rescue Squad puts up weekly notices regarding health and safety mostly. This week's is, "A balanced diet is a chocolate cookie in each hand."
Exercise Aids Transplant Patients
By Ira Dreyfuss - Associated Press Writer
WASHINGTON (AP 8/27/00) - Exercise is good for your organs, even if the organs originally were someone else's.
"It's beneficial for a lot of reasons - to play basketball, or go back to work, or just live your life," said NBA All-Star forward Sean Elliott, who has a kidney transplanted from his brother, Noel.
Elliott had developed a progressive disease, focal segmental glomerular sclerosis, which reduces the kidneys' ability to filter the body's waste products. "I started retaining a ton of water," he said. "I lost my appetite. I became fatigued and started lying in bed a lot."
On Aug. 16, 1999, Elliott had the transplant that let him start rebuilding his career and his life. "A month out of surgery, I felt great - but extremely out of shape for me. It took me seven months to make it back to playing the game of basketball."
Elliott is the first professional athlete to return to a sport after receiving an organ transplant. But his return to exercise after a transplant is not unusual. Doctors commonly recommend physical activity for patients with transplants.
A study in The New England Journal of Medicine in January 1999 found that heart transplant patients who did aerobic training gained greater endurance after six months, compared with patients who did not take part in the exercise program. Researchers at the University of California at Los Angeles concluded "exercise training increases the capacity for physical work."
Other studies have found similar benefits for patients with other transplants. For instance, an Austrian study published in 1998 in the American College of Chest Physicians' journal, Chest, found that stationary bike training improved the performance of lung transplant recipients.
Transplantees these days are not only encouraged to exercise, they are encouraged to compete. They even have their own version of the Olympics, the World Transplant Games, open to people with a functioning organ transplant.
Leading up to the world games, which will be held in 2001, were this year's U.S. games, organized by the National Kidney Foundation. They were held in June at Disney's Wide World of Sports Complex in Orlando, Fla., with Elliott as the official leading celebrity.
Nonetheless, transplantees have special needs in exercise. Chief among them is a greater need to stay hydrated. The requirement is partly a response to the drugs the patients take to suppress their immune systems, so their own bodies don't reject the donated organs, said Dr. Sharon Hunt, a heart transplant cardiologist at Stanford University. "They all have a mild compromise in kidney function," she said.
"I drink about a gallon of water a day, at least," Elliott said.
Heart transplant patients may never reach the exercise ability of similar people who have their own hearts, although the difference might not be noticeable except to an elite athlete, Hunt said. "They can't quite run the same marathon, but I'm guessing 80 percent," she said.
Transplanted hearts don't function quite the same to exercise, Hunt said. They don't immediately respond to stress by beating faster, because nerve connections needed to do this are not there, she said. Instead, the heart responds initially by contracting harder to pump blood, and starts to beat faster after a few minutes in response to higher levels of the hormone adrenaline, she said.
Other transplantees should have no such limitations on their performance, said Dr. Lew Teperman, director of transplantation at New York University. But the patients may have lingering problems from the disease that forced them to get the transplant, he said. For instance, former diabetics with a transplanted pancreas may have compromised hearts or blood vessels from the diabetes, he said.
However, people should not see transplant patients as any less able than people with all their original organs, said Corinne Carson, a 29-year-old Washington woman who received a liver transplant in 1994. In the season after the operation, Carson played basketball at Marymount University in suburban Virginia.
Carson tried out for the Women's National Basketball Association in 1997. But she didn't make the WNBA cut, and she suspects officials' perception of her health was a reason why. "I had a couple of coaches tell me that if I get on someone's team, you are going to raise insurance prices," she said. "They don't understand I have no restrictions."
Nonetheless, Carson is thinking about trying out again. "I can outplay the majority of girls out there, but I don't want my transplant held against me," she said. "I just want a fair tryout. If I make it, I make it. If I don't, I don't."
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Biotech Firm Breeds Swine For Organ Transplants
Pope Offers Moral Medical Guides
Heart Transplants "Only Benefit Sickest Patients"
"Testing... Testing." Immune Drugs Make U.S.
Hand Transplant A Success
Women Denied Heart Transplant
Disclaimer: The material in this document has been collected by Don Marshall and friends. New ideas and materials are welcome all the time. Nothing herein is ever to be construed as medical advice. As a policy, Upbeat is sent upon request to heart and heart/lung transplant recipients and other interested parties. Donations of $15 per year, or more, from TX recipients, if not a burden, are vital. From all others the donation is specifically requested. The date shown after the name on the address label indicates the last time a donation was received. Please make checks payable to Don Marshall, as we cannot afford to become nonprofit. Send materials, letters, or checks to:
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