Why people die waiting for transplants.

Note: This article is from 1996 but the info is good.
Two other articles by the same author are in Dialysis: General Discussion.

Why people die waiting for transplants.

McMenamin, Brigid
Forbes; 3/11/96, Vol. 157 Issue 5, p140-148, 4p, 2 Color Photographs, 6 Charts
Article
*GOVERNMENT policy DONATION of organs, tissues, etc.
UNITED States
Asserts that more than 3,000 Americans die each year waiting for organ transplants partly because a government monopoly keeps the organ supply artificially low. Comparison of government involvement in the 1980s with the 1990s; The trail of how an organ is found and delivered; Chief source for organs by way of brain-dead individuals whose other organs are in good shape; Length of wait time depending on the organ a patient needs. INSET: Survival tactics, by B.McM..

WHY PEOPLE DIE WAITING FOR TRANSPLANTS

More than 3,000 Americans die each year waiting for organ transplants. One reason is that a government monopoly keeps the organ supply artificially low.

In January 1994 doctors at New York's Mount Sinai Hospital told Electra Tsucalas that her liver was failing. Her only hope was a transplant. Across the river in New Jersey, Tsucalas could have had a new liver in less than 3 months. In New York, she had to wait 15 months. By a miracle she survived. Others aren't that lucky. Last year 3,104 patients died waiting for transplants of all types. (For tips on how to make sure you aren't one of the unlucky ones, see box, p. 148.)
How lucky you are depends almost entirely on where you are. About 44,000 patients in the U.S. are waiting and hoping for transplants of all kinds; in Fort Worth, Tex., the wait for a kidney is only a few weeks; in nearby Dallas, however, the wait is more like a year.

Why don't the transplant hospitals simply harvest more organs? Or import them from other cities? Because they aren't allowed to under a 1984 law that took organ donation and allocation out of the hands of doctors, hospitals and patients and put it in the hands of a federal bureaucracy. The bureaucracy rules over a series of organ banks. The banks, with rare exceptions for kidneys,
aren't allowed to export organs if anyone in the local territory can use them. Thus a critically ill patient in one city might die while organs go to less desperate patients nearby. The system was supposed to insure the supply and fair allocation of organs. It doesn't work that easily.

Until about a decade ago federal government involvement was limited to Medicare reimbursement for kidney replacements. Doctors did relatively few transplants because patients' immune systems usually rejected the foreign organs. All that changed in 1983, when Sandoz Pharmaceuticals Corp. introduced cyclosporine, a drug that suppresses the immune system, thereby reducing the chances of rejection. Along with the sudden boom in transplants came fears that an unregulated market would benefit only wealthy patients. In 1984 Al Gore, then a U.S. congressman and a strong advocate of federal interventionism, demanded that the federal government step in to regulate transplants.

As often happens in such cases, policies intended to promote egalitarianism simply ended up making everyone worse off. Congress took the bait, and the National Organ Transplant Act of 1984 was passed. The act banned commerce in organs and put the Department of Health & Human Services in charge of donations and transplantation.

Faster than you could say "bureaucracy," the feds set up a network of 69 local organ banks to harvest and distribute organs. The allocation guidelines sound logical: A Richmond, Va. contractor called the United Network for Organ Sharing keeps a list of all transplant candidates. That list has all kinds of information, including how sick the patient is, his blood type, height, weight and what size organ the candidate needs.

Say a liver turns up in San Francisco. The Richmond organ network ranks suitable liver seekers in northern and central California based on how sick they are and how long they've been waiting. The local organ bank selects the sickest patient within the local territory who has waited the longest. The organ bank sells the liver to the hospital where the patient is waiting. No organ can be sent out of that territory, however, until every liver candidate has been considered, even if, say, a patient in southern California has a more urgent need. These arbitrary territorial limits are killers. Ask Dr. John Fung, a liver transplant specialist at the University of Pittsburgh Medical Center. Fung has more than 530 patients waiting for livers. Many come from other states, draining the local organ supply and making it harder for locals to get organs. In 1995 some 18% of Fung's liver patients died waiting, including many Pittsburgh-area patients who couldn't afford to go elsewhere.

"This system is so grossly unfair," fumes Fung, who says he went into medicine to avoid politics and now finds that the only way he can help his patients is to lobby for change.

Quite clearly the national demand for organs exceeds the supply. The chief source is patients who become brain-dead through accidents or other causes but have otherwise healthy systems. There are more than enough brain deaths each year-some 15,000, according to the Harvard
University School of Public Health-to take care of the 44,000 people on the transplant waiting list. In cases of brain death, the organs can be kept alive with a respirator that keeps the heart pumping. One donor can provide several organs, a couple of kidneys, say, and a heart, lung or liver. In 1994, the latest year for which figures are available, the federal system produced 5,100 dead donors, enough for 15,200 transplants. (The organs become available when the hospital calls the local organ bank to report a potential donor and the family consents.)

So why the interminable waits? In large part because of the bureaucratic centralization dreamed up by Gore and passed by Congress. A doctor cannot make a deal on his own to get an organ for a patient. The doctor must list his patient with the Richmond, Va. organ network, even if there is a potential donor in the doctor's own hospital. The donor's family simply turns the organs over to the local organ bank.

One consequence is that few hospitals have any incentive to encourage donors. Why bother when they won't be able to keep them for their own patients? Five thousand of the nation's 6,300 hospitals don't produce even one donor per year. Even the huge transplant hospitals aren't very good at it. In 1994 New York's Mount Sinai did 262 transplants of all kinds. But Mount Sinai (1994 revenues, $736 million) produced only two donors. Today 230 patients are waiting for livers at Mount Sinai. Last year some 30 Mount Sinai liver candidates died waiting. Many would have lived had Congress not wrapped the whole transplant system in so much red tape.

The basic problem is this: The government monopoly that runs the transplant market is terribly bad at creating supply to satisfy the demand. Each organ bank has a staff of "procurement coordinators" trained to sell grieving families on the idea of donating a loved one's organs to help strangers. It's a tough sell. And the coordinators are forbidden to offer compensation, not even to help with burial expenses. So the families of potential donors have no financial incentive to give.
In a recent survey by the Boston-based Partnership for Organ Donation, 52% of the families that refused said they didn't realize that their brain-dead relative was in fact dead. No wonder the yields are low.

"Our organ bank does not do a good job," says Dr. Byers Shaw, head of the transplant program at the University of Nebraska Medical Center in Omaha. Shaw, who received only 95 livers last year, says he could have used 200 more.

If Shaw is disturbed by conditions in Nebraska, he would be outraged by what happened in New York City. The New York Regional Transplant Program (1994 revenues, $10.5 million) is the organ bank that handles procurement at hospitals in New York City and its northern and eastern suburbs. Last year the board hired a lawyer to investigate the spending practices of Executive Director Bruce McFadden. Among the findings: In 1994 the organ bank staff spent $721,476 on travel, $353,449 on consultants, $153,182 for "conferences," $121,000 on public relations and nearly $1 million to renovate the offices, including a custom-made stand-up desk for McFadden.

More than half the organ bank's revenues come from Medicare and Medicaid. But what really worried the board wasn't the extravagances so much as one outlay that did a lot of good for patients: $30,000 to reward families who donated by picking up the cost of shipping the donor's remains home for burial. Under the federal law, payments for donations are a no-no. McFadden was allowed to resign. The New York situation may not have been typical, but it demonstrates how little the politically appointed bureaucracy is concerned with increasing the supply of organs.

Transplants have long been lucrative procedures, according to Burl-ington, Mass.-based Putnam Asso-ciates. Liver transplants typically run about $200,000. The federal government has found a way to keep a lid on demand. To get Medicare transplant patients, hospitals must promise to shun candidates with certain conditions. To get Medicare liver transplant patients, for example, they are expected to avoid liver seekers with diseases like cancer. Medicare recently came out against paying for lung transplants at centers accepting patients who have had chest surgery, are seriously overweight, smoke or have recently quit smoking. It's Medicare's way of rationing transplants for everyone.

In at least one sense the artificial shortage of organs caused by federal policy encourages high prices: What's scarce becomes more valuable, and price resistance vanishes. Given a better supply of hearts, livers, lungs and kidneys, more such operations would take place and the price might well drop.

An obvious solution would be for the government to get out of the way and let the market take over. Once doctors and hospitals could harvest organs for their own patients, there would be added incentive for doctors and hospitals to solicit for them. If they could offer money and other economic incentives, more families might agree to donate. Of course, this would inevitably lead to charges that the rich were buying organs from the poor. So if that totally free-market solution is unacceptable, there are less drastic changes that could increase the supply of organs and reduce the waiting time and the regional disparities.

At minimum, local organ banks should compete with one another so that there is more incentive to find donors. Also, the arbitrary territorial boundaries should be eliminated to let the organs go to the neediest patients. And the government should reward donors. Here's a good way: If you sign "donor" on your driver's license at age 18, you get to the top of the list when you need a heart at age 53.
ILLUSTRATION
~~~~~~~~ By Brigid McMenamin
SURVIVAL TACTICS
If your doctor says you may someday need, say, a liver transplant, your first step is to find a
hospital with lots of experience, good survival rates and short waiting times. How do you do that?
The earlier you get on a waiting list, the more likely you are to get an organ before it's too late. So get the process going, even if your doctor says you do not need the transplant right away. Call the United Network for Organ Sharing (unos) at 1-800-24DONOR. Ask for a copy of the 1994 Report of Center Specific Graft and Patient Survival Rates (price: $115) or just the liver volume ($30).
This book tells how many liver transplants each hospital did between 1987 and 1991, what percentage of the grafts took and what percentage of the patients survived. The results vary considerably .
At Duke University Medical Center, for instance, fewer than 40% of the liver recipients lived one year. By contrast, at the University of Wisconsin Hospital nearly 85% of the liver recipients survived at least one year. And at New York University Medical Center nearly 90% lived at least one year.
Be sure to ask transplant hospitals for current survival rates, in writing. Once you've picked a hospital with good numbers, ask how long its patients usually wait. Insist on getting the overall average waiting time, then check it with unos. Demand a copy of the Analysis of Waiting List Registrations and Median Waiting Times.
If the hospital or unos puts you off, contact Judith Braslow at the Department of Health & Human Services   Division   of   Transplantation   (301-443-8036,   or   E-mail   her   at jbraslow@hrsa.ssw.dhhs.gov).
Some of the differences in waiting times are astonishing: In New York, for instance, the median wait for a liver is 308 days, while in Wisconsin, it's only 61 days. So, as good as nyu is, if you need a liver fast, you're better off in Wisconsin.
But before you go flying off to the Midwest, make sure the hospital doesn't rule you out because of your age or medical problems such as cancer, or alcohol or drug abuse. If you don't make the cut because of some arbitrary rule, use the unos book to check if they've ever transplanted anyone in your condition. Your doctor may be able to convince them to make an exception for you, too.
Next step: Figure out how your transplant will be paid for. Medicare pays for kidney replacements, with no age limits. But if you're under 65 you are not eligible for a Medicare heart, lung or liver, unless you have been disabled at least two years. So ask each center to estimate the price for your evaluation, transplantation, follow-up care and medicine. Then check your health plan to see if there are any coverage limits. Even with limits, there is some room for bargaining.
Next, have your doctor refer you to your first-choice center for evaluation. If they accept you, they'll send unos information on your age, sex, condition, blood type and a $325 computer registration fee. You can improve your chances of getting an organ quickly by listing at more than
one transplant center. Few doctors will tell you about this option. Only 5% of all patients multiple- list. But if you can afford it, you should.
Transplant candidates waiting in the hospital usually take precedence over those well enough to go home. So another way to speed things up is to get your doctor to put you in the hospital until an organ turns up.
Improve your chances even more by getting the transplant center you've chosen to import an organ from a foreign organ bank. U.S. transplant centers are allowed to use foreign sources as long as the donor is dead and the family receives no compensation. unos can provide you with a list of foreign organ banks if asked.
Finally, be available. A third of transplanted organs don't go to the first person on the list-often because when the organ turned up, the doctor couldn't get the patient on the phone in time. Carry a beeper all the time so when your turn comes, you'll be ready.
From unos, request copies of three brochures: "What Every Patient Needs to Know," "Questions Patients Should Ask" and "Financing Transplantation."
Waiting for an organ transplant
State   Median wait   % (days)   transplanted*
Liver Where do you find the shortest waits? Kentucky   8   87.5 Iowa   20   81.6 Alabama   48   84.7 Utah   49   93.1 Florida   50   78.6
Where do you find the longest waits? Maryland   564   36.3 Illinois   358   43.1 Michigan   324   55.9 New York   308   49.9 Indiana   276   60.9
Heart Where do you find the shortest waits? Hawaii   0   100.0 Mississippi   27   75.0
Iowa 51   50.0 Oregon 74   78.8 Colorado 81   72.7
Where do you find the longest waits?
Indiana New York Connecticut Oklahoma Virginia
407   50.0 363   45.8 359   52.0 352   48.9 348   45.1
Kidney Where do
Oregon Kentucky Iowa Florida Arkansas
you find the shortest waits? 86   84.3
95   74.3 212   62.8 267   61.6 285   56.7
Where are you least likely to get a kidney? Hawaii   **   5.5 Puerto Rico   **   10.5 South Dakota   **   13.8 District of Columbia **   18.5 Massachusetts   **   18.9
*Of patients listed in 1994. **So few of the kidney patients listed in 1994 have been transplanted that unos can't compute median waiting times for 26 of the 42 states, Washington, D.C. and Puerto Rico, where kidney transplants are done.
Source: United Network for Organ Sharing. ILLUSTRATION
~~~~~~~~ By Brigid McMenamin