Analysis: Transplant system fails many patients here
This article first appeared in the St. Louis Beacon: September 7, 2008 - It has been nearly 25 years since the nation passed the National Organ Transplant Act, which created a system for procuring organs and distributing them. It barred the sale of organs from either deceased or living donors.
The measure didn't shorten the time people with heart, kidney, lung or liver diseases must wait for new organs. At the time of the law’s passage in 1984, the average wait for a transplant was a year. On average, the waiting time for kidney and liver transplants has now tripled to three years. The average waiting time for heart transplants is now two years, up from eight months in 1984 and five years for lung transplants, up from 20 months in ’84.
In the St. Louis area today, 905 people await kidney transplants, and 164 hope for liver transplants. Another 80 people are heart transplant candidates, while 119 people await lung transplants. The waiting time has grown in part because of improvements in medical science that extend the lives of these patients, making them good candidates for transplants. Advances in the management of kidney and liver diseases allow some patients to survive longer, but many perish before getting to the top of the list.
Despite advances in organ donation for kidney and liver transplants, including more donations from living donors, there are still not enough organs to meet the needs of the local waiting list. Most of those now waiting for kidneys and livers in the St. Louis area will still be waiting at year’s end, and those who receive transplants will be replaced on the waiting list by others.
As the list grows and waiting time increases, many are suggesting more aggressive measures. One is a so-called opt-out program in which the medical community assumes the deceased’s consent to having organs harvested for transplantation. Another approach calls for increasing support and financial assistance for living kidney and liver donors. Critics fear that the latter comes perilously close to encouraging the sale of organs, which is abhorrent to most Americans.
Still, the deaths and suffering of so many who could otherwise be saved have stirred discussion here and elsewhere.
Dr. Jeffrey Lowell, chief of abdominal organ transplantation at St. Louis Children’s Hospital, strongly advocates switching from the current opt-in system to opt-out.
Under the “opt-in” system for cadaver organ retrieval, individuals must register to be organ donors or clearly make their wishes known to their family. In an “opt-out” system, such as that in Spain, doctors may harvest an organ unless they have specific instructions not to do so.
Spain has used the opt-out system since 1989 with profound results. The number of organs available for transplantation more than doubled between 1989 and 2000. Every Spanish hospital has a trained transplant coordinator to discuss with family members any concerns they may have about organ donation.
Although these changes were made at the national level in Spain, it would not be impossible to implement similar changes in Missouri and Illinois. Each state regulates and maintains its own organ donor registry, so each can change from an opt-in system to opt-out. Because geographical location is one of the factors in determining the allocation of donated livers and kidneys, the more organs available in the St. Louis area, the more likely these organs are to be transplanted into local candidates. (There are other non-geographic factors, including whether the organ is a good match, medical urgency and time spent on the waiting list.)
One of the greatest advances in transplant medicine since the passage of the National Organ Transplant Act is the use of living donors for kidney and liver transplants. These donors can survive with one kidney or without a segment of their livers. Dr. Lowell says that, in more than 50 percent of the kidney transplants he performs, the organ comes from a living donor. In most cases, Lowell says, the living donor is a relative or friend of the recipient, termed a “directed, associated” donation.
But such donations raise ethical questions about how “free” living organ donation is, as the friend or relative may feel pressured into donating. Another group of donors is made up of the so-called altruistic donors who provide an organ to a stranger. They make up about 5 percent of living donors, Lowell says. These donors have their own set of pressures, not least of which are possible complications from surgery, concerns of other family members and financial matters, including time away from work.
A living donor’s surgery costs and follow-up care for the year following the transplant are covered by the recipient’s health insurance. But any complications arising after that year are the responsibility of the donor’s insurance. The United Network for Organ Sharing (UNOS) has received anecdotal reports of donors having difficulty changing insurance after donation due to higher premiums or being faced with a pre-existing waiting period.
UNOS follows the welfare of transplant recipients for an extended period of time. But the organization follows living donors for only a year, making it almost impossible to know how a donor’s economic, physical and psychological well being has been affected.
To help provide assistance to living donors and thereby remove any barriers to donation, several states have considered legislation to provide a $10,000 tax deduction to living donors. Such bills were introduced in Missouri and Illinois in early 2007, but neither state passed it. Wisconsin was the first state to implement such a tax deduction. It is believed to be one of several factors that account for that state now having one of the nation’s highest rates of organ donation.
Some financial assistance is available for living kidney donors in the St. Louis area through the Missouri Kidney Program. Donors and recipients — but not both — where either the donor or recipient is from Missouri, may apply for assistance up to $2,000. This amount can be applied to lost wages or travel costs associated with the transplant, but not to any direct or indirect medical costs. For a living donor, whose recovery time is usually six weeks, according to UNOS, time off work is usually the donor’s responsibility, unless his employer has provided paid leave or allows the employee to take short-term disability. Taken in this light, $2,000 is not a substantial sum of money, especially if there are complications.
The shortcomings of the current system weigh heavily on living organ donors, especially in the midst of an economic downturn, says Dr. Erin Bakanas, an internist at Saint Louis University Hospital and a member of its ethics committee. When the National Organ Transplant Act was passed in 1984, living organ donation did not exist. The act barred the sale of organs, but at a time the average wait for kidney and liver transplants was relatively short. Public opinion, in light of the current organ donation situation, appears to have changed. In a recent Parade magazine poll, 67 percent of respondents believed that living kidney donors should be paid.
What payment means is certainly open to interpretation, but experts agree that our current system isn’t meeting the needs of kidney and liver transplant candidates. Both Lowell and Bakanas say the federal government needs to do more to provide assistance for living donors. As Lowell noted, “the goal of our current system should not be to provide incentives for organ donation, but to remove disincentives.” This might include an increased role for Medicare, so that living donors are also covered by Medicare for the first year after surgery, as recipients are. Although this might sound like increased costs under Medicare, Lowell maintains that it is more cost-effective in the long-run to transplant a kidney and provide after-care than it is to pay for years of dialysis.
Increased governmental support for living donors could also maintain the equity built into the current transplant system, rather than moving toward a payment system that creates the opportunity for financial exploitation of living donors. The alternative is a two-tier transplant system, whereby organs would be allocated based on individual wealth rather than medical urgency. That is a system no one seems to desire.
Siobhan McGowan holds a Master of Public Policy from Georgetown University and a B.A. in French and Sociology from Boston College. Originally from St. Louis, she has worked in public policy and economic development in Washington, DC, London, and Glasgow, Scotland.
Mid-America Transplant Services www.mts-stl.org
United Network for Organ Sharing www.unos.org
Missouri Kidney Program www.muhealth.org/~mokp/
Washington University’s Transplant Program (including Barnes-Jewish Hospital and St. Louis Children’s Hospital) wuphysicians.wustl.edu/dept.aspx?pageID=4&ID=13
St. Louis University Hospital’s Transplant Program www.slucare.edu/surgery/index.php?page=transplantsurgery
Spanish Organ Transplantation System content.karger.com/ProdukteDB/produkte.asp?Doi=64184