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Well Sourced: Organ transplants can yield more than just tear-jerkers

Well Sourced: Organ transplants can yield more than just tear-jerkers

Picture of William Heisel

There were more than 29,000 transplants performed in the United States in 2014. That number has increased by 61 percent over the previous 20 years, while the total U.S. population only increased by about 15 percent.

There’s a lot of reasons for this but chief among them is the changing demographic profile of the U.S. More people are living longer. There are more chronic diseases like diabetes. And more people are being diagnosed with other diseases that damage the organs.

That’s the demand side. On the supply side, people dying and donating their organs or having their organs donated for them are still the biggest source of donations, but living donors are picking up pace, too. The rate of donations from the deceased rose by 56 percent between 1994 and 2014, but living donations increased by 88 percent over the same period. Again, both types of donations are rising much faster than the population is increasing. One takeaway? People are becoming more generous.

How do I know all this? I checked with the Organ Procurement and Transplantation Network.

SOURCE: The Organ Procurement and Transplantation Network

WHAT IT DOES: The OPTN is, as its website explains, a “public-private partnership that links all professionals involved in the U.S. donation and transplantation system.” The contractor running the network is called the United Network for Organ Sharing (UNOS). UNOS manages the national transplant waiting list and matches donors to recipients. UNOS and the OPTN are overseen by the Health Resources and Services Administration of the U.S. Department of Health and Human Services. It can be confusing that there are two seemingly different organizations with similar names, but all you have to know is that you can get data from OPTN, and you can get comments and context from UNOS.

WHAT IT DOES NOT DO: Come down hard on hospitals that have poor transplant survival rates or other problems. Transplant programs are not created equal. Even one doctor coming into an area or leaving can have a huge impact on the quality of a program. And just because a hospital does a great job with kidneys doesn’t mean it can do heart transplants or other transplants with equal skill.

RECORDS: OPTN breaks up its data in multiple ways. You should explore the options for yourself, but here are the highlights:

National data:

http://optn.transplant.hrsa.gov/converge/latestData/step2.asp

Regional data:

http://optn.transplant.hrsa.gov/converge/latestData/stateData.asp?type=r...

Data on specific transplant centers:

http://optn.transplant.hrsa.gov/converge/latestData/stateData.asp?type=center

Unfortunately, UNOS makes it hard to find survival rate data. You have to request if from the OPTN here:

http://optn.transplant.hrsa.gov/converge/data/request_main.asp

WORD OF CAUTION: People are very passionate about organ donation, especially people on the waiting lists and their families. It’s worth spending a little extra time trying to understand how your transplant center compares before making incautious statements about successes or failures.

SUGGESTION: Every center has a waiting list. Some are longer than others. Look back historically at your center’s waiting list. Is it getting longer overall or shorter? Look at centers in the state or nearby to see how their waiting lists are doing by comparison. In California, you will find that the waiting lists generally grow longer, while in other states people get organs and move off the list more rapidly.

EXAMPLE: Alan Bavley at the Kansas City Star wrote an interesting piece in July 2014 called “Transplant programs on both coasts long for Midwestern livers.” (Transplant stories often can’t help but have headlines that would have made Charles Addams smile.) Bavley wrote:

As with other organs sought for transplantation, demand for livers far outstrips the supply. About 12,000 patients are added to liver transplant waiting lists each year. The number of donors has remained fairly constant at roughly 7,000 per year. KU Hospital’s transplant program benefits from the current system, which generally offers donor livers first to transplant hospitals in the region where the organs were collected. And the number of people who donate their organs varies drastically by geography. People in KU’s region are more likely to become donors than are people in any other part of the country. That helps KU Hospital boast an average wait time for a liver of less than six months. Nationally, patients average a 14-month wait, according to the hospital.

Stories about organ transplantation should go beyond the anecdotal and dig into the financial, societal, ethical, and emotional issues surrounding transplants.

Photo by the Italian voice via Flickr.

Comments

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You are right Bill. Donors are not getting good information:
https://www.beaconreader.com/dan-walter/why-the-campaign-for-living-kidn...

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The data represented above focuses on the health and safety of the would-be recipient. What of the living donor? We've been taking kidneys from living people since 1956 yet we still have no comprehensive data. In 2000, the Secretary of Health mandated one year of follow-up, but centers were so non-compliant that a 2009 report called the data "useless" for research or analysis. Under pressure from HRSA, OPTN revised their policy in 2013, but only collects for one year. Meanwhile, transplant recipients have been tracked in a government funded registry for 10 years since 1988.

We had no national standards of living donor care until 2013. The current policy is so vague that if a hospital rejects a potential donor, they *must* tell the person s/he can be evaluated at another hospital with 'different selection criteria'. This variability compromises patient care and makes data analysis nearly impossible.

Yet unlike recipient and graft survival, SRTR and OPTN does not allow the release of living donor safety data. In fact, transplant centers routinely deny that living donor's symptoms are related to the donation so they don't have to report it to OPTN at all.

If you're really interested in the state of the transplant industry, I recommend turning your attention to the folks who make all these "miracles" possible - the living donors.

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