Lack of organ donors harming South Florida residents

The effects of the lack of organ donors nationwide ripple through South Florida as those in need continue to hope for the gift of life.

“It’s sort of interesting that in a city of 52,000 people,” said former Coral Gables Mayor Jim Cason, “three leaders of the city have had or need organ transplants.”

Mr. Cason shared that he is awaiting a kidney donor. Former Coral Gables Mayor Raúl Valdés-Fauli and the city’s current mayor, Vince Lago, are both organ recipients.

One can imagine, said Mr. Cason, just how many people in the larger population need organs, or will know somebody who will need a transplant, or passed away due to them not obtaining a transplant. 

“It’s just sort of emblematic of the problem, and there’s over 100,000 people in the United States that are waiting for kidneys, and apparently, 17 people that die every day for not having an organ. You can actually donate a liver while you’re alive,” he said.

“Most kidneys are from deceased donors,” Mr. Cason said. “They either put it on their driver’s license that they’re willing to give an organ when they’re deceased, and actually they could give up to seven different organs, everything from hearts to intestines to pancreas and everything else. One person can really help seven or eight people live, but the vast majority are from deceased donors.”

The need for organ donors is seen far and wide as individuals from around the globe are in need.

“Organ donation is a need throughout the United States and actually throughout the world,” said Dr. Giselle Guerra, professor of medicine and surgery at the University of Miami and medical director of the living kidney donor program and the robotic program at the Miami Transplant Institute. “The reality is, kidney donation in particular is a growing concern, and that’s because there’s more individuals that are ending up with chronic kidney disease or end stage renal disease, and the main reason for that is two major illnesses lead to kidney failure: high blood pressure and diabetes.”

If one looks around, she said, there is at least one family member with one of those illnesses. Hypertension and diabetes are prevalent and the two major diseases that are seen throughout the world. Unfortunately, the diseases are the two main causes of kidney failure. As a result, the list continues to grow for kidney transplants.

Dr. Guerra said a positive aspect of kidney transplantation is it is a well-known fact that one can be a living donor. This is important, not only because individuals waiting for a donor are removed from dialysis and live longer by getting a transplant, but living kidney donations last almost twice as long. 

After covid, the number of living donors decreased, noted Dr. Guerra. During the pandemic, due to the procedure being an elective surgery, in order to protect donors most transplant centers stopped completing procedures with living donors temporarily. Once they started again, numbers never increased to where they used to be.

“Now, we’ve lost a third of the cases that used to exist with living donations, and we’ve never increased it to the numbers we needed to get into,” she said. “Living donation is a big problem.

“With regards to deceased donors, I am happy to report that there has been increased numbers of deceased donors over the years that we have been able to utilize for transplant, but the numbers are still relatively low to where we should be, because obviously our list continues to grow.”

Individuals usually decide if they would like to be a deceased organ donor when they are obtaining or renewing their driver’s license. The obstacle with deceased donation is, unless the individual is already marked to be an organ donor, one must rely on family members to make that decision.

“It’s very challenging,” she said, “because it’s a really horrible time, because the family is grieving for what’s going on with the actual patient, and then at that point in time, the concern is, are they willing to actually take the steps for that patient to become an organ donor. It’s a very challenging thing to do, because the family is grieving, and then they have to make that very difficult decision. It’s not the ideal situation by far.”

An individual can sign up to be an organ donor at any time. However, Dr. Guerra shared, the problem is this is not a common conversation people are having. People typically don’t have enough knowledge of what it means to be an organ donor.

“There’s a lot of myths and misconceptions that are related to it [being a deceased organ donor] that scare people to [not] want to become organ donors, and then at that point in time, that’s the challenge,” she said, “if that decision is not made ahead of time, and you could actually put it in your living will, what you want done, just like some people make a decision to not be resuscitated, and they have specific indications of when to be treated.

“You could also put it in your living will that you want to become an organ donor. Again, that decision should be made ahead of time so the family doesn’t have the burden, and that would increase the chances of transplantation throughout the US.”

Dr. Guerra explained that if something horrible happens and an individual is declared brain dead, a separate infrastructure exists in which a separate team “comes to actually go through that process, and that’s really important, because people are afraid that nobody’s going to take care of you if they know you’re an organ donor, and that is absolutely false.”

If an individual is interested in becoming a living donor, she said, a special team within each transplant center takes care of the living donors. This team is separate from the recipient’s team. This is because decisions are made separately and individualized to the donor.

“We never compromise the life of a donor and their organ to help a recipient,” said Dr. Guerra. “Why? Because the recipient could always go on the list and wait for a deceased donor transplant. It’s really important that the living donors know that we take care of them separately, we make a decision solely based on them after a full medical and psychological evaluation is done. There is even an independent living donor advocate that takes care of that donor at all times and protects their rights and their safety.”

Once the donor receives a clean bill of health as a good candidate to donate, she said, recovery is quite fast. Usually, donors are in the hospital less than 24 hours and feel back to normal within a couple of weeks.

Dr. Guerra said living donors “live a completely normal life,” and continue to be productive members of society. One can even participate in triathlons.

“If there’s athletes that want to donate, they’re still able to donate,” she said. “Women in particular, we reassure them that they could get pregnant. We do advise them to wait a short period of time, about a year.

“Why? Because the kidney that’s left behind has to learn to compensate for the loss of the other one. We want their bodies to adapt to the new changes in order for them to have the best kidney function possible with just one kidney.”

Dr. Guerra said an organ recipient’s waiting time is quite long, for a kidney in particular. Depending where one lives, the wait time may be different. 

“In Florida,” she said, “it’s [the wait time for a kidney] about three years wait, give or take. But there are some states that’s very long. It could be even anywhere from six to eight years, like California is very long. New York is very long as well. It’s something that we’re looking at, trying to fix at this point in time and trying to get more organs in order to decrease the wait time and get more individuals transplanted with the right kidneys.”

Mr. Cason shared that all of his family had kidney disease and have a very rare genetic disease called Autosomal Dominant Tubulointerstitial Kidney Disease-UMOD (ADTKD-UMOD). Only about 450 families in the nation are known to have ADTKD-UMOD. The disease is passed down from parents with a 50-50 chance their children will also have it.

“My mom had it,” said Mr. Cason, “and all of my brothers and sisters except one had it, and they’ve all had transplants and given kidneys. I have it. My son has it, and two nephews have it. You can’t escape it.”

Last year, he said, only 53 people had a living kidney donor. Half of those were relatives. Only 23 people received the organ from an anonymous person.

“That’s the target,” said Mr. Cason, “trying to find out of the millions of people in Miami somebody who is willing to give a stranger a kidney. It’s like a needle in a haystack. You have to get your message out that you need it and why you need it and that it’s safe for them. Most people feel really terrific afterwards, because they’ve given a gift of life to somebody.”

Mr. Cason said he has been slowly losing kidney function and has begun the process of identifying somebody who is willing to donate him a kidney.

“In that context,” he said, “I discovered that it’s not just a problem for me, but it’s a problem for lots and lots of people. I think the figures I have are that there are 633 people waiting in Miami Transplant Institute for kidneys, and 552 more people were added in 2024 and they only did 276 transplants. The demand is growing, and the supply is very limited.”

In the Miami area, he said, relatively few people donate kidneys, whether deceased donors or living. Most of the kidneys come from far away. 

Of the 552 individuals added to the waiting list last year, said Mr. Cason, 64% were male, 67% were between the ages of 35 and 64. The people on the waiting list: 47% were Hispanic, 32% African American, and 16% non-Hispanic white.

“We have so much to give,” said Dr. Guerra, “and I think it’s important for people to know that it’s not only safe to do it, but it’s important that we actually as a community come together to make a difference. It’s a gift that’s lifelong and could help not one person, but so many people. Usually, if you’re a deceased donor, and unfortunately, if something happens and you become an organ donor at the time of death, you could save up to eight lives, and that’s priceless.”

“I think,” she said, “we have a capability of continuing to impact even when we die, and there’s no reason why we shouldn’t do this, but even when we were alive, we also need to consider giving that gift of life, because we could save not only the person that we’re hoping to donate our kidney to, but by taking somebody off the list that’s giving thousands of other people a chance that are waiting for a deceased donor. It’s paying it forward. It’s really giving that gift and making a difference in other people’s lives when we least expect it.”

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