Addressing the growing demand for kidneys

Josephine Marcotty of the Minneapolis Star Tribune recently wrote a series addressing the increasing demand for kidneys, a need spurred by an aging population, increases in diabetes, obesity and high-blood pressure. She found that it is a public health crisis that costs the nation $33.6 billion a year, and there is no end in sight.

By Josephine Marcotty

I did this series because I got beat. In late 2007 The Wall Street Journal published a story about Dr. Arthur Matas’ provocative idea that people who donate a kidney should be paid. Matas is a well known kidney transplant surgeon at the University of Minnesota, someone I’ve quoted and written about many times for the Star Tribune. But I had never written a story about his perspective on compensating kidney donors.

I hate to get beat. Especially by a national paper in my own backyard.

So I did what self-respecting journalists always do – I went to the opposition. In this case, I talked to Jeff Kahn, Ph.D., M.P.H.,a bioethicist at the university, who vehemently disagreed with Matas. He said that there are huge barriers to living donation within the transplant system. We don’t have to pay people to donate, he said. We just have to make it easier for them.

Most people have this idyllic view of organ donation. All the stories, and there thousands of them, tend to be heartwarming, “miracle” stories about remarkable acts of generosity that save a life.

I decided to write about the dark side. I wanted to do a story about someone who had to find a living a donor and what they were up against.

And really, I just wanted to do the one story. But when I mentioned it to my managing editor, Rene Sanchez, he said no. He wanted a project. Something big, and edgy with national significance. So, of course, I dithered.

In other words, I pulled string. I found an elderly man from New York who had found a donor on Matchingdonors.com. But he had to come to the university for the surgery because at the time it was the only transplant center that would do it. All the others said no, fearing that somehow the donor was being coerced. I talked to another bioethicist who said “you don’t want us to be the broker” between donors and recipients. After all, transplant centers have a vested interest in doing transplants. I was struck by the harsh contrast between highly regulated, scrupulously fair deceased donation system, and the anarchy of living donation.

Finding the story

One of the great things about covering transplant medicine is that the data is endless and all public. In fact, the problem is too much data. The United Network for Organ Sharing collects data from all transplant centers and compiles it on its Web site. In addition, researchers slice and dice it a million different ways. The University of Michigan runs a parallel Web site with transplant data sliced another way. So the numbers are there if you want them. The numbers led me to half a dozen stories that I considered and discarded. Inequities in transplant, for example. A third of the people on the deceased donor transplant list are African American. Partly that’s because they suffer disproportionately from the diseases that cause kidney failure – high blood pressure and diabetes, primarily. But I let it go because the forces driving that disparity are the same as for disparities in health care generally. I did not want to tackle the entire health care system.

I spent a lot of time researching the intense debate roiling among kidney transplant surgeons about changing the allocation system for deceased donation. They get all hot on it. But when I explained it to my editor, he gave me an “are you kidding me” look and said. “I don’t want a story about UNOS!”

With that healthy jerk back to reality, I moved on.

I attended the global conference on transplant medicine, the annual event for transplant surgeons and nurses from around the world. I learned a lot. I listened to Matas argue with Francis Delmonico, M.D., the former head of UNOS, over compensating kidney donors and realized that this was a dance they had been doing for years. I also realized that as interesting as the debate is, there is no way on this green earth that it will happen in this country any time soon.

Another jerk back to reality.

Finally, I ended up where I had begun. A story about one person who needed a kidney. I talked to a dozen or more kidney patients. I thought about focusing on the New York patient who found a donor on matchingdonors.com, but I wanted someone who was in the process now. I wanted someone with an ambiguous ending because that’s how it is for many people. They wait. Some gently ask. They hope someone will get the hint and step forward. They get no help. And many of them die without ever asking the question: Will you give me your kidney? Of course, no one knows how many people are actively looking for a living donor. UNOS keeps copious data on transplants, but nothing on people who are seeking living donors. It’s a black box. No one studies it.

I heard about Melissa Larson, the woman I followed for six months, from the Minnesota chapter of the National Kidney Foundation. One of their program managers told me Larson had stood up at a donor meeting and described how she and her mother had hung flyers in bars, convenience stories and gas stations across western Minnesota. Is that what it’s come to, I thought, hanging flyers, posting ads on Craiglist and paying $600 to post a profile on matchingdonors.com, the transplant equivalent of eHarmony.com? There ought to be a better way.

We settled on three main stories:

• Part one – Larson’s tale and the purgatory of dialysis.
• Part two – the transplant centers who play God when they decide who can be a donor and who can’t.
• Part three – kidney exchanges, the breathtakingly brilliant idea that would bring logic to a chaotic system and keep it voluntary.

I followed Larson through her life – her kids, dialysis, a failed Harley-Davidson motorcycle ride fundraiser, learning home dialysis, her ever-deepening bitterness about how alone she felt in her effort to find a donor. Why won’t they help me, she said of the university’s transplant center.

Getting inside the program

The University of Minnesota let me in to explain why. It has always pushed the envelope on living donation. It was the first to accept altruistic donation – a donor willing to give a kidney to someone unknown. It was the first to accept stranger-to-stranger donations. They knew that kidney disease was reaching a public health crisis. And they knew me. I had spent a year talking to them about living kidney donation. I cover transplant medicine for the Star Tribune, and have done many other stories on the subject. I developed a relationship with the living donor coordinator, Cathy Garvey. They gave me that perspective that journalists often long for – the fly on the wall. I watched them deliberate who could be donor and who could not. They shared their side of Larson’s story.

I met Michael Rees, M.D., Ph.D., a University of Toledo kidney transplant surgeon, at the transplant conference. I was struck by his idealism and boy scout-like enthusiasm for kidney pools. He provided the backbone for the third story on kidney exchanges, and also provided the insight about the barriers to living donation that pop up across the health care system. He also provided a sense of urgency. Kidney exchanges work like the bone marrow donor pools, and they could solve Larson’s problem. But if his doesn’t get legal and financial support soon, it will be too late.

My executive editor, Nancy Barnes decided to add the debate about compensating donors as a fourth part. Both Matas and Kahn wrote pieces laying out their arguments that we published on the front page. It’s the only time the newspaper has devoted that space to a debate framed by outside experts.

From the reams of available data I used only a handful of numbers. There are now as many living kidney donors as deceased donors. The number of people in kidney failure has reached epidemic proportions, and there is no end in sight. Every year 4,000 people die while waiting for a kidney from a deceased donor. Of the 100,000 people waiting for an organ, more than 80,000 are waiting for a kidney.

Lessons learned

The hardest part of this assignment is distilling something useful for other health care reporters about my experience. So this is what I have:

Don’t drink the Kool Aid. Medical ethics are often noble, but not always right. Health care reporting is rife with heartwarming and heart rending stories about tragically ill children and courageous surgeons and new procedures and techniques that work like miracles. Ignore them. Instead, look for someone with a strong urge to survive who has been cast adrift in the chaos of medicine. That’s where you’ll find a fresh story worth telling.

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Josephine Marcotty is a medical writer and investigative reporter based on the Star Tribune’s health team.