Tuesday, October 30, 2007
Diane Suchetka
Plain Dealer Reporter

Vadim Finkelstein needs a kidney.

Without one, the 39-year-old Solon man has to undergo dialysis three times a week, four hours each time. Afterward, he's so weak all he wants to do is go home and crawl into bed.

Thirty miles away, in Mentor, a technician pokes a needle into Steve Derezic's arm and hooks him up to the dialysis machine at his side. Derezic is 49. He has been on the national organ transplant list for three years. It could be two or three more years before he reaches the top.

Nearly 100,000 Americans are in the same boat. And it's full of holes.

Of the 91,376 people waiting for kidneys last year, 4,276 died.

So Finkelstein and Derezic, like thousands of other patients, are reaching for a life raft: the Internet.

"Please help my mommy," people plead in their online ads. "Too Young to Die," they say, hoping they've found the words to persuade a stranger to give up a piece of himself.

"It's like playing roulette," says Donnie Doyle of Minnesota, who's using an online classified ad to search for a kidney for his 24-year-old son. "I can hit bigger numbers by doing this.

"It's not the easiest thing to do, to say, 'Yeah, you can have one of my vital organs.' "

It's not the easiest issue for the rest of us to come to terms with, either.


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"It's a very huge ethical conundrum," says Dr. Mark Aeder, surgical director of kidney transplants at University Hospitals Case Medical Center and a former member of the ethics committee of the American Society of Transplant Surgeons.

Professional organizations find themselves smack in the middle of the debate. And they've taken different sides.

The nonprofit United Network for Organ Sharing, which oversees America's transplant list, for example, says it will not participate in the solicitation of organs for specific patients.

"We want to make sure that the potential living donor knows what is involved, what the medical risks are, and what options he or she has," the group's statement says. "We also need to maintain public trust in the national transplant system and to ensure that candidates are considered equitably."

The Society of Transplant Surgeons had opposed the transplantation of organs that patients found for themselves. But it shifted its position in 2006. Now, it supports the public pleas because of the organ shortage, its statement says. It does so under two conditions: that the donor is motivated by kindness and that measures are in place to ensure the safety of the patient and the donor.

"It's still not a well-accepted policy," says Aeder. "We, as a group, are trying to find our own comfort level, as everybody else is."

One of the biggest concerns, he says, is making sure donors know all the risks - physical and emotional.

"You have to do everything you can to protect the individual who steps forward to do that," Aeder says. "They should never come back and say, 'I'm sorry I did this.' "

People have solicited for organs for years - on billboards, through churches, in news stories.

What's heating the debate is increased use of the Internet and Web sites such as MatchingDonors.com.

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"It's controversial for two reasons," says Marty Smith, director of clinical ethics at the Cleveland Clinic.

The first, he says, is fairness.

The traditional system, the national organ transplant list, prides itself on its objectivity. When an organ becomes available, it goes to the patient who is the best match, according to the nonprofit organ network. Recipients are chosen by blood and tissue type, how badly they need the organ for survival and how long they have waited - not financial status, gender, religion or ethnic background, the group says.

That's not the case when donors and patients go in search of each other.

Does the writer who composes a beautifully passionate plea for an organ have an advantage over a mediocre writer who's closer to death? Smith asks.

And what about other traits?

Are deeply religious parents of young children more likely to find donors than single atheists?

Money comes into play, too.

Those who are poor are less likely to have home computers and Internet access. And Web sites often charge for the ads.

Patients pay $295 for a 30-day posting on MatchingDonors.com; $441 for 90 days; and $595 for a lifetime. But it waives the cost for those who can't afford to pay, its founders say.

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The big money concern, though, is that donors might really be sellers who want to be paid for their organs.

The co-founders of MatchingDonors.com have taken steps to keep that from happening. They post a warning on their Web site, in big, red letters: "It is absolutely against the law to have any financial benefit from organ donation," it says. "If you are paid, or request to be paid, for any transplant you will be prosecuted to the full extent of the law."

"I think there is the potential for mischief," says Dr. Jeremiah Lowney, a Boston internist who co-founded MatchingDonors.com in 2004, "but probably no more than for any other live-donor transplant.

"We've had people who've called us and said, 'Hey, this guy just called me and said I'll give you my kidney, but I want $20,000.' The good thing about it is most of our patients, actually all of the people who've come on the Web site, have had four or five people interested in helping them out. So the incentive is not there to pay someone on our Web site, because there's so many other people willing to do it for nothing."

And what about the guy who donates his kidney to his brother? Lowney asks. "That's great. But did the mother say, 'You better donate to your brother or you're going to be out of the will'?"

The strongest argument in support of Internet organ matches, though, is that they help everyone on the national list of potential recipients, by moving them all closer to the top.

That, some say, gets to the real problem: Not enough people donate organs after death.

"The current system isn't working," Lowney says. "There are potentially thousands and thousands of unbelievably beautiful people willing to donate out of the kindness of their hearts. And we can't continue to ignore them."

Ethicists agree that more donors are needed.

"If we got more people to donate organs after death, we probably wouldn't even be having this debate," says Smith, the Cleveland Clinic ethicist. "I think this could prod us as individuals, and maybe as a country, to keep thinking about better ways to solicit donations after someone has died."

Until then, those who need organs and their families say they see nothing wrong with using the Internet.

"This is just additional hope," Finkelstein's wife, Alina, says about her husband's posting on MatchingDonors.com, which she hopes will end his four years of dialysis. "It makes the pool wider. I can't say enough about these people who donate. They're giving life."

Dr. John Nekic, a Boston physician who posted brother-in-law Steve Derezic's plea for a kidney on MatchingDonors.com, agrees.

"My sister's children have seen more ambulances than any child should ever have to see," he says. "I'm just trying to preserve the children's innocence - that's the bottom line.

"Is it fair? I don't know. But if another 10 people can get organs, that's 10 more families whose quality of life is improved."

To reach this Plain Dealer reporter:

dsuchetk@plaind.com, 216-999-4987

I tried to reply to your PM, Angie, and it gave me this error::

An Error Has Occurred!


Net::SMTP fatal error: unable to create Net::SMTP object 127.0.0.1. at (eval 2) line 3.

I tried to go back and just send you a PM instead of replying, but the same thing happened.

Net::SMTP fatal error: unable to create Net::SMTP object 127.0.0.1. at (eval 16) line 3.

Patients with Kidney Disease Feel that Appropriate Hemoglobin Levels are Vital to Ensure a Good Quality of Life

RSN Media Alert

September 13, 2007

For Release Immediately

Contact: Heidi Lesemann
Renal Support Network
(866) 903-1728 Ext. 105
heidi@rsnhope.org


GLENDALE, CA—Patients with chronic kidney disease (CKD) typically suffer from debilitating anemia that is characterized by low hemoglobin levels, fatigue, and a poor quality of life. Severe anemia may also necessitate blood transfusions, which can limit the options for future kidney transplantation. Testifying in front of a joint committee of the Food and Drug Administration (FDA), Lori Hartwell, founder and president of the Renal Support Network, provided compelling first-hand insights on why appropriate anemia management is vital to the quality of life of patients with CKD.

The FDAs joint Advisory Committee, composed of members from the Cardiovascular and Renal Drugs and Risk Management Advisory Committees, was convened to discuss the use of erythropoiesis stimulating agents (ESAs) and target hemoglobin levels in patients with chronic kidney disease (CKD). ESAs have been used to treat anemia in patients with CKD for almost 20 years. For the past 10 years, the typical target hemoglobin level for patients with CKD has been approximately 11 to 12 g/dL. Recent clinical trials in patients with CKD or cancer revealed potential safety concerns when hemoglobin was targeted to exceed the 11 to 12 g/dL threshold (for example, 13 g/dL or above). As a result of these data, the FDA Advisory Committee debated whether hemoglobin targets for patients with CKD should be decreased to 10 or 11 g/dL

Testifying on behalf of patients, Ms. Hartwell asked the committee to consider both the risks and benefits of ESA therapy and appropriate hemoglobin levels. “I am not downplaying the safety risks of the trials that have been published,” stated Ms. Hartwell. “All drugs carry risks, and patients deal with these risks every day in every facet of medicine. However, patients are also acutely aware that the potential risks associated with drug therapy need to be weighed against the benefits.”

Ms. Hartwell explained why the hemoglobin target of 11 to 12 g/dL currently recommended by the
National Kidney Foundation’s Kidney Disease Outcomes Quality Initiative helps improve the quality of life for patients with CKD. “Many studies have shown that treatment outcomes and quality of life suffer when hemoglobin levels fall below 11.0 g/dl, and my own experience confirms these data,” Hartwell stated. “ At a hemoglobin at 11 g/dL I can feel the difference. Daily activities become difficult or impossible to perform. Shortness of breath and fatigue are constant reminders that I am chronically anemic.”

Ms. Hartwell went on to read a sampling of quotes from other patients to emphasize the impact of anemia on patient quality of life. “I urge the committee to consider how the quality of kidney patient’s life will suffer if your decision forces us to ignore twenty years of progress and regress to hemoglobin levels where it is near impossible for us to remain productive citizens,” she stated. “I would contend that regaining our quality of life is as important as preserving our lives.”

Hartwell also discussed the increased risk for blood transfusions in patients with lower hemoglobin levels. Before ESA therapy was available, about 16% of patients on hemodialysis required a blood transfusion each quarter of the year. That pattern has changed significantly since the advent of ESA therapy, and currently less than one-half percent of patients on hemodialysis require blood transfusions. Hartwell pointed out that, “Blood transfusions can have a significant and long-lasting negative impact on our health and even increase our risk for death. Blood transfusions can severely affect a patient’s ability to receive a kidney transplant. The reactive antibodies received from blood transfusions result in fewer potential kidney matches from donors…As a result of blood transfusions, the number of potential kidney donors that are a compatible match is severely limited.”

In closing her testimony, Hartwell asked the committee to consider the patients perspective, and include an assessment of the impact of their decision on patient quality life. She stated, “Quality of life is measurable. Patients measure it every day.”

On the basis of the testimonies provided by clinical and technical experts from the nephrology community, as well as Ms. Hartwell, the FDA’s Advisory Committee recommended a hemoglobin target range of 10 to 12 g/dL for patients with CKD. Additional recommendations regarding ESA dosing recommendations and how to identify patients who exhibit hyporesponse to ESA therapy are forthcoming.



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(September 13, 2007)



RSN’s full testimony to the FDA is on the web at RSNhope.org, or via email. Please contact as above.

For Lori Hartwell's full testimony, CLICK HERE

About RSN: The Renal Support Network (RSN) was founded in 1993 by Lori Hartwell—a longtime chronic kidney disease (CKD) survivor—to instill health, happiness, and hope into the lives of others affected by CKD, A nonprofit, patient-focused, patient-run organization, RSN provides lawmakers and policymakers with the patients’ perspective on the needs and capabilities of people with CKD.

I have also posted in another Registry here.