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  1. #1
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    Default America's Organ Transplant Law is Criminally Unfair to Donors-New Republic

    By Sigrid Fry-Revere and David Donadio

    From his desk at the Department of Defense, Steve Lessin spent his life serving his country, developing radar systems to help save American servicemen’s lives. But when he needed an organ transplant to save his own life, the law denied it to him.
    Lessin was diabetic but otherwise healthy and active—he was an avid skier and rock climber—until he developed kidney disease in his forties, landing him on the U.S. organ transplant waiting list. He was initially a good candidate for a new kidney, and in 1998, a close friend donated one to save his life, but it only lasted six years. At that point, he had no choice but dialysis, and after four years on it, he was too weak to undergo surgery.
    Lessin’s fate was sealed 30 years ago this past Sunday, when the United States enacted a well-intentioned law that effectively condemned him to death.
    As a result of the National Organ Transplant Act, more Americans have lost their lives waiting for an organ than died in world wars I and II, Korea, Vietnam, Afghanistan, and Iraq combined. The law bans almost any non-medical payment to living organ donors, whether by the government, health insurance companies, or charities. Recipients themselves can reimburse donors’ travel, lodging, and lost wages, which helps—but only when the recipients have the means and will to do so.
    The solution is not to create a market in organs, but to help living donors meet the considerable expenses they incur in saving others’ lives. Giving an organ costs an average of $5,000, but as the Journal of the American Society of Nephrology notes, can be as much as $20,000. According to the U.S. Census Bureau, 20 percent of American households have no discretionary funds at all, and only 8 percent can afford to spend $5,000 donating organs without dipping into their savings or going into debt.
    In the coming weeks, the American Society of Transplant Surgeons, the American Renal Society, and the American Society for Transplantation will all release white papers arguing for studies on compensated organ donation. While there is no harm in studying the creation of incentives, the first step should be to get rid of the financial disincentives that currently keep thousands of living donors from being able to donate. One sensible proposal would be creating a debit card-based system not unlike the one the government employs for the victims of natural disasters, enabling government programs, private medical charities, and other people to cover donors’ expenses as they occur.
    The situation could scarcely be more dire. In 1983, on the eve of the Transplant Act, there were 10,000 Americans waiting for organs. Today, the number is over 120,000, of whom 100,000 need kidneys. An additional300,000 Americans are on dialysis, many of whom, like Lessin, might once have benefited from a transplant but are now too sick to qualify.
    When we visited Lessin in Arlington, Virginia, in early 2009, his modest apartment smelled faintly of urine, and medical supplies were everywhere. Dialysis bags drained in the bathtub and 30-gallon trash cans sat full of tubing and other medical waste. A small second bedroom had become a warehouse of dextrose solution, saline, dialysis filters, tubing, clamps, sterile gauze and gloves, and more, all in boxes stacked five feet high.
    Lessin’s supplies cost at least $50,000 per year. He had 24 feet of dialysis tubing, which allowed him freedom of movement—he preferred the privacy and flexibility of dialyzing at home. “I’m one of the lucky ones,” Lessin said. “I can get everywhere in my apartment except the front door. I have to interrupt my treatment or just not answer the door if someone comes by while I’m dialyzing. But that is a hell of a lot better than having to sit still for hours on end.”
    Over time, all forms of dialysis weaken a patient’s heart, reducing circulation, and causing calcium buildups in the extremities. Lessin had undergone several surgeries, including an angioplasty that had saved the lower part of his leg. But by the time we met with him, he had lost several toes, and others were becoming necrotic, blackening and dying.
    Tens of thousands of Americans like Lessin die every year, while the barriers the Transplant Act places before living donors live on.

    The law resulted 30 years ago from righteous revulsion at aproposal by Dr. Barry Jacobs that the government pay people to come to the U.S. to donate their kidneys. Jacobs wanted to start his own business marketing organs, and figured that the government could spend relatively little compensating these donors—maybe only $1,000 each—and then send them on their way.
    Initially, Congress had simply been considering a low-profile law implementing a nationwide network to distribute cadaver organs, but when Jacobs suggested his idea in official testimony, it immediately got representatives’ attention. The prospect that the U.S. would ship thousands of impoverished people here from developing nations so that rich Americans could harvest their kidneys read like the plot of a science fiction novel.
    Dr. Paul Terasaki, president of one of the three main American transplant societies, testified before Congress in 1983 that physicians “strongly condemn the recent scheme for commercial purchase of organs from living donors,” and that it is a “completely morally and ethically irresponsible proposal.” Congress reacted by adding a provision that banned all but very specific types of payment in relation to organ donation, and the rest is history.
    Today, both Democrats and Republicans rightly fear that reforming the law too dramatically could encourage poor and at-risk populations to sell their organs in exchange for quick cash. But by banning almost all compensation to living donors, Congress has ensured that only the wealthiest and their friends can afford the costs of donating, while hundreds of thousands of other Americans suffer and die.
    In his forties, Lessin was young for an end-stage renal disease patient. The average age of an American dialysis patient is 60, and most people get there with Type Two diabetes or hypertension. But whatever the cause, as Baby Boomers age and the obesity epidemic worsens, the kidney shortage will only get worse.
    Today, even if every American donated his organs at death, it wouldn’t make enough of a difference; a 2003 study in the New England Journal of Medicine found that only about 1 percent of people die under conditions that allow them to do so. The rest are simply too sick, too injured, or too far from a hospital when they die.
    “I thought about buying a kidney on the black market,” Lessin said, “but I was worried my health insurance wouldn’t cover the transplant or my recovery if it was illegal to pay someone for a kidney abroad. I was worried that foreign facilities wouldn’t be safe, and I didn’t want to risk losing my job or landing in jail.”
    In July 2009, a few days after we last spoke to him, in a sleepy suburban development almost within sight of the U.S. Capitol, Steve Lessin paid for his loyalty to the law with his life.

  2. #2
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    Default Re: America's Organ Transplant Law is Criminally Unfair to Donors-New Republic

    Today the National Living Donor Assistance center helps living donors with unreimbursed travel and subsistence costs that could be barriers to their donating an organ if the recipient's income is within 300% of the federal poverty level. Some exceptions can be made to this financial guideline.

    On the site, it says, "The Program assumes that recipients whose income exceeds this level will have the ability to reimburse the living organ donor for the travel and subsistence expenses and any other qualifying expenses that can be authorized by the Secretary of HHS." You can read more about this program here:
    https://www.livingdonorassistance.org/

    In my opinion, it's different to pay someone for donating an organ vs. helping people with unreimbursed expenses (including loss of income) they incur as a result of their selfless act of donating an organ while living. In other countries where the practice of paying people was legal, there has been abuse with people donating and not getting paid what they were told they would be paid and people were accepted for donation who may have had risk factors leading them to later develop kidney disease and kidney failure. I know people who are on the transplant list sometimes get desperate, but I don't know anyone who would want the donation of kidney to them to result in the donor being harmed.
    Beth Witten MSW ACSW LSCSW
    Medical Education Institute, Inc.

  3. #3
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    Default Re: America's Organ Transplant Law is Criminally Unfair to Donors-New Republic

    es, I know and realize that some people in the future will get harmed in this situation. However, people are harmed in all kinds of situations that could not have been possible to be forseen in the past. I am not sure why people who need a kidney should suffer for the actions of other people in different countries? So, if the policy is a good idea, we should suffer for the actions of the very, very few compared to world population? One idea, is that the payment for the kidney could be required to be put in an account before the operation.

    The situations that you cite are corrupt third world countries and nations. So, what happens in corrupt third world dictatorships should be basis of official U.S. policy? Life is filled with costs, risks, and benefits. It is absurd that you think kidney patients should suffer for something that is very, very remote to happen, you are probably more likely to meet the President of the United States or a terrorist. In addition, under my system, if the donor kidney does fail, it would be very easy for them to get a new kidney, sound good?

    Please do not cite the poor individual situation. I worked in the welfare department for years, that line of thinking is bunk. I always hear that citation when you have nothing else to tell me. What have we heard from certain people, "My body, My Choice" right??? If you are to say that another human being owns their own body and has the right to kill unborn children..... I am not so sure where you do not support other human beings who own their own bodies to exercise that same right as the individual who wants to have an abortion performed on their body??? Many people are offended by the notion of human body parts becoming commodities for sale. There's at least a tiny bit of inconsistency because there is a market for human blood, semen and hair. Do people not have property rights within themselves, as does the woman who wants an abortion?

    It's noteworthy that everyone else involved in the organ transplant business is rewarded handsomely - that includes surgeons, nurses and organ procurement workers. Yes, we can reward these people by the billions, but rewarding a donor who is taking a great risk, well, well, we cannot allow that to happen. You see, we are "Guardians of the Kidneys." We deserve summer vacations, mansions. and other financial rewards, as we stuff billions into our pockets. Yes, we call everyone else "greedy" as we have private profits and socialized losses with the American taxpayer. No, donors should not profit from a kidney transplant, however, the entire transplant network profits every single year in the billions, no hypocrisy here is there?

    The simple truth is this, your policy has killed more people on the transplant list than all United States Military wars and combat operations, from 1776-2014. Now, there are over 100,000 people on the kidney transplant list, how in the name of God can you think this is a good policy. HELLO??? Just remember, years ago, it was said that women were dying in the back alleys of America, remember, and that was a horrible thing? I guess if people who need a kidney transplant are dying on your list, that is perfectly fine, as long as you feel good about yourself, right?

    Someone will have a beloved relative who will die because they need a kidney. Then, you can explain to them why you have such a great policy and why so you and your friends can feel good about themselves, their beloved relative, who took care of them for years, needed to die, so you could feel good about yourself.

  4. #4
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    Default Re: America's Organ Transplant Law is Criminally Unfair to Donors-New Republic

    Around this time, Steve Jobs began looking for a new liver. Unfortunately, he wasn't the only one doing so in California. In fact, over 3,400 Californians were waiting for a new liver in 2009. Only 671 got one. 400 died.

    What Steve probably did next, in the weeks between January and March, was what most wealthy Americans with failing livers do in the same situation: travel around the US and pay big fees to be examined by various doctors at various hospitals in order to get on as many waiting lists as possible.

    This process is called multiple-listing, and its benefit is that when looking for a patient who needs a liver, hospitals look at their own lists before moving on to the national one.

    The process is very time consuming. One of the hospitals where Steve got listed required an interview with a doctor, an interview with a a social worker, complete medical work including lab tests, an abdominal ultrasound, psychological clearance, a colonoscopy, an EKG, "and a number of other tests."

    Of course, anybody who needs an new organ to survive would go through such an ordeal over and over again. Most just can't afford to. Their insurance companies only cover one listing because getting listed is very expensive.

    By early to mid-March: a miracle. One of the hospitals at which Steve had gotten listed reached him to say that they had a liver and that he was the best candidate to receive it via transplant.

    It was Methodist University Hospital in Memphis, Tennessee.

    Steve acted fast. According to one source, Steve had the local lawyers at Burch,Porter & Johnson create a limited-liability corporation (LLC) called LCHG LLC and buy the nicest mansion in Memphis's wealthiest neighborhood on March 17, 2009.

    Then, during the week of March 22, 2009 Steve underwent surgery. His surgeon was either James D. Eason, M.D or Nosratollah Nezakatgoo, M.D.. The operation probably took five to six hours. The liver came from a person in their mid-20s who died in a car crash.

    ND:

    No way does money influence transplants, does it?

    Hospitalization from a liver transplant can take several weeks, and it wasn't until mid-April that Steve felt well enough to move into his new home in Memphis. According to a source who conducted several interviews, neighbors noticed when he did. They spotted Steve's wife around town and the security cameras he had installed in trees surrounding his home. They noticed the guard parked in the driveway.

    Doctors recommend liver transplant patients stay in town for at least a month after leaving the hospital. And so, between weekly visits to the hospital, Steve stayed at his new home in Memphis. Even if he felt up for it, Steve couldn't go out much because he had to take immunosuppressive medications to prevent rejection of the new liver, and this made him more susceptible to disease. (At least the place was nice. It's listed as a $1.4 million, 7,400 square-foot home, with five bedrooms and five bath rooms.)

    By June, Steve had recovered enough that he allowed it to be leaked to the Wall Street Journal that he would return by the end of the month. On June 20th, the WSJ also got word of Steve's surgery. In September, Steve was healthy enough to speak at Apple's annual refresh of its iPod line. Still a bit raspy, he told the crowd about his surgery and his new liver.

    By December 2009, Steve Jobs's life was much like it was before he got sick. Rumors were running wild again and, unlike the year before, and more like every other year in Steve's life since the launch of the iPod, they were not about his health, but about Apple's latest gadget.

    But something about his whole experience still bothered Steve.

    What bothered him was that while he, a very wealthy man, was surviving his liver's failure, others were not so lucky. Specifically, he was upset because, while he was able to afford the costs of multiple-listing and a private jet that could ferry him to any hospital in the country at a moment's notice, others in California could not; they had to stay in California and hope. He knew that 400 people died hoping.



    Read more: http://www.businessinsider.com/how-s...#ixzz3HoaqJR3R

  5. #5
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    Default Re: America's Organ Transplant Law is Criminally Unfair to Donors-New Republic

    Many times, the transplant industry only cares about the donor, not the person who needs a transplant, that is my experience.

  6. #6
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    Default Re: America's Organ Transplant Law is Criminally Unfair to Donors-New Republic

    In my lengthy experience working with people with kidney disease, I've always felt that kidney recipients get more attention and more follow up care than kidney donors. Once the surgery is over, the focus is on the recipient, not the donor. If the recipient has Medicare, when it's the primary payer Medicare pays 100% for the donor's evaluation, surgery, hospitalization and 3-months of post-hospital care under a global payment (organ acquisition fee) for a transplant. Medicare covers another 3 months of follow-up billed to the recipient's Medicare. After that Medicare stops covering follow-up for the donor unless a health problem is directly related to the donation surgery. Therefore, it's important for the donor to have his/her own health plan. Kidney donors should have the amount of life insurance they want to have prior to donating a kidney because insurance companies discriminate against living donors and transplant recipients for that matter. NKF is working to try to get life insurance companies to not discriminate against kidney donors.

    The public is told it's not a big deal for someone to give a kidney. After all, most people have two. I've even heard people say "Share your spare." It's important to remember that kidney donors are a highly selected group. They are thoroughly evaluated for current and potential health problems. If a person is accepted as a kidney donor the likelihood is that he/she is healthier at that time than the general public so it's not surprising that the short-term risk post-transplant is not much higher than risks to an average person. However, there are risks. Research has found that there may be greater long-term risk to living organ donors than previously thought. In fact, here's an abstract of a recent study looking at risks to kidney donors.

    J Am Soc Nephrol. 2014 Sep 25. pii: ASN.2014030227. [Epub ahead of print]

    Reassessing Medical Risk in Living Kidney Donors.

    Gaston RS(1), Kumar V(2), Matas AJ(3).

    Author information:
    (1)Division of Nephrology and Comprehensive Transplant Institute, University of Alabama at Birmingham, Birmingham, Alabama; and rgaston@uab.edu.
    (2)Division of Nephrology and Comprehensive Transplant Institute, University of Alabama at Birmingham, Birmingham, Alabama; and.
    (3)Department of Surgery, University of Minnesota, Minneapolis, Minnesota.

    The short- and long-term effects of unilateral nephrectomy on living donors have been important considerations for 60 years. Short-term risk is well established (0.03% mortality and <1% risk of major morbidity), but characterization of long-term risk is evolving. Relative to the general population, risk of mortality, ESRD, hypertension, proteinuria, and cardiovascular disease is comparable or lower. However, new studies comparing previous donors with equally healthy controls indicate increased risk of metabolic derangements (particularly involving calcium homeostasis), renal failure, and possibly, mortality. We discuss how these results should be interpreted and their influence on the practice of living donor kidney transplantation.


    The renal community must do all we can to reduce risks for living donors AND we need to investigate ways to encourage more people to sign donor cards and indicate their wishes to their families so their families will donate their organs (including their kidneys) when they die. A bumper sticker says: "Don't take your organs to heaven. Heaven knows we need them here."

    There are areas, including California where waiting times for organs is too long. Where I am in Kansas City, median (50% more, 50% less) wait times for a kidney are less than 2 years. Wait times vary based on individual factors. Why is there is such a huge difference between CA and KS/MO? I suspect one factor could be population, including number of people needing kidneys. However, with such a large population, why don't more people in CA agree to at least be deceased donors? Could any of the approaches used in my area for getting people to sign donor cards or asking families to donate their loved one's organs at death be used in areas of the country where kidney failure rates may be higher and/or organ donation rates lower so ordinary people who don't have the resources to multi-list can get a kidney faster? I totally understand that someone who has failing kidneys or is on dialysis and wants a kidney transplant can get desperate and depressed waiting a long time for a kidney during which health problems might arise putting their candidacy at risk. There must be other ways to encourage organ donation besides paying living donors. Paying funeral costs for deceased donors and making those interested in transplants and their living donors aware of the National Living Donor Assistance Center could both help reduce barriers to donation.
    https://www.livingdonorassistance.org/
    Beth Witten MSW ACSW LSCSW
    Medical Education Institute, Inc.

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    Default Re: America's Organ Transplant Law is Criminally Unfair to Donors-New Republic

    Why are you so obsessed with not paying financial compensation to donors? By the way, did you enjoy your President's beatdown?

  8. #8
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    Default Re: America's Organ Transplant Law is Criminally Unfair to Donors-New Republic

    I guess you must have missed where I provided information about the National Living Donor Assistance Center that can help donors pay for expenses related to donation, including loss of pay from work. Isn't that a form of compensation?

    I am sure you're not so anxious to get a transplant that you would push anyone to donate a kidney to you who might have risk factor(s) for future kidney problems. Providing too high a compensation to donors could encourage people with risk factors to take the chance for financial gain. I know there are some who would say they deserve the option to make that choice. As someone who has lived with kidney failure and dialysis, could you have a clear conscience if a future donor developed kidney failure?

    How much would you be willing to pay out of your pocket for a donor or are you expecting the government (taxpayers) to pay organ donors?
    Last edited by Beth Witten MSW ACSW; November 9, 2014 at 04:30 PM.
    Beth Witten MSW ACSW LSCSW
    Medical Education Institute, Inc.

  9. #9
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    Default Re: America's Organ Transplant Law is Criminally Unfair to Donors-New Republic

    Quote Originally Posted by Beth Witten MSW ACSW View Post
    I guess you must have missed where I provided information about the National Living Donor Assistance Center that can help donors pay for expenses related to donation, including loss of pay from work. Isn't that a form of compensation?

    I am sure you're not so anxious to get a transplant that you would push anyone to donate a kidney to you who might have risk factor(s) for future kidney problems. Providing too high a compensation to donors could encourage people with risk factors to take the chance for financial gain. I know there are some who would say they deserve the option to make that choice. As someone who has lived with kidney failure and dialysis, could you have a clear conscience if a future donor developed kidney failure?

    How much would you be willing to pay out of your pocket for a donor or are you expecting the government (taxpayers) to pay organ donors?
    First, before I would invest in paying someone for a kidney, I would have them tested for risk factors, common sense. No, I would not expect taxpayers to foot the bill, as many on here seem to think that is the solution for every issue.

    Second, how do you live with the idea that you expect others to live as you and your family would not live? Would you be willing to be thirsty for the rest of your life, to make others feel good about themselves? Why do you feel you have to the right to party all over town, while we sit on a dialysis machine for hours upon end? Why do you feel you deserve high levels of financial compensation, while complaining about profit and capitalism? I do not know of any field that requires someone to take such a high risk without financial compensation, do you? Do we not deserve to eat and drink as we please, as you do? It is amazing to me that there are so many people everywhere who feel it is job or duty to shove their belief system down our throats. How is it the duty of other people to tell a diabetic how to live when the cause of diabetes is unknown, according to Mayo and Johns Hopkins, and the Cleveland Clinic? I encountered many people who are 350-500 pounds without diabetes, can you explain that one to me? My last cholesterol was 50, I eat as I please, please explain that one? It is also funny, to listen to these people who run around and proclaim, "Dialysis patients are going to die!!!!" Word to the wise Moron, everyone is going to die, a very sad fact of life. The people who are associated with the kidney and dialysis industry make total fools of themselves, each and every single time that they open their mouths. These people have been proven to be wrong, time and time again, why would anyone listen to them or give them the time of day?

    Third, I hear Human Rights Groups cry and complain about people being so thirsty as they cross the border. Yet, that is how dialysis patients are treated and human rights groups say not one blank, blank, blank word. Dialysis patients are not treated as human beings, but, as criminals. If cancer patients were treated as dialysis patients, there would be a lawsuit, before that worker walked out the door. Talking about human rights is easy and cheap. It does not cost those people a dime to run their mouths.

    How much would I pay, compared to what??? It would depend on certain factors, age of the donor, health of the donor, etc.

  10. #10
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    Default Re: America's Organ Transplant Law is Criminally Unfair to Donors-New Republic

    Every action in life has costs and benefits. The vast majority of people with one kidney live a long and happy life. I really doubt that people will be on machines in 5-10 years, neither does Indiana University Nephrology. If the costs and benefits were clearly explained to the donor, not I would not have any guilt. Why is it that dialysis patients are the only ones that are supposed to have guilt in this world?

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