From Genomeweb.com by Molika Ashford
From the Wall Street Journal, by By GARY S. BECKER and JULIO J. ELIAS
Cash for Kidneys: The Case for a Market for Organs
In 2012, 95,000 American men, women and children were on the waiting list for new kidneys, the most commonly transplanted organ. Yet only about 16,500 kidney transplant operations were performed that year. Taking into account the number of people who die while waiting for a transplant, this implies an average wait of 4.5 years for a kidney transplant in the U.S.
The situation is far worse than it was just a decade ago, when nearly 54,000 people were on the waiting list, with an average wait of 2.9 years. For all the recent attention devoted to the health-care overhaul, the long and growing waiting times for tens of thousands of individuals who badly need organ transplants hasn't been addressed.
Finding a way to increase the supply of organs would reduce wait times and deaths, and it would greatly ease the suffering that many sick individuals now endure while they hope for a transplant. The most effective change, we believe, would be to provide compensation to people who give their organs—that is, we recommend establishing a market for organs.
Organ transplants are one of the extraordinary developments of modern science. They began in 1954 with a kidney transplant performed at Brigham & Women's hospital in Boston. But the practice only took off in the 1970s with the development of immunosuppressive drugs that could prevent the rejection of transplanted organs. Since then, the number of kidney and other organ transplants has grown rapidly, but not nearly as rapidly as the growth in the number of people with defective organs who need transplants. The result has been longer and longer delays to receive organs.
Many of those waiting for kidneys are on dialysis, and life expectancy while on dialysis isn't long. For example, people age 45 to 49 live, on average, eight additional years if they remain on dialysis, but they live an additional 23 years if they get a kidney transplant. That is why in 2012, almost 4,500 persons died while waiting for kidney transplants. Although some of those waiting would have died anyway, the great majority died because they were unable to replace their defective kidneys quickly enough.
The toll on those waiting for kidneys and on their families is enormous, from both greatly reduced life expectancy and the many hardships of being on dialysis. Most of those on dialysis cannot work, and the annual cost of dialysis averages about $80,000. The total cost over the average 4.5-year waiting period before receiving a kidney transplant is $350,000, which is much larger than the $150,000 cost of the transplant itself.
Individuals can live a normal life with only one kidney, so about 34% of all kidneys used in transplants come from live donors. The majority of transplant kidneys come from parents, children, siblings and other relatives of those who need transplants. The rest come from individuals who want to help those in need of transplants.
In recent years, kidney exchanges—in which pairs of living would-be donors and recipients who prove incompatible look for another pair or pairs of donors and recipients who would be compatible for transplants, cutting their wait time—have become more widespread. Although these exchanges have grown rapidly in the U.S. since 2005, they still account for only 9% of live donations and just 3% of all kidney donations, including after-death donations. The relatively minor role of exchanges in total donations isn't an accident, because exchanges are really a form of barter, and barter is always an inefficient way to arrange transactions.
Exhortations and other efforts to encourage more organ donations have failed to significantly close the large gap between supply and demand. For example, some countries use an implied consent approach, in which organs from cadavers are assumed to be available for transplant unless, before death, individuals indicate that they don't want their organs to be used. (The U.S. continues to use informed consent, requiring people to make an active declaration of their wish to donate.) In our own highly preliminary study of a few countries—Argentina, Austria, Brazil, Chile and Denmark—that have made the shift to implied consent from informed consent or vice versa, we found that the switch didn't lead to consistent changes in the number of transplant surgeries. [Read more]
DENVER- Think about what you would do if someone you loved needed a kidney or liver. Both of those organs can be donated while the donor is still alive, but finding living donors isn't easy.
Gary McCormack of Loveland has become a walking billboard to save his wife's life. Every day he wears a sweatshirt which says, "KIDNEY NEEDED Save a Live Please Call 970-667-7841."
Gary's wife of 52 years, Phyllis, is the one who needs the kidney. She has Polycystic kidney disease, which causes cysts to form in the kidneys. Eventually, they become enlarged and can rupture. PKD has killed nearly every member of Phyllis' family, including her mother, who was on dialysis for 20 years
Phyllis was diagnosed with PKD when she was 40 and has done everything she can to slow the progression.
"I have always exercised. I have always watched what I ate, kept my weight down," Phyllis said.
However, it wasn't enough and Phyllis is now in stage four kidney failure. When Phyllis gets to stage five, she, like her mother, will have to start dialysis. The only way to save her life is a kidney transplant.
According to the American Transplant Foundation, Phyllis is one of 2,400 Coloradans waiting for organ transplant. 2,300 of those people need a kidney or liver. Phyllis' doctors say the best option for her is a living donor.
Many people in Phyllis' situation ask a family member, but she can't. PKD is genetic, so her daughters can't donate. Gary has kidney stones and is diabetic. Phyllis needs what's called an altruistic donor: someone who doesn't even know her, but is willing to give her their kidney.
So, In addition to wearing his sweatshirt, Gary has written letters, which he sent to 95 churches, and made posters, which now hang all over town. A few people have called, but no one is a match.
The American Transplant Foundation says being a living donor is easier than you might think and it starts with a simple blood test . [Read more]
OLD ORCHARD BEACH, Maine (NEWS CENTER) -- Gary Rutter suffers from polycystic liver disease. He had been receiving dialysis treatments several times a week for the past four years after both of his kidneys failed. He was registered in a program at Maine Medical Center that matches kidneys among groups of strangers.
On December 19th, Hallie Twomey of Auburn donated her kidney which was transported to Connecticut and transplanted into 20-year old Ryan Dasilva. One of Dasilva's father's kidneys was flown to a Toldeo Ohio hospital and transplanted into a 47-year old Michgan woman, another kidney from a 36-year old Michigan man was flown to Maine Medical Center and transplanted in Rutter -- all in the same day. Sutter says he is feeling great and is grateful to the program that saved his life.
The United Network of Organ Sharing program involved six patients, six kidneys and three hospitals. On December 19th, kidneys were removed from three different donors including Twomey, all were transplanted into waiting patients that same day including a Old Orchard Beach resident who had been on dialysis for nearly four years waiting for a new kidney. [Read more]
My cousin was born with neuroblastoma, a rare type of childhood cancer that resulted in a surgery to remove one of her kidneys and radiation treatments. Several years later, as an adult, she was diagnosed with Polycystic Kidney Disease (PCKD). PCKD is generally a hereditary condition, although no one else in our family has it. The disease was progressing and Melanie was told she would soon require dialysis if a donor was not found.
Unfortunately, over 1,600 Canadians are added to organ wait lists every year and every year people on these lists die while waiting for a lifesaving organ.
In 2005, I was studying naturopathic medicine in Toronto (where my cousin’s specialists also happened to be). With things looking pretty desperate for a donor, I offered to donate my kidney to my cousin. In July of that year, after various tests to ensure we were a match and that I was healthy enough to be a donor, we underwent surgery to remove one of my kidneys, which was then put into my cousin – the wonders of modern medicine! After a very short hospital stay I was on my way home. Using my knowledge of naturopathic medicine, I recovered quickly, with very little pain and zero complications. Melanie’s hospital stay was longer as her body tried to reject the donated kidney. With the expertise of her doctors, they stabilized her immune system and she was able to go home with a new lease on life.
A transplant is a type of surgery where an organ or tissue is removed from one person, the donor, and given to another, the recipient. There are various reasons why a person may need a transplant including damage, trauma, or illness that influences the ability of that organ or tissue function.
The first transplant in the 1950s was of a heart valve. Since then, successful transplantations of almost all organs and tissues – including kidney, lung, liver, heart, bone marrow, pancreas, bowel, eye, and skin – occur every day. Major advancements in drug protocols have also drastically decreased rejection rates.
Not everyone has the opportunity or ability to be a live donor, and the need for organ and tissue donation far exceeds what live donors could provide. Also, not all organs can be donated from live donors. I feel blessed that I was given the chance to have the experience. I feel very proud of the choice I made and the impact it continues to have.
What everyone does have is the opportunity to save lives - in fact by making the commitment to donate your organs and tissues after you no longer need them, your decision can benefit more than 75 people and save up to eight lives! What a gift!
Anyone, regardless of age or medical history, can sign up to be a donor and there is no cost to do so.
According to the Canadian Transplant Society website, over 80 per cent of Canadians support organ transplant but less than 20 per cent have actually made plans to donate their organs and tissues.
If organ transplant sounds like a good idea to you, please take the appropriate steps to ensure someone else can benefit from your organs and tissues when you no longer need them. It can be hard to think about what’s going to happen to your body after you die but being an organ donor is a heroic, worthwhile decision that can save lives. Sign your donor card. Visit www.cantransplant.ca for provincial links to registration steps. Include your wishes in a will and let your friends and family know your intentions. Most provincial medicare renewal forms allow you to clearly indicate if you wish to donate.
My cousin’s story doesn’t end after a new kidney; she truly is making the most of her second chance at life. In July of this year, eight years after the transplant, she traveled to South Africa to compete for Team Canada in the World Transplant Games. To read more about my amazing cousin and her mission to bring awareness to organ donation, visit The Pear Tree’s Facebook page for a link to her story. [Read more]
Kidney Treatments
Patients Can Do More to Control Chronic Conditions
By the time Gail Rae-Garwood was diagnosed with chronic kidney disease at age 60, it was already too late for prevention, and there is no cure. But Ms. Rae-Garwood decided she could do something else to preserve her quality of life: slow the progression of the disease.
For the millions of Americans over 50 who have already been diagnosed with chronic ailments like kidney disease, diabetes, heart disease, rheumatoid arthritis and chronic obstructive pulmonary disease, careful management can’t turn back the clock, but it can buy time. It takes adherence to medications, sticking to recommended diet and exercise plans, and getting regular checkups.
As simple as that sounds, experts say, patients often don’t hold up their end of the bargain, and doctors don’t always have the time to help between visits. Chronic ailments may also lead to depression, which itself is associated with poor adherence to medication across a range of chronic illness, according to a 2011 study in the Journal of General Internal Medicine.
“The whole goal in conditions that are lifelong, and aren’t going to go away, is to stabilize them and keep them as stable as possible for as long as possible,” says Edward Wagner, a researcher and founding director at Seattle-based Group Health Research Institute.
Dr. Wagner developed a protocol known as the chronic-care model in the 1990s, which has been increasingly adopted by many health-care providers. One of its primary goals, in addition to careful monitoring, is teaching patients self-management skills. “Evidence is mounting that the more engaged and activated patients are in their own care, the better the outcomes,” Dr. Wagner says.
Take kidney disease. One of the fastest-growing chronic conditions world-wide, it affects 26 million Americans, and millions of others are at increased risk, according to the National Kidney Foundation. Over time, the kidneys lose their ability to filter waste and excess fluid from the blood; the condition may be caused by diabetes, high blood pressure and other disorders. But patients may not have symptoms until it is fairly advanced. As dangerous levels of fluid and wastes build up in the body, it can progress to so-called end-stage renal disease, or kidney failure. Without artificial filtering, known as dialysis, or a kidney transplant, the disease can be quickly fatal.
But especially in earlier stages, lifestyle changes that ease the burden on the kidneys can have a marked effect, including eating less salt, drinking less alcohol and keeping blood pressure under control. Doctors may suggest a “renal diet” that includes limiting protein, phosphorous and potassium, because kidneys can lose the ability to filter such products.
Sometimes modest changes can make a difference. Even small amounts of activity such as walking 60 minutes a week might slow the progression of kidney disease, according to a study published last month in the Journal of the American Society of Nephrology.
There are plenty of resources to help kidney patients manage their disease, including the kidney foundation website (kidney.org) and classes offered by the dialysis division of DaVita HealthCare Partners Inc. The company says it educates about 10,000 patients annually at free “Kidney Smart” classes across the country.
Ms. Rae-Garwood says she decided to become engaged in her own care and share what she learned with fellow patients, after she was diagnosed in 2008 with Stage 3 kidney disease.
“People need to be educated and learn how to manage it so that they are not immediately on dialysis or on death’s door,” she says. [Read more]
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