From Modern HealthCare, By Steven Ross Johnson
"Traveling was an inconvenience because I always had to set up appointments for dialysis in each city that I would visit," Boyce said.
Things changed for the better however last July, when Boyce, 70, received a kidney transplant after being on the waiting list for nine years. Boyce's procedure was one of more than 34,700 organ transplants performed in the U.S. in 2017, marking a new record.
But what made Boyce's transplant nearly unique was the fact that she was the third person to have the same kidney, thanks to a procedure that had been performed only a few times since it was first introduced in the U.S. nearly a decade ago.
Boyce's kidney came from a 25-year-old man who had received it in a transplant in 2015. A 17-year-old girl who had died was the source of the kidney, which was functioning well inside the first recipient until he died in a car accident in 2017.
Such transplants have not been widely performed because of the procedure's complexity, as well as the fact that the damage a kidney usually sustains after an initial transplant makes it a poor candidate for a second procedure.
But the team that performed Boyce's surgery is hopeful the technique can reveal the potential for reusing viable kidneys to become a standard medical practice at transplantation centers and help reduce the shortage of available organs.
Normally if a transplant recipient unexpectedly dies or when the organ is rejected, the donated kidney is discarded. In 2013 more than 16% of all kidneys recovered from deceased donors were discarded, according to the U.S. Renal Data System.
"I didn't want to see a high-functioning kidney get wasted," said Dr. Jeffrey Veale, a transplant surgeon at Ronald Reagan UCLA Medical Center. Veale has performed three procedures during which a donor's kidney was reused in another patient.
He said as many as a quarter of kidney transplant recipients die with a functioning kidney.
After a kidney is transplanted, scar tissue can form around the organ; that makes reusing it more difficult because the surgeon can't attach it to vital blood vessels.
Veale addressed that problem by removing the second donor's iliac blood vessels that go into the leg and sewing them into Boyce.
"I sewed the first donor's kidney along with the second patient's vessels, and they all kind of work together to help the third person get off dialysis," Veale said.
Arguably the greatest factor in the procedure's success was the health of the kidney, which was in good enough shape for a second transplant despite being inside the first recipient for two years, during which the patient underwent a daily regimen of toxic anti-rejection medications.
Yet Veale was confident the procedure he performed could be duplicated by others more frequently.
"Without even trying I was able to do three in 2017," Veale said. "Could you imagine if we had all 230 transplant centers doing this?"
Others did not sound as optimistic about the procedure's potential. "It is not a common practice, but it's really the amount of time from the first transplant that will dictate whether that kidney can be reused or not," said Dr. Lorenzo Gallon, professor of medicine and surgery and director of the Transplant Nephrology Fellowship program at Northwestern University's Feinberg School of Medicine in Chicago.
In 2012, Gallon was part the Northwestern Medicine transplant team that conducted the first successful removal and implantation of a kidney from one patient to another after the organ failed in the first recipient. The findings of the case were published in the New England Journal of Medicine.
In that case, the kidney came from a living donor and three weeks passed between the first and second transplant.
"For a short period of time, I think there is the possibility of reopening the window (to re-transplant the kidney) when someone dies," Gallon said, adding that scar tissue can begin to form around the newly transplanted kidney within four weeks. "Unfortunately, this is how the body reacts to foreign organs."
Whether or not re-transplantation happens more frequently, the need to meet the rising demand for kidney donors has experts re-thinking the current organ donation framework to increase efficiency and access for waiting patients.
Currently, more than 95,000 people are waiting for a kidney transplant, according to the not-for-profit United Network for Organ Sharing, which administers the country's organ transplantation network.
The average wait time to receive a kidney in the U.S. is three to five years, but the wait can be up to seven years in some parts of the country. An estimated 4,500 people die annually waiting for a transplant, according to the Living Kidney Donors Network.
Gallon said one possible way to address lengthy wait times is for hospitals to create target lists of patients who will benefit from receiving a kidney transplant sooner compared with other patients. The national waiting list system gives first priority to those who've spent the longest time on the list.
Another solution would be using kidneys that in the past would have been discarded because they came from a patient suffering from certain treatable or manageable diseases even if the transplant recipient had the same disease, like HIV or hepatitis C.
"Obviously that doesn't increase the number (of organs) drastically but it increases it a little bit," Gallon said.
It's a problem that is expected to only get worse in the coming years as the country's elderly population increases. The percentage of adults ages 30 or older who will develop chronic kidney disease is projected to increase from 13.2% currently to 16.7% by 2030, according to a 2015 study published in the American Journal of Kidney Diseases.
Other proposals have called for the government to compensate living kidney donors to encourage more people to donate. A 2016 study published in the American Journal of Transplantation estimated a program that had the government compensate kidney donors would save taxpayers an estimated $403,000 a year per kidney dialysis patient for a total savings of about $2.6 billion annually.
Some of the demand for transplant kidneys in recent years has been offset by the opioid epidemic, which has driven an increase in deceased donor organs as a result of the record number of individuals who have died from drug overdose. Organ transplants that came from overdose death rose from 1.1% of all donors in 2000 to 13.4% in 2017.
The crux of the kidney shortage, according to Dr. John Friedewald, medical director of kidney and pancreas transplantation at Northwestern Memorial Hospital in Chicago, lies in being able to successfully harvest donated kidneys and preserve them long enough to be transplanted.
A 2016 study by the United Network for Organ Sharing found the discard rate for deceased-donor kidneys more than tripled from 5.1% in 1988 to 19.2% by 2009, the most recent data available.
"We have been fairly successful in getting people to sign up to be organ donors," said Friedewald. "One of the challenges we have is getting the organs out and keeping them healthy until we can get them into the next person."
Living with PKD
From UK Now (University of Kentucky)
New UK Medical Leave Policy Provides Coverage for Donors
When UK HealthCare employee Kim Powell learned that her brother had polycystic kidney disease and needed a transplant, she didn't hesitate to become a "living donor" and offer her own.
"His kidney disease was inherited," she said. "Any of us siblings could have gotten it -- he was just the one who ended up with it."
She underwent extensive testing, and as it turns out, Powell's kidney was a perfect match for her brother. In March 2011, they went into surgery at UK HealthCare to undergo the kidney swap.
Following a kidney donation, many donors are told to take off work for 4-6 weeks to recover. In Powell's case, she needed the full six weeks before she felt back to her old self.
"At four weeks, I didn't feel like I was ready to go back," she said. "I was very tired for those first six weeks; nauseated. And I was also in some pain just from the surgery."
Having worked at the University of Kentucky for more than two decades prior to undergoing surgery, Powell had accrued enough sick time to cover her long leave. However, she recognizes how fortunate she was to be in that position – without her bank of sick and vacation time, she may not have been able to help her brother.
"I couldn't have taken off any time without pay," she said. "I would have tried anything I could, but I may not have been able to give to him, which is sad."
Now, a new UK medical leave policy will give generous donors like Powell some peace of mind. Beginning April 1st, UK enacted a new leave policy for full-time employees who wish to give others a second chance at life:
Employees who donate bone marrow will receive five days paid medical leave.
Employees who donate a solid organ (kidney, partial liver, or partial lung) will receive 30 days paid medical leave.
At UK HealthCare, the ability to receive organ or tissue donations is crucial to many of the complex medical treatments offered.
“With an academic medical center focused on specialty medicine, including transplants, we recognize the generosity and sacrifice of bone marrow and organ donors," said Kim Wilson, vice president and chief human resources officer at UK. "The University offers this new paid leave to allow employees time to recover and to recognize their generous spirit.”
In Kentucky, more than 1,000 people are on the organ transplant waiting list, and the vast majority of those patients – approximately 800 – are in need of a kidney. Last year, the UK Transplant Center performed 98 kidney transplants, with roughly 28 percent of those transplants coming from a living donor.
While the organ donor registry may be able to provide a suitable kidney from a deceased donor, patients often have to wait for years, surviving through weekly dialysis until a suitable donor becomes available. Receiving a kidney from a living donor both removes patients from the transplant waiting list and increases the chances of a better overall outcome from the surgery.
"The message this sends to our UK community is one of hope – we want donors to be recognized and supported for their selfless gift," said Dr. Thomas Waid, medical director of the Kidney & Pancreas Transplant Program at UK. "This policy does just that. Even more, we want other institutions to take note. We have a real opportunity to impact the lives of Kentuckians and those around the region, and the more people that donate, the more lives we can save.”
At the UK Markey Cancer Center, physicians perform upwards of 110 bone marrow transplants each year. For patients dealing with deadly blood cancers, receiving donated bone marrow may be their only option for survival. Although recovery times vary, a bone marrow donor can expect to take anywhere from 1-7 days until they feel normal.
Be the Match is a national registry that matches anonymous donors with patients in need of a bone marrow transplant. After joining, UK HealthCare employee Donna Wall received two calls from the registry for a possible opportunity to donate, but both fell through. But about five years ago, she was called upon for a third time to donate her marrow to a young child in Europe.
For the extraction, Wall was placed under general anesthesia while a physician used a needle to withdraw the liquid marrow from her pelvic bone. The most common side effects of this procedure include back or hip pain, fatigue, and muscle pain.
Wall notes that she felt sore for several weeks after, similar to a bruise, but says she was ready to go back to work within a few days.
"I donated on a Thursday and took Thursday and Friday off work, but I was back to work Monday," she said. "It really wasn't that bad."
Wall, who has been with UK for 35 years, says she was inspired to join Be the Match after spending time working in both UK's tissue typing/IMP and stem cell processing labs. Like Powell, she was also able to cover her time off, but hopes that the new policy will inspire others to give.
"I think it's awesome!" she said. "Maybe more people who didn't have the time to take off would be more interested in doing it. The chance to help someone is a good thing."
“Implementation of this medical leave policy is a fantastic step in the right direction, as it will help UK donors to fulfill their goal, which is to help and possibly provide the only chance for cure to our patients and to patients around the globe," said Dr. Gerhard Hildebrandt, division chief for Hematology and Blood and Marrow Transplantation. "It will break down barriers, increase access to donors and grow our donor pool. And leading by example, UK hopefully will be followed by many others on this path."
Currently, 37 U.S. states have a statute regarding living donor leave for either state employees or all public or private employees, although Kentucky is not included in that number. With this new policy, UK becomes the largest university -- and one of the largest employers -- in the state to offer this extra benefit.
For Powell, whose brother is alive and well thanks to her gift, the new policy is a "wonderful idea" that she hopes will encourage others to choose living donation to help someone in need.
"I would donate again tomorrow if I could," she said. "It's a life-changing thing for someone else. You're helping someone that really needs it."
"His kidney disease was inherited," she said. "Any of us siblings could have gotten it -- he was just the one who ended up with it."
She underwent extensive testing, and as it turns out, Powell's kidney was a perfect match for her brother. In March 2011, they went into surgery at UK HealthCare to undergo the kidney swap.
Following a kidney donation, many donors are told to take off work for 4-6 weeks to recover. In Powell's case, she needed the full six weeks before she felt back to her old self.
"At four weeks, I didn't feel like I was ready to go back," she said. "I was very tired for those first six weeks; nauseated. And I was also in some pain just from the surgery."
Having worked at the University of Kentucky for more than two decades prior to undergoing surgery, Powell had accrued enough sick time to cover her long leave. However, she recognizes how fortunate she was to be in that position – without her bank of sick and vacation time, she may not have been able to help her brother.
"I couldn't have taken off any time without pay," she said. "I would have tried anything I could, but I may not have been able to give to him, which is sad."
Now, a new UK medical leave policy will give generous donors like Powell some peace of mind. Beginning April 1st, UK enacted a new leave policy for full-time employees who wish to give others a second chance at life:
Employees who donate bone marrow will receive five days paid medical leave.
Employees who donate a solid organ (kidney, partial liver, or partial lung) will receive 30 days paid medical leave.
At UK HealthCare, the ability to receive organ or tissue donations is crucial to many of the complex medical treatments offered.
“With an academic medical center focused on specialty medicine, including transplants, we recognize the generosity and sacrifice of bone marrow and organ donors," said Kim Wilson, vice president and chief human resources officer at UK. "The University offers this new paid leave to allow employees time to recover and to recognize their generous spirit.”
In Kentucky, more than 1,000 people are on the organ transplant waiting list, and the vast majority of those patients – approximately 800 – are in need of a kidney. Last year, the UK Transplant Center performed 98 kidney transplants, with roughly 28 percent of those transplants coming from a living donor.
While the organ donor registry may be able to provide a suitable kidney from a deceased donor, patients often have to wait for years, surviving through weekly dialysis until a suitable donor becomes available. Receiving a kidney from a living donor both removes patients from the transplant waiting list and increases the chances of a better overall outcome from the surgery.
"The message this sends to our UK community is one of hope – we want donors to be recognized and supported for their selfless gift," said Dr. Thomas Waid, medical director of the Kidney & Pancreas Transplant Program at UK. "This policy does just that. Even more, we want other institutions to take note. We have a real opportunity to impact the lives of Kentuckians and those around the region, and the more people that donate, the more lives we can save.”
At the UK Markey Cancer Center, physicians perform upwards of 110 bone marrow transplants each year. For patients dealing with deadly blood cancers, receiving donated bone marrow may be their only option for survival. Although recovery times vary, a bone marrow donor can expect to take anywhere from 1-7 days until they feel normal.
Be the Match is a national registry that matches anonymous donors with patients in need of a bone marrow transplant. After joining, UK HealthCare employee Donna Wall received two calls from the registry for a possible opportunity to donate, but both fell through. But about five years ago, she was called upon for a third time to donate her marrow to a young child in Europe.
For the extraction, Wall was placed under general anesthesia while a physician used a needle to withdraw the liquid marrow from her pelvic bone. The most common side effects of this procedure include back or hip pain, fatigue, and muscle pain.
Wall notes that she felt sore for several weeks after, similar to a bruise, but says she was ready to go back to work within a few days.
"I donated on a Thursday and took Thursday and Friday off work, but I was back to work Monday," she said. "It really wasn't that bad."
Wall, who has been with UK for 35 years, says she was inspired to join Be the Match after spending time working in both UK's tissue typing/IMP and stem cell processing labs. Like Powell, she was also able to cover her time off, but hopes that the new policy will inspire others to give.
"I think it's awesome!" she said. "Maybe more people who didn't have the time to take off would be more interested in doing it. The chance to help someone is a good thing."
“Implementation of this medical leave policy is a fantastic step in the right direction, as it will help UK donors to fulfill their goal, which is to help and possibly provide the only chance for cure to our patients and to patients around the globe," said Dr. Gerhard Hildebrandt, division chief for Hematology and Blood and Marrow Transplantation. "It will break down barriers, increase access to donors and grow our donor pool. And leading by example, UK hopefully will be followed by many others on this path."
Currently, 37 U.S. states have a statute regarding living donor leave for either state employees or all public or private employees, although Kentucky is not included in that number. With this new policy, UK becomes the largest university -- and one of the largest employers -- in the state to offer this extra benefit.
For Powell, whose brother is alive and well thanks to her gift, the new policy is a "wonderful idea" that she hopes will encourage others to choose living donation to help someone in need.
"I would donate again tomorrow if I could," she said. "It's a life-changing thing for someone else. You're helping someone that really needs it."
PKD Foundation
From Nasdaq Global News Wire
XORTX Therapeutics Inc. ("XORTX" or the “Company”) (CSE:XRX) is pleased to announce that the PKD Foundation has recognized XORTX as a leader in advancing the development of treatments for progressive kidney disease, including polycystic kidney disease (“PKD”) and rare diseases such as autosomal dominant polycystic kidney disease (“ADPKD”).
At the present time, despite considerable effort, very few approved therapeutic options exist to treat progressive kidney disease. There is reason for hope, however. Based on recent clinical study evidence, the presence of uric acid above the normal range can act to negatively affect the health and therapeutic outcomes of patients with PKD. The PKD Foundation is supportive of new treatments to lower and maintain uric acid levels in patients. Towards this goal, the PKD Foundation will make available its scientific expertise to support and collaborate with XORTX to discover these new treatments.
Dr. David Baron, Chief Scientific Officer, PKD Foundation stated, “We believe that the combination of the PKD Foundation's and XORTX's scientific expertise may enable an entirely new class of highly active and potentially important treatments for patients for whom current biopharmaceutical approaches have had limited success.”
Dr. Allen Davidoff, XORTX’s CEO added, “We are thrilled to receive this important endorsement of our programs from the PKD Foundation. Their support and collaboration will help advance XORTX’s programs to define the beneficial effects of our therapies, in ADPKD patients but potentially in other forms of polycystic kidney disease as well. There are substantial benefits to working with the leading polycystic kidney disease foundation in the world and collaborating on the development of treatments that will redefine how physicians treat this disease in the future.“
About PKD Foundation
The PKD Foundation began over 35 years ago to find treatments and a cure for polycystic kidney disease (PKD) and to improve the lives of those it affects. The Foundation does this through the promotion of research, education, advocacy, support and awareness on a national level, along with direct services to local communities across the U.S. The PKD Foundation is the largest private funder of PKD research, having invested more than $42 million in basic and clinical research, nephrology fellowships and scientific meetings with a simple goal: to discover and deliver treatments and a cure for PKD.
About XORTX Therapeutics Inc.
XORTX Therapeutics Inc. is a BioPharmaceutical company focused on developing innovative therapies to treat progressive kidney disease. XORTX has lead programs to develop treatments for progressive kidney disease due to diabetes, diabetic nephropathy and polycystic kidney disease. Secondary programs focus on developing therapies for health consequences that accompany pre-diabetes, diabetes and cardiovascular disease. Additional information on XORTX Therapeutics is available at www.xortx.com.
At the present time, despite considerable effort, very few approved therapeutic options exist to treat progressive kidney disease. There is reason for hope, however. Based on recent clinical study evidence, the presence of uric acid above the normal range can act to negatively affect the health and therapeutic outcomes of patients with PKD. The PKD Foundation is supportive of new treatments to lower and maintain uric acid levels in patients. Towards this goal, the PKD Foundation will make available its scientific expertise to support and collaborate with XORTX to discover these new treatments.
Dr. David Baron, Chief Scientific Officer, PKD Foundation stated, “We believe that the combination of the PKD Foundation's and XORTX's scientific expertise may enable an entirely new class of highly active and potentially important treatments for patients for whom current biopharmaceutical approaches have had limited success.”
Dr. Allen Davidoff, XORTX’s CEO added, “We are thrilled to receive this important endorsement of our programs from the PKD Foundation. Their support and collaboration will help advance XORTX’s programs to define the beneficial effects of our therapies, in ADPKD patients but potentially in other forms of polycystic kidney disease as well. There are substantial benefits to working with the leading polycystic kidney disease foundation in the world and collaborating on the development of treatments that will redefine how physicians treat this disease in the future.“
About PKD Foundation
The PKD Foundation began over 35 years ago to find treatments and a cure for polycystic kidney disease (PKD) and to improve the lives of those it affects. The Foundation does this through the promotion of research, education, advocacy, support and awareness on a national level, along with direct services to local communities across the U.S. The PKD Foundation is the largest private funder of PKD research, having invested more than $42 million in basic and clinical research, nephrology fellowships and scientific meetings with a simple goal: to discover and deliver treatments and a cure for PKD.
About XORTX Therapeutics Inc.
XORTX Therapeutics Inc. is a BioPharmaceutical company focused on developing innovative therapies to treat progressive kidney disease. XORTX has lead programs to develop treatments for progressive kidney disease due to diabetes, diabetic nephropathy and polycystic kidney disease. Secondary programs focus on developing therapies for health consequences that accompany pre-diabetes, diabetes and cardiovascular disease. Additional information on XORTX Therapeutics is available at www.xortx.com.
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