BY S UE PONDROM
News and issues that affect organ and tissue transplantation
Multilisting Task Force Patient-centered websites offer information on waitlisting at multiple centers key factor impacting time to transplant is geography. The wait for a kidney or liver can vary substantially between centers. While transplant professionals acknowledge the pitfalls of geographic disparity, do patients understand this when they list at a center with a long wait time? Transplant centers are required by the United Network for Organ Sharing/Organ Procurement and Transplantation Network (UNOS/OPTN) to provide written information for patients about multilisting at two or more centers, and they do. Additionally, the UNOS website explains this option. However, at a time when patients may be overwhelmed with information about transplantation, they might overlook or forget this choice. “I didn’t recall that we got information from UNOS about multilisting,” says Tom Callanan of Utah. His wife, who suffers from polycystic kidney disease, has been on their local center waiting list for two years. 81262371FKLHIPHGLFDORIÀFHU'DYLG.ODVVHQ0'LVQRW surprised. “When patients come for transplant evaluation, there is an awful lot of information they are required to absorb, and multilisting is just one piece,” he says. “Learning about that may not have been something they were expecting.” $FFRUGLQJWR,UHQD%XFFLRI:DVKLQJWRQ'&VHYHUDOKXQGUHG people visit her kidney transplant website focused on multiple listing, www.txmultilisting.com, each month, and she personally talks with many of them. Often, they tell her that they don’t remember KHDULQJDERXWPXOWLOLVWLQJDVDQRSWLRQ´0\H[SHULHQFHVXJJHVWV that wait time estimates are not communicated to patients accurately. Additionally, a referring nephrologist or a dialysis provider may have RXWGDWHGLQIRUPDWLRQRQZDLWWLPHHVWLPDWHVµVKHVD\V´'LUHFWLQJ SDWLHQWVWR81262371ZHEVLWHVLVQRWHQRXJK 6575>6FLHQWLÀF Registry of Transplant Recipients] reports are a year old. As a result, many patients tell me they were misinformed or even discouraged IURPPXOWLOLVWLQJ,QVRPHFDVHVWKHUHDUHÀQDQFLDOLQFHQWLYHVIRUD transplant center to encourage patients to list at their center. When some patients decide to multilist, they may over-list, under-list or list at the wrong centers.”
A
© SHUTTERSTOCK.COM
0DULHO&DUURI&KDUORWWH1&RSHUDWHVDPXOWLOLVWLQJZHEVLWHIRU patients awaiting liver transplants, www.comparetransplantcenters. com. Her husband, Scott, had a model for end-stage liver disease 0(/' VFRUHRIZKHQKHZDVOLVWHGEXWKLVVFRUHÁXFWXDWHG from worse to better and back. Wanting to help him, Carr went on discussion boards and made phone calls, looking for a transplant
KEY POINTS
• Transplant patients may overlook or forget that listing at multiple centers is an option. • Several patients have developed websites that provide information on wait times at numerous centers.
“I didn’t know there were Organ Procurement Organizations [OPOs], sometimes with more than one transplant center sharing the donor organs,” Carr says. “The reality is that you compete not only with people at your transplant hospital, but also those at other centers in the OPO.” That’s when Carr realized that her husband needed a low list, preferably at the only center in an OPO. Additionally, he needed a high-volume center with good success. Based upon all she Í
One Patient’s Experience
consultant to help them navigate their options. Her search was unsuccessful, except for Scott’s hepatologist, who suggested Scott DOVROLVWDWWKH0D\R&OLQLFLQ-DFNVRQYLOOH)OD It took three months to get an appointment. Then, the couple VSHQWGD\VDW0D\RIRUWHVWLQJ$IWHUWKH\UHWXUQHGKRPHDOHWWHU IURP0D\RLQIRUPHG6FRWWWKDWKLV0(/'VFRUHZDVWRRORZIRU listing at their center, which had a long waiting list. “Had I known their list was long and had I known how to look up lists, I might have thought to consider somewhere else,” Carr VD\V6RWKHFRXSOHZHQWWR'XNH8QLYHUVLW\LQ'XUKDP1&DQG WKDWWHDPZDVDEOHWRXWLOL]HWKHUHFHQWWHVWVIURP0D\RDQGKH was placed on their waitlist. Shortly after listing, Scott was called LQIRUDWUDQVSODQW$IWHUKHZDVSUHSSHGDQGUHDG\WRJRWKH'XNH team informed him that a sicker patient at the University of North Carolina in Chapel Hill would get the liver instead.
1131
(Continued from previous page)
New Algorithm From SRTR
had learned, Carr developed her website for patients awaiting liver WUDQVSODQWZKLFKZHQWOLYHLQ-DQXDU\
Another source of information for patients will be a new algoULWKPIURP6575%HUWUDP.DVLVNH0'6575SURMHFWGLUHFWRU says that the organization has designed a waiting list outcomes FDOFXODWRUIRUNLGQH\DQGOLYHUWKDWLVFHQWHUVSHFLÀF,IDSSURYDO is granted from Health Resources and Services Administration, the calculator will be available on the SRTR website this spring for livers, and soon after for kidneys. Bucci and Carr encourage patients to take their future into their own hands by investigating all options for transplantation, including multilisting. Yvonne Lim Wilson, who is helping a family member multilist using information from Bucci’s website, says “more needs to be done on a national level to reduce wait times and better utilize available organs across the country. I think multilisting websites are serving a very important role in providing information and educating patients.”
Website Development Irena Bucci is a patient with kidney disease who decided that she was willing to travel anywhere to receive a transplant. As she looked IRUDFHQWHUVKHIRXQGLWGLIÀFXOWWRGHWHUPLQHZKHUHWKHVKRUWHVW waitlist was based on calculated panel reactive antibody (CPRA) and blood type. “When I was searching for a suitable transplant center, When I visited eight centers and talked to patients PRUHWKDQGLIIHUHQWSHRSOHµVKH come for transplant says. “It gave me a good perspecevaluation, tive of how different centers work.” “The key is to understand there is an awful where to list,” she says. “Unfortulot of information nately, half of the transplant centers they are required to in the U.S. are low volume, making absorb, and multilist- multilisting a necessity for hard-toing is just one piece. match patients.” Learning about that Bucci holds a master’s degree may not have been in mathematics, has 15 years of experience as a software engisomething they neer and for the past seven years were expecting. has developed websites. Based on —David Klassen, MD KHUWUDQVSODQWFHQWHUÀQGLQJVDQG an algorithm she developed that takes into account blood type and CPRA, Bucci developed her site, www.txmultilisting.com, over a WZR\HDUSHULRG/DXQFKHGLQ6HSWHPEHUWKHVLWHSURYLGHVUHDO time wait estimates and a commercial airline timetable. Table 1. Patients multilisted in the U.S. as of February 2015.
ORGAN
NO. WAITLISTED
MULTILISTED
Kidney
94,616
6.8%
Liver
14,781
3.6%
Lung
1,605
2.2%
Kidney–Pancreas
1,965
2.2%
Pancreas
1,097
1%
Heart
3,934
0.6%
247
1.2%
Intestine
Multilisting: Only for the Wealthy? ultilisting has been controversial over the years because people felt it favored patients who are economically able to travel,” says Dr. Klassen. “Not everybody has the ability to do that.” “This is a common misconception,” Bucci says. “Most multilisters, like me, have figured out which center to go to, and they have the health insurance to cover it. They use commercial flights and some drive under 200 miles to a center.” Naturally, health insurance coverage for multilisting will vary depending on a patient’s health plan. One example is the insurance company Aetna. James Coates, MD, Aetna’s senior medical director, says that his company covers multiple listing because it gives the member the best chance of getting an organ. “Coverage and deductibles vary according to the terms of the specific health plan,” he says. “We have an Institutes of Excellence (IOE) program for transplants, for facilities that meet quality and other criteria. Some health plans cover transplants only at IOE facilities, where travel and lodging is usually covered. Other Aetna health plans offer benefits for out-of-network transplants but not travel and lodging.” Carr suggests that patients look at areas in which they have relatives to stay with. She even encourages relocation to another city, if possible. Dr. Klassen says that some of the newer organ allocation policies that have gone into effect may lessen wait time. “With the new kidney allocation system, for example, one of the main features is that it gives much higher priority to people who are immunologically sensitized.” These patients are often among those who multilist because they are difficult to match. Another benefit of the new kidney allocation system is that it allows blood group A2 kidneys to be transplanted into patients in the B blood group, another difficult-to-match group.
M
Source: UNOS/OPTN
Transplant Patients IN THE NEWS • Oliver Crawford of Phoenix, Ariz., is one of the youngest heart transplant recipients in the United States. Born prematurely at 33 weeks gestation in January 2015, Oliver was placed on the transplant list, and received his new heart at 7 days old—still 6 weeks premature—at Phoenix Children’s Hospital. He left the hospital in March a healthy 7.5 pounds. According to UNOS, from October 1987 through November 2014, there have been six heart transplants where the recipient 1132
was reported to be zero days old—a transplant date that is the same as date of birth. UNOS does not keep track of gestation time at transplant. • Longtime friends Fred Nelis, 60, and Gordon Veldman, 67, became “transplant brothers” on June 18, 2014, when they received organs from the same 32-year-old donor. At Spectrum Health Care in Grand Rapids, Mich., Nelis received a heart, while Veldman received new lungs. “Every time we get together, we put
the heart and lungs together as close as we can,” Veldman says. “Just for a moment. So they can be close.” • Ashley McIntyre donated a kidney to a total stranger, Danny Robinson, in January 2014. The two were a perfect biological match, and, as it turned out, a romantic one as well. On Christmas Day in 2014, Danny proposed to Ashley. They married shortly thereafter, and their family will soon include a daughter, due in June.
American Journal of Transplantation 2015; 15: 1131–1132
Copyright of American Journal of Transplantation is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
News and issues that affect organ and tissue transplantation
Multilisting Task Force Patient-centered websites offer information on waitlisting at multiple centers key factor impacting time to transplant is geography. The wait for a kidney or liver can vary substantially between centers. While transplant professionals acknowledge the pitfalls of geographic disparity, do patients understand this when they list at a center with a long wait time? Transplant centers are required by the United Network for Organ Sharing/Organ Procurement and Transplantation Network (UNOS/OPTN) to provide written information for patients about multilisting at two or more centers, and they do. Additionally, the UNOS website explains this option. However, at a time when patients may be overwhelmed with information about transplantation, they might overlook or forget this choice. “I didn’t recall that we got information from UNOS about multilisting,” says Tom Callanan of Utah. His wife, who suffers from polycystic kidney disease, has been on their local center waiting list for two years. 81262371FKLHIPHGLFDORIÀFHU'DYLG.ODVVHQ0'LVQRW surprised. “When patients come for transplant evaluation, there is an awful lot of information they are required to absorb, and multilisting is just one piece,” he says. “Learning about that may not have been something they were expecting.” $FFRUGLQJWR,UHQD%XFFLRI:DVKLQJWRQ'&VHYHUDOKXQGUHG people visit her kidney transplant website focused on multiple listing, www.txmultilisting.com, each month, and she personally talks with many of them. Often, they tell her that they don’t remember KHDULQJDERXWPXOWLOLVWLQJDVDQRSWLRQ´0\H[SHULHQFHVXJJHVWV that wait time estimates are not communicated to patients accurately. Additionally, a referring nephrologist or a dialysis provider may have RXWGDWHGLQIRUPDWLRQRQZDLWWLPHHVWLPDWHVµVKHVD\V´'LUHFWLQJ SDWLHQWVWR81262371ZHEVLWHVLVQRWHQRXJK 6575>6FLHQWLÀF Registry of Transplant Recipients] reports are a year old. As a result, many patients tell me they were misinformed or even discouraged IURPPXOWLOLVWLQJ,QVRPHFDVHVWKHUHDUHÀQDQFLDOLQFHQWLYHVIRUD transplant center to encourage patients to list at their center. When some patients decide to multilist, they may over-list, under-list or list at the wrong centers.”
A
© SHUTTERSTOCK.COM
0DULHO&DUURI&KDUORWWH1&RSHUDWHVDPXOWLOLVWLQJZHEVLWHIRU patients awaiting liver transplants, www.comparetransplantcenters. com. Her husband, Scott, had a model for end-stage liver disease 0(/' VFRUHRIZKHQKHZDVOLVWHGEXWKLVVFRUHÁXFWXDWHG from worse to better and back. Wanting to help him, Carr went on discussion boards and made phone calls, looking for a transplant
KEY POINTS
• Transplant patients may overlook or forget that listing at multiple centers is an option. • Several patients have developed websites that provide information on wait times at numerous centers.
“I didn’t know there were Organ Procurement Organizations [OPOs], sometimes with more than one transplant center sharing the donor organs,” Carr says. “The reality is that you compete not only with people at your transplant hospital, but also those at other centers in the OPO.” That’s when Carr realized that her husband needed a low list, preferably at the only center in an OPO. Additionally, he needed a high-volume center with good success. Based upon all she Í
One Patient’s Experience
consultant to help them navigate their options. Her search was unsuccessful, except for Scott’s hepatologist, who suggested Scott DOVROLVWDWWKH0D\R&OLQLFLQ-DFNVRQYLOOH)OD It took three months to get an appointment. Then, the couple VSHQWGD\VDW0D\RIRUWHVWLQJ$IWHUWKH\UHWXUQHGKRPHDOHWWHU IURP0D\RLQIRUPHG6FRWWWKDWKLV0(/'VFRUHZDVWRRORZIRU listing at their center, which had a long waiting list. “Had I known their list was long and had I known how to look up lists, I might have thought to consider somewhere else,” Carr VD\V6RWKHFRXSOHZHQWWR'XNH8QLYHUVLW\LQ'XUKDP1&DQG WKDWWHDPZDVDEOHWRXWLOL]HWKHUHFHQWWHVWVIURP0D\RDQGKH was placed on their waitlist. Shortly after listing, Scott was called LQIRUDWUDQVSODQW$IWHUKHZDVSUHSSHGDQGUHDG\WRJRWKH'XNH team informed him that a sicker patient at the University of North Carolina in Chapel Hill would get the liver instead.
1131
(Continued from previous page)
New Algorithm From SRTR
had learned, Carr developed her website for patients awaiting liver WUDQVSODQWZKLFKZHQWOLYHLQ-DQXDU\
Another source of information for patients will be a new algoULWKPIURP6575%HUWUDP.DVLVNH0'6575SURMHFWGLUHFWRU says that the organization has designed a waiting list outcomes FDOFXODWRUIRUNLGQH\DQGOLYHUWKDWLVFHQWHUVSHFLÀF,IDSSURYDO is granted from Health Resources and Services Administration, the calculator will be available on the SRTR website this spring for livers, and soon after for kidneys. Bucci and Carr encourage patients to take their future into their own hands by investigating all options for transplantation, including multilisting. Yvonne Lim Wilson, who is helping a family member multilist using information from Bucci’s website, says “more needs to be done on a national level to reduce wait times and better utilize available organs across the country. I think multilisting websites are serving a very important role in providing information and educating patients.”
Website Development Irena Bucci is a patient with kidney disease who decided that she was willing to travel anywhere to receive a transplant. As she looked IRUDFHQWHUVKHIRXQGLWGLIÀFXOWWRGHWHUPLQHZKHUHWKHVKRUWHVW waitlist was based on calculated panel reactive antibody (CPRA) and blood type. “When I was searching for a suitable transplant center, When I visited eight centers and talked to patients PRUHWKDQGLIIHUHQWSHRSOHµVKH come for transplant says. “It gave me a good perspecevaluation, tive of how different centers work.” “The key is to understand there is an awful where to list,” she says. “Unfortulot of information nately, half of the transplant centers they are required to in the U.S. are low volume, making absorb, and multilist- multilisting a necessity for hard-toing is just one piece. match patients.” Learning about that Bucci holds a master’s degree may not have been in mathematics, has 15 years of experience as a software engisomething they neer and for the past seven years were expecting. has developed websites. Based on —David Klassen, MD KHUWUDQVSODQWFHQWHUÀQGLQJVDQG an algorithm she developed that takes into account blood type and CPRA, Bucci developed her site, www.txmultilisting.com, over a WZR\HDUSHULRG/DXQFKHGLQ6HSWHPEHUWKHVLWHSURYLGHVUHDO time wait estimates and a commercial airline timetable. Table 1. Patients multilisted in the U.S. as of February 2015.
ORGAN
NO. WAITLISTED
MULTILISTED
Kidney
94,616
6.8%
Liver
14,781
3.6%
Lung
1,605
2.2%
Kidney–Pancreas
1,965
2.2%
Pancreas
1,097
1%
Heart
3,934
0.6%
247
1.2%
Intestine
Multilisting: Only for the Wealthy? ultilisting has been controversial over the years because people felt it favored patients who are economically able to travel,” says Dr. Klassen. “Not everybody has the ability to do that.” “This is a common misconception,” Bucci says. “Most multilisters, like me, have figured out which center to go to, and they have the health insurance to cover it. They use commercial flights and some drive under 200 miles to a center.” Naturally, health insurance coverage for multilisting will vary depending on a patient’s health plan. One example is the insurance company Aetna. James Coates, MD, Aetna’s senior medical director, says that his company covers multiple listing because it gives the member the best chance of getting an organ. “Coverage and deductibles vary according to the terms of the specific health plan,” he says. “We have an Institutes of Excellence (IOE) program for transplants, for facilities that meet quality and other criteria. Some health plans cover transplants only at IOE facilities, where travel and lodging is usually covered. Other Aetna health plans offer benefits for out-of-network transplants but not travel and lodging.” Carr suggests that patients look at areas in which they have relatives to stay with. She even encourages relocation to another city, if possible. Dr. Klassen says that some of the newer organ allocation policies that have gone into effect may lessen wait time. “With the new kidney allocation system, for example, one of the main features is that it gives much higher priority to people who are immunologically sensitized.” These patients are often among those who multilist because they are difficult to match. Another benefit of the new kidney allocation system is that it allows blood group A2 kidneys to be transplanted into patients in the B blood group, another difficult-to-match group.
M
Source: UNOS/OPTN
Transplant Patients IN THE NEWS • Oliver Crawford of Phoenix, Ariz., is one of the youngest heart transplant recipients in the United States. Born prematurely at 33 weeks gestation in January 2015, Oliver was placed on the transplant list, and received his new heart at 7 days old—still 6 weeks premature—at Phoenix Children’s Hospital. He left the hospital in March a healthy 7.5 pounds. According to UNOS, from October 1987 through November 2014, there have been six heart transplants where the recipient 1132
was reported to be zero days old—a transplant date that is the same as date of birth. UNOS does not keep track of gestation time at transplant. • Longtime friends Fred Nelis, 60, and Gordon Veldman, 67, became “transplant brothers” on June 18, 2014, when they received organs from the same 32-year-old donor. At Spectrum Health Care in Grand Rapids, Mich., Nelis received a heart, while Veldman received new lungs. “Every time we get together, we put
the heart and lungs together as close as we can,” Veldman says. “Just for a moment. So they can be close.” • Ashley McIntyre donated a kidney to a total stranger, Danny Robinson, in January 2014. The two were a perfect biological match, and, as it turned out, a romantic one as well. On Christmas Day in 2014, Danny proposed to Ashley. They married shortly thereafter, and their family will soon include a daughter, due in June.
American Journal of Transplantation 2015; 15: 1131–1132
Copyright of American Journal of Transplantation is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
