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Reaching out to Asia for living kidney donors
MISCELLANEOUS
Reaching Out to Asia for Living Kidney Donors A.R. Ready and N. Jain
M
ANY metropolitan areas of the United Kingdom now have large communities originating from the IndoAsian Subcontinent (ISC). These communities generate a disproportionately high demand for renal replacement services, including renal transplantation, due to an increased risk for the development of end-stage renal failure (ESRF). This may be up to four times greater than that encountered in the indigenous Caucasian population. In the Birmingham region, Indo-Asians constitute 14% of the general population but 25% of the renal transplant waiting list. This demand for renal transplantation cannot be met, principally because of biological differences occurring between IndoAsians and the almost exclusively Caucasian donor population. In particular, differing distributions of the ABO blood groups (e.g. blood group B, 44% in Indo-Asians; 8% in the Caucasian donor population) and HLA tissue types severely limit the number of cadaveric grafts suitable for Indo-Asian recipients. These differences suggest that the most suitable kidneys for Indo-Asian come from IndoAsian donors. However, in the UK less than 1% of cadaveric donors come from the Indo-Asian community. The resulting scarcity of cadaveric kidneys available to this group leads to a low rate of transplantation, which has a profound impact on our Asian waiting list patients who are forced to endure the reduced quality of life associated with indefinite dialysis which also presents an immense financial burden when compared with transplantation.
educated in transplant matters, we have appointed the UK’s first Asian Transplant Coordinator whose brief has been to address educational and support issues with individual Indo-Asian waiting list patients within the context of their own language and culture. As a result, all 119 Indo-Asian waiting list patients, and others not yet listed with their families have now been counseled, usually during home visits, with particular emphasis given to the benefits of LDTx. Such discussions, which commenced in 1997, have significantly increased the number of Indo-Asian families willing to consider live kidney donation and has already resulted in five patients receiving successful renal transplants where previously there had been none. LIVING DONOR TRANSPLANTATION FROM RELATIVES OVERSEAS
Discussions with patients and their families have also identified overseas relatives, especially in the ISC, as a potential source of willing live donors. Although our endeavors in this area remain at an early stage, the response to date highlights the potential number of patients who could benefit from LDTx from overseas relatives. Our first overseas live donation occurred in July 1998 and currently there are 12 potential donors in the advanced stages of investigation, either in their home country or the UK. In all cases the potential recipient has been on the waiting list for a long period and is judged unlikely to receive a cadaveric
ADDRESSING THE CRISIS THROUGH LIVE DONATION
Due to the failure of cadaveric donation to supply the Indo-Asian population we have increasingly advocated living donor transplantation (LDTx) as a possible solution. To facilitate this complex process in a community often poorly
From the University Hospital NHS Trust, Birmingham, United Kingdom. Address reprint requests to Dr A. Ready, Queen Elizabeth Hospital, Renal/Urol Directorate, University Hospital, NGS Trust, Birmingham, UK 8152.
© 2000 by Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010
0041-1345/00/$–see front matter PII S0041-1345(00)01777-2
Transplantation Proceedings, 32, 2529–2530 (2000)
2529
2530
graft. Although the process of overseas live donation is complex and time consuming, we consider it worthwhile for these patients and have therefore addressed some of the complex issues involved in successfully investigating a potential donor from a geographically distant location. The principal considerations are as follows. Logistics
The process of overseas donor work-up is ideally coordinated by a single individual who communicates with the overseas donor and their physician. Baseline investigations and the dispatch of donor blood for tissue typing and cross-match in UK laboratories may then be performed in a controlled and sequential fashion. The results of all preliminary overseas investigations are reviewed by one of our unit’s nephrologists to ensure all appears suitable for a donation before the donor’s departure for the UK. A letter supporting a 6-month visa application is also provided by our unit. Legal
Discussions, led by the Asian coordinator, must confirm that the donation is a purely voluntary and altruistic act. Irrespective of the stated relationship between donor and recipient, if this does not appear conclusive on tissue typing, referral to (Unrelated Live Transplant Regulating Authority (ULTRA)) is required as when a direct relationship is known not to exist. ULTRA is a UK government appointed body that makes decisions on the acceptability of transplants between individuals who are not immediate relatives and ensures that organ trading is not occurring. Under such circumstances no live donation can occur in the UK without ULTRA approval. Furthermore, overseas donors do not have a legal right to stay in the UK beyond the immediate follow-up period and must return to their home country. Collaboration with physicians in the donor’s country of residence is therefore vital to ensure adequate donor follow-up. Ethical
It is essential to establish a rapport with donors on their arrival in the UK; they may feel vulnerable in their new environment. Opportunities must also be made for full discussions with the prospective donor, in their own language and in the absence of the recipient and their family, to explore their feelings about donation and to ensure that coercion and reward are not occurring. All work-up investigations are also repeated and our protocol donor work-up investigations commenced to confirm suitability and minimize donor risks. An ethical duty also exists to ensure the long-term well-being of donors. This requires coordination with overseas colleagues who we ask to provide adequate follow-up of donors on their return home.
READY AND JAIN
Educational
Overseas donors are given open access to educational material, both in written and audio cassette form, in English, Punjabi, Hindi, and Urdu. Ideally, we request that units in Asia augment the educational needs of potential donors prior to their departure for the UK. Counseling
Counseling must be an on-going process commencing before arrival in the UK and continuing through the peri- and postoperative periods. When donation occasionally proves impossible, additional counseling may be required to support disappointed donors. Funding
It has been necessary to identify suitable funding to permit donation to occur from overseas nationals who are not usually entitled to free treatment in the UK. However, a successful renal transplant from an overseas national has a positive economic impact in that it releases a UK national from expensive state-funded dialysis. Accordingly, funding for our overseas donor program has been successfully negotiated with the UK Department of Health. This covers the work-up, operative period, and follow-up as well as the treatment of any complications. However, air fare, board and lodging, and reimbursement for loss of earnings are not paid. Follow Up
Following donation, overseas donors are informed of the need for follow up. Prior to their return home they are provided with a letter for the attention of their local physician detailing their treatment and progress. Annual follow up, including blood pressure and serum creatinine, is suggested, and ideally our unit would wish to receive copies of such data. CONCLUSION
The overseas live donor program is an attractive and viable option for our Asian recipients. However, to ensure that it is also clinically and ethically safe for overseas donors, predonation collaboration with Asian units is essential. Furthermore, for donor follow up, the provision of on-going psychological support and the return of data for audit purposes, we are highly reliant on the long term collaboration and good will of our overseas colleagues. To date such collaboration has always been provided willingly and has been much appreciated. REFERENCE 1. Ready A: Dial Nephrol Transplant 13:2490, 1998
Reaching Out to Asia for Living Kidney Donors A.R. Ready and N. Jain
M
ANY metropolitan areas of the United Kingdom now have large communities originating from the IndoAsian Subcontinent (ISC). These communities generate a disproportionately high demand for renal replacement services, including renal transplantation, due to an increased risk for the development of end-stage renal failure (ESRF). This may be up to four times greater than that encountered in the indigenous Caucasian population. In the Birmingham region, Indo-Asians constitute 14% of the general population but 25% of the renal transplant waiting list. This demand for renal transplantation cannot be met, principally because of biological differences occurring between IndoAsians and the almost exclusively Caucasian donor population. In particular, differing distributions of the ABO blood groups (e.g. blood group B, 44% in Indo-Asians; 8% in the Caucasian donor population) and HLA tissue types severely limit the number of cadaveric grafts suitable for Indo-Asian recipients. These differences suggest that the most suitable kidneys for Indo-Asian come from IndoAsian donors. However, in the UK less than 1% of cadaveric donors come from the Indo-Asian community. The resulting scarcity of cadaveric kidneys available to this group leads to a low rate of transplantation, which has a profound impact on our Asian waiting list patients who are forced to endure the reduced quality of life associated with indefinite dialysis which also presents an immense financial burden when compared with transplantation.
educated in transplant matters, we have appointed the UK’s first Asian Transplant Coordinator whose brief has been to address educational and support issues with individual Indo-Asian waiting list patients within the context of their own language and culture. As a result, all 119 Indo-Asian waiting list patients, and others not yet listed with their families have now been counseled, usually during home visits, with particular emphasis given to the benefits of LDTx. Such discussions, which commenced in 1997, have significantly increased the number of Indo-Asian families willing to consider live kidney donation and has already resulted in five patients receiving successful renal transplants where previously there had been none. LIVING DONOR TRANSPLANTATION FROM RELATIVES OVERSEAS
Discussions with patients and their families have also identified overseas relatives, especially in the ISC, as a potential source of willing live donors. Although our endeavors in this area remain at an early stage, the response to date highlights the potential number of patients who could benefit from LDTx from overseas relatives. Our first overseas live donation occurred in July 1998 and currently there are 12 potential donors in the advanced stages of investigation, either in their home country or the UK. In all cases the potential recipient has been on the waiting list for a long period and is judged unlikely to receive a cadaveric
ADDRESSING THE CRISIS THROUGH LIVE DONATION
Due to the failure of cadaveric donation to supply the Indo-Asian population we have increasingly advocated living donor transplantation (LDTx) as a possible solution. To facilitate this complex process in a community often poorly
From the University Hospital NHS Trust, Birmingham, United Kingdom. Address reprint requests to Dr A. Ready, Queen Elizabeth Hospital, Renal/Urol Directorate, University Hospital, NGS Trust, Birmingham, UK 8152.
© 2000 by Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010
0041-1345/00/$–see front matter PII S0041-1345(00)01777-2
Transplantation Proceedings, 32, 2529–2530 (2000)
2529
2530
graft. Although the process of overseas live donation is complex and time consuming, we consider it worthwhile for these patients and have therefore addressed some of the complex issues involved in successfully investigating a potential donor from a geographically distant location. The principal considerations are as follows. Logistics
The process of overseas donor work-up is ideally coordinated by a single individual who communicates with the overseas donor and their physician. Baseline investigations and the dispatch of donor blood for tissue typing and cross-match in UK laboratories may then be performed in a controlled and sequential fashion. The results of all preliminary overseas investigations are reviewed by one of our unit’s nephrologists to ensure all appears suitable for a donation before the donor’s departure for the UK. A letter supporting a 6-month visa application is also provided by our unit. Legal
Discussions, led by the Asian coordinator, must confirm that the donation is a purely voluntary and altruistic act. Irrespective of the stated relationship between donor and recipient, if this does not appear conclusive on tissue typing, referral to (Unrelated Live Transplant Regulating Authority (ULTRA)) is required as when a direct relationship is known not to exist. ULTRA is a UK government appointed body that makes decisions on the acceptability of transplants between individuals who are not immediate relatives and ensures that organ trading is not occurring. Under such circumstances no live donation can occur in the UK without ULTRA approval. Furthermore, overseas donors do not have a legal right to stay in the UK beyond the immediate follow-up period and must return to their home country. Collaboration with physicians in the donor’s country of residence is therefore vital to ensure adequate donor follow-up. Ethical
It is essential to establish a rapport with donors on their arrival in the UK; they may feel vulnerable in their new environment. Opportunities must also be made for full discussions with the prospective donor, in their own language and in the absence of the recipient and their family, to explore their feelings about donation and to ensure that coercion and reward are not occurring. All work-up investigations are also repeated and our protocol donor work-up investigations commenced to confirm suitability and minimize donor risks. An ethical duty also exists to ensure the long-term well-being of donors. This requires coordination with overseas colleagues who we ask to provide adequate follow-up of donors on their return home.
READY AND JAIN
Educational
Overseas donors are given open access to educational material, both in written and audio cassette form, in English, Punjabi, Hindi, and Urdu. Ideally, we request that units in Asia augment the educational needs of potential donors prior to their departure for the UK. Counseling
Counseling must be an on-going process commencing before arrival in the UK and continuing through the peri- and postoperative periods. When donation occasionally proves impossible, additional counseling may be required to support disappointed donors. Funding
It has been necessary to identify suitable funding to permit donation to occur from overseas nationals who are not usually entitled to free treatment in the UK. However, a successful renal transplant from an overseas national has a positive economic impact in that it releases a UK national from expensive state-funded dialysis. Accordingly, funding for our overseas donor program has been successfully negotiated with the UK Department of Health. This covers the work-up, operative period, and follow-up as well as the treatment of any complications. However, air fare, board and lodging, and reimbursement for loss of earnings are not paid. Follow Up
Following donation, overseas donors are informed of the need for follow up. Prior to their return home they are provided with a letter for the attention of their local physician detailing their treatment and progress. Annual follow up, including blood pressure and serum creatinine, is suggested, and ideally our unit would wish to receive copies of such data. CONCLUSION
The overseas live donor program is an attractive and viable option for our Asian recipients. However, to ensure that it is also clinically and ethically safe for overseas donors, predonation collaboration with Asian units is essential. Furthermore, for donor follow up, the provision of on-going psychological support and the return of data for audit purposes, we are highly reliant on the long term collaboration and good will of our overseas colleagues. To date such collaboration has always been provided willingly and has been much appreciated. REFERENCE 1. Ready A: Dial Nephrol Transplant 13:2490, 1998