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The organ shortage: what organ sharing organizations doing about it?
ELSEVIER
The Organ Shortage: What Are Organ Sharing Organizations Doing About It? M.C. Bacqu6 and R. Cambariere
T
HE shortage of organ donors has, for a long time, been the main obstacle to the widespread practice of organ transplants on patients in need of an organ. Fortunately, there are some organizations, such as the Spanish one, that have obtained a notable and constant rate of organ donation. However, there are countries where the gap between the number of available organs and patients on the waiting list is still wide. This is an excellent opportunity for us to exchange ideas and develop solutions to problems common to organ procurement. The Argentine situation in the matter of donation and transplantation is the result of a conjunction of different factors that depend on the present sanitary administration, the solidarity of the people in our society, and the efforts of healthcare workers. Nevertheless, it is important to point out that one of the basic characteristics of the growth in transplantations and procurement in our country has been, from the very beginning, the presence of a law that has insured transparency and sanitary safety in the development of this discipline. Argentina has been a pioneer in the field of organ and tissue transplantation. The first cornea transplant was performed in 1928, and the first massive bone transplant in 1948. In 1951, the first National Bank of Cornea and Blood Vessels was created. In 1957, in the University of Buenos
KIDNEYS
LIVERS
HEARTS
LUNGS
YEARS Fig 1. Number and annual rate of organ donors per million population in Argentina, 1978-l 997. *Data for 1997 are estimated.
Aires School of Medicine Hospital, the first kidney transplant was carried out, and in 1968, the first heart transplant. Since the 198Os, solid organ transplant programs have been consolidated: heart (1980), liver (1988), and more recently lung (1992) and pancreas (1993). From the INCUCAI: lnstituto National Central Unico Coordinador de Ablack% e Implante. Address reprint requests to Maria del Carmen Bacqub, MD, Director’s Desk, Ramsay 2250, (1009), Capital Federal, Argentina.
PANCREAS
ORGAffS 0 1997 by Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010
Transplantation Proceedings, 29, 32113214
(1997)
Fig 2.
Retrieved organs, 1993-l 996.
0041-l 345l97l$l7.00 PII SOO41-1345(97)00874-9
3211
BACQUi
3212
AND CAMBARIERE
100 90 a0 70 60 50 40
1996
1997 Y,,R
Fig 3.
Operational
model.
Fig 5. Percentage are estimated.
From the very beginning, health authorities have shown an interest in the legal aspects of this activity. A law passed in 1957 created the first Tissue Bank and contemplated donation after death. The organ transplant law was passed in 1977 and at that moment, the National Organ Procurement Organism, within the sphere of the Ministry of Health, came into being. This law fostered organ donation, but had a clearly centralist nature. During the years that followed, this law was modified; the gradual increase in organ transplant was not, however, accompanied by an equal development in procurement. It was not until 1993, with the present law in force that the Argentine Organism of Procurement and Transplant (INCUCAI) begins to function as a national decentralized organism with federal category.
ORGAN
DONOR
of age groups of organ donors.
REGION
PAMPA
~-~ Donation
rl U
Fig 4.
P.A. = Procurement
Organ
(pmp)
RegIOnal OrgaIl Transplantatlqn
Activity
*Jan - Jun 1997
T.A. = Transplant Activity (pmp)
Global and regional organ donation
1997 data
A retrospective analysis of the procurement activity allows us to distinguish basically three periods: the first, from 1978 to 1987, had a centralist procurement model; the principal activity was kidney transplant, carried out almost exclusively within the boundaries of the Capital City. The second, from 1988 to 1993, continued the expansion of the transplant activity. New solid organ transplants were being carried out (heart and liver), but organ procurement was still below the demand for organs. This happened in spite of the fact that organ procurement organisms had begun to appear in the Provinces. The third period, from 1993 to the present, shows a
CAPITAL
&~Qbd
data)
EVOLUTION
r-----
l1TYPE
(estimaled
and organ transplantation
per million population
in 1996.
3213
ORGAN SHARING ORGANIZATIONS
50%
I ??multiorgan
40%
D Trauma CE
30% 20% 10% 0%
Fig 6.
(estimated
Causes of brain death among organ donors, 1995-l 996.
Fig 7.
significant and sustained increase in organ procurement: from 10.76 per million population (pmp) in 1993 to 21.2 pmp in 1995. This tendency was not maintained in 1996, the index of which was 19.9 pmp (Figs 1 and 2). Different factors have contributed to the improvement of the procurement activity since 1993; the most important has been the attitude of health authorities as well as health professionals who have become conscious of the fact that “Donation and transplantation constitute a whole, and each part cannot exist without the other,” as expressed in the 1st International Transplant Congress held in Barcelona in 1996. OPERATIONAL
MODEL
Interest on the part of health authorities has led to the appearance of the National Program of Organ Procurement and Transplant within the orbit of the National Health System. As a consequence of this, the present operational model consists of a National Organism with a representative board whose functions are to regulate and give support to each of the eight Regional Organisms, that, in turn,
data)
Percentage of multiorgan retrievals from organ donors.
operate as head of the Provincial ones (Fig 3). This three-level pattern of organization allows a direct interrelation between the National Organism and the Provincial ones, retaining, for the former, its responsibility as regards the development, continuity, and professional training of Provincial Organisms, and insuring, for the latter, provincial autonomy as regards the control and supervision of centers and professionals. The creation of Provincial Organisms has helped to expand procurement activity all over the country. Yet, existing provincial differences at the sanitary level show, as a consequence, differences in the growth of the procurement and transplant activity. Bearing in mind the relation between procurement and transplant indices, we can group the eight regions into three categories. (Fig 4). Obviously, the Regions that have the best sanitary development are the ones that show the highest level of transplant activity. Organ procurement is still below the transplant level. The Capital City, on the one hand, centralizes the major transplant activity. The Pampa Region, on the
Religious Causes
4.5%
Mistrust of institutions and I or fear of organ traffloking 2% Family Opposltion
4%
Previous donor negative
19%
Others (estimated data)
12.5%
Fig 8. Evolution of the family refusal rate for organ donation, 1995-l 997. 1997 data are estimated.
BACQUk AND CAMBARIERE
3214
Table 1. Evolution of Organ Donation and Transplantation Activities in Argentina, 1993-1997 Years Organs
1993
1994
1995
1996
1997’
Cadaver donors
347 10.7 270 a.4
487 14.9 356 11.1
695 21.2 417 13
659 19.9 381 11.9
614 18.6 264 a.1
35 1.1 34 1.1 1
43 1.3 67 2 2
a5 2.6 86 2.7 5
109 3.4 65 2 3
2 2 -
2 1 -
0.2 13 0.3 3 -
0.1 11 0.2 4 -
110 3.4 60 2 -
Kidney Liver Heart Heart-lung Lung Pancreas
2 -
*Number and rates per million population (32.6 million inhabitants). +I997 estimated figures from exact data up to June.
other hand, reveals a marked difference between procurement and transplant indices, procurement rates being higher than those of transplant, even though, lately, there has been a tendency to shorten this difference. It is interesting to point out that not only sanitary factors have influenced the level of development of this activity but also technical and operational ones. The Regions where the “Hospital Coordinator Model” has been introduced, have higher procurement indices. An intense interchange of organs and patients between the different Regions is the direct consequence of this disparate development, on the basis of the present distribution system (the only national list). This type of interchange generates a prolongation of the cold ischemia time and adds an additional cost to procurement expenses. TECHNICAL
AND OPERATIONAL FACTORS
As regards potential
solid organ donors, one can see that the age range has discreetly increased among pediatric donors: 20% of donors who are beyond sixty years of age have been maintained (Fig 5). The most common causes of death in potential donors are trauma and cerebrovascular accident (Fig 6). There are two aspects we still need to improve upon: one is the low percentage of multiorganic retrieval (30%) (Fig 7); the other, family refusal rates which come to 66%. As regards the latter, the most frequent motive has been lack of accurate information about brain death and corpse integrity (54%); religious causes have only reached 4.5%, and mistrust of institutions and fear of organ trafficking, 2% (Fig 8).
TRANSPLANTATION FIGURES
Table 1 shows the evolution of the overall solid organ transplantation activity in recent years. The liver transplant rates discreetly increased in 1996; this rate was maintained during the first half of 1997. Kidney and heart transplant rates discreetly decreased in relation to organ procurement indexes. The waiting list mortality rate during 1996 was 15% for liver patients, and 11% for heart patients.
STRATEGIES FOR IMPROVING CADAVERIC ORGAN DONATION
In summary, we can say that to revert the tendency of the last period; we have the following aims in mind: (1) to promote a greater decentralization of the present model so as to ensure a greater development of the procurement activity in the regions with low rates (types 1 and 2B) and to foster the creation of transplant centers in the ones with low rates in this respect (type 3); (2) to insist on the proper balance between procurement and transplant in the eight regions so as to be able to diminish the interchange of organs with the subsequent reduction of the cold ischemia times; (3) until this harmonic development is reached, to maintain the present distribution system of only one national list so as to ensure equal possibilities to patients on the waiting list; (4) to increase the number of multiorganic retrievals SO as to have more organs at our disposal; and (5) to hold informative and educational campaigns to fight family refusal so as to obtain more organ donations. This is our project, and we mean to devote time and energy to its accomplishment.
The Organ Shortage: What Are Organ Sharing Organizations Doing About It? M.C. Bacqu6 and R. Cambariere
T
HE shortage of organ donors has, for a long time, been the main obstacle to the widespread practice of organ transplants on patients in need of an organ. Fortunately, there are some organizations, such as the Spanish one, that have obtained a notable and constant rate of organ donation. However, there are countries where the gap between the number of available organs and patients on the waiting list is still wide. This is an excellent opportunity for us to exchange ideas and develop solutions to problems common to organ procurement. The Argentine situation in the matter of donation and transplantation is the result of a conjunction of different factors that depend on the present sanitary administration, the solidarity of the people in our society, and the efforts of healthcare workers. Nevertheless, it is important to point out that one of the basic characteristics of the growth in transplantations and procurement in our country has been, from the very beginning, the presence of a law that has insured transparency and sanitary safety in the development of this discipline. Argentina has been a pioneer in the field of organ and tissue transplantation. The first cornea transplant was performed in 1928, and the first massive bone transplant in 1948. In 1951, the first National Bank of Cornea and Blood Vessels was created. In 1957, in the University of Buenos
KIDNEYS
LIVERS
HEARTS
LUNGS
YEARS Fig 1. Number and annual rate of organ donors per million population in Argentina, 1978-l 997. *Data for 1997 are estimated.
Aires School of Medicine Hospital, the first kidney transplant was carried out, and in 1968, the first heart transplant. Since the 198Os, solid organ transplant programs have been consolidated: heart (1980), liver (1988), and more recently lung (1992) and pancreas (1993). From the INCUCAI: lnstituto National Central Unico Coordinador de Ablack% e Implante. Address reprint requests to Maria del Carmen Bacqub, MD, Director’s Desk, Ramsay 2250, (1009), Capital Federal, Argentina.
PANCREAS
ORGAffS 0 1997 by Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010
Transplantation Proceedings, 29, 32113214
(1997)
Fig 2.
Retrieved organs, 1993-l 996.
0041-l 345l97l$l7.00 PII SOO41-1345(97)00874-9
3211
BACQUi
3212
AND CAMBARIERE
100 90 a0 70 60 50 40
1996
1997 Y,,R
Fig 3.
Operational
model.
Fig 5. Percentage are estimated.
From the very beginning, health authorities have shown an interest in the legal aspects of this activity. A law passed in 1957 created the first Tissue Bank and contemplated donation after death. The organ transplant law was passed in 1977 and at that moment, the National Organ Procurement Organism, within the sphere of the Ministry of Health, came into being. This law fostered organ donation, but had a clearly centralist nature. During the years that followed, this law was modified; the gradual increase in organ transplant was not, however, accompanied by an equal development in procurement. It was not until 1993, with the present law in force that the Argentine Organism of Procurement and Transplant (INCUCAI) begins to function as a national decentralized organism with federal category.
ORGAN
DONOR
of age groups of organ donors.
REGION
PAMPA
~-~ Donation
rl U
Fig 4.
P.A. = Procurement
Organ
(pmp)
RegIOnal OrgaIl Transplantatlqn
Activity
*Jan - Jun 1997
T.A. = Transplant Activity (pmp)
Global and regional organ donation
1997 data
A retrospective analysis of the procurement activity allows us to distinguish basically three periods: the first, from 1978 to 1987, had a centralist procurement model; the principal activity was kidney transplant, carried out almost exclusively within the boundaries of the Capital City. The second, from 1988 to 1993, continued the expansion of the transplant activity. New solid organ transplants were being carried out (heart and liver), but organ procurement was still below the demand for organs. This happened in spite of the fact that organ procurement organisms had begun to appear in the Provinces. The third period, from 1993 to the present, shows a
CAPITAL
&~Qbd
data)
EVOLUTION
r-----
l1TYPE
(estimaled
and organ transplantation
per million population
in 1996.
3213
ORGAN SHARING ORGANIZATIONS
50%
I ??multiorgan
40%
D Trauma CE
30% 20% 10% 0%
Fig 6.
(estimated
Causes of brain death among organ donors, 1995-l 996.
Fig 7.
significant and sustained increase in organ procurement: from 10.76 per million population (pmp) in 1993 to 21.2 pmp in 1995. This tendency was not maintained in 1996, the index of which was 19.9 pmp (Figs 1 and 2). Different factors have contributed to the improvement of the procurement activity since 1993; the most important has been the attitude of health authorities as well as health professionals who have become conscious of the fact that “Donation and transplantation constitute a whole, and each part cannot exist without the other,” as expressed in the 1st International Transplant Congress held in Barcelona in 1996. OPERATIONAL
MODEL
Interest on the part of health authorities has led to the appearance of the National Program of Organ Procurement and Transplant within the orbit of the National Health System. As a consequence of this, the present operational model consists of a National Organism with a representative board whose functions are to regulate and give support to each of the eight Regional Organisms, that, in turn,
data)
Percentage of multiorgan retrievals from organ donors.
operate as head of the Provincial ones (Fig 3). This three-level pattern of organization allows a direct interrelation between the National Organism and the Provincial ones, retaining, for the former, its responsibility as regards the development, continuity, and professional training of Provincial Organisms, and insuring, for the latter, provincial autonomy as regards the control and supervision of centers and professionals. The creation of Provincial Organisms has helped to expand procurement activity all over the country. Yet, existing provincial differences at the sanitary level show, as a consequence, differences in the growth of the procurement and transplant activity. Bearing in mind the relation between procurement and transplant indices, we can group the eight regions into three categories. (Fig 4). Obviously, the Regions that have the best sanitary development are the ones that show the highest level of transplant activity. Organ procurement is still below the transplant level. The Capital City, on the one hand, centralizes the major transplant activity. The Pampa Region, on the
Religious Causes
4.5%
Mistrust of institutions and I or fear of organ traffloking 2% Family Opposltion
4%
Previous donor negative
19%
Others (estimated data)
12.5%
Fig 8. Evolution of the family refusal rate for organ donation, 1995-l 997. 1997 data are estimated.
BACQUk AND CAMBARIERE
3214
Table 1. Evolution of Organ Donation and Transplantation Activities in Argentina, 1993-1997 Years Organs
1993
1994
1995
1996
1997’
Cadaver donors
347 10.7 270 a.4
487 14.9 356 11.1
695 21.2 417 13
659 19.9 381 11.9
614 18.6 264 a.1
35 1.1 34 1.1 1
43 1.3 67 2 2
a5 2.6 86 2.7 5
109 3.4 65 2 3
2 2 -
2 1 -
0.2 13 0.3 3 -
0.1 11 0.2 4 -
110 3.4 60 2 -
Kidney Liver Heart Heart-lung Lung Pancreas
2 -
*Number and rates per million population (32.6 million inhabitants). +I997 estimated figures from exact data up to June.
other hand, reveals a marked difference between procurement and transplant indices, procurement rates being higher than those of transplant, even though, lately, there has been a tendency to shorten this difference. It is interesting to point out that not only sanitary factors have influenced the level of development of this activity but also technical and operational ones. The Regions where the “Hospital Coordinator Model” has been introduced, have higher procurement indices. An intense interchange of organs and patients between the different Regions is the direct consequence of this disparate development, on the basis of the present distribution system (the only national list). This type of interchange generates a prolongation of the cold ischemia time and adds an additional cost to procurement expenses. TECHNICAL
AND OPERATIONAL FACTORS
As regards potential
solid organ donors, one can see that the age range has discreetly increased among pediatric donors: 20% of donors who are beyond sixty years of age have been maintained (Fig 5). The most common causes of death in potential donors are trauma and cerebrovascular accident (Fig 6). There are two aspects we still need to improve upon: one is the low percentage of multiorganic retrieval (30%) (Fig 7); the other, family refusal rates which come to 66%. As regards the latter, the most frequent motive has been lack of accurate information about brain death and corpse integrity (54%); religious causes have only reached 4.5%, and mistrust of institutions and fear of organ trafficking, 2% (Fig 8).
TRANSPLANTATION FIGURES
Table 1 shows the evolution of the overall solid organ transplantation activity in recent years. The liver transplant rates discreetly increased in 1996; this rate was maintained during the first half of 1997. Kidney and heart transplant rates discreetly decreased in relation to organ procurement indexes. The waiting list mortality rate during 1996 was 15% for liver patients, and 11% for heart patients.
STRATEGIES FOR IMPROVING CADAVERIC ORGAN DONATION
In summary, we can say that to revert the tendency of the last period; we have the following aims in mind: (1) to promote a greater decentralization of the present model so as to ensure a greater development of the procurement activity in the regions with low rates (types 1 and 2B) and to foster the creation of transplant centers in the ones with low rates in this respect (type 3); (2) to insist on the proper balance between procurement and transplant in the eight regions so as to be able to diminish the interchange of organs with the subsequent reduction of the cold ischemia times; (3) until this harmonic development is reached, to maintain the present distribution system of only one national list so as to ensure equal possibilities to patients on the waiting list; (4) to increase the number of multiorganic retrievals SO as to have more organs at our disposal; and (5) to hold informative and educational campaigns to fight family refusal so as to obtain more organ donations. This is our project, and we mean to devote time and energy to its accomplishment.