Volume of organ failure in Syria and obstacles to initiate a national cadaver donation program.

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areas.5 In the absence of an established kidney
transplant program, it is not viable economically to
maintain large numbers of patients on a maintenance
hemodialysis program in a developing country.4
Kidney transplantation is the only viable option
for most patients with irreversible kidney failure
in the developing countries, because it is the most
cost-effective form of renal replacement therapy,
with the best promise of improved quality of life
and an excellent chance of rehabilitation making
a successful kidney transplant a greater necessity
Special Report
TRanSplanTaTion
65
Iranian Journal of Kidney Diseases | Volume 2 | Number 2 | April 2008
Volume of Organ Failure in Syria and Obstacles to Initiate a
National Cadaver Donation Program
Bassam Saeed,1 Rania Derani,1 Maher Hajibrahim,1
Jawad Roumani,1 Mohd Bassam Al-Shaer,2 Rida Saeed,3
Sahar Damerli,4 Rebhi Al-Saadi,5 Bachar Kayyal,2 Milad Haddad6
IJKD 2008;2:65-71
www.ijkd.org
1Surgical Kidney Hospital, Ibn Alnafis Medical Complex,
Damascus, Syria
2Al-Mouassat Hospital, Damascus University, Damascus, Syria
3Eye Bank, Eye Surgical Hospital, Ibn Alnafis Medical Complex,
Damascus, Syria
4Hemodialysis Unit, Damascus Hospital, Damascus, Syria
5Hemodialysis Unit, Douma Hospital, Damascus, Syria
6Gastroenterlogy Department, Ibn Alnafis Hospital, Damascus,
Syria
Keywords. organ donation, kidney transplantation, cadaver, Syria
INTRODUCTION
The incidence of end-stage renal disease (ESRD)
in developing countries is 48 pmp to 240 pmp,
compared with 76 pmp to 268 pmp in the developed
regions of North America, Europe, and the Asia-
Pacific region.1-3 In developing countries, ESRD
seems to be at least as common, if not more common,
as that in developed countries.4 The figures given
probably underestimate the true incidence, because
most of the people live in rural areas where there is
limited access to healthcare facilities and patients
do not have access to dialysis facilities in urban
than elsewhere. There is a worldwide shortage of
organs and the gap between supply and demand
growths inexorably. Lack of resources, cultural
factors, and ignorance all contribute to the ongoing
shortage of organs.6
VOLUME OF ORGAN FAILURE IN SYRIA
In the absence of formal registry data, it is
difficult to establish with certainty the prevalence
and incidence of organ failure.5,7 However, we have
tried in the current study to address this point by
collecting data from healthcare authorities and
different medical institutions who are involved
in caring of organ failure patients. Yet, kidney
and cornea are the only 2 organs or tissue that
could be transplanted in Syria. In the past, heart
transplantation has been performed for few patients,
and then, it was stopped. Whereas liver, other
organs including the pancreas, lung, bone marrow,
and intestine have never been transplanted in our
country. However, bone marrow transplantation
program might hopefully start in few months. The
only 3 organs or tissues that we were able in this
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unknown. As we all know, hepatitis virus-related
liver disease in adults is the leading cause of liver
failure (viral cirrhosis). Therefore, if we knew
the estimated prevalence of both hepatitis B and
hepatitis C in the country and the long-term clinical
course and outcome of hepatitis B virus (HBV) and
hepatitis C virus (HCV) carriers, we could make an
estimation of the prevalence of viral cirrhosis.
In 2005, the Blood Transfusion Center of Damascus
University has published its registered data of the
prevalence of HBV and HCV among blood donors9;
Organ Failure and National Cadaver Donation Program in Syria—Saeed et al
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Iranian Journal of Kidney Diseases | Volume 2 | Number 2 | April 2008
study to collect sufficient data on their failure
status are essentially the kidney followed by the
liver and cornea.
Corneal Blindness
Of all the transplant surgery done today,
corneal transplants are by far the most common
and successful. According to the World Health
Organization statistics, the estimated total number
of patients suffering from severe poor vision or
blindness in Syria is 125 000, which makes the
estimated prevalence of blindness of 0.7%, 37% of
which are diseased corneas as a cause of blindness.8
Therefore, 46 250 patients have corneal blindness
and the estimated prevalence of corneal blindness
in Syria is 2.3 per 1000 people.
Eye Surgical Hospital in Damascus is the biggest
ophthalmology center in Syria where the Eye
Bank is located and 8032 patients with corneal
blindness had been registered till April 2006 on
waiting list, out of whom 2496 have unilateral
diseased cornea and 5536 have bilateral diseased
cornea; therefore, 13 568 eyes needed cornea
transplantation. Of these, 1494 cornea transplant
operations were performed at the Eye Surgical
Hospital using donated cornea, and the remaining
4042 patients are still registered and waiting for a
cornea, but unfortunately, for the past 2 years, the
Eye Surgical Hospital did not receive any donated
cornea; therefore, cornea transplantation is withheld
in this center. Nevertheless, some private centers
are still performing cornea transplants in a very
occasional manner by using “purchased” corneas,
while the vast majority of patients are still waiting
for sight to be restored.
Liver Failure
Since national registry is lacking, the prevalence
and incidence of chronic liver failure in Syria are
we have reviewed these data in details and thought
they can be very representative of the Syrian
population HBV and HCV carrier status as a whole.
Though, in the current study, we have estimated
the national carrier status of HBV and HCV by
using the Blood Transfusion Center of Damascus
University’s figures as a good sample reflecting the
real national HBV and HCV carrier status.
Hepatitis B virus-related liver disease. The
estimated total number of HBV Syrian carriers is 540
000 patients which makes the estimated prevalence
of HBV carriers of 2.7%. If we know already that
4% of those carriers have the risk of developing
liver failure within 15 to 25 years,10,11 then we have
estimated that we would have around 865 new
HBV-induced liver failure patients every year.
Hepatitis C virus-related liver disease. The
estimated total number of Syrian HCV carriers is
around 200 000 patients which makes the estimated
prevalence of HCV carriers of 1%. Taking into
account that 5% to 20% of those carriers have the
possibility to develop chronic liver disease, and
subsequently, 30% of those who have already HCV-
induced chronic liver disease will ultimately reach
the end-stage HCV-related liver disease within 15
to 25 years,12,13 we could calculate the estimated
number of new patients with HCV-induced liver
failure to be between 118 and 482 every year.
We combined the estimated incidence of both
HBV and HCV in 1 figure, and realized that there
would be between 983 and 1347 new patients with
HBV- or HCV-induced end-stage liver disease on
a yearly basis; therefore, the estimated incidence
of viral cirrhosis is 49 pmp to 67 pmp. Once more,
it is worthwhile to mention that this figure does
not include the other known causes of liver failure,
and therefore, the true incidence of the end-stage
liver disease in Syria would be definitely higher
than the above mentioned figure.
Kidney Failure
The incidence of ESRD is estimated at anywhere
from 100 pmp to 200 pmp per year. In 1997, the
incidence of ESRD in Syria was estimated to be 75
pmp14; however, once more, as a national registry
is lacking, we do not know the true incidence of
ESRD, and we strongly believe that this figure
probably underestimates the true incidence because
most of the people live in rural areas where there
is limited access to healthcare and patients do not
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also their influences on the number of patients
receiving dialysis at any given place or time. Some
of these factors are the acceptance rate of renal
replacement therapy, problems related to access
of patients to long-term dialysis (particularly for
those who come from rural areas which essentially
precludes their inclusion in long-term dialysis
programs),4,5 technical and economical problems
which are expected to be more and more deepened
in the absence of an established kidney transplant
program precluding the possibility to maintain large
Organ Failure and National Cadaver Donation Program in Syria—Saeed et al
Iranian Journal of Kidney Diseases | Volume 2 | Number 2 | April 2008
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reach urban dialysis facilities. We estimated the
incidence of ESRD in Syria to be 100 pmp, which
means that every year, 2000 new cases with ESRD
are registered in our country. This incidence is closer
to what it has been reported in the neighboring
countries; for example, 200 pmp in Egypt, and
120 pmp in Jordan.15,16 The last available report
of renal replacement therapy in Syria which was
issued in May 2005 by the statistical department
of the ministry of health has shown that there
were 2750 patients on hemodialysis program
and 111 patients were on continuous ambulatory
peritoneal dialysis (CAPD); therefore, the total
number of patients with ESRD undergoing either
hemodialysis or CAPD was 2861. Regarding the
Syrian population of about 20 million, we estimated
the prevalence of patients with ESRD who receive
renal replacement therapy in May 2005 to be
143 pmp. The 2750 patients hemodialysis were
undergoing their dialysis sessions in 4 different
health sectors as follows: 1448 patients in the
Ministry of Health (MOH)-affiliated centers, 615
patients in 3 university hospitals, 490 patients
in private centers, and 197 patients in military
hospitals. We reviewed the number of patients who
were undergoing their hemodialysis sessions in
MOH centers for the past 3 years, and we pointed
out that this number was not increasing as we
might expect, but rather has sharply decreased
in the year 2004, when there were 1371 patients
compared to 1741 patients on hemodialysis in 2003,
and then, it slightly increased to 1448 patients in
2005. These figures do not accurately reflect the
whole picture of renal replacement therapy and
ESRD incidence in our country, because they only
speak of the MOH sector which provides healthcare
for more than 50% of patients on hemodialysis,
and more importantly, because there are other
factors than the incidence of ESRD which have
numbers of patients on a maintenance hemodialysis
program in a developing country,4 survival of the
patients on maintenance dialysis, and the number
of patients who receive transplantation.
We reviewed the reported mortality of patients
receiving hemodialysis in several dialysis units in
our country for the past 3 years, and we estimated
the annual mortality rate of the patients on
hemodialysis to be 15% (9% to 31%). The long-term
outcome of maintenance dialysis as the treatment
modality of choice has also been assessed in the
current study and showed that the 3-year survival
rate of these patients in Syria is 26% to 64%. This
rate is far from being satisfactory although it is
not that different from what it has been reported
elsewhere in other developing countries; for
instance, it was ranging from 25% to 52% at 5 years
in Egypt, South Africa, and Taiwan.15,17-18 In the
developed countries, 56% to 60% of patients with
ESRD receive dialysis, and in some countries the
figure is higher.19,20 Unfortunately, we do not have
data on the percentage of patients with ESRD who
receive dialysis in Syria although we know that the
acceptance rate for renal replacement therapy is less
than what it has been reported in the developed
world where it ranged from 61% to 99%.21
Peritoneal dialysis is grossly underused in Syria;
in 2005, less than 4% of patients on dialysis were
receiving CAPD. This underuse of CAPD in Syria,
as in some other parts of the world,5,22 is partly due
to physician bias. Other reasons in our country are
as follows: lack of knowledge of patients and their
subsequent less complaint, lack of skilled personnel
which results in high rate of infection,23 recurrent
peritonitis, and other technical problems.
KIDNEY TRANSPLANTATION IN SYRIA
The number of kidney transplants performed
pmp correlates with the socioeconomic status of a
country.24 In 2006, a total of 339 patients received a
kidney transplant in Syria which made the number
of kidney transplants to be slightly above 17 pmp
per year. This figure is quiet better than those of
most developing countries in which it ranges from
1 pmp to 5 pmp with an average of 2 pmp in the
Middle East and the Afro-Arab region25; however,
it is still far from being satisfactory because, as we
have mentioned above, the estimated incidence of
ESRD in our country is 100 pmp. Therefore, the
remaining 83 pmp, which are equivalent to 1660
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Proponents of kidney transplantation argue that
transplantation should be encouraged because it is
the most cost-effective form of renal replacement
therapy, with the best promise of improved quality
of life and an excellent chance of rehabilitation. A
national cadaveric donation program is a viable
option to address the widening gap between organ
request and availability; for instance, the increasing
request for kidneys is not only due to the increased
number of patients with ESRD awaited for kidney
transplantation, but also to the fact that patients
Organ Failure and National Cadaver Donation Program in Syria—Saeed et al
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Iranian Journal of Kidney Diseases | Volume 2 | Number 2 | April 2008
new patients with ESRD who did not receive a
transplant, will be on a yearly basis either added
to those who are on dialysis programs with a
projected 3-year survival from 26% to 64%, or
remained without dialysis, with all what it means
in terms of mortality rate either due to the lack of
access to dialysis or to a nonacceptance of dialysis
by the patients themselves.
In perspective, if we are targeting to perform
kidney transplantation for 75% of our new
patients with ESRD which are equivalent to 75
pmp per year (since the remaining 25% might
not be good candidates for transplantation due
to a different setting of reasons including the
medical contraindications), this optimal rate of
transplantation is quiet higher than what is being
done in reality (17 pmp per year). Therefore, we
could figure out that in 2006, only 23% of the
estimated optimal need for kidney transplantation
is met in our country. Now, according to what is
going on in the developed countries, we realize that
most (> 90%) of all kidney transplants performed
around the world are in the developed countries, in
which they perform an average 20 to 40 transplants
pmp per year.26 An exemplary experience is that of
Cyprus with an ESRD incidence of 80 pmp and a
transplantation rate of 60 pmp, one-third of which
being from cadaveric donors.27 These results enable
us to conclude that there is a marked discrepancy
between the number of patients with ESRD and
the number of patients who received a kidney
transplant in Syria. Such a discrepancy might keep
growing if no proper actions are going to be taken
in the near future in order to reverse the curve
and to narrow the gap between the supply and
demand of kidneys in our country.
Obstacles to Initiate a National Cadaver
Donation Program
who previously would not have been considered
for transplantation (eg, diabetics, the elderly, and
children) are now on waiting lists.
Kidney transplantation in Syria, as in many other
developing countries, is marked by its exclusive
reliance on living donor transplantation. The use
of cadaveric and or unrelated donors has been
suggested as one possible solution to ameliorate
the situation.28 In November 2003, the “law number
30” has been enacted and constituted a landmark in
the history of organ donation and transplantation
in Syria as it recognized for the first time in our
country of the concept of brain death and allowed
the use of organs from cadaveric donors and also
from living donors (either related or unrelated).
Since the commencement of organ transplantation
in Syria in the 1980s, transplantation activities have
been exclusively relied on living related donors. This
very important law has been preceded by another
big stride in this regard which was the acceptance
of the higher Islamic religious authorities in the
country back in September 2001 on the principle
of procurement of organs from cadaver providing
consent to be given by one of his or her first-
degree or second-degree relatives. Such a progress
could only be achieved after several meetings
which gathered religious authorities, legislators,
lawyers, healthcare professionals, patients, and lay
public. In November 2004, the ministry of health
has issued guidelines which regulate almost all
legal and medical aspects of organ donation and
transplantation in Syria, including the definition of
death and brain death criteria, informed consent for
cadaveric organ donation, banding commercialism,
defining who is a donor, and describing how to
evaluate a potential donor of the kidney, liver,
heart, lungs, intestine, or cornea.
Undoubtfully, some of the major obstacles to
initiate a national cadaveric donation program
in our country has been overcomed by the
official recognition of brain death concept and by
authorizing cadaveric organ donation as stated
in the law number 30, and also by the support of
most religious commentators, Islamic or Christian.
It is worthy to say that Saudi Arabia is an excellent
example of a conservative Muslim country that has
implemented a cadaveric donor program successfully
and made major strides in developing a cadaveric
donor program through public education, excellent
coordinators, and the efforts of its procurement
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living unrelated donor in the neighboring countries.
This is unlike what was happening before the
enactment of the law number 30 where receiving
transplant abroad from an unrelated donor was the
unavoidable solution for those who could afford
it and did not find a suitable living related donor
inside the country.
Ignorance appears to be the major limiting factor
inhibiting the institution and growth of cadaveric
organ donation program in Syria as in many other
developing countries.31 That is the reason why we
Organ Failure and National Cadaver Donation Program in Syria—Saeed et al
Iranian Journal of Kidney Diseases | Volume 2 | Number 2 | April 2008
69
agency, the Saudi Center for Organ Transplantation.29
The sequence of events preceding cadaveric donor
transplantation is displayed in the Table.
Even though, we are still lacking a cadaveric
donation program despite all achievements, because
there are still many other obstacles that have to
be properly addressed. As a result, the practice
of living unrelated donors has flourished, and
consequently, an increasing number of kidney
transplants from living unrelated donor was at
the expense of decreasing living related donors
in a very clear manner. Though, the practice
of living unrelated donor transplantation has
been marked in our country to have a negative
impact on the potential of living related donors.
Furthermore, it also might have a negative impact
on the development of local cadaveric donation
program in the future.30 Although this source had
fallen into disrepute because of exploitation by a
few, it remains an important potential source of
organs, and nowadays, very few patients with
ESRD are going abroad to obtain kidneys from
absolutely need a concerted and ongoing education
campaign by the transplant community of both the
healthcare professionals and the public to increase
their awareness of the need for organ donation so
as to change negative public attitudes that hinder
discussion of this subject by family members and
to gain societal acceptance. The success of this
program definitely requires a high degree of public
trust and acceptance.
The attitude of indifferent of health care
professionals has also been identified as a major
limiting factor to the initiation of cadaveric organ
donation program, exactly as it has been pointed out
in other developing countries,6,31 and changing such
indifferent attitudes should be given priority.
Establishment of a coordinating center for organ
donation and transplantation requires appropriate
legislation and financial support by the government.
Such a center is fundamental for the success of
cadaveric donation program as it supervises and
coordinates the whole process of organ donation
between the donating hospital and the transplant
center, in addition to so many other functions like
applying strategies to increase the awareness of
the medical community and public at large to the
importance of organ donation, and particularly,
emphasizing ethics as the center is a nonprofit
governmental agency. Later on, once this center is
being well established, a network of regional organ
procurement organizations has to be created, and
ideally, it is supported financially by the national
healthcare administration and health insurers.
Lack of trained transplant coordinators is one of
1. Identification of potential donor
2. Notification of organ procurement organization
3. Diagnosis of brain death made by attending physicians; family informed
4. Suitability of donor ascertained
5. Permission for organ donation obtained from family
6. Tissue typing and ABO blood typing of donor
7. Kidneys removed and stored
8. Local and national computer listing of all potential recipients reviewed
9. Top recipient selected by ABO blood type and a national network scoring system
10. Transplantation program for recipients of marginal kidneys
11. Top recipient patient notified and admitted to hospital
12. “Backup” recipient prepared when recipient’s panel reactive antigens are high
13. Donor lymphocytes and recipient serum cross-matched
14. Preoperative history and physical examination
15. Preoperative chest radiography, electrocardiography, ABO blood typing, and routine chemistry
16. Dialysis performed if necessary
17. Transplantation performed
The Sequence of Events Preceding Cadaveric Donor Transplantation
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