Thousands of Terminally Ill Patients Suffer Waiting for Organ Transplants

11 March 2009

The hope of a being cured lived with Murshid for five years while he took certain medications to ease the pain of a kidney disease. But his hopes evaporated when his doctor told him that both his kidneys had  failed.Murshid has joined the ranks of Syrian terminal renal failure patients, officially estimated at more than 5,900 and independently at much higher.  His situation is further aggravated by the fact that 2,000 of these patients need around 300 dialysis machines, according to international standards, but Syria can provide 140 dialysis machines. Moreover, every year, between 1,200 to 1,400 new patients join the list.International statistics show that the incidence of terminal renal failure is at 54 patients per every million persons, one third of who require dialysis.

Murshid, 33, does not lead the life of an ordinary young man.  At every session, he watches his blood flow into and out of the dialysis machine. He undergoes three weekly sessions, each for three hours, to purify his blood. He carefully measures his food and water intake. Drinking a certain amount of tap water will force him to have an emergency dialysis session, which would endanger his life.

His Situation is worsening by the day. His only hope is a kidney transplant, usually done for free at three Syrian hospitals:  Tishreen, Al-Muwasat and the Surgical Kidney Hospital, where the first transplant operation took place in 1972, when Law Number 31 was enacted.

But laboratory tests taken by relatives of Murshid who are willing to donate him a kidney have proved negative, according to a committee that has to approve the donation, and to set the medical protocol which the hospital is obliged to follow if tests are positive.
But can patients such as Murshid find a live donor other than a family member without having to pay him a sum of money to purchase a kidney, an illegal process that is happening place most of the time?

According to the new Law of Transplants No. 30 of 2003, which amended the 1972 law, organ donation for tansplantation should be for free. Otherwise it would be considered as trading in organs, an offence which stipulates a penalty of temporary hard labor, and a fine of SLL 50,000 (around $1,000-2,000.)

Murshid found out through other patients that he might be able to find a donor other than a relative, by advertising in newspapers in return for SLL 350-4000,000 ($7,000-8,000).
He could also have the surgery done outside Syria at the same cost, another choice which he cannot afford.

He found 15 advertisements posted at the entrance of the Kidney Surgical Hospital, but none of them mentioned the sum requested for the donation.

So, how is he to find a kidney?

A kidney transplant centre was established in 2001 at the Kidney Surgical Hospital, according to the centre director, Dr. Rania Dirani. More than 290 transplants have been conducted after live donors were located, at a success rate of 85-90 percent. Only two cases failed because the body rejected the transplanted organ.
According to her figures, 70 per cent of the donors were relatives.

So where did the rest of kidneys come from?.

They came from non-family donors in accordance with an undertaking by the donor that is placed in the patient’s file, a must by the hospital to grant approval for the operation. No other details are mentioned in that paper.

Dr. Dirani says that in spite of the legal ban on the sale of organs, there are incidents of trading and brokering in kidneys.  Several suspects have been arrested. Police had announced the arrest of several members of a gang trading in kidneys, including three doctors who work at private hospitals.

As for Murshid, his only solution is to find a kidney coming from a brain-dead patient in a country which legalized such donations in 2003.
But such donations have been hampered by lack of medical infrastructure, trained staff, legal regulations and social taboos.

Despite Murshid’s dire situation, his case is still better than that of 36-year-old Nizar, who suffers from terminal liver failure.  He can only stay alive through a liver transplant. Local statistics show that between 2-7% of Syrian citizens suffer from liver failure – around 750,000 patients.  But in all of Syria, there are no medical facilities to organize liver transplants based on donations made by relatives and others.
According to medical expectations, 20% of these patients will suffer from terminal illness and would require liver transplants. Ninety per cent of those who have no opportunity for a liver transplant will die within a year.

Statistics from the state-run Damascus Hospital alone show that 32 liver failure patients were admitted between June 1, 2006 and end of March, 2008. Six of them have since died.

These facts terrify Nizar, who is exhausted and looks pale.  He visits the Damascus Hospital from time to time in the hope of a miracle.  This hope is not only entertained by Murshid and Nizar, but also by patients suffering from heart and lung failure.  Heart and blood circulation diseases have killed around 53,325 persons in Syria in 2005, a figure that is on the rise. All of them will face a tragic fate if the door of hope remains closed.

So, will this door remain closed?!  And why?!

Director General of the Damascus Hospital Dr.Issam Hreirati believes that transplants from brain-dead patients are not at all possible in view of the realities on the ground, whether at his facility or at any other Syrian hospital.
Several conditions must exist to help conduct transplants, especially those dealing with legal and medical aspects.

Legal Structure

Dr. Dinari, from the Kidney Surgical Hospital, says Law No, 30 of 2003 which allowed transplants from brain dead donors, has left the door wide open to donations from the clinically dead, without defining the family relationship..

This is, Dr. Dirani says, came at the expense of donations from brain dead patients because had the law specified the degree of the relationship, it would have specified the need to find solutions, including transplants from the brain dead.

“We have started contrary to the path of other countries which began with organs donated from brain-dead persons and then moved on to receiving organs donated from living persons,” Dr. Diran told “Al-Baath” newspaper in an interview

Dr. Ahmad Al-Ijjeh, one of those who wrote several texts of law no. 30 says the problem lies in the executive instructions that were made by the Ministry of Health, to implement the law.

The old law, he says, did not ban organ donors among non relatives, but no regulations were put in place to help execute it..  Even when it came to the licensing of hospitals to perform transplants in accordance with executive instructions, the first license was issued only in 2008, five years after the law came out.
Between 2004 and 2008 over 180 organ transplants took place at private hospitals. But a few months ago, the ministry issued clear instructions banning such operations at private hospitals as a result of the debate on brokerage and trade in kidneys, and the lack of the required conditions in private hospitals, among which is isolation of wards, and sterilization.

Dr. Ijjeh finds that the new law has contributed to solving the problem of permissions from the relatives of deceased persons, as the old law referred to the brain-dead person as “the body” and  required the permission of all the relatives for harvesting the organ for transplantation.  This was a crippling condition. The new law requires the permission of only one, first-degree relative.  If this is not possible, then the permission of one second-degree relative or the will left behind by the deceased will suffice.

All these matters were clarified in Article 3 of Law No. 30, the base for Regulatory Instructions numbers 21, 22 and 73 which delineated necessary conditions for transplants from both living and brain-dead persons.

But according to Dr. Dirani, this is not sufficient. A comprehensive legal framework is needed to organize transplantation from the brain dead, including enactment of a law to establish a national bank for organ donations from the living and the brain-dead, followed by clear executive instructions allowing such transplants.

Dr. Dirani also believes that the medical structure for transplants from brain dead people is insufficient, despite the fact that Law No. 30 has set conditions for it.  She says there are no intensive care units in Syria that conform to international standards required for for transplants. There are no specialized medical doctors or nurses to handle organ donations from the brain dead, including harvesting operations that require transporting the organs. There neither are proper containers for transport, nor statistics or data bases listing the names of patients requiring transplants.

Director of the Muwasat Hospital Dr. Samir Ghazzawi, agrees with Dr. Dirani. He believes that transplants from brain-dead persons require medical capabilities and equipment, only little of which is available, and without which it would not be possible to activate transplants from brain-dead patients.

On the other hand, Dr. Bassam Jukhadar, head of neurosurgery at the same hospital, said even the dissection work needed to prove brain death is not available.

Law No. 30 had clearly referred to the necessity of having specialized surgeons. But according to the Directorate of Hospitals at the Ministry of Health, there is only one surgeon in Syria who is specialized in kidney transplants and another who is specialized in liver transplants.

In spite of this, the law has sought a solution to this problem by stating in article 7 that it will approve accreditation of scientific diplomas or experience recognized by a technical committee from the Ministry of Health.

The debate on the need for huge medical capabilities comes from trying to justify the shortcomings, says Dr. Ijjeh, who believes it is possible to begin the process gradually, starting at one hospital.

But, when studying the experience of transplant donations from brain dead in neighboring countries, it is clear that special conditions and standards exist for liver, heart and lung transplants from the brain dead.
Syrian Law No. 30 sets several conditions for all cases in its Executive Instructions No. 73.

The law defines brain death as a non-reversible coma for all the functions of the brain. Its confirmation requires the decision of a specially formed committee. But Dr. Jihad Al-Ashqar, Director of the Damscus Department of Health, the party responsible for forming such committees, says until now, only committees for kidney transplants from living persons have been formed.
Even the number of brain deaths in Syria remains unknown.  However, the duty neurologist at the Damascus Hospital says that at least two brain deaths occur every month. But relatives cannot accept the idea of harvesting an organ from the brain-dead person.

“I have noticed there is absolute rejection of the idea even when I mention the subject to them in passing,” he says.

Salem, who was visiting a relative in the neurology department who was in a non-reversible coma, had never heard of transplants from brain-dead persons before. And if this ever happened, he could never imagine that any of his relatives would accept, even if clerics and theologists have legalized it.

Sheikh Walid Falayoun, a researcher at the Damascus-based Islamic Studies Centre, believes there is no contradiction between theology and medicine . He has recently found new givens to support his argument. The Companions of Prophet Mohammad used to tell him before entering into battles: “My soul will be sacrificed for yours, and my spirit is a guardian of yours.”  If the soul and the spirit are the most valuable property of the human being, then everything else is of less value, argues the cleric.

Sheikh Falayoun continues saying that from this explanation came the action of one of the Prophet’s companions who lost his nose in a battle and made a nose from gold to replace it. But the Prophet ordered him to use silver because Islam bans men from wearing gold. “But when doctors agreed that gold was the only usable metal, religion has approved it, which forms the basis of the fact that all that what medicine approves is accepted by religion”..

What applies to kidneys, liver and other organ donations from clinically-dead patients, also applies to cornea donations.

Shadi, 21, suffers from greatly reduced eye sight and disturbance caused by a corneal disease. He is on a waiting list along with 5,500 patients, (60% of whom suffer from eye diseases).  According to available statistics, there are more than 26,000 persons suffering from reduced vision, and more than 47,000 suffering from corneal diseases in Syria. Corneal diseases are the second main cause of blindness, according to the World Health Organization (WHO).

Shadi still hopes for a corneal transplant, but he says this would need a miracle, in view of the reality of corneal transplants in Syria.

The ophthalmology hospital has had one corneal transplant operation since it opened its doors in 2005.  The cornea came from a dead child in 2006 and his parents agreed to make the donation.
Director of the hospital Dr. Mai Abadha says the hospital has been unable to perform any transplants since the Tissue Bank International (TBI) stopped supplies of corneas due to shortages.
Between 1981 and 1988, a total of 1,500 corneal transplants were performed.

The harvesting of a cornea for transplantation from a brain-dead person is considered a basic procedure. Corneal harvesting can be done up to 12 hours after clinical death is pronounced, and does not require removing the whole eye, hence it does not cause any disfigurement. She believes that harvesting after brain deaths only needs raising gradual awareness and creating a new culture among members of society. So far, this matter has not been considered seriously.

Article 4 of the Regulatory Order for Law No. 30 of 2003 had delineated the tests to be made on candidates for corneal transplants, as well as the conditions for performing them.
Legally speaking, the supply of corneas is now linked to the Syrian Eye Bank, established in 2007. The bank is connected to the Minister of Health and is permitted open branches in any Syrian governorates.

The Bank’s purpose is to harvest corneas and eyes and to organize approval of operations. It is also responsible for storing amniotic and solid tissues in accordance with the provisions of Law No. 30 of 2003.  But up to the time of preparing this report, the Bank consists of a building whose door opens for a few hours before it is locked by a key in the possession of the Bank’s sole employee, its current Director, Dr. Rida Said.

It has not been activated due to a maze of bureaucratic procedures, but it has some medical equipment, including those for tissue measuring, a sterilizer and a refrigerator.

The Ministry of Health has declined comment on the reasons preventing the bank’s operation.
Dr. Said believes there is urgent need to activate the Bank particularly that corneal transplants have been at virtual standstill for the last five years in the public sector hospitals due to cornea shortages.
Some transplants, however, are taking place in the private hospitals, where corneas are imported in line with certain controls that are devised by the Bank, which still lacks communication facilities.

Meanwhile, Murshid, Nizar, Shadi and many others continue to wait for the day to come.

This investigation was supported by Arab Reporters for Investigative Journalism ( and coached by Dr. Marwan Qabalan.


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