1:41pm , Tuesday 19th January 2021

Thousands of Syrian kidney patients are on the kidney donation waiting list

23 November 2010

For 19 years Fatima went to the Renal Hospital in Damascus twice a week for dialysis. Over the years, she received numerous offers from anonymous persons willing to sell their kidneys, but despite her acute condition she turned them down because the law stated that a human organ could only be donated by a close relative. She had one chance for a healthy life when her brother agreed to donate one of his kidneys. Unfortunately, he changed his mind fearing possible post-surgery complications. Three years later in 2002, at the age of 40, Fatima passed away.

It was a great shock for her daughter Iman and the rest of the family and their grief worsened by the fact that the “rescue law”, as Iman refers to it, that could have saved Fatima’s life was passed only one year later.

Two main provisions have been added to the original 1982 law regulating human organ transplants. The new much awaited law allows the recipient to receive an organ from a non-blood related donor and stipulates the establishment of an organ bank that receives organs from brain dead patients.

Five years on, the new law did not help save Nasser’s life. “Nasser could have been listed in the Guinness Book of World Records for survival on dialysis for 29 years,” commented his physician Ahmad al-Ejja. Nasser died waiting in vain to get a kidney from a brain-dead patient. The relevant provision never came into force. This was because “the law was ambiguous and the amendment did not clearly define brain death,” explained Dr. Fawaz Saleh, Civil Law Professor at the University of Damascus.

The amendments to the law were written to clarify the relationship between the donor and the patient to prevent any under the table human organ trade. However, according to Dr. Rida Said, the Minister of Health, other physicians and human rights activists, it became apparent that the amendments would not solve the problem.

An ambiguous law

According to Dr. Mahmud Darweesh, a kidney transplant specialist, there are about 4,500 dialysis patients in Syria of whom 2,500 are in urgent need of a transplant. For these patients legalizing donation from non-family members and establishing a Kidney Bank was considered an important breakthrough.

But the new law is dysfunctional because it does not clearly define brain death, nor have any organ banks been established.

“Our hospitals register plenty of brain dead cases but have not seized the opportunity provided by the new law to save the lives of hundreds of patients,” said Dr. al-Ejja, director of Al-Mojtahid Hospital, and founder of the kidney transplant department in Syria. The Minister of Health agreed and added, in an interview with Baladna, that the lack of an organ bank was the main reason for not implementing the provision allowing the donation from brain-dead patients.

Six years passed before the government finally decided to establish an organ bank in one of Damascus hospitals. According to Dr. Lina al-Asaad, the newly appointed director, “the bank is going to be operational before the end of 2010.”

A solution turns into a problem

Nasser had no relatives. Ahmed, his neighbor and only aid, was always by his side.  “The new law offered Nasser an opportunity to receive a kidney from a non-relative, but he was unable to pay the price. He received offers from doctors and their assistants or from traffickers who are focusing on this new business,” Ahmad said.

The prices for a kidney range from 400,000 to 500,000 SL (about $ 8,000 to 10,000).

The Minister of Health admits that a “new business” of kidney trafficking has emerged following the passing of the new law. “The Renal Hospital estimates that half of the donated kidneys come from non-relatives,” he said. This percentage represents in his opinion “cases of kidney sale the law prohibits.”  Dr. Said is considering abolishing non-relative donation altogether because kidney selling has gone out of control. “Allowing donation from non-relatives has become a problem instead of offering a solution,” he said.

“Donation from non-relatives is but a temporary solution until donation from the brain dead is regulated and an organ bank is created,” said Dr. al-Ejja.  Nonetheless, he recognizes that the provisional solution “has opened the door for kidney trafficking, and six years have been wasted because the provision that allows organ donation from the brain dead has not yet been put into effect.”

“One would expect abuse of a law that allows non-relatives to donate their organs in the absence of legal provisions that regulate this activity,” said Dr. Lina al-Asaad, who is also the Chairperson of the Arab association for the diagnosis of renal diseases. “Legislators assumed that the non-relative donors would provide their kidneys for free, and this is of course impossible,” adding that “according to international laws, the literal meaning of receiving kidneys from non-relatives is organ trafficking.”

Innocently, the law opens door for trafficking!

As soon as organ donation by non-relatives became legal, advertisements for kidney donation were posted all over the walls of the Renal Public Hospital in Damascus. The author of this investigation posted an announcement asking for a kidney for a group O+ patient. On the same day she received a number of responses. Some of the alleged donors refused to negotiate a price over the phone while others boldly advanced a high price, promising a “healthy organ.”

The Minister of Health admitted that some doctors were involved in kidney trafficking, either directly or through their assistants. With the help of a doctor, the author of this report got tissue analysis of a patient and visited a kidney surgeon’s clinic allegedly involved in organ trade. The surgeon’s assistant offered to help the “patient” find a donor. Her efforts were not for free; she asked for 20,000 S. L. ($400) as a commission for setting up the meeting with a potential donor. The price of the kidney, she said, “should be agreed upon with the seller.”

Presumed traffickers are not punished

Since the new law was passed in 2003, Syrian media have often reported the arrest of organ trafficker networks. According to press reports, employees of public hospitals and others were allegedly involved in local and trans-border organ trade.

“Weak deterrence in the law contributes to the increase in organ trafficking,” said Dr. Saleh. “Punishments for such a crime could range between 3-15 years imprisonment, and a fine that does not exceed 100,000 S.L. ($ 2,000),” he added. “However, the prosecuted often benefit from mitigating circumstances and are set free simply because the bill does not specifically define organ trafficking and is ambiguous in its definition of non-relative donation,” Dr. Saleh elaborated.

This explains why when the investigator asked for permission to visit kidney trafficking detainees in prison, she received a letter from the Ministry of Interior granting her request but stating, “We have no prisoners condemned so far for organ trafficking,”

One more loophole, one more victim

Regina was living in Germany where kidney donation from non-relatives is prohibited. Unable to find a matching donor among her relatives there, she came to Syria, her country of origin, where she paid for a kidney donor. Unfortunately, another loophole in the law caused her to lose her life, she was only 35.

Her physician, Dr. Mahmud Darweesh, said that Regina died because “the law allows for several diagnostic committees and immunity testing laboratories that decide tissue matching analysis between donor and recipient. The medical committees that give the final approval for organ transplants refer patients to a number of tissue matching laboratories. Only two of these labs, one private and one operated by the Ministry of Health, have acquired international accreditation to undertake tissue matching for organ transplant,” he explained. Dr Darweesh is certain that Regina was referred to an uncertified lab and her case was diagnosed without the supervision of the Ministry of Health. The tissue mismatch was the main reason behind her death.

Dr. al-Ejja confirms this legal loophole: “the number of committees has led to a state of chaos; a patient whose request is revoked by one committee can seek the advice of another and get an approval that may be fatal.”

Two committees yet to be created

Implementation of the new law is further hampered by the fact that the Social and Brain Death Diagnosis committees have not been set up. “The Social Committee is supposed to supervise and regulate the donor-recipient relationship, while the Brain Death committee is supposed to determine the cases of brain death,” said Dr. Saleh.

In the absence of the Social Committee, several cases of disputes and wrangling between donors and recipients have been reported. In one case the surgery was cancelled just a few minutes before schedule when the donor asked for 100,000 SL on top of the agreed price for his kidney. The patient filed suit against the donor and the case is still in court.

In the absence of the second committee, “donation from brain-dead patients has been put on hold although it could have limited non-relative donations, which has become an obvious commercial transaction,” Dr. Saleh added.

Donors need protection

From her experience in the USA and as chair of the Arab Society for Renal Diagnosis Dr. al-Asaad concludes that without legal provisions that protect donors’ rights “people are reluctant to donate their organs even in exchange for money they badly need”.

“Donors’ safety is guaranteed all over the world. They receive detailed information about the surgery and the possible impact on their health. They are informed about the jobs they are able to practice, the medical examinations they regularly require, their ideal weight, etc.,” Dr. al-Asaad added.

Such regulations are absent from Law No. 30 and its implementation instructions. This has led some doctors to volunteer to counsel donors who hesitate just before the surgery, according to Dr. al-Ejja. The doctors give them the necessary medical arguments to avoid imprisonment for breaking the contract they signed with the recipient.

However, in Syria, it is a different story. Baladna reported the case of N.S., a 27-year-old who, after receiving half the agreed upon fee for his kidney, decided to pull out of donor surgery at the last minute. “I was in the hospital when I saw a donor left alone outside the operating room after his kidney was removed. At the same time doctors were carefully attending to the kidney recipient who was transferred to the intensive care unit,” he told the newspaper. The young man got frightened and left the hospital. “I prefer to beg on the streets or in jail than facing such a destiny,” he added.

A need to act quickly to supply transplant needs

“Only 23% of transplant needs are satisfied. This is the result of donation being practiced without any legal protection or appropriate medical supervision,” said Dr. Rania Dirani, Director of the Renal Hospital. To remedy the current situation “we need to quickly activate donation from the brain-dead,” she said.

Dr. Saleh agreed and added that “this is not going to be solved unless the law explicitly states that a kidney bank shall be created to preserve the organs taken from the brain-dead.”

The Minister of Health, the Director of Syria Hospitals and the Director of the Kidney Hospital agree that the solution is to encourage donations from the brain-dead and activate the amendment to the law that has been “frozen” for six years.

However, they differ on whether non-relative donation should be kept. The two doctors agree on donation by non-relatives and the need to include the necessary provisions to protect the rights of both parties. The Minister of Health wants to prohibit such donation because he thinks the practice has lead to organ trafficking.

In the meantime, Na’ela has secured a non-relative donor, so has George. Both are ready for the transplant operation since the supervising committee is convinced that the donors will not receive any financial compensation. However, due to the legal loopholes, a deal has been concluded under the table.

**

In Jordan as well as in Egypt, non-relative donation is considered legal with a clear consent from the donor. In both countries, receiving money for organ donation and organ trade is prohibited and penalized.


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