The lack of organs for transplants has forced some desperate patients to “buy” from overseas. While the transaction usually involves a willing seller, questions have been raised over the ethical and health implications of such a practice.
AZMAN Johan*, 48, wishes he could get a kidney transplant soon.
Due to kidney failure, he goes for dialysis three times a week, each time lasting four hours. The former lorry driver does not hold a regular job and has to depend on his wife, who is a clerk, to support the family.
The father of two was to have undergone a transplant three years ago when his wife, who was a perfect match, agreed to donate a kidney. But Azman was not well and the operation was called off.
Last month, he was scheduled to have the transplant but this time, his wife backed out at the last minute. He suspects his mother-in-law had a role to play but did not bring up the matter.
Now he is waiting for a non-living donor but he knows it is a long shot.
“I really hope to get a kidney soon,” he sighs.
Azman is one of 21,000 patients undergoing dialysis treatment in the country. Of this number, 11,000 are eligible and waiting for a kidney transplant.
There are also those waiting for heart, lung and liver transplants but their numbers are lower than those waiting for kidneys. While kidney patients can undergo dialysis while waiting for donors, others usually die waiting for a transplant.
The ethical way
In Malaysia, the accepted and ethical way for getting a transplant is to have either your own relatives (parents/siblings/spouses) be the donor (called the life-related transplant) or from a nationally organised deceased donor (DD) programme.
“There is a lack of dead donor organs and most patients don’t want to bother their relatives with a request for donation. They also know if they wait their turn for an organ in Malaysia, it might take 10 to 15 years,” says National Kidney Foundation (NKF) chairman Datuk Dr Zaki Morad Mohd Zaher.
Desperate for a better quality of life, those who can afford it go overseas for transplants, with China and India being the favoured destinations.
But there’s no guarantee they will return healthier. World Health Organisation (WHO) adviser Prof Dr Francis Delmonico told a recent seminar that some Malaysians who went abroad for organ transplants have returned home with HIV, hepatitis and other problems.
Dr Zaki says that because money and profiteering are often involved in these transplants, one cannot be sure of the standard, care or practice at these centres.
“Are the donors properly screened to exclude infectious diseases that can be transmitted to the recipient? Is the surgeon competent enough to remove the organs without damage and place the organs without complications to the recipients?” he asks.
He adds that because such transplants are illegal in these countries, they are often done quietly outside the usual operating hours and the patients are discharged even before they are ready to be sent home.
He also says most Malaysians do not plan for the cost of subsequent care and will exhaust all their savings just for the surgery.
He believes that the agents mislead patients by proclaiming that everything will be well after the transplant.
“Even if there is no complication after the transplant, post transplant care (medications/routine blood tests) will cost about RM3,000 to RM4,000 a month. If they develop complications such as infections or surgical complications, the cost will be higher,” says Dr Zaki.
The issue of getting an organ overseas for transplant goes beyond health implications. It is considered a form of exploitation, as usually it is the poor, marginalised and uneducated who sell their organs for money.
P. Letchumi*, 51, went to India for a kidney transplant in 1994. She recalls the locals waiting at a designated area in a hospital to sell their kidneys.
She met the organ donor match; a man who desperately needed money to get his daughter married off. The operation cost her about RM50,000 although she is not sure how much the man received.
When asked if she felt what she did was wrong, Letchumi replies that her family wanted her to have the operation so that she could take care of her two small children back then.
But two years after the transplant, her kidney failed and she had no choice but to go for dialysis. She doesn’t believe in purchasing organs for transplant now.
“What if the seller encounters problems with his kidney later on? He can’t get a replacement,” she says, adding that she would even reject a cadaver transplant now because a younger person would deserve it more.
Datuk Dr Harjit Singh, President of the Malaysian Society of Transplantation (MST), acknowledges that Malaysians go overseas for organ transplants because of unavailability of donor organs locally.
But that does not make it right to go through any unethical and illegal means of getting the organs, be it from a living or deceased donor, says Dr Harjit.
“Such illegal practice is certainly akin to a crime against humanity. By law of nature, we all have to die some day. But as people become affluent, they want to live forever,” he opines.
The buying and selling of kidneys is called “transplant commercialism”, and it is illegal in almost all countries around the world.
Cases of commercialisation have reportedly happened in Pakistan, India, China, Egypt, the Philippines, Israel and some South American countries. Kidneys taken from executed prisoners are also sometimes sold.
Dr Harjit says that the local people also need organs but are denied because it has become a question of who has the money.
“Why do only the rich have a right to live? What price are we going to put on human organs? Will the price of an organ from an 18-year-old boy be worth more? We are degrading ourselves by putting a price on organs,” he says.
Because it was considered to be a huge problem, a group of leading medical experts from around the world met in Istanbul, Turkey in 2008 to develop strategies to prevent organ trafficking and transplant tourism.
They came up with the Declaration of Istanbul to inform, inspire and promote ethical practices in organ donation and transplantation throughout the world.
India and Pakistan subsequently came up with legislation to ban such practices.
Datuk Dr Jacob George, president of the Consumers Association of Subang and Shah Alam (CASSA), says that guidelines contained in the Istanbul Declaration should be strictly adopted by the Malaysian government, leaving no loopholes to clinical predators, businessmen surgeons, private hospitals and their industry to promote transplant tourism in the country.
He claims there are some organ transplant players in the country monitoring the situation.
“Don’t assume that it can’t be done. All you need is a team of rogue surgeons. Sometimes, it is the respected people who might be behind it,” he adds.
Agents promoting transplants are only known to those who are undergoing treatment such as dialysis and their activities are conducted covertly these days, unlike in the past.
A manager of a dialysis centre says they used to get pamphlets on overseas organ transplants two years ago but not anymore.
Dr Harjit says more often, the patients who have had transplants overseas will pass the information to other patients in need.
Chan Ming Ren* can attest to this fact. His brother was 41 when he had a kidney transplant in China about two years ago. He got the contact from a person who underwent a similar transplant.
Chan says the initial check-up was done in Guangzhou and after getting a match the person selling his kidney was brought to a hospital two hours’s drive away.
At this hospital, Chan says, there were many Europeans and Africans also waiting for kidney transplants.
The sellers, meanwhile, were all men in their early 20s, says Chan. There were two other Singaporeans and a Malaysian teenager who underwent kidney transplants at the same time as his brother.
“It is all done in proper hospitals although it’s very secretive,” he says, adding that all the patients were given fake names.
Chan says his brother could see the surgeons performing the surgery on the kidney seller before it was transplanted onto him. The surgery was over in four hours while the whole process from start to finish was completed in a fortnight, costing him RM180,000. His brother’s transplant has been a success so far, and he is now able to work, says Chan.
“Before, he couldn’t even drive unless he had his dialysis,” he says, adding that his brother spent almost RM200,000 on treatment before the transplant.
Chan believes in the concept of willing seller and buyer. He also insists that those selling their organs were not poor.
“They are materialistic. These youngsters want handphones, laptops and other gadgets,” he says.
He does agree that it is sad that they would resort to selling their organs.
Inspired by his brother’s transplant, Chan tried his hand at becoming a local agent, establishing contact with Chinese agents. But his venture was short-lived when his first customer was denied a transplant because of frail health. That customer then told other people not to trust Chinese doctors.
When asked if it was possible to meet an agent, Chan says it was impossible to do so these days.
“He won’t meet you. He won’t even talk to me. Only my brother can call him,” says Chan, adding that his brother’s agent went into the business after his wife had a kidney transplant about five years ago.
More donors needed
The problem of transplant tourism goes back to the willingness of the public to donate their organs. National Transplant Resource Centre (NTRC) chief co-ordinator Datin Dr Lela Yasmin Mansor says it is a well-known fact that there are not enough organ donors in the country although awareness is rising.
“Compared even to orthodox Muslim countries like Saudi Arabia, we are lagging behind.
“The organ donor rate is 1.4 per million population last year in Malaysia.
“The majority of transplants here involve living related donors. We have so many potential donors but we are not able to procure the organs,” she laments.
Dr Lela says the country should take every step to be self-sufficient in the procurement of organs. She notes that fatal road accident cases could be a good source of organ procurement as many of those involved are young and usually healthy (free from disease).
“That (not being able to procure the organs) is a double tragedy in itself,” she notes.
* Not real name
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