KUALA LUMPUR – Dialysis patient Siva Kumar Raghavan, 54, has been waiting eight years for a kidney donor, but knows it is near-impossible to get one.
The wait has shown him how weak the country’s organ transplant ecosystem is, the founder of Wira Transplant Malaysia told Scoop.
The ecosystem, from donation pledges to the need for more medical specialists in the field, needs a revamp, added Siva Kumar, who is a business coach.
He currently lives on one good kidney, donated by his wife in 2012, in what was Malaysia’s first organ transplant between people of different blood groups.
However, due to immune system complications, Siva Kumar underwent dialysis and needed another kidney in 2016. Unable to get a living-related donor, his hopes lie in receiving a kidney from a cadaveric donor.
“I look for ways to be healthy and to live long because I know it’s impossible for me to get a cadaveric donor,” Siva Kumar said.
His group Wira Transplant Malaysia advocates for the importance of organ transplantation, and this includes pushing the Health Ministry to make drastic changes needed to increase the rate of transplantations in the country.
“The entire ecosystem of organ transplants starts with donation pledges and families of a patient agreeing to donate.
“Is the Health Ministry providing enough training for its staff to approach family members in ICUs and emergency departments to inform them positively about organ donation?
“This could see an increase in the number of donors which could be converted to a higher number of transplants done.
“Then there must be enough nephrologists to follow up with organ recipients. So it’s the whole ecosystem,” Siva Kumar said.
The Health Ministry also needs more organ transplant surgeons, achievable by providing available surgeons additional training, he added.
Dialysis patients lack information on transplants
Meanwhile, World Health Organisation patient advocate Manvir Victor, agrees the low rate of kidney transplants in Malaysia is due to a lack of proper frameworks and resources by the Health Ministry.
Victor said the Health Ministry has failed to disseminate clear information to patients on the processes and systems that are in place for organ transplants, effectively denying those in need of transplantation procedures from accessing the medical services needed from government facilities.
“I have helped other patients who needed transplants and plugged them into the system.
“In fact, some of them who were Health Ministry doctors, reached out to me to find out how to get organ transplantation done.
“The information on organ transplant procedures is not clear,” Victor, who is a kidney transplant patient, told Scoop.
Because the necessary information is not properly transmitted to patients, the number of organ transplants done in Malaysia is relatively low, he added.
According to Victor, the Kuala Lumpur Hospital (HKL) performed 110 kidney transplants last year – the highest number done in any Malaysian government medical facility.
“The thing is, there are 49,000 patients undergoing dialysis. By 2030, that number will be up to 100,000,” Victor said.
Statistics on organ donation and transplantation in Malaysia show that there are 9,254 patients currently on the transplant waiting list, as of June 2024, according to the National Transplant Resource Centre (NTRC) which is under the Health Ministry.
Of the total on the waiting list, 8,828 are adults and 398 are children, all waiting for kidneys.
While there are a total of 388,646 organ donor pledgers since 1997, only 924 donors have died since 1976, and only 2,913 organ and tissue donations have been made since 1976.
Since 1975, only 3,198 transplant surgeries have been conducted in the country, according to NTRC.
Lack of organ transplant specialists
Hospitals with the ability to perform kidney transplants should be able to do one procedure a day, but Victor points out there are not more than ten doctors in Malaysia who are qualified to do so.
In Malaysia, the only government facilities that currently can perform kidney transplants are HKL, UiTM Hospital, Selayang Hospital and University Malaya Medical Centre.
A former medical officer with the Health Ministry who did not want to be identified agreed that issues regarding organ transplants in Malaysia revolve around a lack of trained staff and facilities.
Further, this has resulted in healthy organs from donor cadavers being wasted because the doctors who can perform the procedures were not available, the source said.
The source, a transplant doctor no longer with the civil service, told of one incident where an organ donor pledger who died after meeting an accident did not have his organs harvested, as there was no transplant specialist available at the time.
“We just don’t have enough resources. At the moment there are only four government facilities that have transplant centres.
“Additionally, transplant centres have limited operations because there are limited surgeons and transplant nephrologists, as well as a lack of immunology lab support,” the source said.
Additionally, while there are a handful of private hospitals licenced to perform transplants, patients would require a lifetime supply of immunosuppressants which are only covered via insurance for three months.
There can be solutions, however, to problems with organ transplant procedures in the public sector if the Health Ministry is willing to work with the private sector, the doctor added.
Doctors from private hospitals could be roped in specifically for such operations in government facilities when needed.
“The Health Ministry should see if doctors from the private sector also want to operate in government facilities.
“If we can get them on the ‘on-call’ roster, we can solve a lot of problems.
“Because, if we take kidney issues as an example, in the long run, it’s actually much cheaper to perform transplants than put them on dialysis,” the source added. – September 24, 2024