KUALA LUMPUR, Feb 14 — Every day, thousands of Malaysians wait for the lifesaving transplant they desperately need.
Whether it is a kidney, liver, or heart, the demand far exceeds the supply, leaving patients to endure prolonged suffering and, in many cases, an untimely death.
Manvir Victor spent over a decade on dialysis before his wife donated her kidney to save his life.
His story is one of many that shed light on Malaysia’s struggling organ transplant system — a severe shortage of donors, outdated processes, and a lack of public awareness.
“Only a small fraction of transplants are cadaveric (deceased donors); the rest rely on living donors.
“Socso (the Social Security Organisation) predicted dialysis treatment costs to hit half a billion ringgit by 2030, and this cost can actually be cut down if we had more transplants instead of treatments.
“The pledge and donation system is outdated. Communication and transparency remain major issues, while the National Transplant Resource Centre (NTRC) still operates with an antiquated approach. I recall trying to get some answers while waiting for a kidney. When someone finally picked up, they couldn’t even tell me where I stood on the waiting list,” he said to Malay Mail.
The long wait for a new life
Ir Muhd Suffian, 32, had been waiting for a kidney since he was 15.
His health issues became evident when his energy levels dropped drastically at school.
Ir Muhd Suffian has a slight deformity due to more than a decade-long dialysis treatment. He has a new kidney and is happily married with two kids aged 10 and eight. — Picture by R. Loheswar
He remained on dialysis until he finally received a transplant last year, but the long wait left him with physical deformities.
“When you’re on dialysis for a long period, you risk having brittle bones, and they bend out of shape. I didn’t have as happy a childhood as I couldn’t do the things normal kids could do. Eventually, I got my kidney transplant on the third attempt. Hospitals usually have three people on the list, and whoever is available undergoes the operation.
“Public awareness on organ pledging is still lacking. Families of pledgers often deny consent at the hospital, preventing transplants. This remains a major issue,” he told Malay Mail.
A dire shortage
Malaysia has an extremely low organ donor pledge rate — less than one per cent of the population.
The global benchmark for a functional organ donation system is 20 per cent.
According to data from data.gov.my, Malaysia recorded only 15,486 new organ donor pledges in 2024, the second lowest since 2019, when pledges stood at 15,272 at the onset of the pandemic.
The numbers peaked at 51,734 in 2022, post-pandemic, but dropped significantly to 28,367 in 2023.
Manvir Victor, organiser of advocacy group Wira Transplant, at their monthly walk in Taman Tasik Titiwangsa. The group meets every last Sunday of the month where patients and doctors can mingle and ask important questions regarding organ transplant. — Picture by R. Loheswar
Malaysia currently ranks among the top 10 countries with the lowest organ transplant rates in the world, with only 20 to 40 cadaveric transplants performed annually.
The challenges of dialysis
For kidney patients, undergoing five to six-hour dialysis sessions feels like running a marathon.
The treatment drains their energy, requiring hours of recuperation.
Medication and dialysis costs are also high, making transplantation the best option for long-term survival.
An outdated system
Transplant surgeon Dr Vijayan Manogran told Malay Mail during a weekend walk with Wira Transplant Malaysia — an advocacy group assisting those in need of transplant information and support — that Malaysia’s organ pledge system is outdated and lacks sufficient awareness campaigns.
Dr Vijayan Manogran has done more than 500 liver transplants so much so he threw his back out one day due to the long hours of standing and operating over patients. — Picture by R. Loheswar
Dr Vijayan, who has performed over 500 kidney transplants, lamented the lack of structured incentives for transplant surgeons and the absence of proper awareness campaigns.
“For every other field, we wait for promotions. However, cardiologists, cardiothoracic surgeons, and cardiac anaesthetists get fast-tracked because there’s a shortage. But for liver and kidney transplants, there are no incentives. This causes some talent to leave for better opportunities.
“We need to fix the system and involve the corporate sector by making organ pledges part of their CSR (corporate social responsibility) initiatives. Additionally, we lack advertising and promotional materials. Why not have a 20-30 second ad in cinemas before movies promoting organ pledges?
“Airports have long waiting times and numerous screens. Running awareness campaigns there would be highly effective, as well as on prime-time TV. We also need to reform and expand the role of the NTRC, as it has never evolved with the times,” he said.
Dr Vijayan added that efforts to update organ donation policies have been ongoing since 2008, but no significant changes have been made despite repeated proposals.
“There needs to be some foresight and flexibility. The Communications and Digital ministries should take part in these awareness efforts too. Right now, all proposals for improvements are stuck at the ministry level with no one taking up the cause,” he said.
Overcoming religious and cultural barriers
Heart transplant recipient Mohd Asri Zulkipli, 62, received a new heart in 2011, after waiting almost six years.
He had undergone valve replacement surgery in 1987, received a pacemaker in 2005, and was finally listed for a transplant.
Transplant recipients and those wishing to learn about organ transplant meet every last Sunday of the month at Taman Tasik Titiwangsa for a walk and then talk about transplant in Malaysia together with local doctors and surgeons. — Picture by R. Loheswar
He eventually received a heart from a Chinese donor in Penang, but not without setbacks.
“The second time I was on standby for a heart, I was on the way to Terengganu. Since a heart can only be used for four to six hours once removed, IJN told me to continue my trip. When I finally got the call, I was in my office. I told my family to meet me at the hospital, and the last thing I remember was falling asleep when the anaesthetist arrived.”
“Waiting for an organ wasn’t pleasant and you tend not to think about it you know? It’s hard to live like that because you’re always hopeful but you know due to the low pledges and difficulty in finding a perfect match (blood type, size and other factors play a part) it may never happen.”
He said many Malaysians remain unaware of organ pledging, and campaigns are often limited to major cities.
“In Malaysia, many people don’t even think about pledging. Awareness campaigns are only in major cities like Kuala Lumpur, Penang, and Johor. Why not go to the kampung? Many rural Malaysians, especially Muslims, believe organ donation mutilates the body and will leave them incomplete in the afterlife. We need to correct these misconceptions.
“Even patients at dialysis centres often don’t know about organ donation as an option. Religious concerns are a barrier for some, but those who understand the medical benefits are usually open to donating,” he said.
The numbers speak
According to the Derma Organ website, only 82 cadaveric organ pledges were made in 2024.
There are currently 9,957 adult patients and 309 children waiting for kidney transplants, four adults and five children waiting for livers, 17 patients waiting for hearts, six waiting for both a heart and lung, and one waiting for a lung transplant.
Dr Husniza Omar took time off to meet with members from Wira Transplant Malaysia and gave invaluable advice on liver care. — Picture by R. Loheswar
Since 1975, Malaysia has performed only 3,298 transplants, while organ and tissue donations after death since 1976 total just 3,024.
One major reason for the low numbers is that many pledgers do not inform their families.
When the time comes, grieving families are often reluctant to give consent.
Dr Vijayan advised that pledgers should notify their families.
“Many times, families only find out at the hospital that their loved one was a donor. In that moment of grief, it’s hard to explain that the body is treated with utmost respect and that organ donation does not lead to mutilation or affect the afterlife.
“A single donor can save up to eight lives by donating the heart, lungs, liver, kidneys, eyes/cornea, heart valves, bones, and skin,” he said.
Doctors and surgeons attend the monthly Wira Transplant Malaysia walk at Taman Tasik Titiwangsa to provide guidance to patients.
Organ donor pledge FAQ flyer from MOH.
Over the weekend, Malay Mail met Dr Hanizah Omar from Selayang Hospital’s Hepatology and Gastroenterology Department and nephrologist Dr Wan Mohd Rasis Wan Ahmad Kamil from Prince Court Medical Centre, both of whom volunteered their expertise.
Kidney recipient Ravinder Singh, who also attended the walk, suggested introducing takaful coverage to encourage organ pledging.
“Social insurance or takaful can help. A base coverage of RM20,000 in case of death or total permanent disability, with an additional RM30,000 upon successful transplantation, could incentivise families to pledge,” he said.
How to pledge?
Malaysians can now pledge via MySejahtera in under 30 seconds.
- Log in to MySejahtera
- Click on the organ donation pledge icon
- Choose a primary username
- Click “I want to pledge” and answer the questions
- Click submit and refresh your profile to see the pledge card
For more information, Wira Transplant Malaysia holds monthly meetups at Taman Tasik Titiwangsa on the last Sunday of every month at 7:30 am. Join their Facebook group for updates: Wira Transplant Malaysia Facebook Group
Related reading:
Fifty years after kidney transplant breakthrough, Malaysia’s organ donation still stuck in first gear
