There is a widening gap between organ demand and availability in Malaysia, while the struggle to reduce reliance on dialysis for end-stage renal disease continues.
Malaysia, a rapidly developing Southeast Asian nation, is grappling with the rising burden of chronic kidney disease (CKD), ranking among the top countries globally for end-stage kidney disease (ESKD) prevalence. With 1,584 per million population (pmp) receiving treatment for ESKD, Malaysia's rate is more than three times the global average. This statistic highlights the urgent need for effective kidney disease management, as ESKD leads to irreversible kidney failure which requires lifelong dialysis or transplantation to sustain life.
Treatments for end-stage kidney disease
There are three primary treatments for ESKD, which are hemodialysis, peritoneal dialysis, and kidney transplantation.
Hemodialysis typically involves inserting a large needle into the patient’s arm and using an artificial kidney to filter the blood, usually three times a week for three to five hours per session.
Peritoneal dialysis, often done at home, requires a permanent catheter in the abdomen through which dialysate is infused several times daily to absorb waste and excess fluid before being drained.
Kidney transplant recipients have a significantly higher survival rate and better quality of life compared to dialysis patients. On average, transplant recipients live three times longer than those on dialysis, who face higher risks of cardiovascular complications. For instance, the life expectancy of a 30-year-old dialysis patient is around 15 years, but it can extend to 30 years if the patient receives a kidney from a deceased donor. A transplant from a living donor can increase life expectancy by up to 40 years.
Despite these benefits, Malaysia faces a severe shortage of organ donors and ranks among the lowest globally in deceased donor rates with only 0.7 donations pmp recorded in 2022. Although kidney transplantation was introduced in Malaysia in the 1970s, with the first living donor kidney transplant in 1975 and the first deceased donor kidney transplant (DDKT) in 1976, the country struggles to recruit donors.
Over the past decade, Malaysia has performed only 80 to 180 kidney transplants annually, which translates to a rate of just 2 to 5 pmp, far below that of its regional counterparts such as Singapore, Hong Kong, South Korea, and Taiwan at 14 to 17 pmp, and significantly trailing behind Australia and Western nations at 40 to 60 pmp.
Existing transplant system in Malaysia
According to Dr Mohammad Zaimi Abdul Wahab, President of the Malaysian Society of Transplantation and transplant nephrologist with Hospital Kuala Lumpur (HKL), Malaysia, Malaysia’s low kidney transplant numbers stem from several enduring challenges that limit transplant procedures in the country.
Kidney transplants are performed in three types of healthcare institutions: public hospitals under the MOH, university hospitals under the Ministry of Education (MOE), and private hospitals. However, the country’s transplant capacity is severely constrained by resource and infrastructure limitations. “Only two public hospitals in Malaysia perform kidney transplants. Both are located in Kuala Lumpur, and staffed by only two transplant surgeons. The acute shortage of specialized professionals lead to overwhelming workloads at these centers,” Dr Mohammad Zaimi says.
Further complicating the issue is the absence of a cohesive national transplant strategy and the lack of integration between government and private institutions, which tend to operate independently. The cost of transplantation also varies widely across healthcare settings, with costs of procedures being minimal at public hospitals and prohibitively expensive in private institutions, making access to transplants highly uneven.
Another hurdle is the limited availability of immunology laboratories for tissue typing, which presents logistical challenges in matching donors and recipients. Dr. Mohammad Zaimi points out that the widespread availability of dialysis, while widely accepted as a life-sustaining treatment, inadvertently reduces the urgency of transplants. Many patients survive on dialysis for years while waiting for a transplant, further delaying necessary systemic changes.
These factors combined have left Malaysia’s kidney transplant rate stagnant for years, despite transplantation being the best and most cost-effective treatment for kidney failure. “The average waiting time for a deceased-donor kidney transplant now exceeds 10 to 15 years, and many patients do not survive the wait. Without a unified, long-term strategy to strengthen and expand the country’s transplant infrastructure, progress in this critical area of healthcare will continue to be impeded,” explains Dr Mohammad Zaimi.
Living donation: current practices and barriers to organ donation
In Malaysia, living kidney donors are typically first- or second-degree relatives or legal spouses. Any potential donor outside these categories must obtain approval from the Unrelated Transplant Approval Committee under the MOH. The National Organ, Tissue, and Cell Transplantation Policy (2007) explicitly prohibits the commercialization of organ donation.
Dr Mohammad Zaimi emphasizes that any case of an unrelated donor, for example a friend, must be reviewed and approved by the MOH Unrelated Transplant Approval Committee to ensure the consent of the donor has not been obtained under duress or through exploitation, a practice which protects potential donors.
Living kidney donors undergo thorough medical and psychological assessments to ensure they are healthy, fully informed, and willing to donate. The donation is not approved if doubts arise or if it poses risks to the patient and/ or donor.
Upon approval, donors receive expert surgical care, pain management, with lifelong check-ups after donation. Public hospitals cover or subsidize evaluation, surgery, and hospital stays, which considerably reduce if not eliminate financial burden on donors. With strict ethical and clinical safeguards in place, donor safety remains a top priority in recognizing donors’ contributions.
Malaysia has established legal and policy frameworks supporting organ donation such as the Human Tissues Act (1974) and the Consensus Statement on Brain Death (2003). The country has also made progress in transplantation by performing ABO-incompatible and HLA-incompatible transplants using advanced desensitization protocols, leading to favorable clinical outcomes.
As Malaysia is a signatory to the Declaration of Istanbul, which opposes organ trafficking and transplant tourism, organ trafficking is virtually non-existent in the country. Another notable development was the introduction of an organ donor pledge feature in the national MySejahtera mobile application, making organ donor registration more accessible than before.
Despite policies protecting potential donors, and facilities and regulations supporting organ donation, there are barriers discouraging people from donating their kidneys. Dr. Mohammad Zaimi explains, "The foremost concern is personal health and well-being. Many potential donors worry about surgical risks and whether living with one kidney will affect their long-term health,” he says. “They often ask whether donating a kidney will increase their risk of future health issues or reduce their lifespan. It is our responsibility to reassure them with clinical evidence that healthy donors can live full, normal lives post-donation, and to ensure the medical process is as safe as possible.”
Many potential donors may also face financial burdens related to the donation process. “A donor may need time off work for surgery and follow-up appointments, raising concerns about lost income during recovery or the cost of post-operative care,” explains Dr. Mohammad Zaimi. Without sufficient financial support and logistical assistance, people are more likely to decide against organ donation.
Cultural and religious factors in Deceased Donation Kidney Transplants (DDKT)
Donation of kidneys by the deceased in Malaysia remains underdeveloped, with only 30 to 40 DDKTs performed annually, at the rate of 0.9 to 1.1 pmp.
Religious beliefs significantly influence attitudes toward organ donation. Despite the official endorsements of organ donations by major religions in Malaysia, misconceptions persist, particularly among Malay Muslims, who account for the majority of ESKD cases and DDKT recipients.
“A national religious ruling or fatwa issued in 1970 declared organ donation as ‘harus’, which means encouraged in Islam whenever the need arises, but many Muslims remain unconvinced,” Dr Mohammad Zaimi adds. Concerns about donating to non-Muslims, the perceived desecration of the body, and the importance of being resurrected intact in the afterlife contribute to low donation rates among Malay Muslims.
While attitudes toward organ pledging are generally positive, superstitions such as the fear that the deceased can feel pain during organ retrieval, and the notion that pledging to donate one’s organs may invite bad luck, deter potential donors.
As a result, families are often reluctant to consent to donation when a loved one dies. This reluctance is compounded by Malaysia’s opt-in system, which requires family consent for organ donation, so even if an individual has registered as a donor, their next-of-kin can veto their decision at the time of death. There is also low public awareness on the opt-in system for organ donation, further limiting potential donations.
Future efforts to promote organ donation in Malaysia
"Public awareness campaigns are a driving force in addressing Malaysia’s transplant challenges. The more informed the public, the more likely they are to register as donors, consent to donation of a relative’s organs, and consider donating a kidney themselves," says Dr Mohammad Zaimi. Awareness campaigns remind people that organ failure can happen to anyone regardless of age, race, or religion, and transplantation is a second chance at life.
Public education on challenges in organ donation and transplantation have been targeted at the Malay Muslim population through public forms paneled by imams and Friday sermons at mosques. Advocacy also focuses on the youth through social media and educational institutions. Conversely, when efforts to raise awareness lapse, misinformation and apathy take over, which is why the MOH and the MST will continue to intensify outreach programs.
“We will mark occasions such as Organ Donation Week and World Kidney Day with high-profile events, and sustain dialogue through radio, TV, and online platforms year-round. Our strategy includes culturally sensitive messaging; for instance, highlighting that organ donation is an act of charity encouraged by all faiths, and showcasing Malaysian role models such as organ donors or celebrities who advocate for donation. These campaigns aim to shift public perception to one where organ donation is a normal and expected part of end-of-life considerations, and living donation is a courageous, celebrated act of love,” Dr Mohammad Zaimi shares.
To further boost living kidney donations, Malaysia is exploring new policies and initiatives, including a kidney-paired donation (KPD) program. “Currently, incompatible donor-recipient pairs have limited options, but KPD could allow swaps between pairs to increase the potential for transplant opportunities. However, as existing policies do not yet support this approach, the MST is advocating for legal updates, while also increasing public education efforts to raise awareness and dispel misconceptions about living donation,” outlines Dr Mohammad Zaimi.
Innovative proposals, such as offering insurance benefits to donors or their families, are also being considered as a form of support to donors without directly giving financial incentives. A comprehensive approach combining policy changes, advocacy, and donor support is key to expanding transplant access and addressing donor concerns.
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