KUALA LUMPUR, April 13 – Half of all dialysis patients in the country may never have the opportunity to receive a life-saving kidney transplant, according to an expert.
Despite there being around 50,000 dialysis patients in Malaysia in 2021, only a fraction – 1.6 per 1,000 patients – received a kidney transplant, largely due to a severe shortage of available organs for donation.
Dr Mohamad Zaimi Abdul Wahab, a consultant nephrologist at Hospital Kuala Lumpur (HKL), recently spoke with CodeBlue and revealed that approximately 15 per cent of dialysis patients in the country pass away each year.
He went on to explain that for patients unable to receive a kidney, nearly half of all those on dialysis would not survive beyond the five-year mark.
“If you look at our registry, it is easily accessible on our Malaysia Society of Nephrology (MSN) website. Under the National Renal Registry (NRR), we lose about 15 per cent of our dialysis population every year. However, if someone starts dialysis this year, approximately half of that cohort will pass away within the next five years.
“Kidney transplantation, on the other hand, can double the lifespan of these patients compared to remaining on dialysis.
“That is how effective a transplant can be. For those currently on dialysis, almost 50 per cent of them will pass away within five years. That’s how critical it is (to expand access to kidney transplantation),” Dr Zaimi said. “But many people seem unaware of this fact.”
According to Dr Zaimi, a recent meeting of the Ministry of Health’s (MOH) Nephrology Services revealed that patients in need of a deceased donor kidney – people who are declared to be brain dead and their organs are in good condition to be donated – can expect to wait an average of 13 to 15 years for a transplant.
“This is an area where we are currently struggling due to a low donation rate,” explained Dr Zaimi. “Our recent data, presented during the National Nephrology MOH Services meeting, showed that the average number of years that the patient needs to wait for a deceased donor at the moment is still about 13 to 15 years.”
Based on MSN data in their 29th Report of the Malaysian Dialysis and Transplant Registry 2021, Malaysia has 49,770 prevalent dialysis patients and a transplant rate of 1.6 transplants for every 1,000 patients (1.6:1,000).
Additionally, data submitted to the International Registry in Organ Donation and Transplantation (IRODaT) shows that Malaysia has conducted a total of 78 kidney transplants in 2021, with 15 from deceased donors and 63 from living donors.
Due to low donor rates, Dr Zaimi said doctors have to be “realistic” about who is allowed onto the transplant list to receive kidneys from deceased donors.
In contrast to other countries such as the United States, where individuals between the ages of 18 to 65 (or beyond) are eligible for kidney transplants from deceased donors, Malaysia has a narrower age range. Only patients aged 18 to 60 are qualified to be placed on the waiting list for a kidney transplant from deceased donors in Malaysia.
Although there is a separate transplant list for paediatric patients below 18 years of age, individuals who exceed the age limit in Malaysia’s deceased donor kidney transplant programme are no longer eligible for transplantation unless they have a living donor.
“Due to this very low donation rate, we have to keep the list in a realistic manner, to the point that we have to limit the excess. If you look at our data for 2021, we have almost 50,000 patients on dialysis, but we have to scale down those above 60 and less than 18 years old. [Less than 18] it means they’ll go into the paediatric list group.
“So, for the adults, ages 18 to 60. Once you are 61 and above, you are not eligible for a deceased kidney in Malaysia, but of course, if you have a living donor, we’ll still do the transplant, but you wouldn’t get a kidney from someone who has already passed away because the number of kidneys is so minimal.
“Therefore, now, based on our current allocation system, despite having almost 50,000 patients on dialysis, at the moment, only about 10,000 people are eligible,” said Dr Zaimi.
Dr Zaimi said that despite having a lengthy transplant waiting list of 10,000 individuals, it is not feasible to assess all candidates as there are only about 44 kidneys available each year.
As a result, in 2019, Malaysia made slight modifications to the kidney allocation criteria in order to maximise the use of this precious resource.
Dr Zaimi pointed out that other countries such as Korea and the United States use a point system based on factors such as age, time spent on dialysis, and blood group compatibility to allocate kidneys to transplant candidates. In contrast, Malaysia has been using a single criterion for the last two decades, which is the length of time a person has spent on dialysis.
“There is a point system. Unfortunately, in Malaysia, due to logistical reasons, we have been depending on only one criterion for the last 20 years, which is the waiting time,” said Dr Zaimi.
“This means that if a person started dialysis in 2000, by 2023, they would have been on dialysis for 23 years, making them number one on the list. However, the problem with this approach is that older recipients end up being prioritised, and individuals who have been on dialysis for a prolonged period tend to develop complications associated with long-term dialysis.
“As a result, the outcomes of transplants from deceased donors were not satisfactory. This is why we shifted to a new allocation system that uses a scoring system called Estimated Post Transplant Survival or EPTS.”
The term “long dialysis vintage” refers to the length of time an individual has been on dialysis, which can range from several months to years.
The EPTS score takes into account a candidate’s long dialysis vintage, existing diagnoses of diabetes, prior solid transplants, and age. This score ranges from 0 per cent to 100 per cent, and it indicates the amount of time a candidate is likely to benefit from a kidney transplant.
Candidates with lower EPTS scores have a higher probability of benefiting from a kidney transplant.
“Based on this scoring, you identify the best 20 per cent or 40 per cent of the current dialysis population. These individuals are the patients who are expected to benefit the most from a kidney transplant and utilise the kidney most effectively.
“We adopted the EPTS scoring system introduced by the United Network Organ Sharing (UNOS) system in the United States in 2012. Now, we use the EPTS score to determine the priority of transplant candidates.
“However, after using this criteria for almost two years, we believe we need a better system to allocate the kidney in order for us to make sure that everybody understands how we are giving away all the kidneys. The information is available again on the Malaysian Society of Nephrology website,” said Dr Zaimi.
Organ Pledges Do Not Translate Into Organ Donations
Dr Zaimi revealed that despite Malaysia’s population of approximately 35 million people, the number of active pledges for organ donation is still below 300,000. However, the introduction of the MySejahtera application has resulted in a surge of pledges last year, reaching the highest number in a decade.
“Last year was the highest number of pledges ever. We hit 52,000 new pledges last year, and after the introduction of the MySejahtera app you can see an increase of almost about 250 new donors a day. So, I think it contributed a lot to the current number of pledges. But the one thing that we have to understand is pledges don’t equate organ donors. It’s two different things,” Dr Zaimi said.
Despite a surge in pledges, Malaysia’s low rate of organ donations can be traced back to the Human Tissues Act 1974, which allows surviving family members to object to a deceased’s organ donation, overriding the donor’s pledge made while they were alive.
Moreover, the organ pledge card on the MySejahtera app lacks the pledger’s digital signature, which indicates their consent, and fails to list the specific body parts the pledger intends to donate. This could strengthen objections raised by the family.
Dr Zaimi emphasises the importance of donors discussing their intentions with their families to avoid such situations.
“For me what is important to all the pledges, they should convey their wish to their relatives, to their next of kin. Because when we pass away, the decision whether we can proceed with the donation or not, all depends on the next of kin.
“I have mentioned to you earlier, we have identified 555 potential donors. It means their organs are good. Young people can contribute to another person’s life, but unfortunately, the family refuses the donation so we cannot proceed.
“And we also accounted for a few cases where the deceased is an organ pledger, but since the family is not aware, they would say things like, ‘Oh, the disease might have changed their mind at the very last minute, so we wouldn’t know what their actual wish was.’ So, the donation will not proceed. So, it’s important to inform and follow through on your pledge,” said Dr Zaimi.
Despite Malaysia’s diverse population, cultural and religious objections to organ donation are not the main reason families object to deceased family members becoming donors, according to Dr Zaimi. Instead, nearly half of all objections are due to concerns about mutilation and harming the body.
Dr Zaimi notes that the process of organ donation is no different for a deceased donor than for a living one. Surgeons treat the body with care and respect in order to ensure that the organs are in the best possible condition for transplant. After the procedure, surgical scars will remain.
“It’s just like you go for a normal surgery. You will have a scar. And we also do take bones. You can utilise bones for transplant. Even if we do take the bones, we will replace them. Basically, we try to preserve the anatomy, the normal-looking habitus of the deceased. Even when we take the eye, we put something else in place so that it will not look disfigured. Disfigurement, we try to minimise as much as we can.”
According to Dr Zaimi, families of deceased donors should not be concerned about harming their loved ones by allowing organ donation, as there is no harm involved. Rather, they should focus on the positive impact that organ donation can have.
“In certain parts of the world, where they utilise hearts quite frequently, in the United States, for example, Korea, they do many heart transplants in a year, sometimes, the family of the donor travels and locates the recipient just to listen to the heart of their daughter beating in someone else body. So, that’s how strong and the impact that you can get from just giving a new life to someone.”
To encourage organ donation in Malaysia, it is crucial to cultivate a culture of donation, Dr Zaimi said. He admits that he still hesitates to contact families to suggest organ donation if it is not family-initiated.
“This is where I hope we create more awareness on organ donation because we realise higher chances for a successful organ donation from the deceased donor, if it’s family initiated, I will call my potential recipient straight away because I know this will happen. But when they say we identify a potential donor, this is not family initiated, then I say, ‘Okay, hold on. We’ll see how it goes.’
“We’ve been trying to promote organ donation. In fact, even when I was in medical school in 1998, we’ve been trying to increase awareness. But up till now in 2023, I don’t think the level of awareness is up to the point I want them to be, unfortunately.’
