KUALA LUMPUR, Nov 2 — As strange as it sounds, the noble act of organ donation has never really captured the imagination of Malaysians in the way it should.
It is a well-documented that organ donation rates in Malaysia are nowhere near where they should be.
One of the more damning statistics tells us that Malaysia’s organ and tissue donation rate stood at 1.0 donations per million population in 2015.
This is the highest rate for a number of years but the perspective changes when the numbers are placed in a global context. Spain has 34.35 donations per million population, the United States has 25.49, and Singapore has 5.00.
Up to end of September, 362,450 Malaysians had pledged to donate their organs after death, representing only 1.2 per cent of the population.
In an attempt to boost the organ donation rate, the National Transplant Resource Centre started the Organ Donation Awareness Week, an annual campaign since 2014.
Held nationwide, the initiative features various outreach programmes to make people more aware of the importance of organ donation. This has largely succeeded.
In 2013, 28,105 new donor pledges were recorded. After the awareness week campaign was launched, 42,861 pledges were recorded in 2014 and 49,758 were recorded the following year.
From these totals, 56 tissue and organ donations were recorded in 2014. This number then skyrocketed to 71 the following year, the highest total since 1976.
The campaign appeared to have a direct effect on the public’s mindset. In 2014, more than 5,000 new donors pledged on the first day and the number doubled by the end of the week.
Last year, over 7,000 pledged on the first day and despite reduced funding this year, the campaign recorded 8,204 new pledges on the first day.
Donations dropping in 2016
Worryingly, however, is that the situation appears to have taken a turn for the worse in 2016. For the first nine months, only 19,330 pledges were recorded.
A total of 26 donations were carried out and only five were organ donations. Considering that Malaysia has a population of over 30 million, the numbers do not make good reading.
“We appear to be plunging down a steep precipice,” said the centre’s chief clinical manager Datin Dr Fadhilah Zowyah Lela Yasmin Mansor.
Why are numbers dropping?
The authorities’ awareness efforts are focused on spreading accurate information. Ironically, their biggest foe appears to be information of another kind.
Sensationalised social media posts are feeding the public lies, claiming that donated organs are being stolen and sold on the black market.
Shocking and false stories of how children are being kidnapped for organ harvesting have also made the public wary of pledging.
This is despite repeated denials by the authorities and the police.
“These things simply don’t happen in Malaysia. The police have told us over and over that these stories are untrue,” said Dr Lela.
“But people want to believe the negative stories, especially on social media. Changing this outlook is the challenge we face.”
Bleak outlook for kidney treatment
The drop in organ donors could be especially bad for kidney patients. Up to end of September, 20,664 people are still waiting for organs. From this total, 20,642 are kidney patients.
The situation is bleaker because transplants are the best treatment option for kidney patients, vastly outweighing the benefits of the often-preferred dialysis.
According to Kuala Lumpur Hospital Department of Nephrology head, Datuk Dr Ghazali Ahmad, Malaysians are still unaware that treatment programmes for kidney disease are almost exclusively focused on dialysis.
The numbers back him up as more than 95 per cent of kidney patients are given dialysis treatment. In 2014, 35,580 patients were living on dialysis while only 1,844 patients had a functioning kidney transplant.
In 2005, the number of Malaysians on dialysis was 504 per million population. By 2014, the number had more than doubled to 1,155 per million population.
Conversely, the amount of kidney patients with transplants in 2005 stood at 65 per million population, and has largely stagnated since then.
This is surprising, as experts like Dr Ghazali argue that transplants are a better alternative to dialysis in several ways.
“The survival rate for dialysis patients is 50 per cent over the first five years. For transplant patients, 75 per cent of their kidneys function for over 10 years,” he said.
Dialysis patients undergo treatment three times a week for four hours at a time, which can be an inconvenience.
They are susceptible to complications if they do not control their food and drink intake and are indisciplined in the 48 hours-post treatment.
It is significantly more difficult for women under dialysis to conceive or give birth safely, but there are no issues for transplant patients.
Dialysis patients face a productivity problem. Due to their treatments, some are unable to work full-time which is a problem for their employers.
Over time, complications from dialysis increase as the blood is not fully cleaned. The toxins in the body can cause blood, cardiovascular, and bone problems among others.
Based on a 2003 Health Ministry study, it costs RM33,000 to maintain a dialysis patient per year. The cost to support a transplant patient is half this amount after the first year of a successful procedure.
While the first six to 12 months after a transplant can be expensive, the costs are minimal after that period.
There are several added costs for dialysis patients, including transportation to and from the treatment centre, additional medication, and treatment for complications.
Relative to its population, Malaysia has a large number of haemodialysis units, which stood at 758 as of 2014.
Compare that to the United Kingdom (population of 70 million), and Thailand (population of 66 million) who have less than 400 units.
To Dr Ghazali, this is symptomatic of the Malaysian people’s focus on dialysis.
He argues that no country can continuously fund dialysis, as even the Obama administration had to rethink its approach to dialysis after spending US$30 billion (RM125 billion) on the treatment last year.
“I am not trying to criticise anyone. But when it comes to kidney treatment programmes, public awareness is almost 100 per cent centred on dialysis,” he said.
“People say we have economic and budgetary problems. If so, it is logical to channel our funds to a treatment programme that is more cost-effective, provides more quality, and has a capacity for patients to live longer,” he said.
Attitudes need to change
For the transplant method to gain traction, however, more Malaysians need to realise the importance of organ donation.
Organ donation rates need to increase so transplants become a more viable option.
“If not, more kidney patients will need dialysis and the demand for centres will rise. The government will need to spend on more and more centres,” said Dr Ghazali.
Organ donation is a noble act, and in the case of kidney disease, it is also the best solution.
It falls on every Malaysian to make the choice which could possibly save the life of someone we care about. Will we choose correctly?
