LEE Leong Kim and his wife, Hernawati Subli, were featured holding hands and smiling happily two months ago on the front page of this newspaper when they shared their story on being the first ABO-incompatible transplant patients in the country when Hernawati successfully donated her kidney to Lee.
Their story chalked up a medical milestone for the country as their doctors achieved what had been thought of as medically impossible.
In a telephone conversation on Thursday, Lee, 57, said he was undergoing normal post-op care while his wife, fondly known as Herna, 34, is now active and back at work at the couple's tour and travel business.
But before the operation, Lee, who had been diagnosed with chronic renal failure in 2009, was keen to ensure that Herna's welfare was taken care of in case anything happened to him.
He also wanted to ensure that if she fell sick, she would get the best medical care possible and would not be left dependent on the state in the face of rising medical costs. This was also especially important as they have two young boys aged 7 and 8.
Hence, Lee went about to ensure that Hernawati had sufficient insurance coverage, but he was shocked to discover that his wife might not be eligible for any insurance coverage any more.
An insurance company, which had taken an annual premium payment of RM3,500 (S$1,432) from the couple when they signed up in June, was unable to confirm if their policy had been approved after Lee told them that Herna had undergone a donor transplant operation.
"We paid them RM3,500 upfront about 31/2 months ago. After the operation, we updated them of the procedure, thinking that we might have to pay extra because she now only has one kidney. But until now, there's no news if we would be approved at all."
Another insurance company told them firmly that they do not provide coverage to former organ donors.
"Because the ABO-incompatible transplant procedure is not available in public hospitals, we can only do it in private hospitals.
"So, my wife has to fork out her own money to pay for the admission and procedure to donate her organ to me.
"She is facing a future where she can't get a new insurance coverage. I think this is very unfair to someone who has generously given one of her precious organs to save another person's life."
However, Life Insurance Association of Malaysia (LIAM), in an email interview, said life organ donors, specifically kidney and liver donors, should have no problems getting any insurance coverage in Malaysia.
"If one has fully recovered after the surgery with no residual loss of organ functions, then they are eligible to apply for all insurance plans, including critical illness and hospitalisation benefit schemes."
LIAM is a self-regulating trade association with 17 members, of which 15 are life insurance companies and two life re-insurance companies. It is a statutory requirement under the Insurance Act 1996 for all life insurance or life re-insurance companies to be members of LIAM.
"However, there is a waiting period of between six months to a year from the date of the organ donation procedure to ensure that the donor has fully recovered before they are eligible for insurance coverage again.
"Donors and non-donors can receive the same type of coverage. However, if the applicant discloses a history of organ donation, further underwriting may be requested to ensure that the donor has fully recovered with no residual impairment or complications."
Asked if there was any insurance firm that preferred not to grant coverage to organ donors, LIAM replied "every insurer has their policy issuance and risk thresholds".
It is important to note that if one decides to become an organ donor and have the procedure in a private hospital, his or her medical insurance plan will not cover admission and surgical costs involved. All these costs also cannot be claimed against the recipient's insurance policy.
LIAM said: "The choice to donate an organ is optional, the decision lies in the hands of the donor. Insurance, traditionally, is priced to cover for unexpected incidents beyond the control of the insured person."
On the upside, life insurance coverage has no exclusions, meaning if a person who owns a life insurance policy dies due to surgical complications, including complications arising from organ transplant procedures, he or she will still be entitled to its death benefits. This is regardless whether the policy holder is a donor or a recipient.
Thankfully, Herna already had two life insurance policies before she and Lee found out that the ABO-incompatible transplant surgery was possible.
Although one of the insurance providers told Herna she would not be covered for any kidney-related illnesses for a year after the operation, she would still be covered if she were to fall sick for any of the other major critical illnesses as stipulated in the policy.
Hopefully, with LIAM's clarification, Herna will not face problems applying for the insurance coverage that she deserves in the future.
'Penalised' after saving another person's life LEE and Herna might only have complained about insurance coverage so far, but their case has brought to attention the myriad of issues involving the welfare of life donors.
Apparently, some donors have been "penalised" after donating his or her organ to save another's life.
Datuk Dr Ghazali Ahmad, consultant to the Health Ministry's Transplantation Unit and chairman of the National Transplant Policy, knows of a donor who was sacked from his job after he had donated a kidney to his brother.
"He was sacked without compensation.
"The employer thought he had taken too much sick leave and felt he was not fit to work anymore.
"He worked in a tyre factory and should be healthy enough to resume work after the procedure," said Dr Ghazali, who is also a member of the National Transplant Council.
Having seen such cases, it was no surprise that Dr Ghazali firmly answered "No" when asked if the welfare of life donors in Malaysia was being properly looked after.
He said there was no guarantee one would not be unfairly treated after an organ transplant procedure.
"Because the perception is that once you are a donor, you are sub-normal, handicapped or weak.
"But in published scientific studies that looked at life kidney donors, comparing them with their non-donor siblings, the donors actually live longer and are healthier."
But, he said, it did not mean when you donate, you became stronger and healthier, "but you definitely do not become weaker".
"When you have been selected as a donor, you are already the fittest of the lot(among your siblings).
"So long as you survive the surgery -- where the risk is very low -- you remain the fittest."
A lot of activities, he added, were focused on increasing public awareness on the need for more organs and to encourage people to donate, all geared towards increasing organ donation and transplantation rates, but very little, if at all, looked after the interest of donors.
"The protection of donors, checking on post-surgery complications, shortcomings in the treatment that need to be addressed, whether the donors will lose their jobs or need any help, all these seem to have been overlooked.
"You need to have somebody to register, follow up, submit data, analyse and so on.
"That means you need to have a system -- you cannot rely on impression or just experience.
"There should be a national life organ donor registry collecting data for us to study and report on the group outcome, not just on the individuals."
He said all knowledge and information we had on life donors now were based on retrospective cohort studies done in other countries.
"It may not be the same with our donors here. We need to study our own group outcome."
He said it did not help that the whole system focused only on organ recipients because of the fear of rejection, infection and complications.
In the meantime, transplant surgeons like Datuk Dr Harjit Singh, president of the Malaysian Society of Transplantation and national adviser for general surgical services, opined that there was a myriad of "hidden" issues involving living donors that had not been properly looked into.
He cited instances of donors going into depression because of various surgical complications and failed marriages after the procedure.
"There is more to (life organ) donation and transplantation than what our eyes can see."
New approaches needed to increase cadaveric donations DATUK Dr Harjit Singh, a hepatobiliary and liver transplant consultant surgeon at Selayang Hospital, said if his liver failed, he would rather die graciously than go for a transplant. Because a life donor would most likely be needed -- given our low rate of cadaveric organ donors -- Dr Harjit does not wish to subject any of his loved ones to the risk and possible complications of a liver transplant surgery to save himself.
Many people, he said, did not realise that life liver donation is not as simple as going for a haircut.
"It's much more complicated than kidney transplant and the (donor) morbidity rate is higher.
"There can be many complications after surgery, including those related to surgical incision and bile duct damage.
"I will not subject my loved ones to all that."
That said, he believes Malaysia has plentiful "organ resource" that has not been fully utilised -- the 6,000 to 7,000 people who die in traffic accidents yearly who are a good potential source for cadaveric organs, providing the family agrees to it.
But efforts to gain more cadaveric organ donor pledges have been hampered by public misconceptions, including the belief that cadaveric organ donors will not get full medical treatment when they are admitted into a hospital for any emergency because their organs are needed.
"We keep telling them that their treatment won't be affected by this decision because different groups of people are involved.
"I am a transplant surgeon and I don't go and certify anybody dead and say this is an organ donor.
"Someone else does it. There is no bias."
Currently, unrelated life organ transplants are not exactly outlawed in Malaysia, but are strongly discouraged under the guidelines provided in the National Transplant Policy.
In view of the lack of laws on this issue, the Health Ministry said last October it was drafting a new law on organ donation and transplant, as well as to curb illegal sale of organs.
One of the considerations was to allow unrelated life organ donations, a move that could potentially save more than 36,000 lives.
But Dr Harjit is against this because he feels it would open up "a pandora's box" -- organ trafficking, among others.
Already, Malaysia was reported last Wednesday as being among several countries in the radar of the Bangladeshi police hot on trail of an international syndicate linked to illegal kidney trade across several countries in Southeast Asia.
Dr Harjit also cited cases in India and China where wealthy foreigners visited the country, married young girls, got their kidneys, and divorced them before returning home.
Hence, he said the right way forward should be cadaveric donations.
"If a person wants to donate and help save lives, just sign up as a cadaveric donor.
"That will be more beneficial to our community."
Hospital Kuala Lumpur's Datuk Dr Ghazali Ahmad suggested one way Malaysia could increase its supply of cadaveric donors was by implementing the "mandated choice" approach, where we will have to state whether we are willing to be donors when applying for, say, a driving licence.
"This will help us tap into the right pool of people who will be drivers and potential road accident victims.
"This will be more practical than looking at donor pledgers now who are mostly school kids and university students, who will likely lead healthy and long lives."
Meanwhile, Dr Harjit said it was also time to check our increasing demand for organs.
"We're not taking care of our health the way we should.
"We are adding to the demand for more organs because we are damaging the ones we have with our unhealthy lifestyle.
"People must be made aware that some organ failures are preventable."