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Amendments to the Human Organ Transplant Act (HOTA)
Posted on Monday, January 21, 2008 - 09:00 PM

Parliament has approved the amendments to the Human Organ Transplant Act (HOTA) to include Muslims from 1st August 2008. With the inclusion of Muslims under HOTA, Muslims who do not opt out of HOTA will be accorded the same priority as other Singaporeans who have not opted out of HOTA. The amended HOTA will also provide MOH with the necessary enforcement powers to investigate any offence under HOTA.

Minister Khaw Boon Wan’s 2nd reading speech of the HOTA (Amendment) Bill and the closing speech made in Parliament on 21 January 2008 are below.

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Parliament Speech 21 Jan: Second Reading of the HOTA (Amendment) Bill

Mr Speaker, Sir, I beg to move, “That the Bill be now read a Second time”.

In 1987, this House, with the recommendations of a parliamentary select committee, moved the Human Organ Transplant Act (HOTA) after 2 days of debate. The debate in the House was, in turn, preceded by 12 months of public discussion and consultation, involving many stakeholders, religious bodies, professional groups, doctors, and patients. The extensive public debate was necessary as we were then breaking new ground over the sensitive and emotional subjects of organ donation, organ transplantation, brain death and the concept of presumed consent.

Prior to HOTA, organ donation was done solely through the Medical (Therapy, Education and Research) Act of 1972, or MTERA, which allowed Singaporeans to pledge their organs through an opt-in system. However globally, the experience with opt-in systems is that they have not been effective in saving many lives through cadaveric organ transplant.

Our experience with HOTA provides a good illustration. Prior to HOTA, the number of cadaveric kidney transplantations was only 5 per year, on average. With the introduction of HOTA and especially after its amendment in 2004, the rate has gone up ten times, saving the lives, on average, of 48 kidney patients every year, about one a week. Many other patients with liver or heart failure have also been saved. Many more patients have regained their eyesight through cornea transplants.

HOTA saves lives and is an important piece of legislation in our healthcare delivery system. On behalf of the many patients with organ failure, I thank Members for their continuous support of this piece of legislation. Singaporeans too support HOTA strongly. HOTA does not take away the freedom of Singaporeans to refuse organ donation for any particular reason. 1% of adult Singaporeans have opted out of HOTA. We respect their decision.

Inclusion of Muslims

However, HOTA has not been able to bring major benefits to the Muslims, as a deliberate decision was made in 1987 to exclude them from HOTA. This was because the Fatwa then required the consent of two waris (paternal next of kin according to Islamic hierarchy) for organ donation to proceed. Even so, the Majlis Ugama Islam Singapura (MUIS) made it clear that organ donation to save lives was permissible under Muslim law. Muslims who wish to donate their organs can do so by making a pledge under MTERA.

Because of the exclusion, Muslim non-pledgers are accorded a lower priority for organ transplant than non-Muslims who have not opted out of HOTA. In similar spirit, Muslims who have pledged their organs under MTERA generally need to wait 2 years before they are accorded the same priority as those who have not opted out of HOTA, if they made theirpledge after the period prescribed in the Act [1].

Unfortunately, there is a rising number of kidney failure cases among the Muslim Malays. New cases of kidney failure among the Malay population rose from 19% in 2000 to 22% in 2006. In Singapore, the primary cause of kidney failure is diabetes mellitus. According to the 2004 National Health Survey, there was a disproportionately higher number of Malays with diabetes mellitus (11%) compared to the Chinese population (7%). There is therefore a greater burden of kidney failure among Malays. This trend is also evident from the racial breakdown of the national waiting list for kidneys. Malays made up 21% of the total number of patients on the 2007 kidney waiting list, even though they formed 13% of the resident population [2].

In 2004, MUIS through the Fatwa Committee made it easier for Muslims to pledge their organs. But this has not resulted in any significant increase in the number of Muslim pledgers, despite intensive publicity by the Muslim Kidney Action Association and the National Kidney Foundation. Since HOTA was enacted in 1987, there have been about 16,000 Muslim pledgers. In 2007, there were less than 200 pledgers. To date, these pledges have not yielded any organ donations.

When HOTA was amended in 2004, several Members asked if MUIS could review its position on HOTA to bring the disadvantaged position of the Muslim community up to par with the rest of Singaporeans. I remember SMS Zainul Abidin Rasheed stressing a point that “The disadvantage of (Muslims) being out of the system are real and the Malay-Muslims as a community cannot afford to let this continue.”

In 2006, MUIS embarked on a series of public education campaigns concerning organ donation and the religious issues surrounding organ donation. While there were some concerns on the practical aspects of transplantation, the Muslim community generally voiced their acceptance of the permissibility of organ donation from a religious perspective, and supported the move to increase the number of Muslim donors. In parallel, the Fatwa Committee launched a review of the Fatwa on organ donation. The review eventually led to a new Fatwa being issued in July 2007, making it permissible for Muslims to be covered under HOTA.

With the new Fatwa, we are now in a position to amend HOTA to include Muslims like the rest of the Singaporeans. This is a significant achievement both for the Muslim community as well as for Singapore.

The main objective of this Bill which is now before the House is to bring this about. Technically, the Bill itself is relatively straight-forward as it merely removes the current exclusion clauses of HOTA. Accordingly, clauses 2, 3, and 8 of the bill expand the target population under HOTA to include Muslims.

With the inclusion of Muslims under HOTA, Muslims who do not opt out of HOTA will be accorded the same priority as other Singaporeans who have not opted out of HOTA. Muslims who have already pledged their organs under the Medical (Therapy, Research and Education) Act will also be placed in this group and receive the same priority. This will level the playing field for all Singaporeans who are in need of an organ transplant.

Enforcement Powers

I am also taking this opportunity to amend HOTA, through clauses 4 to 7 of the Bill, to provide my Ministry with the necessary enforcement powers to investigate any offence under HOTA.

HOTA includes regulations on living donor organ transplantation to safeguard the well-being of the donor and ensure that he was not under any form of duress or coercion to donate his organs. HOTA also prohibits any trading in organs and blood as it is deemed unethical.

My Ministry currently relies on the Police to investigate such offences as we lack the power to do so. The proposed amendment would allow my Ministry to appoint inspectors and provide them with the appropriate investigative powers, which would enable them to look into complaints and conduct investigations in a timely manner. We also need to be able to disclose donor or recipient related information for the purpose of administering and enforcing HOTA, as well as for the purpose of referring complaints regarding any errant medical practitioner to the Singapore Medical Council for disciplinary action.

Lifting the Whip

Mr Speaker, as the issues concerning organ removal under the presumed consent framework are ethically and culturally sensitive, I have asked the Whip to be lifted to allow Members to debate and vote on the Bill based on their religious and ethical beliefs.

Conclusion

Although the implementation of these amendments to HOTA will not fully resolve the problem of organ shortage, it will allow more Muslims to have the same chance as others in obtaining a new lease on life through an organ transplant. My Ministry has estimated that about 30 more patients per year may benefit from the proposed amendments to HOTA. I hope the House will join me in giving them this gift of life.

Sir, I beg to move.

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Second reading speech in Malay

Selama beberapa tahun saya berasa bimbang tentang masalah kegagalan ginjal di kalangan orang Melayu. Walaupun masalah ini melibatkan semua bangsa, masyarakat Melayu adalah golongan yang mudah sekali terjejas.

Sebab utama kegagalan ginjal ialah diabetes atau kencing manis. Di kalangan kaum-kaum di sini, masyarakat Melayu mempunyai bilangan pesakit diabetes yang paling tinggi, jauh lebih tinggi (11%) berbanding masyarakat Cina (7%). Orang Melayu yang berada dalam senarai pesakit yang menunggu pemindahan ginjal adalah terlalu ramai berbanding bilangan pesakit ginjal daripada kaum-kaum lain di Singapura.

Sebelum HOTA diperkenalkan, kita bergantung kepada pendermaan organ secara sukarela, tetapi kita dapati bahawa skim seperti itu tidak berkesan. Secara purata, hanya lima pemindahan ginjal daripada orang yang telah meninggal dunia dijalankan setiap tahun, sebelum HOTA bermula. Selepas HOTA diluluskan pula, kadar purata pemindahan ginjal naik sepuluh kali ganda. Setiap minggu, seorang pesakit yang mengalami kerosakan ginjal telah dapat diselamatkan hasil daripada HOTA.

Oleh itu, saya berasa sangat gembira apabila saya diberitahu bahawa Jawatankuasa Fatwa Majlis Ugama Islam Singapura, setelah mengkaji semula perkara tersebut, menjelaskan bahawa tiada salahnya dari hukum syarak untuk menyertakan orang Islam dalam HOTA. Dengan penjelasan ini, kita kini boleh meminda HOTA untuk menarik balik peruntukan asal yang mengecualikan orang Islam daripada HOTA. Lantarannya, kita akan boleh menyelamatkan lebih banyak nyawa, bukan sahaja mereka yang mengalami kegagalan ginjal tetapi juga pesakit-pesakit yang mengalami kegagalan jantung atau hati. Lebih ramai orang juga boleh melihat semula setelah melalui pemindahan kornea.

Saya berasa gembira bahawa masyarakat Islam telah menyuarakan sokongan mereka terhadap Rang Undang-undang ini. Beberapa orang Anggota Parlimen Melayu telah membantu saya untuk mendekati masyarakat Islam bagi menjelaskan kepada mereka tentang Rang-Undang-undang yang dicadangkan ini, dan bagi mendapatkan sokongan mereka. Saya ingin merakamkan setinggi-tinggi penghargaan saya kepada mereka. Mereka termasuk Menteri Negara Kanan Zainul Abidin Rasheed, Dr Mohamad Maliki Osman, Cik Halimah Yacob, Encik Zainuddin Nordin, dan Dr Fatimah Lateef.

Dalam sesi-sesi dialog ini, masyarakat Islam telah menimbulkan banyak keprihatinan yang serupa dengan isu-isu yang kita hadapi semasa kita mula-mula mencadangkan HOTA kepada rakyat Singapura. Ramai orang masih kurang pasti tentang konsep mati otak. Ramai juga bimbang bahawa pemindahan organ akan melambatkan penyerahan jenazah kepada ahli waris dan urusan pengebumian. Keprihatinan ini memang difahami tetapi ia akan ditangani dengan sepenuhnya. Kementerian saya akan terus mendekati masyarakat Islam untuk menyakinkan mereka bahawa segala usaha akan diambil untuk meredakan apa jua kemusykilan, risau atau persoalan yang mungkin ada.

Saya harap Dewan ini akan menyokong Rang Undang-undang ini untuk membolehkan kita menyelamatkan nyawa.

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English text for the second reading speech in Malay

I am happy to recommend this Bill to include Muslims in HOTA, as it will save many lives.

For many years, I have been concerned about the problem of kidney failure among Malays. While the problem affects all races, the Malay community is particularly vulnerable.

A major cause for kidney failure is diabetes. Among the races, the incidence of diabetes among Malays is the highest. According to the 2004 National Health Survey, there was a disproportionately higher number of Malays with diabetes (11%) compared to the Chinese population (7%). From 2000 to 2006, new cases of kidney failure among the Malay population have risen from 19% to 22%.

As a result, the Malays are overly represented among those on the waiting list for kidneys. As at end of 2007, Malays represented 21% of the total number of Singapore citizens and Permanent Residents on the kidney waiting list, even though they formed 13% of the resident population [3].

Prior to HOTA, we relied on voluntary organ pledging but such opt-in scheme has not been effective. Before HOTA, there was, on average, only 5 cadaveric kidney transplantation per year. After HOTA, the average rate of kidney transplantation has gone up 10 times. Every week, a patient with kidney failure is saved as a result of HOTA.

I was therefore very happy when I was told that MUIS Fatwa Committee had upon review, clarified that there are no religious objections to including Muslims under HOTA. With this clarification, we are now in a position to amend HOTA to remove the original exclusion of Muslims from HOTA. We are now in a position to save more lives, not just those with kidney failure, but also those with heart or liver failure. And many more will be able to regain their sight through cornea transplantation.

I am glad that the Muslim community has voiced their support for the Bill during the various community dialogues. Several Malay MPs have helped me to reach out to the Muslim community to explain to them the proposed Bill and to seek their support. I want to record my deep appreciation for their efforts. They include SMS Zainul Abidin Rasheed, Dr Mohamad Maliki Osman, Madam Halimah Yacob, Mr Zainudin Nordin, and Dr Fatima Lateef.

The various dialogues have raised similar issues of concern that we have encountered when we first proposed HOTA to Singaporeans. Many remain unsure of the concept of brain death. Many are worried that organ transplantation will delay the release of bodies and hence the funeral arrangement. The concerns are understandable but they can be fully addressed. My Ministry will continue to reach out to the community and to reassure them.

I hope this House will support this Bill to enable us to save lives.

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Footnotes:
[1] Muslim MTERA pledgers who make their pledge after they turn 21 or after the 6 month period after attaining citizenship/PR will need to wait 2 years.
[2] Resident population includes all Singapore citizens and Permanent Residents. (Population Trends 2007)
[3] Resident population as at June 2007.

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Closing Speech for the HOTA (Amendment) Bill

Mr Speaker, Sir, let me thank Minister Yaacob Ibrahim and the Members for their strong support of this Bill. The Muslim MPs, in particular, have gone all out to help rally support for this Bill. They have not merely stated their stand clearly in this House, they have conducted many dialogue sessions in the mosques and the community centres, to help us reach out to the Muslim community, to explain what HOTA is all about and how they can save lives by supporting HOTA and that HOTA is not in conflict with their religion. My Ministry and the many patients with kidney failure are grateful for your support and your tireless efforts.

Continuing public education

And the efforts to reach out to explain and reassure will continue. As noted by all Members, it is important that we keep up the efforts to improve the public’s understanding of organ donation, brain death and presumed consent. My Ministry will work closely with MUIS and Muslim leaders on this. As Dr Ahmad Magad put it, we need to strengthen the belief of those who say “yes”, address the concerns of those who say “may be” and convince those who say “no”.

Indeed, we will henceforth no longer need to make the distinction between Muslims and non-Muslims for HOTA. Information regarding organ donation and HOTA will continue to appear regularly all local newspapers; organ donation booklets and opt-out forms will continue to be couriered to every Singapore citizen and PR when they turn 21 years old. We will continue to partner the Society of Transplantation, the NKF, the Malay Kidney Action Association, and other entities, to reach out to Singaporeans on organ donation and HOTA.

We will also intensify efforts to reach out to community centres, grassroots organisations, schools, colleges and tertiary institutions. Concepts like brain death, presumed consent and the religious implications require regular explanation and a sustained educational effort. It is time-consuming and it is costly, but it is necessary. The more effective we are in this, in easing the fears and concerns of donors and their families, the more lives we can save.

Dr Ahmad Magad suggested that we rope in organ recipients, professionals, grassroots leaders and other persons who strongly believe in HOTA as “HOTA ambassadors”, to help us explain HOTA and ensure buy-in. Next month, we will refresh our HOTA website, to also be a repository of human stories from people whose lives have been changed after receiving the “gift of life.” They will be our on-line “HOTA ambassadors”.

One-Off Exercise

Meanwhile we are preparing 300,000 packages to be individually delivered to all the Muslim Citizens and Permanent Residents aged 21 to 60. The packages will be comprehensive and easily readable. Each package will contain four things: (1) a letter informing them that they will soon be included under HOTA, (2) an information booklet on HOTA describing in detail the implications of being included under HOTA, (3) a booklet by MUIS explaining why Muslims can now be included under HOTA and Islam’s position on organ donation and (4) an opt-out form for those who decide to do so.

We have done a similar exercise before when we first introduced HOTA in 1987, and again in 2004 when we amended it to include other organs[1]. Nevertheless, it will be a massive exercise and we will take 3 months, from Feb to June to complete it. The actual inclusion of Muslims under HOTA will commence on 1 Aug 08.

Age of Consent

Dr Fatimah proposed that we lower the age of HOTA inclusion from 21 to 18 years of age. I have also received suggestions from the public to raise the maximum age of 60, as the organs of those dying above 60 are often also suitable for transplantation. These proposals will require further study. Let’s concentrate on extending HOTA to the Muslims first as that itself is a major milestone and I want to ensure that it is implemented well, achieving results of saving lives, without causing undue worries and concern to the community.

Meanwhile, those who are between 18 and 21 years of age and who wish to make an organ pledge can do so under the Medical (Therapy, Education and Research) Act (MTERA).

Emotional support for families

Mdm Halimah and Dr Fatimah reminded our hospitals to be extra-sensitive when approaching organ donation cases and their families. Our hospital staff should be well trained and have relevant communication skills, so as to minimise conflicts with the distressed family members. We should also streamline the process flow, to make it a little easier for the grieving families. I fully agree. We have had 20 years of such experience but each incident is a case study for us to learn and to refine our process. Following the SGH incident last year which Mdm Halimah quoted, we have now made social worker support for the donor family mandatory in every organ donation case. All such family members will receive grief counselling and emotional support. We have enhanced the training of the senior doctors who are responsible for giving final authorisation in organ donation cases, to further equip them with crisis management skills. Measures have been put in place to ensure that all doctors who take on this task are well trained and retrained. We have also sought the assistance of the various religious groups to provide volunteers whom we can call upon to help address any religious concerns that may arise during the organ retrieval process.

With the inclusion of Muslims under HOTA, MUIS has agreed to provide religious support to advise Muslim families on the position of Islam on organ donation and HOTA should the need arise. Hospitals will also rope in doctors and nurses who can better communicate in Bahasa Melayu in this effort. Volunteer “HOTA ambassadors” are welcome to join in such hospital activities, whenever the need arises.

During the dialogues with the Muslim community, many expressed the concern that any organ transplantation should not unduly delay the release of the body to the family. We took this feedback to heart. We have tightened operational procedures and the coordination between hospitals, the Police and the pathologists. We will cut out any unnecessary delay. There was a request that hospital mortuaries should provide for “washing and shrouding facilities” for the use of the family members. Our hospitals will proceed to set up such facilities in the mortuaries.

Living Organ Transplantation

Dr Ahmad Magad spoke about living donor organ transplants and how this could augment cadaveric transplants. Since this House legislated on living organ transplantation in 2004, the number of living organ transplants has risen. There were 111 living organ transplantations last year.

My ministry encourages living organ donation. This is a viable option for many patients but cultural hindrances remain. We will step up patient and professional education efforts. We are supporting a pilot programme to counsel newly diagnosed kidney failure patients on the benefits of living kidney donation, so that living donor transplant is considered ahead of dialysis. We do provide some subsidies to live organ recipients to help defray the cost of organ transplantation and long-term immunosuppressive medication.

Organ Trading

But we should not unwittingly end up promoting trading of organs. The problem of organ shortage is worldwide. Not surprisingly, an international organ trade has emerged as observed by Mdm Halimah. We should not be a party to it. The beefed up investigative and enforcement powers in the Bill will further help keep Singapore stay clear of organ trading.

Investigation and Enforcement Powers

Dr Ahmad Magad would like to know the difference between MOH officers conducting investigations under HOTA, and the Police conducting such investigations. He has asked what will be done to ensure that MOH enforcement officers are properly trained.

We will ensure that our enforcement officers will receive the necessary training and instruction, internally and from the Police, so that they can carry out their work professionally. Some of these officers are likely to be ex-Police officers with relevant experience. They will be closely supervised by a chain of command and be required to carry identification cards, which they must produce on demand when exercising their powers. In substance, the change will not differ much from today. The key difference is that we will build up investigation and enforcement internally within MOH, so that we do not have to rely on the Police which have so many other responsibilities. Hopefully, this will speed up investigation and enforcement.

Professor Thio asked whether detention beyond 48 hours is contemplated under clause 15I of the Bill. This is consistent with Article 9(4) of the Constitution[2].

Health Promotion

Mr Speaker, Sir, even as we amend HOTA to help save lives, the best approach is still prevention. Those who are pre-disposed to develop kidney failure should actively change their lifestyle and diet. They should start exercising regularly, if they have not already done so. They should work with their family GPs, take medication diligently and test their blood sugar and cholesterol regularly.

Each year, in Singapore, there are close to 700 patients who have amputations involving the lower limb as a result of uncontrolled diabetes. This is equivalent to 2 amputations per day which is largely avoidable. Many more suffer from other complications such as heart disease, stroke and blindness. All these conditions cause unnecessary suffering and loss of productivity. Let’s be proactive to reduce such miseries.

Conclusion

As Mdm Halimah put it, this Bill makes an important and significant change. Muslims will soon be included under HOTA. The change comes too late for some who died while waiting. But better late than never.

I thank Members for joining me in this fight to save some more lives, without even having to lift a finger, as Mayor Zainudin put it. Sir, I beg to move.

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Footnotes
[1] In the 1987 and 2004 exercise, information on HOTA was included in the monthly PUB bill that is delivered to all households in Singapore.
[2] Art 9(4) states — Where a person is arrested and not released, he shall, without unreasonable delay, and in any case within 48 hours (excluding the time of any necessary journey), be produced before a Magistrate and shall not be further detained in custody without the Magistrate’s authority

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