THE MALAYSIAN PAEDIATRIC ASSOCIATION JULY 2004 FOR MEMBERS ONLY

Editorial Board 1st National

Prof Zulkifli Ismail Dato’ Dr Iean Hamzah Sendut Thalassaemia Seminar MPA 2003/2004 EXECUTIVE COMMITTEE and the International President Prof Zulkifli Ismail Immediate Past President Thalassaemia Day Dr Nazeli Hamzah Vice-President Thalassaemia is an important health problem in . There are about 2500 transfusion Prof A Rahman A Jamal dependent patients and with a carrier rate of 3-5% it is estimated that 120-350 new cases of Hon Secretary thalassaemia are born annually. Only about 30% are on iron chelation therapy due to the high Assoc Prof Tang Swee Fong cost of providing desferrioxamine, which is not subsidized by the government. Hence, many patients are not treated Asst Hon Secretary Dato’ Dr Iean Hamzah Sendut optimally resulting in a high rate of complications due to Treasurer Dr Musa Mohd Nordin iron overload. There is currently no prevention Committee Members Dr Koh Chong Tuan programme in place except Dr Thiyagar Nadarajan when new cases are Dr Mohd Hanifah Mohd Jamil identified. Dr Soo Thian Lian Dr Syed Zulkifli Syed Zakaria Over the years, the Dr Noor Khatijah Nurani thalassaemia societies from Co-opted Committee Members the various states have Prof Datuk Mohd Sham struggled passionately and Prof Choo Keng Ee actively to raise funds to Affiliated to: help subsidise • Malaysian Council For Child Welfare desferrioxamine for patients. Patients do receive safe and adequate blood transfusions and are not charged for their • ASEAN Pediatric Federation transfusions in the daycare. The main stumbling block to the provision of free desferrioxamine • Association of Paediatric Societies of the South East Asian Region for all patients by the government is the financial commitment, which is estimated to be (APSSEAR) RM24 million (USD6 million) annually. The government has also insisted that a prevention • International Paediatric programme must be in place before desferrioxamine is subsidised. Association (IPA) As part of the continuing struggle and endeavour for the cause of thalassemia, the Federation The Berita MPA is published for members to keep them informed of of the Malaysian Thalassaemia Societies (FMTS) and the Malaysian Paediatric Association the activities of the Association. together with the Ministry of Health Malaysia pooled their resources together to organise the The views & opinions in all the 1st ever National Thalassaemia Seminar for patients, parents and professionals. The historic articles are entirely those of the event took place on the 8-9th of May 2004 at the Corus Hotel, Kuala Lumpur. The event was authors unless otherwise specified. attended by the Honorable Minister of Health Malaysia, Dato’ Dr. Chua Soi Lek who also We invite articles and feedback officiated the 11th anniversary of the International Thalassaemia Day which fell on the 8th from readers – Editor of May. Continued on page 3

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BERITA MPA – JULY 2004 1 From The President

President’s Thoughts

Some Light At The End Of The Tunnel

The National Seminar on Thalassaemia Ministry approves free DFO for Increasing crime against was a resounding success, attracting a transfusion-dependent thalassaemics. children large attendance and active This will, of course, have to go in line participation all around. Now that it is with a massive education blitz so that The newspapers nowadays are filled over, we ought to look back at the we do not have to cope with a never- with crime reports. Violence against event in total and see what we really ending birth of new patients. children has now moved from the accomplished. usual child abuse that was highlighted More say for Paediatric Nurses by the famous Balasundram case in We managed to bring the plight of 1990 to more violent crimes by people thalassaemics to the attention of the The recent Symposium for Paediatric outside the family circle. While we are Minister of Health who, being a doctor Nurses held in Melaka was another just trying to grapple with the 60 or so himself, already understood the success. We did not want to just have cases of shaken baby syndrome per situation all too well. The top another symposium with everybody year in Hospital Kuala Lumpur and management team in the Ministry of going home afterwards feeling they more throughout the country, children Health (MOH) had been primed had learnt something or other. The aim are now facing the increasing threat of previously (during the annual MOH this time was to get the paediatric sex-related crimes, some committed by dialogues each year) on the same nurses together so that they could children themselves. issues by all the state thalassaemia form a more united body affiliated to associations nationwide. The MOH the MPA. Dr Syed Zulkifli managed to As paediatricians, we cannot help but officials were receptive at the seminar get them to start meeting to discuss try to look at the root cause for this. and expressed genuine empathy their plans for continuous nursing Are these crimes are the result of an towards the problems plaguing education. Hopefully, they will follow education system that stresses book thalassaemics and their families. through with further discussions. learning while sidelining moral and religious development? If so, why are A significant outcome of the event was There is a Nursing Sub-committee in they also occuring among religious the renewed commitment of MOH to MPA which, other than hingeing on school students as well? Have we proceed with a cabinet memorandum MPA activities, is rather inactive. deprived our children of a valuable to provide desferrioxamine (DFO) at Although nurses can benefit from our community asset called conscience or subsidised rates for transfusion- scientific meetings, we often fail to have we as adults set bad examples to dependent thalassaemics. The recognise that the level of discussion follow? The lack of compassion for our suggestion had been raised on other and understanding may be slightly fellow humans was recently occasions before but this was the first beyond them. exemplified when one of my patients time that it was articulated by Dato’ Dr suffering from epilepsy had a seizure For this reason, MPA will continue Narimah Awin, the Director of Family along the aisle of his classroom. The helping to facilitate a specific nursing Health Development, and also by the other children just trampled over him symposium every year to keep them Minister himself. when the recess bell rang! What kind informed. In addition to medical of adults will these students become in information, nurses have other things Dato’ Dr Narimah has since started the the future? Just a thought to share ball rolling and I am sure things will in nursing management that they need with you...2 move in the right direction for our to handle. So, we would encourage patients. We have seen so many of nurses to organise more activities for Zulkifli Ismail them die before this move that it will themselves with most of the rest of us President 2003-4 be a big breakthrough if and when the lending a helping hand. [email protected]

BERITA MPA – JULY 2004 2 Events Continued from page 1

The success of the event was beyond what he said in his speech simultaneously oral iron chelators with lesser side-effects. expectations with more than 400 moved the audience to tears and Later in another talk, he mentioned that participants packing the cozy conference provided the glimmer to the whole trials comparing combination therapy venue. All in all, 200 patients and parents meeting. Being a medical doctor, the using Deferiprone and Desferrioxamine attended in addition to 200 doctors and minister understood well about versus monotherapy and it is beginning nurses. The scientific programme thalassaemia and had seen his fair share to look that combination therapy might included topics on iron chelation and iron of patients during his service days. What perhaps be the answer to better iron toxicity at length, state-of-the-art he could not understand was why it has chelation. However, the use of technology including molecular diagnosis taken too long a time for the issue and deferiprone as a stand-alone iron chelator and pre-implantation diagnosis, ethics of problems to be resolved. He was both is allowed if the patient cannot be prenatal diagnosis and stem cell clinical and decisive in his adequately chelated with desferrioxamine transplantation. There was also a announcements and of the strategic plan or cannot tolerate desferrioxamine. Dr. concurrent programme for patients and by the Ministry of Health to tackle the Fernando Tricta’s lecture on Iron toxicity parents and among the issues discussed problem. A task force is already in place and monitoring iron overload touched on were on improving compliance to iron at the ministry and he had already the use of better and more accurate chelation therapy, anticipating briefed and discussed with the methods of monitoring iron overload. complications and getting funding for chairperson, the indomitable Dato’ Dr. These include liver iron content, iron chelation. There was also a very Narimah Awin on the strategy. A monitoring 24-hour urinary iron excretion emotive session where patients and memorandum for the cabinet will be and the use of the T2* Magnetic parents spoke on their life experiences prepared and there will be 4 main steps: Resonance Imaging (MRI) to quantify iron and their journey through the trials and 1. An intensive and widespread health overload in the heart and liver. Dr. tribulations of being either a patient or a education and promotion campaign to Samuel Chong elegantly described the parent. increase public awareness about techniques of pre-implantation diagnosis thalassaemia as well as educating the that would be more acceptable, albeit th In his opening address on 8 May, MPA public about the disease, 2. The provision more costly, than prenatal diagnosis and President Prof Zulkilfi described the of free iron chelation therapy for all abortion of fetuses confirmed to have patients on whom he had started patients, 3. The implementation of a thalassaemia. Local speakers also covered treatment many years ago and who are prevention programme through a variety of topics. There was also a currently being referred to him for population screening, and 4. The setting session where patients and parents relate cardiac failure secondary to either chronic up of a National Thalassaemia Registry. It their life experience dealing with the anaemia or iron overload. Some have was a promise announced with passion disease. The finale was a 2-hour question even passed away. He urged the Ministry and commitment and something that and answer session that had parents and of Health to consider providing free or should have happened many years ago. patients asking questions ranging from subsidised desferrioxamine to But to all of us who were there, it was blood transfusions, iron chelation, thalassaemics as this issue has been worth the wait. Shortly after the speech, prenatal diagnosis, abortion and the brought up by all the thalassaemia a group of 30 thalassaemia patients prejudice of employment. There was societies. He reiterated the difficulties paraded on stage to deliver a ‘WISH LIST’ extensive media coverage during the with which thalassaemia societies have to to the Minister. An 8-year-old girl with seminar where members of the press go through to compete for donations. thalassaemia major solemnly read the and the electronic media interviewed wishes to the audience moving many to the Minister, the speakers, parents At the launching of the International tears. Amongst the 8 wishes were: that and patients. Thalassaemia Day on the 9th of May, the they be treated with fairness, compassion organising chairman Professor Dr. A and understanding, they receive the best The 1st National Thalassaemia Seminar Rahman A Jamal, in his speech, standard care, received treatment for was certainly a landmark seminar, which highlighted the plight of the patients and their iron overload at minimal or no cost had participants from all quarters, had their parents. Whilst there are a number at all. the best of speakers in their respective of patients surviving beyond their fields, and was conducted in an twenties, many still die in the second The meeting also hosted 3 international atmosphere laden with raw passion, decade due to cardiac complications speakers namely, Dr. Antonio Piga belief, expectations and hope. It was an secondary to iron overload. The actual from the University of Torino, Italy, almost perfect meeting of minds and cost of treating complications of iron Dr. Fernando Tricta from Apotex bodies and at the end of the day overload unknowingly is surpassing the International, and Dr. Samuel Chong everyone went home with an invaluable cost of providing optimal iron chelation from the National University of gift i.e. the gift of hope and commitment to these patients. Singapore. Dr. Antonio Piga spoke on the to provide the best possible care for all Iron chelation therapy: Past, present and thalassaemia patients. Unity is If the participants came to hear the good future during which he highlighted the Strength! news they have been waiting for 2 discovery and use of desferrioxamine as decades, they were certainly not the premier iron chelator, followed by the A Rahman A Jamal disappointed. The Minister of Health was discovery of the oral iron chelator, Organising Chairman welcomed with a rousing reception and Deferiprone and also the promise of new [email protected]

3 BERITA MPA – JULY 2004 Events Nightmare Nursing Getaway Turns Out Well

A paediatric nursing The words, “Shame” weekend seminar! and “Never before in What a brilliant the history of MPA...” idea. Plus it’d be the started flashing again. first ever! Taking a deep breath and acting like I had Well, me and my everything figured out big mouth. With (being the Organising only four confirmed Chairman and all), I participants four headed towards the weeks before the registration counter. But big event, I couldn’t before this oral cavity help feeling a could be exposed to the creeping sense of elements, Datin declared dread. “Cancelled!”, “Shame!” and other words of to my achy breaky heart that “All’s been settled. We’ve got ignominy flashed repeatedly in my mind. I even dreamt of rooms for the latest group of unexpected participants.” the Treasurer declaring, “Never before in the history of the Saved again! What would I have done without her? MPA ...”. Till today, I still wonder why, of all the Committee members, it had to be him to figure in my nightmare ... I rushed back to the Ballroom for the arrival of the President. I was sure he wanted me to put on my best Anyway, the ever-confident ‘matriarch’ of MPA provided behaviour, introduce him in my most charming manner, and some comfort with her words of experience and most importantly, not tell any of my regular jokes. encouragement. As she predicted, the number of participants started increasing as the days went by. My Anyway Prof Dr Haji Zulkifli Haji Ismail was late (what a rare heart rate started slowing, coming down to 140 at T minus occurrence). The first thing he asked was about the talk he two weeks (40 confirmed participants), down some more was supposed to deliver that night. He was so eager to to 100 and ... you get the picture. convert more people to the infant massage ‘cult’ that he was a bit disappointed when I told him that he had to do One week before the big event, we had 86 confirmed the opening first. participants. Whew! I could live with that. I was saved, my prayers were answered, etcetera, etcetera, etcetera. I thought he would exercise his executive powers and cancel the ceremony. If he had done so, I would have Walked into the lobby on D-day. “Syed, we’ve got two objected as the Organising Chairman, seeing that it was more but didn’t get their faxes. But it’s OK; we’ve got the first-ever conference organised specifically for paediatric room”. Lingered around the registration counter. Another nurses and possibly (as someone said) the first-ever stand- unpre-registered participant appeared and got the “It’s OK, alone seminar for nurses. Thinking along those lines, I she can share with me” treatment. Just a few more late couldn’t help feeling my head expanding. registrants and we were home free with 123 participants on board. Feeling well and truly saved, I popped over to my After the formalities of the opening ceremony, Prof Zul room for a nap. waited until we were halfway into dinner before making us pay for it – that is, by making us listen to his talk. When it After being as well ‘rested’ as one can be with two ended, we all felt like we needed another dinner and two demanding kids running around in the room, I went down free lunches as well. to the Ballroom for the first two events of the Getaway – the opening ceremony and a dinner talk. As foot touched Jokes aside, the talk was very interesting and informative. A stair just before the hospitality table, I was struck by the lot of scientific evidence for infant massage was put latest news – five more participants had just arrived ... forward. Without a doubt, Prof Zul covered every possible unlisted in our full-house hotel! group of children that can be massaged – from healthy

BERITA MPA – JULY 2004 4 Events term infants and premmies, to infants of drug-abusing experiences, including visiting a few centres overseas. There mothers and HIV-positive babies. As always, Prof Zul were interesting questions from the floor and these were managed to convince the audience of the importance of entertained to the audience’s satisfaction. The talk had the such therapy for the betterment of health for the children effect of stirring my imagination which led to my of Malaysia. Most of the nurses seemed eager to try it out ruminations about the possibilities, like ‘nurse-friendly themselves. hospitals’, ‘doctor-friendly hospitals’, ‘hospitals with friendly doctors and friendly nurses’, and ... err, so on. It was at that moment that I began feeling that that was going to be a good and rewarding weekend after all.2 Then came the first and only hiccup of the weekend. Puan Rashidah had come back to deliver a second talk which was about “Personal & Professional Development for Nurses”. Unfortunately, her presentation could not be projected Day 2 because it was prepared using an unfamiliar program software. So, we had to make do with handouts. With or Was it a dream? The President congratulating me for a job without the aid of projection, the lady could really talk. She well done last night? Oh, the yearning to be accepted... was even more passionate than in her earlier session. The Anyway, it was Day 2 of the Nursing Getaway. So far so nurses were captivated, their faces aglow with inspired good but I was not yet out of the woods; there was still determination to excel in their profession. the first day of seminars to go through with the minimum Next came a comprehensive talk-cum-experience-sharing of hiccups. session relating to the “Role of Nurses in the Prevention of Right on cue, the first session was put in motion by the Infections”. The speaker, Sister Faridah Ahmad Sheikh from introduction of the first speaker – none other than the the Paediatric Institute, HKL, touched on the various aspects numero uno of the nursing profession in Malaysia, the of prevention that needed the nurses’ attention. Chief Matron of the Ministry of Health Malaysia herself, Then came moi (pronounced Puan Bibi Florena Abdullah. mu-ah, that’s French for yours She spoke on “Nursing In truly, the author of this article) The New Era”, a scenario speaking on “Nursing the which nurses of today need Abused Child”. It’s a topic that’s to approach. The audience close to my heart and if you’re was mesmerised by Puan Bibi wondering why, it’s because it as she shared her used to be close to my behind. I experiences from the not- was a handful when I was young too-distant past till now, and and used to get into a few related the progress and situations ... that will be changes she had witnessed described in gory detail in my through her years in the coming autobiography coming nursing profession. There soon to a theatre near you. were a number of interesting Anyway, despite the yawning questions following her talk. After thoroughly enjoying and furtive glances at the clock on the wall, I think my talk the Saturday morning with Puan Bibi, it was difficult to let was well-received and am now patiently awaiting the her go. promised invitations to speak at a number of hospitals on the same subject. The next talk was just as interesting. Puan Rashidah Mohamed, Head of the Nursing Programme, Department Finally, the first clinical management talk of the day, of Community Health, University Putra Malaysia, spoke on “Management of Dengue Haemorrhagic Fever”. If I may be “Implementation of Nursing Research”. I have never seen a so bold to say so, the talk was superbly presented by nurse as passionate about research than this lady. Hats off Consultant Paediatrician, Dr Lina Lim, again from among to Puan Rashidah for her wonderful talk which, I am sure, the finest in Melaka GH. The audience was satisfied. In fact, had inspired quite a number to follow her lead in tackling I was harassed by quite a few nurses who insisted that I nursing research. surrender to them a hard copy of Dr Lina Lim’s talk. Fearing for my safety among the amazons, I complied. Whew! They The subject of friendliness then came up when one of sure can be assertive when they want to ...2 Melaka GH’s finest, Consultant Paediatrician Dr Zainah Shaikh Hedra provided an “Introduction to The Child- Syed Zulkifli Syed Zakaria friendly Hospital”. In sharing the meaning of a ‘child Nursing Getaway Organising Chairman friendly hospital’, the speaker highlighted her personal [email protected]

5 BERITA MPA – JULY 2004

Announcements

WORLD FORUM ON THE CHILD NEW ASSOCIATE MEMBERS Date : 27-30 August 2004 Venue : International Islamic University Malaysia Kayati Binti Jais @ Hj Md Nurul Fariza Bt Mohd Mustafa Dahlan Paediatric Ward Contact : Azlin No 13, Jalan 3 Ampang Puteri Specialist Hospital Address : The Secretariat, Taman Sri Teratai No 1, Jalan Mamanda 9 World Forum on the Child 2004, 44000 Kuala Kubu Bharu 68000 Ampang, Selangor Dean’s Office, Kulliyah of Medicine, Selangor Norsahida Bt Sahari International Islamic University Malaysia, Saidah Bte Jubri Paediatric Ward 25150 Kuantan, Pahang, Malaysia No 14, Jalan 2/2A Ampang Puteri Specialist Hospital Phone : 609 571 6402 Bandar Baru Bangi No 1, Jalan Mamanda 9 Fax : 609 571 6770 / 5133615 46350 Selangor 68000 Ampang, Selangor E-mail : [email protected] Norlian Binti Jauhari Yeo Mui Ee 9374-G Taman Indah 217 F, Taman Kenanga Seksyen 3 24th INTERNATIONAL CONGRESS OF PEDIATRICS, CANCUN 75150 Bukit Sebukor Gajah Berang MEXICO, 2004 Melaka 75200 Kuala Lumpur Date : 15-21 August 2004 Habibah Bt A Jalil Raja Rosilawati Binti Raja Venue : Mexico Lot 4207 Bt 6 Jalan Gombak Hussin Address : Pico de Verapaz 435-4o piso PO Box 235 Lot 440, Jalan Sek Kebangsaan 53700 Kuala Lumpur Ludang Col. Jardines en la Montana 15150 Kota Bharu, Kuantan 14210 Mexico, D.F. Nora Omar 33, Kg Seri Mariah Roslinda Binti Abd. Aziz Phone : +52 55 5449 1500 31000 Batu Gajah Batu 6, Jalan Kuala Urai Fax : +52 55 5449 1555 Perak 16010 Kota Bharu E-mail : [email protected] Norihan Bt Hashim kelantan JA 2399 Norasmila Bt Jamail th 8 ASIAN & OCEANIAN CONGRESS OF Kg Kesang Jaya Lot 2089, Jalan Tok Malek CHILD NEUROLOGY 77000 jasin Kg Kutan Hulu Melaka 16250 Kota Bharu Date : 7-10 October 2004 Kelantan Venue : Hotel Taj Palace, New Delhi, India Norazliza Bt Ahmad Contact : Prof Veena Kalra No 3 Jalan Chang Yinh Fatt Chan Soh Iyan Faib Perak 1048 Taman Ang Beng Kooi Address : Organising Secretary, 30040 Ipoh, Perak Jalan Pengkalan Chepa 8th AOCCN Salmah Saadon Kota Bharu, Kelantan Department of Pediatrics 14 jalan SD 2/22 Siti Ramlah Bt Ayob All India Institute of Medical Sciences Taman Seri Duyong 2 Lot 1844, Kampung Wakaf Merah Ansari Nagar, New Delhi -110029 India 75460 Melaka Rendong, 17030 Pasir Mas Phone : 91 11 2659 4424 / 2659 3209 Madihah Bt Mohd Shah Kelantan Fax : 91 11 2686 2663 / 2652 1041 No 47, Jalan Pinang Kartini Bt Ali E-mail : [email protected] Kg Melayu 101 Blok 1 68000 Ampang, Selangor Kuarters Hospital, Jalan Korma 12th ASEAN PEDIATRIC FEDERATION CONFERENCE Lee En Moi @ Anna 83000 PPM 11, Elopura Date : 25-28 November 2004 90000 Sandakan, Venue : Dusit Resort, Pattaya, Thailand Address : Secretariat Office, CHANGE OF ADDRESS Pediatric Society of Thailand, Dr Amir Hamzah B Abdul Dr Sharifah Ainon Syed 9th Floor, Rahman Mokhtar The Royal Golden Jubilee Building, No 5, Lorong Permatang Badak Consultant Paediatric Cardiologist 2 Soi Soonvijai, New Petchaburi Road, Maju 5 Department of Paediatrics Bangkapi District, Bangkok 10320 25150 Kuantan Hospital Pulau Pinang Thailand Pahang 10450 Pulau Pinang Dr Choo Keng Ee Dr V Manonmani NEW LIFE MEMBERS 878, Kampong Baru, Pasir Pekan Department of Paediatrics Dr Bee Boon Peng 16060 Kota Bharu Melaka-Manipal Medical College No. 653, Lorong S2A 14/4 Kelantan 463-1, Jalan Batu Hampar, Green Street Homes Dr Ang Yow Ming Bukit Baru Seremban 2 No 1, Lorong Bukit Ubi 21 75150 Melaka 70000 Negeri Sembilan Taman Bukit Sekilau Mewah Jalan Bukit Sekilau NEW ORDINARY MEMBERS 25200 Kuantan Dr Mangalam Sinniah Dr Foong Kin Wai Pahang 240 Jalan C5, Taman Melawati Department of Paediatrics 53100 Ulu Kelang, Hospital Batu Pahat Special Alert: IOM Report Rejects Link Between Autism and Kuala Lumpur Jalan Kurma MMR Vaccine and Thimerosal-Containing Vaccines Dr Chen Seong Joon 83000 Batu Pahat, Johor 37, Jalan Damai Bakti 3 Dr Syed Nazir MS Kadir A major report issued today by the Institute of Medicine Alam Damai Department of Paediatrics (IOM) rejected MMR vaccine and thimerosal-containing 56000 Cheras, Kuala Lumpur University Malaya Medical Centre vaccines as a cause of autism. The findings, based on reviews of current scientific evidence, are a significant affirmation of Puan Arpah Abas Jalan Pantai, 59100 vaccine safety. The new report is an excellent resource for National Pharmaceutical Control Kuala Lumpur Bureau doctors who want to reassure parents about the safety of MOH, Jalan University vaccines. Said AAP President Carden Johnston, M.D., “For PO Box 319 most parents, today’s report gives them the assurance they 46730 Petaling Jaya, Selangor need to fully vaccinate their children.”

11 BERITA MPA – JULY 2004