Archive for the ‘Health’ Category

A price control headache

Sunday, May 12th, 2019
Addressing the very complex issue of setting up a drug price control mechanism to ensure people have better access to affordable drugs.

ELEEN Ooi, 38, could not believe her eyes when she got the bill for the removal of a peanut stuck in her four-year-old daughter’s nose.

The private hospital’s itemised bill for the 15-minute procedure ran into two full pages and came up to RM4,000.

And she noticed that she was charged RM43.60 for a baby nasal spray which she could get for RM27 from a pharmacy.

She, like many patients, alleges that hospitals are charging high prices for drugs and services resulting in high insurance premiums in the country.

Drug prices are a major contributor to high healthcare costs and the government should regulate them across the board and at every dispensary, she says.

“The price of drugs needs to be more affordable for the public, especially drugs where patents have expired,” says Ooi, a lecturer.

She says when people cannot afford to sustain paying for the high costs of medicine, especially those taken for the long-term, they are forced to use the public health system.

For this reason, she welcomes the Cabinet’s decision to impose drug price controls.

A solution to fit all

Health Minister Datuk Seri Dr Dzulkefly Ahmad says the Cabinet approved the measure on April 12 and that the ministry will get pharmaceutical companies’ responses on the price control mechanism this month.

The ministry will use external reference pricing to benchmark drug prices in Malaysia, choosing the three lowest prices and averaging them to determine the ceiling price.

The ministry has not decided which country’s system it will model the control mechanism on, he said at a press conference held recently in conjunction with Pakatan Harapan’s first year in office.

Dzulkefly says the ceiling price will be imposed at the wholesale level as well as the retail/consumer level at clinics, hospitals and pharmacies.

Controlling the prices of drugs is provided for in the Price Control and Anti-Profiteering Act 2011, which is monitored by the Domestic Trade and Consumer Affairs Ministry. The Cabinet has agreed that this ministry will appoint Health Ministry officers as price assistant officers to carry out drug price control enforcement activities, he says.

Dzulkefly says the move will ensure that people have access to affordable drugs, especially expensive new drugs; it will also encourage innovation and healthy competition for industry growth.

The private sector may not be happy with a price control but the country needs a solution that fits all, he says.

It was recently reported that Penang Institute political studies senior analyst Lim Chee Han had quoted the 2017 Medicine Prices Monitoring report showing that the median mark-up for originators’ and lowest-priced generics’ retail prices in private hospitals was 51% and 167% respectively.

In pharmacies these figures were lower, at 22.4% and 94.7%.

“This shows that the mark-up range can be exceedingly large; in some extreme cases in private hospitals, it could even spike up to 117.4% and 900%!” Lim says.

NGOs welcome move, industry wants competition

Non-governmental organisations (NGOs) welcome a drug price control but local drug producers prefer market competition.

Third World Network (TWN) adviser Dr Lim Mah Hui says he supports the effort but it should not be rushed as it is a complex issue and the government needs to look at different models and choose the best to emulate.

Dr Lim says there is a lack of transparency in drug pricing at different levels – manufacturers, middlemen, pharmacies, hospitals and clinics – and there should be some regulation of the price range they can mark up.

“We hear about discriminatory preferential pricing. Manufacturers selling (the same) drugs at different rates to different buyers and some medicines not being made available to certain pharmacies.

“I am not saying that the industry should not make a profit, but the profits should be reasonable,” he says.

Africa introduced a single exit price in 2004 which requires the manufacturer to declare the price when the drug comes out of the factory. It also put a stop to discounts and preferential pricing, he says.

In June last year, The Star quoted Dr Lim saying the government should initiate centralised purchasing and regulate drug prices as is done in advanced countries, and carry out a study on the drug procurement system to ensure drug prices are affordable.

Last August, TWN programmes director Chee Yoke Ling also highlighted the need to tighten up unnecessary patent monopoly and additional patents that extend monopolies beyond 20 years, pushing up the cost of some crucial medications.

Malaysian Pharmaceutical Society president Amrahi Buang says the government’s decision shows it has the political will to address this chronic problem, calling it a “major breakthrough”.

He adds, “The price control should not be applicable to all types of medicines but should focus on medicines requiring prescription and also address proper labelling and itemised billing,” he says.

Meanwhile, Medical Practitioners Coalition Association of Malaysia representative Dr M. Raj Kumar recently said that prices of drugs should be controlled but this should be done in tandem with the harmonisation of the fee schedule for general practitioners with private hospital-based doctors.

Malaysian Organisation of Pharmaceutical Industries (Mopi) president Billy Urudra says Mopi, which is made up of 45 members who are mostly local generic drug manufacturers, prefers that open market competition determines fair price instead of a price control. This was expressed to the Health Minister in a townhall meeting on April 2.

He says it is more important for the government to expedite approval of generic drugs to get them into the market faster and allow competition, and to update intellectual property laws to prevent the lengthening of protection for innovators that leads to continuous high prices.

A mechanism to establish a price based on prices from various countries seems acceptable, Urudra says, but it is best to choose a country that has a similar economic growth as Malaysia because benchmarking against developed countries may result in higher prices, he says.

Although Thailand and the Philippines do not have such a control mechanism, the prices in these countries could serve as a comparison, he adds.

Consider cost variance

While the Pharmaceutical Association of Malaysia declined comment for this article, the Association of Private Hospitals of Malaysia president Datuk Dr Kuljit Singh says the association does not support a move that seeks to control the prices of medicines in private hospitals.

Unlike dispensing in a retail pharmacy, medication administration in a hospital involves other costs, such as medication review, drug counselling, compliance monitoring, and titration of dosages as patient conditions change, he says.

He says there is a host of direct and indirect costs associated with dispensing medications in a hospital, which varies across private hospitals depending on geographical locations, levels of service, and specialities.

“We have cautioned against a blunt policy that disregards this cost variance and brought this up with the Pharmaceutical Services Division at a townhall meeting on Feb 28 this year.

“We were given an undertaking it would be considered,” he says.

Dr Kuljit also says that such policy and regulatory measures should be made in tandem with adjustments to private hospitals’ overall payment system where direct and indirect costs are lumped together into a few chargeable items – medication services is one of these.

“This was the result of a distorted payment structure for private healthcare where proposals to realign increases in these costs to their proper categories – such as room and board rates – were met with resistance.

“The increases were inevitable due to a number of factors such as inflation, exchange rates and higher manpower requirements,” he says.

Asked what other charges are lumped together with medicines and other “charge-able items”, Dr Kuljit says there is expensive equipment that hospitals can only charge for when used such as medical pumps, used after cardiac surgery in an emergency.

On why drug prices in private hospitals are much higher than that of drugs sold in pharmacy outlets, he says the overhead costs of running the pharmacies are lower and they can buy in bigger bulk.

Dr Kuljit argues that private hospitals make an average of 5% to 7% profit, up to a maximum of 10%, and this is considered low.

Ooi, who is also a business consultant, questions the need for the high mark ups on drugs when the hospitals are already charging for almost every other possible thing, including cotton wool.

“The only way to show proof is to see their bottom line,” she says.

Private hospitals have captive customers which retail pharmacies do not have, which indicates a higher economies of scale, she argues.

Moreover, most retail pharmacies are placed in prime locations with rental per month ranging from RM7,000 to as high as RM50,000, she says.

Meanwhile, TWN’s Dr Lim asks if private hospitals are not making money hand over fist, adding that the CEO of one healthcare company is one of the highest paid CEOs in the country, earning more than RM33mil last year, according to reports.

“And are the big private hospitals not making huge profits, or else why are they expanding?” he asks.

For decades, Malaysians have complained of high medical charges, with some facing a financial catastrophe or maxing out their insurance coverage in a health crisis. High drug costs are a major concern here.

The drug price control measure and a central pool procurement system for medicines (to begin at the end of the year) are the bold measures the government has announced it will implement to address the issue.

However, in tandem with these measures, the government also needs to remove the unnecessary extensions of patents and examine the role of the middleman in the drug supply chain to the government.

By Loh Foon Fong
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Rise in Sabah Malaria cases

Thursday, May 2nd, 2019

KOTA BELUD: A total of 2,316 Malaria cases were reported in Sabah in 2018 with two deaths compared to 2,004 cases in 2017. This showed an increase of 15.56 per cent in the number of cases.

“This year alone, 768 Malaria cases have been reported,” said Tempasuk Assemblyman Datuk Musbah Jamli.

For Kota Belud, in 2018, there were 57 cases reported where Kg Taburon contributed nine cases. This year there were 11 cases reported compared to 25 cases in 2018.

“Most of Malaria cases were attributed to the various activities of villagers comprising plantation, agriculture, hunting and forestry.

“The prevention of malaria should not only be the responsibility of the Health Department or government alone, but society should be equally responsible for maintaining the health of families,” he said when officiating at the World Malaria Day Programme at Kg Taburon, here.

Musbah said the department carried out various preventative measures including fogging and raising awareness on the matter.

It is important for the community to take precautionary measures to prevent malaria infection, in line with the theme of World Malaria Day this year, “Zero Malaria Starts From Us”.

“Among the steps we can take is to reduce outdoor activities at night and wear appropriate clothing when performing activities such as rubber tapping. The use of insect repellent is also strongly encouraged.

By: Gindanau Sakat.

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Eat more rice, lose weight … yes, according to this study.

Wednesday, May 1st, 2019

GLASGOW (Bloomberg): Eating rice may help prevent obesity, research suggests.

Experts found that people following a Japanese or Asian-style diet based on rice were less likely to be obese than those living in countries where rice consumption was low.

Researchers said low-carbohydrate diets “which limit rice” are a popular weight-loss strategy in developed countries but the effect of rice on obesity has been unclear.

They looked at rice consumption in terms of grams per day per person and calorie intake in 136 countries.

The researchers calculated that even a modest increase in rice consumption of 50g per day per person could reduce the worldwide prevalence of obesity by 1% (from 650 million adults to 643.5 million).

Prof Tomoko Imai, from Doshisha Women’s College of Liberal Arts, Kyoto, Japan, who led the research, said: “The observed associations suggest that the obesity rate is low in countries that eat rice as a staple food.

“Therefore, a Japanese food or an Asian-food-style diet based on rice may help prevent obesity.

“Given the rising levels of obesity worldwide, eating more rice should be recommended to protect against obesity even in Western countries.”

Giving possible reasons why rice can help, Prof Imai said rice was low fat, adding: “It’s possible that the fibre, nutrients and plant compounds found in whole grains may increase feelings of fullness and prevent overeating.”

The authors concluded: “The prevalence of obesity was significantly lower in the countries with higher rice supply even after controlling for lifestyle and socioeconomic indicators.”

Tam Fry, chairman of the National Obesity Forum, said: “We have known for centuries that Far Eastern populations tend to be slimmer than in the West because rice is a staple food, but few obesity specialists may have appreciated why.

“This novel research is the first to hypothesise that we could nail obesity by eating a modest amount more.”

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‘Be aware on importance of healthy, balanced diet’

Monday, April 29th, 2019

KOTA MARUDU: Everyone should be aware on the importance of a healthy and balanced diet, said State Health Director, Datuk Dr Christina Rundi.

Dr Rundi said although it seems a trivial matter to some, nutrition should be taken seriously because imbalance to it give rise to many diseases

“Not only because of over eating, one can suffer from diseases such as hypertension, obesity and diabetes, but lack of food is also a cause of illness due to lack of nutrients.

“Having awareness on keeping a balanced diet is important, especially during this current times, with the diversity of food sources, plus easy access, including online trading,” she said at the State level Nutrition Month 2019 held at the Kota Marudu Community Hall, Saturday.

Over 800 people attended the one-day event which featured various activities such as health screening, blood donation drive, dental treatment, colouring contest, games and interaction exhibition, lucky draw tickets and sales of local food products, among others.

Dr Rundi also presented a special programme award called “Cara Hidup Anda Terbaik (C-HAT)” to Sekolah Kebangsaan Bawang in Tamparuli.

The event was made possible by Kudat Health Officer, Dr Kwang Kugan and Kota Marudu Health Officer Dr Athira Naseruddin together with members of the Ministry of Health.

Dr Rundi said the Nutrition Month programme is not just for the community in Kota Marudu but for all the people in Sabah, especially those who are busy working to be aware and begin to invest in the importance of a balanced nutritional care from now on.

She said Sabahans should be grateful that there are many choices of food including a variety of seafood, vegetables, fruits and rice.

By: Patimang Abdul Ghani.

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Lee: Educational enforcement on smoking ban to be intensified in rural areas.

Sunday, April 28th, 2019
Filepic is for illustration purposes

Filepic is for illustration purposes

IPOH: Educational enforcement on smoking ban will be intensified in rural areas nationwide, says Deputy Health Minister Dr Lee Boon Chye.

He said support of the ban at urban areas was encouraging, but there were still pockets of non-compliance at rural areas.

“We need to enhance educational enforcement at villages, and out of town areas, because we find people settling there are still not adhering to the ban,” he told reporters at a health community event held in Gunung Rapat here on Sunday (April 28).

It was reported recently that the ministry had extended the six-month educational enforcement period that was enforced in Jan 1, this year.

Dr Lee said the extension did not mean that people could smoke at open air eateries.

“If people are still smoking openly at such eateries, refuse to follow advice, they can be issued a fine.

“We are not punishing smokers, but our intention is to give them a chance to quit, reduce smoking or if they can’t do that, then at least they should not smoke in public,” he added.

On claims by restaurant owners that their business was dropping, and the economy was affected, Dr Lee said “The government collects between RM4bil and RM5bil in taxes from the tobacco industry annually, but spends at least RM16bil a year to treat smoking related illnesses.”

By Manjit Kaur
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Influenza: A real threat to young children.

Wednesday, April 24th, 2019

In their imaginary world, children could be superheroes fighting fearsome monsters.

In real life however, children are quite helpless against many threats to their health and well-being – influenza is one of them.

Worldwide, this disease is responsible for between 290,000 and 650,000 respiratory-related deaths annually, many involving young children.

Younger age, higher risk

Children are a high-risk group when it comes to influenza. While healthy individuals tend to experience mild to moderate symptoms, young children may suffer severe flu.

This is shown in a study where children hospitalised from influenza were either admitted into intensive care (12%), developed respiratory failure (5%), had bacterial co-infection (2%), or even died (0.5%).

The US Centers for Disease Control and Prevention (CDC) also estimates that every year, flu-related hospitalisation among children younger than five years ranges from 7,000 to 26,000 in the United States.

This could be because such young children have immature immune systems. Furthermore, those below six months are not old enough to be vaccinated against influenza.

Children with pre-existing medical conditions have a higher likelihood of getting hospitalised for influenza. Of the 40% of children studied by Dawood, 18% had asthma, 15% (of those below two years) had been born prematurely, and 7% had developmental delay.

However, this does not mean that other children are safe.

A 25 year-long study of 1,665 healthy children found that influenza was associated with high death rates in otherwise healthy children aged below five years.

Acute otitis media (painful middle ear infection) and lower respiratory tract disease were highest among children aged under two years old.

Children easily catch and spread influenza

Influenza can spread in a couple of ways. If an infected person coughs or sneezes openly, influenza viruses are released into the air.

When inhaled by someone else, these viruses make their way into the respiratory tract and start to replicate.

Alternatively, the droplets may land on, or be transferred by touch to, items like toys, remote controls, door handles, bed sheets, blankets and so on. The viruses can live there for hours or days.

In that time, anyone handling those contaminated objects (called fomites) will get the viruses on their hands and eventually into their mouths, nasal passages and eyes where the viruses can enter the body.

Seeing how children share toys and have close contact with their school friends, siblings and other family members, it is no surprise that they can easily catch and spread the disease.

In fact, they shed greater amounts of the virus for longer periods than adults do, despite displaying symptomatic illnesses for a shorter time. All this often comes at their own and their family’s detriment.

A study by Principi et al found that most children with influenza attended day-care centres or schools. They also had a higher likelihood of fever and croup (an infection of the upper airway characterised by a barking cough), and a longer school absence.

Their parents and siblings also had more respiratory illnesses, needed more medical visits, missed more work or school days, and needed help at home to care for the ill children for a longer period of time.

Vaccinate children against influenza

It helps to teach children good hygiene and etiquette to reduce the risk of influenza infection, to some extent. These include hand washing, and staying away from friends who show signs of influenza.

However, vaccination is the best way to prevent influenza.

The CDC recommends vaccination for all children older than six months (as well as adults who care for children).

Two doses of vaccine should be given to children aged six months to eight years while only one dose is required subsequently.

Influenza vaccination should be given annually to protect against new mutations of the viruses that are expected in the coming season.

This will substantially reduce the risk of severe disease that may result in hospitalisation or serious complications.

It will also help prevent the virus from spreading at home (particularly if you have a baby under six months old) or in school.

While temperate countries experience influenza seasons in winter, we in Malaysia have it all-year round. As such, you should get your child vaccinated as soon as possible, and repeat the process every year.

Article courtesy of the Immunise4Life programme by Health Ministry, Malaysian Paediatric Association and Malaysian Society of Infectious Diseases and Chemotherapy, supported by Sanofi Pasteur. Learn more at or

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Five women died after consuming abortion pills bought online, says report.

Wednesday, April 17th, 2019

PETALING JAYA: Five women died after consuming abortion pills purchased online from 2015-2017, reported Sinar Harian.

Health Minister Datuk Seri Dr Dzulkefly Ahmad told the Malay daily that four cases occurred in 2015 while one more case occurred in 2017.

“Four of the cases were caused by bleeding after delivery, while another case involved an amniotic fluid embolism. All the cases involved the intravaginal insertion of products that contained misoprostol,” he was quoted as saying.

The Ministry also recorded three cases that were classified as life-threatening to the women who consumed the pills.

Dr Dzulkefly said that to avoid their sales from being detected by the Pharmaceutical division, the syndicates selling the pills used blogs, Facebook, Instagram and WhatsApp among others.

They also used online websites such as, 11street, Lazada, Shopee and others.

Dzulkefly said that since 2017, 10 raids were successfully carried out and 17 items that contained misoprostol worth RM85,313 were seized

About 17 items worth RM85,513 smuggled in mostly from India and China have been seized.

Most of the pills were imported illegally from overseas, especially China and India.

Health Ministry director-general Datuk Dr Noor Hisham Abdullah said that data recorded from January until April 15 recorded 18 websites that sold cytotec were determined and investigated.

Most of them were operating on Facebook and blogs.

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Mystery illness at Perak school turns out to be Influenza A(H1N1).

Wednesday, April 17th, 2019
IPOH (Bernama): Claims of a mysterious illness in Sekolah Tuanku Abdul Rahman (STAR) here that went viral on social media Tuesday (April 16) are not true as it is just an Influenza A(H1N1) infection, it was revealed Wednesday (April 17).

Perak Health, Consumer Affairs, Civil Society and Human Resource Committee chairman A. Sivanesan (pic) said 79 students, aged from 13 to 17, and a teacher were found to have fever and cough yesterday.

He said two of the students were admitted to a private hospital for treatment and observation and one of them was discharged today. The rest received outpatient treatment.

“They are all reported to be in stable condition. Twenty-eight of them were isolated. Four of the those with cough were confirmed to be Influenza A(H1N1) positive.

“The situation in the school is under control,” he told a press conference at the Bangunan Perak Darul Ridzan.

Sivanesan was asked to comment on a Facebook post that claimed that 100 students from the school were afflicted by a mysterious illness, with many of them coughing, vomiting and having a fever, which prompted their parents to take them home from the all-male residential school.

He said the Kinta District Health Office had taken measures to prevent the spread of the infection, including isolating the sick students.

As a means of checking infection, the public is advised to take preventive measures, including getting treatment at the clinic or hospital for influenza symptoms such as fever, cough and sore throat.

“Stay home during the period when you have the symptoms and reduce the number of meetings with friends or relatives, avoid public places such as shopping centres, schools, kindergartens or workplaces and do not attend public events,” he said.

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Improving lives through exercise

Tuesday, April 2nd, 2019

TODAY is April 2, and while it’s yet another Tuesday to most of us, it’s also World Autism Awareness Day.

As such, we now have a chance to show our support for people living with the challenges of autism, their families and perhaps even organisations out there that show them their due respect and empower them.

This is why I am highlighting Care2Run and the work they do every Sunday at Taman Aman in Petaling Jaya to help children, teenagers and young adults with autism, Attention Deficit Hyperactivity Disorder (ADHD), Down Syndrome among other challenges.

Speaking to Care2Run co-founder Prem Kumar Ramadas, I got a better idea of how Care2Run operates and why it meets every Sunday to help people with intellectual challenges.

He said that Care2Run began in 2015, and shared with me how it began working with children and youth with learning challenges.

“We did research beforehand to find out what was needed by the community in Petaling Jaya and found that there was an under-served community in schools from dysfunctional and poor families that did not belong to a welfare home,” said Prem.

“In the beginning it was predominantly for high-risk children, eventually parents who saw us while we were working with children at the University of Malaya asked us if we could work with children with learning challenges. That was the beginning of phase two for Care2Run,” he added.

Prem said that Care2Run had operated at several places before coming to Taman Aman, adding that they shifted to Taman Aman as the park is very friendly for people with disabilities.

He also said that Care2Run worked with three schools up to 2018 as part of the school’s co-curricular activities – SMK Sri Permata, SMK Kelana Jaya and SMK Sunway.

“We are going to be expanding to different schools which have students with learning challenges in 2019. Currently we are working with adolescents with learning challenges who are not with any schools. Those in our programme right now came in through word of mouth,” said Prem.

He explained that on an average Sunday, Care2Run aims to support 20 youth with learning challenges from the age of nine to 34 and support is on a one-to-one basis.

Prem also shared with me how Care2Run designs the sporting activities in which the 20 youth participate in – a form of sports Care2Run calls “developmental sports”.

“Developmental sports are sports that recognize individual learning needs. We do not compete with each other, we compete with ourselves to do better. For example, we have combined the traditional hopscotch with an exercise ladder and developmental education as a way to teach them numbers,” said Prem

“Our hypothesis is that developmental sports can help young people with learning challenges to be more active, and enhance quality of life and cognitive functions,” he added.

I then spoke to Care2Run volunteer Gregory Phua, who helps design Care2Run’s sporting activities to get a better understanding of what goes into creating them.

“They might be on the autism spectrum and live with dyslexia at the same time, and this compounds the challenges for them. As such, I design the activities to help bring about specific behavioural actions. For example, some children are driven by sight and touch and we need to take this into account,” he said.

Phua also said that there is a need to ensure that change happens on an intellectual level with the activities.

“All the exercises and activities have to incorporate safety, a learning experience and the activities need to be visually connected for children so they can identify it and participate right away. We need to be clear and precise as possible,” he said.

Phua basically said that the aim of all of Care2Run’s initiatives is to give the youth with us the skills to lead at least a semi-independent life as they move into adulthood, adding that these concepts and skills were woven into the games he designed.

He also shared with me why Care2Run’s activities take place outdoors.

“If you put people behind four walls, you don’t get a natural environment. When you get a natural environment, you begin to see how they interact with other people,” he said.

It was at this point I asked Prem how the public could help Care2Run with their efforts, and he said that there are three ways people can help – the first being by helping the organization with research it is doing on developmental sport.

“We would love to get 20 high-functioning youth who have Down Syndrome or autism to help with our research on the efficacy of our programme. Currently Care2Run has 10 high-functioning participants along with 10 who are moderate to low-functioning. We need 10 more high-functioning students,” he said.

Prem also said that Care2Run also needs mentors.

“As youths join us we will need more mentors, and we would welcome 20 highly-energetic mentors to come and assist us on a three-week basis,” he said.

Prem also said that Care2Run needs financial help to run.

“We need about RM20,000 to operate every month to build and store learning aids and to have several employees so we can run these activities on a consistent high-quality basis,” he said.

And if you’re questioning why you should help Care2Run, this is what Prem had to say:

“We are doing something novel – developmental sports – to help enhance the cognitive functioning of these young individuals and their quality of life. We help them gain a measure of independence as their cognitive function improves.”

by Tan Yi Liang
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Thalassaemia patients in dire straits over low blood supply

Monday, March 25th, 2019

(Seated, left to right) Lee, Fazalena, Francis and Khoo after the First National Conference for Thalassemic and Parents press conference yesterday.

PENAMPANG: Some 1,800 Thalassaemia patients in Sabah have to deal with the critical issue of low supply in blood banks, said Federation of Malaysian Thalassaemia Societies (FMTS) deputy president and Sabah Thalassaemia Society president Francis Mujim.

Francis said the figures were not official, but the problem of low blood supply had created a real threat to patients’s safety as they were getting discharged with low haemoglobin (hb) levels from hospitals.

He added that discharged patients, in urban and rural Sabah with low hb, such as level five to six, are weak, get tired easily, and cannot walk long distances.

Thalassaemics, a group with inherited conditions that cause a person to produce either none or too little haemoglobin that is used by red blood cells to carry oxygen to organs in the body, face other health threats such as cardiac arrests.

“That’s why the critical problem for Thalassaemia patients now is the blood supply. To get this blood supply, we have been working with a few NGOs and some cooperation with other departments, but we still cannot cope with the blood needs of the state.

“We need more or less 1,700 to 1,800 pints of blood every month for Thalassaemia, not inclusive of other patients,” he said during the First National Conference for Thalassemic and Parents press conference held here yesterday.

“We can understand the problem but what we ask through this conference is to empower, provide more information to patients so they can communicate to doctors the repercussions should they be discharged with hb 6 (for example),” he explained.

He stressed that there is a clinical guideline outlining the management of Thalassaemia, and patients should not be allowed to go home with low levels of hb.

He added that as of August 2018, the number of Thalassaemics in Malaysia was 7,848, 55% of which are under the age of 20.

Francis said since Sabah has the highest number of Thalassaemia majors, the conference is held to create a more informed Thalassaemic community.

The conference themed ‘Empowerment Through Knowledge’, targeted to create knowledgeable patients and parents, is expected to be held on September 14 and 15 this year in Sabah. However, FMTS president Khoo Swee Hong said the location has not been determined yet due to budget.

Khoo said  the conference also aims to standardize the treatment of Thalassaemics in every Malaysian state, amongst others.

Among the targeted attendees are Thalassaemics, their families and doctors and nurses providing medical management to the patients. Exhibition booths will also be held to showcase the newest administration methods on chelation as well as other management needs of Thalassaemia.

Khoo said among the FMTS fund-raising events with Penang’s Friends of Goodwill for the conference are the Silent Art Auction, June 8 to July 6 at Penang Pac, Straits Quay, Tanjong Tokong in Penang, and the Charity Food Fair on August 18 at a yet to be confirmed venue.

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