Rare Diseases - Awareness and Funding Needed



In Malaysia, there is no official registry for rare diseases resulting in the absence of data as there is no tracking of the patients.

According to Rare Disease Malaysia website there are at least 79 types of rare diseases found in Malaysia.

Although the number of patients of each disease is small, rare disease patients as a collective is common.

The Health Ministry has yet to set an official definition for rare disease, complicating the monitoring and regulation of the management of rare diseases.

The Malaysian Rare Disorders Society (MRDS) has, therefore, taken it upon themselves to classify rare disease as a disease that affects less than one in every 4,000 people of the general population.

Malaysia does not have a National Rare Disease Policy.

Last year, a letter jointly written by three doctors from Universiti Sains Malaysia and University Malaya Medical Centre revealed that only 60% of rare disease patients in Malaysia are receiving treatment due to a lack of treatment options or a long waiting list.

On Dec 17 last year, Deputy Health Minister Dr Lee Boon Chye had told the Dewan Negara that the ministry would be formulating a National Framework for Rare Diseases but did not provide a timeline.

Dr Lee said the framework would include the setting up of a governance committee and a rare disease data system to facilitate policymaking, programmes, strategy and intervention.

Treatment costs for rare diseases are exorbitant, said Sunway Medical Centre Clinical Genetics external consultant Prof Thong Meow Keong.

“Drugs to treat neurological conditions such as spinal muscular atrophy may cost up to RM2mil yearly. Bone marrow transplants can come up to RM400,000, while growth hormones, up to thousands a month,” said Prof Thong.

The medical fees for rare disease sufferers are often well beyond the patients’ and their caregivers’ means, giving rise to the need for funding.

Malaysia Lysosomal Diseases Association (MLDA) president Lee Yee Seng said most parents have no choice but to rely on government aid and public generosity.

Lee himself has two daughters, Wei Ling and Yen Ling, diagnosed with Pompe disease, caused by an accumulation of glycogen in the lysosome due to a deficiency of acid alpha-glucosidase, an enzyme that converts glycogen to glucose. ERT for both of them can come to RM2mil annually.
 
Lee feels very grateful for the RM16mil budget allocated by MOH this year to Hospital Kuala Lumpur (HKL) for patients with rare diseases, including those suffering from LSD. Together with Zakat Selangor and corporate sponsorships, 50 LSD patients have benefited from these funds.

On Lee’s wish list are two key items: that the government come up with laws so that those with rare diseases can get prompt medical attention, and for stakeholders to come forward with funding to ease the suffering of those afflicted.

There are 90 other LSD patients registered with MLDA. The association was founded in 2011 and since then, 10 patients have died caused by complications brought on by their disease. For now, there is an urgent need for seven LSD patients to receive ERT treatments.

/theSTAR 28-02-201 


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Compulsory Vaccinations Proposed



Doctors have called for all children in Malaysia to be first immunised against diphtheria and measles as a practical way to kickstart the compulsory policy on vaccination as suggested by the Health Ministry. This is because both the diseases are the most serious.

Asia Pacific Pediatric Association secretary-general Datuk Dr Zulkifli Ismail said there was no need for a blanket ruling mandating vaccination for all 12 major childhood diseases.

“This would protect all children in schools, kindergartens and nurseries,” said Dr Zulkifli, who is also the technical committee chairman of Immunise4Life, an expert-driven community education initiative to promote immunisation.


Dr Zulkifli said at present, it is not mandatory for children to be immunised before being allowed to enrol in school.

He was responding to a statement by Health Minister Datuk Seri Dr Dzulkefly Ahmad on Saturday that it would be tabling a proposal and a policy to make immunisation vaccination compulsory.

According to the Health Ministry, misinformation about vaccination had led to a huge jump in the number of vaccine-preventable diseases, with cases of measles jumping over ten-fold from 125 in 2013 to 1,467 last year.

A lack of immunisation was detected last year in all six measles deaths recorded and in 19 of the 22 deaths from whooping cough (pertussis).

Countries that had made immunisation for certain diseases mandatory include France, Bel­gium and Italy.

Minister in the Prime Minister’s Department Datuk Seri Dr Mujahid Yusof said the Federal Territory Mufti had issued a fatwa stating that vaccines made in Malaysia were halal (permissible).
Mujahid urged sceptics debating whether immunisation vaccination was allowed in Islam to stop, adding that this was affecting children’s health. “In Islam, we are clear that based on the fatwa, it is encouraged for Muslims to vaccinate their children but it can be compulsory if this (non-vaccination) affects the health of the children,” he said.
/theSTAR 25-20-2019

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Effort made to reduce Drug Procurement Cost by the MoH



Patients of serious illnesses such as cancer may soon be able to get their much-needed drugs at lower prices. Deputy Health Minister Dr Lee Boon Chye said today this would be made possible through the introduction of a central pool procurement system that covered government hospitals, university hospitals and army hospitals. 

Through the system that will be introduced in October, several hospitals will be combined as a single buyer. This could help to reduce the cost of these medicines through bulk purchases. 

Under the new system, the Health Ministry will make purchases of at least 80 varieties of drugs together with the Education Ministry, which oversees university hospitals, and the Defence Ministry, which is in charge of army hospitals.    

Lee said discussions with the other ministries are ongoing. “We will also have to get the approval of the Finance Ministry,“ he told a press conference after attending a forum on “Improving Access to Affordable Cancer Treatments in Malaysia” at Universiti Malaya. 

Currently, cancer treatment in Malaysia can cost anything from RM16,000 to RM400,000. The high cost of medical care has become a major challenge for the public healthcare system as well as patients.

According to Universiti Malaya, more than 75% of cancer patients in Southeast Asia sink into financial ruin or die within a year of being diagnosed with the disease. 

In Malaysia, medical expense is a major contributor towards financial calamity. A total of 17% of those who seek treatment at government hospitals end up in financial trouble. Of those who seek treatment at university hospitals and private hospitals, 31% and 91% respectively experience financial catastrophe. 

According to the university, government health programmes such as Peka 40 and MySalam could help ease the burden of those in the B40 group. However, those who seek treatment at university and private hospitals are exposed to a high risk of financial crisis. 

Meanwhile, Pharmaceutical Service Division, Senior Director Dr Ramli Zainal said efforts would be made to obtain drugs at lower prices once current tenders have expired. “We also need to monitor and evaluate the progress of the central procurement system.

/theSUN 25-02-2019

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Malaysia: Health Tourism, Low Cost with Great Health Care



The article herewith is reproduced from "International Living Magazine-February 2019".

For years, many people from surrounding countries, like Indonesia, Hong Kong, and Singapore, have come to Malaysia for affordable, high quality healthcare. All the doctors speak English and most were trained in the UK, U.S., or Australia so they are familiar with Western standards of care. Also, many of the hospitals in Kuala Lumpur and Penang are JCI accredited, meaning that they are considered to meet the gold standard in healthcare throughout the globe.

More than 800,000 foreigners seek treatment in the hospitals in Penang and Kuala Lumpur every year. There are specialists in every hospital, but unlike in the U.S., you don’t have to wait for months to get an appointment. Just turn up to the hospital, register, then take a number and wait your turn. If you are then referred to another doctor, or need to get an X-ray or scan, that will also happen on the same day in the same place.

Prescriptions in Malaysia cost a third of what you pay at home. But it’s not just the cost that’s attractive; it’s the service. The pharmacists, like the rest of Malaysia’s medical staff, are well trained and informed. Malaysians are friendly people, but it’s the genuine interest that they take in you, no matter how small or large the issue, which impresses. It takes you back to a time when personal service meant something. That same service is alive and well here.

There are doctor’s clinics throughout the country, which are perfect places to get treatment for something minor like a cold, flu, or sinus infection. They usually charge $10 and because these are small clinics you won’t have to wait as long as you would in a busy hospital. But for anything more serious, it’s best to go to a specialist or general practitioner in one of the many top-notch hospitals in the country. A first-time doctor or specialist visit is usually between $15 to $65 with follow-up visits around $11 to $28. If you are admitted, the overnight stay will cost roughly $55 to $200 for a private room per night.

Many of the hospitals offer health screening packages which include a physical, chest X-ray, ECG, blood work (43 different tests), abdomen ultrasound, and a vision test. More specific tests can be added on but the basic package starts at less than $120.

Dentistry in Penang is just as high quality. Just like the doctors, most are schooled in the West and speak English. The technology is the same, and in some cases more advanced than at home, depending on the office you go to. Cleanings start at $22 at a modern office with state of the art equipment, and it’s only $29 for a filling. Porcelain crowns start at $400, all just a fraction of the cost in the U.S.

There is a two-tier healthcare system in Malaysia; government-run universal healthcare and a co-existing private healthcare system. Expats can choose whatever hospital they want and pay out of pocket if they don’t have insurance. Most expats choose to go to the private hospitals (which tend to be more expensive) instead of the public ones and will still save money when they pay out of pocket for most minor visits. Private health insurance is available, and many expats take out policies for any major health issues. International insurance companies like AIG, BUPA, and Cigna offer various plans for expats—some include medical coverage while you travel as well.
/International Living Mag Feb 2019

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Malaysia Population end 2018: 32.2 million



Malaysia’s population grew by 1.1 per cent to 32.6 million in the fourth quarter (Q4) of 2018, compared to 32.2 million in Q4 2017, demographic data released by the Department of Statistics Malaysia revealed.
Of the total, 16.8 million were male and 15.8 million female, chief statistician Datuk Sri Dr Mohd Uzir Mahidin said in a statement.
The preponderance of males was also reflected in births in Q4 2018 – 65,800 babies were male and 61,600 were female. In total, there were 127,400 live births during the period – a decrease of 2.5 per cent compared to Q4 2017, which saw 130,600 live births.
“Overall, Selangor is the most populous state in the country, with 6.5 million people; while the Federal Territory of Putrajaya has the lowest population, with 91,900 people,” Mohd Uzir added.
As for deaths, 41,400 fatalities were recorded in Q4 2018 – a decrease of 1.9 per cent compared to Q4 2017, which saw 42,200 deaths.
The number of males who died was 23,800, while females accounted for 17,600 deaths.
/NST 12-02-2019

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The deadly Disease: Cancer



Data shows that cancer strikes one in every nine Malaysian women and every 10 men.

To make matters worse, cancer is also mostly detected late in Malaysia with almost 60% of patients discovering it in stages three or four when the disease has already spread.


While the Health Ministry has been taking measures to battle the deadly disease, there is a lack of oncologists in the country.

There are only 115 oncologists in the country – just five more than the number in 2017. Of these, 42 are in government hospitals which include university hospitals, while the remaining 73 work in the private sector.

Health Ministry deputy Director General (public health) Datuk Dr Chong Chee Kheong said the ideal ratio would be eight to 10 oncologists per million people.

“If the Malaysian population is 34 million, the current ratio stands at 3.4 oncologists per one million people,” Dr Chong said.

He said 56 candidates were pursuing Masters in Clinical Oncology in Universiti Malaya, adding that the yearly intake would increase.

The existing National Strategic Plan for Cancer Control Programme (NSPCCP), he added, was also progressing well with improvements in screening coverage for main cancers such as colorectal cancer.

“Work is also in progress to build a cancer centre in the northern region,” he revealed.

On the late detection of cancer, he attributed this to mainly poor screen­­­ing uptake and delay in re­­cog­nising early signs of the disease.

“Detecting cancer at a late stage leads to higher cost of treatment and reduces the chance of a cure,” he said.

Dr Chong said 45% of cancer pa­­tients in Malaysia also faced financial problems, based on the Asean Costs in Oncology study by the George Institute for Global Health in Australia.

“This means the cost of their treatment exceeds 30% of family income after a year of being diagnosed with cancer,” he said.

He advised the people to change unhealthy habits, with the World Health Organisation estimating that between 30% and 50% of cancers could be prevented through a behavioural shift. Smoking, physical inactivity, unhealthy diets and alcohol intake were the risk factors for cancer.

/theSTAR 0-02-2019 

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