A 'rare' report card for the Pakatan government


IT'S May 9, and we all know what that means for us as Malaysians.

We know it means that it's now exactly one year since we dipped a finger in indelible ink, marked that "X" on our ballot papers and in the case of the vast majority of us - voted Pakatan Harapan into power.

Consequently, it also means that we have the right to take stock of their performance and give them a honest assessment.

Granted, they can't promise us everything given the state of the country's finances when they took power, but the fact remains that they should at least try to deliver on what they promised when it comes to instituting fair government policies and protecting our basic rights.

So, having said that I feel that the time has come to assess how they have fared when it comes to protecting and upholding the rights of a Malaysian community close to my heart, namely those living with rare disorders.

Of course, I didn't feel it would be fair if I made the assessment, so I spoke to a few friends who are actively fighting rare disorders to see what grade they'd give the Pakatan administration and what improvements they'd suggest.

The first friend I spoke to was Rachel Siew, who said that she'd give the Pakatan government seven and a half marks out of 10 for their first year in office.

"Honestly, the new government shows more concern and gives more coverage towards the community of Malaysians with rare disorders. Kudos to them," she said.

She said that one of the positive steps taken by the new government was to provide an additional allocation that is meant to cater to the health needs of Malaysians with rare disorders.

Under Budget 2019, an additional RM50mil was allocated for rare diseases treatment, Hepatitis C, programmes to overcome stunting among children, screening and haemodialisis treatment and enhanced primary healthcare.

"I am thankful and glad, and I hope this will increase yearly as there are now more individuals affected with rare disorders," said Siew,who lives with Morquio syndrome, a rare genetic disorder in which the body is unable to break down sugar chains that help build bone, cartilage, cornea, skin and connective tissue.

She also approved of the Zero Reject Policy established by Education Minister Dr Maszlee Malik, a policy through which 10,948 special needs students have enrolled in schools.

At this point, Siew suggested that the Pakatan administration pass an Act similar to the Orphan Drug Act of the United States to support the development of medication for rare disorders like hers.

She also suggested that measures can be put in place to encourage interaction between the medical profession - especially medical students - and Malaysians living with rare disorders.

"If doctors are more aware, it can lead to a proper diagnosis from an earlier age," she said.

I then spoke to Edmund Lim and Yap Sook Yee, whose son Branden has Spinal Muscular Atrophy Type 2 and they gave the Pakatan government a five out of 10 as they feel more needs to be done.

"It is not just about treatment and orphan drugs, there should be a holistic system of care to support families with an individual fighting a rare disorder. A proper womb-to-tomb support network needs to be put in place that encompasses even caregivers," said Yap, who is the Malaysian Rare Disorders Society vice-president

Lim also had his critique of the current administration, saying that non-governmental organisations are filling the gaps to improve the well-being of families affected by rare disorders.

"We have asked the government to coordinate and cooperate. Even after going to Parliament, the commitment given has been vague," said Lim.

He then pointed out another issue.

"The fund for rare disorders has been increased but it could lead to a worsening of inequities; those who get benefits would get more but those who are left out will be left behind," said Lim.

"However, we are optimistic. There is some dialogue. But we need to have proper dialogue that puts patients and caregivers front and centre," he added

At the end of the day, it looks like the Pakatan administration still has a lot of work cut out for them - and it's still up to us to make sure that everyone in Malaysia gets their fair due.

The question remains, though. Will we get blinded by political sideshows or stay the course and do what needs to be done over the next four years?

I hope we'll do the right thing and press for substantive change.


   

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