Standardise level of care for thalassaemia patients: Federation
Published on: Monday, March 25, 2019
By: Zam Yusa
KOTA KINABALU: The Federation of Malaysian Thalassaemia Societies urged health authorities in Sabah to standardise the level of care for patients who it said are currently receiving disparate treatments at different hospitals in the State.
Its President Khoo Swee Hong said while treatment at hospitals is excellent, some patients come to a hospital needing blood transfusion only to be told their haemoglobin level is still good and sent home.
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Thalassaemia is a genetic blood disorder and people with it are not able to make enough haemoglobin (HB), which causes severe anaemia.
“The Government’s treatment of thalassaemia patients is fantastic as Malaysia is one of few countries which provides free healthcare,” Khoo told a press conference after a meeting, here, Sunday.
“The only problem is that the level of care for thalassaemia patients differs from hospital to hospital, with some doctors not giving them transfusion and sending them home, saying they don’t need transfusion because their HB level is still okay, while other doctors would give transfusion to patients who have the same level of HB.
“Usually, when patients have HB9 level, that’s the time for them to top up as it is the international standard. While some doctors do give transfusion to patients with this level of HB, some others don’t give to patients with lower HB, as low as HB6.
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“When patients are told that their HB6 or HB5 is still okay, refused transfusion and sent home, which has happened in several hospitals, they go home and feel very weak and tire out easily.
“We understand that hospitals have a critical low blood supply problem sometimes even after help from NGOs, but we hope treatment is standardised and all patients with HB9 and below be given transfusion without exception,” said Khoo, adding the normal HB levels for women and men are HB12 and HB13 respectively.
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Sabah Thalassaemia Society President Francis Mujim said the federation will hold a conference, the first of its kind in the region, to enhance awareness of the disorder among the people and patients.
“We have received interests to attend from countries such as Singapore, Indonesia and the Philippines for the conference,” he said.
“As of August last year, there are 7,848 patients in Malaysia, 55pc of whom are below the age of 26. Sabah has the most thalassaemia patients at about 1,800.”
The Federation’s Secretary, Fazalena Johari, said the conference, whose venue will be determined later, will bring awareness about, among other things, the discrimination patients receive.
Fazalena, who has the disorder, said patients are discriminated against in job opportunities, with employers thinking all people who have the disorder are not capable of working.
“Some thalassaemia patients can still lead an active lifestyle and even do outdoor activities such as hiking and running like myself,” she said.
“But some employers think we cannot work. I hope people will begin to change this perception when we hold the conference, through which we also aim to enhance patients’ confidence against the community who still hold stigma against them.
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