The world is gearing up to commemorate World Hemophilia Day on 17 April 2024. With a high national prevalence of the disease, the Malaysian healthcare ecosystem is at the cusp of change, where there is a need for initiatives that help raise awareness and undertake unified efforts for improved haemophilia care.
People with Haemophilia (PwH) lead a life where even the most minor injuries could turn life-threatening. The genetically inherited condition has two subtypes, A and B, and while they vary in severity, both subtypes are characterized by the inability for blood to clot properly, leading to prolonged, profuse bleeding.
Globally, one in every 5,000 male children that are born are diagnosed with haemophilia A, and in Malaysia alone, there were 1,048 people living with haemophilia in 2022
22 year-old Hariee Prabakaran recalls spending his entire childhood refraining from doing things he loved; playing badminton, participating in races, sports and other activities with his friends. A large part of his school life was spent in the hospital as he needed to be admitted for treatment every two weeks.
“I always had trouble making friends. Even in primary school, when other kids found out I had haemophilia, they would stay away from me, making me feel like I was a social outcast.” Hariee shares, speaking about what life was like growing up.
In their day-to-day life, PwH often face discrimination due to the lack of knowledge about their condition, which is often seen as a liability and burden in society.
Hariee has severe haemophilia A with inhibitors. His body has developed antibodies that dramatically reduces the efficacy of treatment, making him a part of the small subset of PwH who require innovative therapeutics that give them a chance to lead a normal life.
Like Hariee, all patients with high disease severity have their hopes eagerly tied to stronger innovation in haemophilia treatment that will give them a chance to live a life that is not constrained between just needles, doctors and hospitals.
Deepti Saraf, General Manager, Roche (Malaysia) Sdn. Bhd., shared:
“For the ones who live with it, haemophilia isn’t just a disease, it’s their reality. And the gravity of the condition impacts the quality of life of not just the person, but their caregivers too. Over 72% of all haemophilia A cases in Malaysia are classified as severe. But particularly for PwH who develop inhibitors, the burden intensifies, leading to psychological strain on families and caregivers. In light of these challenges, it is imperative that the government takes proactive measures and steps to address and alleviate the burdens associated with managing this condition.”
“With the enhanced burden on the families, there is a pressing need for more knowledge and support from the government to foster a supportive environment for not just PwH.” Deepti added.
Hariee’s mother, a former teacher and his full time caregiver shares:
“People living with haemophilia already have enough challenges to deal with. They don’t need the added burden of the stigma and the misinformation. More importantly, as caregivers, we should also be able to have a support system to help us cope. Every family deserves a chance to lead a normal life, or at least find some semblance of normalcy within it.”
The paradigm in haemophilia treatment has shifted towards enabling patients to lead healthy, active lives akin to the non-haemophilic population, emphasizing regular prophylaxis for those with inhibitors to prevent bleeding events. But there is still a long way to go to fully achieve this outcome.
Changing treatment regimes and bringing new and innovative therapeutics to the market solves only a part of the problem. In order to holistically change the perspective and attitude towards PwH, where haemophilia is seen more than a limitation, requires vigilant effort in educating the public.
It is crucial to take measures to keep the conversation about haemophilia relevant and ongoing. In collaboration with their healthcare partners, patients, caregivers, the ministry and other key members of the healthcare ecosystem, Roche Malaysia is proactively spearheading this initiative.
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*This initiative is supported by Roche Malaysia. Information and material contained in this press release is purely for educational purposes only. This material is intended for non-promotional purpose only and aimed to increase awareness on haemophilia and it is not meant for promotion of any specific product. The information is available to the public for information purposes only; it should not be used for diagnosing or treating a health problem or disease. It is not intended to substitute for consultation with a healthcare professional. Please consult your healthcare professionals for further advice, diagnosis or treatment.
