HARIEE Prabakaran recalls spending his entire childhood refraining from doing the things he loved, whether it was playing badminton, participating in races, sports or other activities with friends. In fact, a large part of his school life was spent in the hospital.
As someone living with haemophilia, the 22-year-old understands only too well the challenges and stigma that comes with the disease.
"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 a social outcast."
People with haemophilia (PwH) lead a life where even the most minor injury can turn life-threatening. This genetically inherited condition has two subtypes, A and B, and while they vary in severity, both subtypes are characterised by the inability of blood to clot properly, leading to prolonged, profuse bleeding should an injury happen.
Globally, one in every 5,000 male babies born is diagnosed with haemophilia A. In Malaysia, there were 1,048 people living with the disease in 2022, according to the World Federation of Haemophilia Report on the Annual Global Survey 2022.
Hariee has severe haemophilia A with inhibitors. This means his body has developed antibodies that dramatically reduce the efficacy of treatment, making him a part of the small subset of PwH who require innovative therapeutics to 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, which will give them a chance to lead lives unconstrained by needles, doctors and hospitals.
Roche (Malaysia) Sdn Bhd general manager Deepti Saraf says for those living with it, haemophilia isn't just a disease, but it's also their reality, and the gravity of the condition impacts the quality of life of of both patients and their caregivers.
"More than 72 per cent 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 to address and alleviate the burden associated with managing this condition, adds Deepti.
With the enhanced burden on families, there is a pressing need for more knowledge and support from the government to foster a supportive environment for sufferers of this disease and their families.
Haemophilia treatment has now shifted towards enabling patients to lead healthy, active lives akin to the non-haemophilic population, emphasising 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 only solves part of the problem.
To holistically change perspectives and attitudes towards PwH, there needs to be vigilant efforts to educate the public about this disease, and to keep conversations about haemophilia relevant and ongoing.