World Hemophilia Day 2024: Advocating for Change in Malaysia’s Healthcare Landscape
April 16, 2021 ArifAzhar

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 hemophilia care.

Understanding Hemophilia: A Daily Struggle

Hemophilia, a genetic disorder with two subtypes – A and B, poses significant challenges for individuals affected by it. The condition, characterised by impaired blood clotting, renders even minor injuries potentially life-threatening. Globally, hemophilia A affects one in every 5,000 male children born, with Malaysia reporting 1,048 cases in 2022 alone.

For 22-year-old Hariee Prabakaran, living with severe hemophilia A with inhibitors has been a lifelong journey marked by limitations. Childhood activities cherished by many, such as sports and outdoor play, were often off-limits. Regular hospital visits for treatment were a recurring feature of his school years, accompanied by the isolating experience of social ostracisation.

The Toll of Stigma and Misinformation

Discrimination and misconceptions surrounding hemophilia exacerbate the challenges faced by those living with the condition. Hariee’s story underscores the societal stigma and lack of understanding that often accompany hemophilia, adding layers of complexity to the lives of patients and their families.

Hariee Prabakaran, Person with Hemophilia A

A Call for Comprehensive Support

Deepti Saraf, General Manager of Roche (Malaysia) Sdn. Bhd., emphasises the urgent need for holistic support structures for hemophilia patients and their caregivers. With over 72% of hemophilia A cases in Malaysia classified as severe, the strain on families and caregivers is immense, necessitating proactive government intervention and community awareness efforts.

Looking Beyond Treatment: Fostering Understanding and Empathy

While advancements in treatment offer hope for improved outcomes, the journey towards destigmatisation and comprehensive support for hemophilia patients requires a multifaceted approach. Beyond medical interventions, education and public awareness are crucial in shaping a more inclusive society for individuals living with hemophilia.

A Collaborative Approach Towards Change

Roche Malaysia is at the forefront of initiatives aimed at driving awareness and fostering support for hemophilia patients and their families. By collaborating with healthcare partners, patients, caregivers, and government bodies, Roche is championing a movement towards greater understanding and empathy for those affected by hemophilia.

In conclusion, as the world observes World Hemophilia Day, it is imperative to recognise the challenges faced by individuals living with the condition and work collectively towards a future where hemophilia is met with compassion, understanding, and comprehensive support.

This initiative is supported by Roche Malaysia. Information and material contained in this press release are purely for educational purposes only. It is intended for non-promotional purposes and aimed at increasing awareness of hemophilia. Please consult healthcare professionals for further advice, diagnosis, or treatment.