The Hemophilia Society of Malaysia (HSM) is concerned about the ongoing shortage of treatment supplies for haemophilia patients across the country.
Haemophilia is a lifelong condition where patients lack sufficient blood clotting factors, leading to prolonged internal bleeding from any injury, which can result in permanent disability if not properly managed.
Patients require regular intravenous (IV) injections to prevent bleeding and allow them to participate in daily activities, education, work, and social functions.
Since early last year, several major treatment centres in Malaysia have experienced shortages in haemophilia treatment supplies.
As a result, many patients have had to make frequent hospital visits to obtain treatment in phases, causing patients and parents to frequently take time off work or leave the office as often as every week.
If this situation persists, it could lead to difficulties in accessing treatment, increasing the risk of treatment delays and, consequently, more frequent bleeding episodes.
In June 2023, HSM sent its first letter to then-Health Minister Dr Zaliha Mustafa, who acknowledged the challenges faced by the Ministry of Health (MOH) and assured that immediate action would be taken to address the treatment supply issues.
However, the situation continued, and HSM sent a second letter to current Health Minister Dzulkefly Ahmad last May 20, seeking clarification on the latest developments and offering to collaborate with the government to find solutions.
To date, HSM has not received any written response from the MOH regarding this issue.
Last August 7, HSM provided testimony to the Parliamentary Select Committee on Health, chaired by Suhaizan Kaiat. During this session, HSM reiterated its concerns about the treatment supply situation and the need for MOH to consider the suitability of non-factor treatment for the long term.
Delays in treatment can lead to further health complications for patients, such as spontaneous internal bleeding, which often accelerates joint damage, increasing the risk of permanent disability.
HSM, as a patient support organisation, has proposed three potential collaborations with MOH to improve haemophilia management: exploring the use of innovative and cost-effective treatments; implementing a comprehensive patient registry and medical record system for patients of all ages; and strengthening MOH-HSM collaboration to enhance supply, care, and initiatives aimed at preventing bleeding and permanent disability among haemophilia patients.
Currently, the only widely used treatment in MOH centres has an optimal effect for up to 12 hours, requiring patients, especially those with joint issues, to receive injections as often as three times a week.
Frequent use of this factor treatment can trigger an immune response (inhibitors) that reduces the effectiveness of the treatment. Patients with inhibitors then require specialised treatment to restore the body’s ability to accept the replacement clotting factor.
In this regard, HSM is grateful that MOH has already provided suitable non-factor treatment for patients with inhibitors. However, the availability of this treatment is still insufficient to fully cover all inhibitor patients in Malaysia.
Adequate funding is needed to ensure these patients receive the best treatment in line with global evidence and standards.
Additionally, the implementation of a consistent patient registry and record system will ensure continuity of haemophilia care, starting from pediatric treatment centers (for children up to 18 years old) until patients transition to hematology treatment centers at the age of 19.
As we approach the presentation of Budget 2025, HSM hopes the government will consider necessary provisions and policy approaches to benefit all stakeholders.
Edwin Goh is president of the Hemophilia Society of Malaysia (HSM).
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