WORLD Haemophilia Day was observed on April 17, the second time that this day was marked during the ongoing Covid-19 pandemic.
This year’s theme, “Adapting to change: sustaining care in a new world”, is especially pertinent considering the upheavals and disruptions that we have seen caused by lockdowns, travel restrictions, anxieties surrounding healthcare facilities, and the threat of serious illness due to the coronavirus itself.
Accessing and sustaining treatment and care for people living with haemophilia can be particularly challenging during this difficult time.
Fortunately, we know a lot more about Covid-19 today than a year ago. We know that people with bleeding disorders such as haemophilia are not at greater risk of contracting the virus. Due to that, they do not need prioritisation in the vaccination efforts proceeding in Malaysia and around the world.
People living with haemophilia are also not at greater risk of developing complications related to the vaccines, though precautions must be taken when administering them intramuscularly.
Those who live with this condition are no strangers to both challenges and having reservoirs of courage. From constant pain, joint bleeds, arthritis, and spontaneous bleeds, to needing infusions of inhibitors, such issues are part of the reality of living with haemophilia. When mental and emotional factors are also factored in, the list may seem endless to those who do not have to live with the condition.
In the past, many adults living with haemophilia struggled to maintain consistent employment due to frequent bleeding episodes and needing frequent visits to or extended stays in hospitals.
Those living with the condition or their caregivers may face medical, psychological, social and financial challenges. The threat of unemployment and facing financial catastrophe have often led to deteriorating mental health, increased stress due to uncertainty, and fearing the future.
Haemophilia is a hereditary condition. Watching a loved one cope and manage living with it can be very painful. Depression for both the individual and caregivers is a real possibility, especially when there is insufficient knowledge and understanding of the condition.
No one should have to walk that road alone or carry that burden by themselves, including family members and caregivers. A strong support network is vital.
Fortunately, in Malaysia, quality care and treatment for those with haemophilia are available. Two decades ago, the situation was very different. But lives are being changed now, and are being saved through better and improved therapies and care.
While these challenges and concerns continue to exist, people are less dependent on the need for regular blood transfusions after a bleeding episode, and therefore less vulnerable to chronic joint damage, communicable diseases, and needing frequent hospital visits.
Bleeds are being prevented and managed through treatment options which include prophylaxis using regular infusions of clotting factors.
Available primarily through Malaysia’s public health system, therapies for haemophilia range from primary prophylaxis treatment with regular intravenous injections of the missing clotting factor to specific on-demand treatment to contain bleeds.
Today, despite the disruptive influence of Covid-19, people living with haemophilia are leading active, healthy and productive lives. There is no reason for them to not have the same access to opportunities as anyone else.
Like many other communities, those with haemophilia are resilient and will overcome this challenge as they have overcome other challenges in the past.
AZRUL MOHD KHALIB , Head, Galen Centre for Health & Social Policy
Note: The Galen Centre for Health & Social Policy is an independent public policy research and advocacy organisation based in Malaysia.