Home » Rare diseases » Why we must ensure equity of support for people living with haemophilia

Sharon Hall

Vice President and General Manager, Sobi UK and Republic of Ireland

While great strides have been made in the management of haemophilia, more can be done to support people living with the condition to thrive without compromise.

It goes without saying that significant strides have been made, impacting the prospects of people diagnosed with haemophilia. For context, 100 years ago, the average life expectancy of someone with haemophilia was 13 years. By the 1960s, it increased to 20 years. Today, it is similar to that of the general population.

The effects of haemophilia are not always visible

“Despite this, people living with haemophilia can still face significant challenges,” says Sharon Hall, Vice President and General Manager, of Sobi UK and Republic of Ireland, a specialised international biopharmaceutical company.

Haemophilia is a lifelong bleeding disorder. Often inherited, it is caused by a deficiency of a protein called factor, which is important for blood clotting. Someone with haemophilia may take longer than normal for bleeding to stop if the condition is not being appropriately managed. However, a bigger concern is the bleeding that happens in joints or muscles, sometimes without having an injury.  

Although these bleeds can be visible through bruising, swelling, pain and stiffness, bleeds can also be silent and occur without symptoms; these are known as ‘microbleeds’ and can cause long-term damage to the joints. The impact of bleeds and joint damage can lead to chronic joint and muscle pain, which can be debilitating.

“People with haemophilia may feel they have to make compromises,” notes Hall. “They might avoid vigorous sport or even minor physical activities for fear of having bleeds. This can lead to apprehension and trade-offs which impact how they live their life on a daily basis. And, as they learn to live with their condition, this compromise can become part of their norm.”

UK research found that around 60% of adults
living with haemophilia were aware of pain
constantly or most of the time.

Support services are critical

“It is estimated that, globally, 30% of the general population has chronic pain, but for people with haemophilia, the rates are considerably higher. UK research found that around 60% of adults living with haemophilia were aware of pain constantly or most of the time, with over 50% reporting chronic pain,” explains Hall. “Plus, what’s less well-known is the impact on mental health. Having to limit activities to manage pain and deal with the worry of bleeds can take its toll.”

But, Hall believes the conversation around haemophilia is changing and can continue to evolve. She notes the drive for equity of support for those living with the condition. “Ensuring the right infrastructure is in place to help people with haemophilia live the life they want to live, no matter where they are in the country, is vital. We must continue to find ways to ensure the same wrap-around care services, such as physiotherapy and psychological support, are available to all those who need it.” 

Empowering people with haemophilia to have informed consultations

Providing people with the encouragement and tools to enable them to have conversations with their healthcare professionals about any lifestyle needs that are not being met is also critical.

“We are seeing more focus on supporting people to be aware of their options, by informing them on the latest practices and guidance. Yes, management and treatments have advanced dramatically — but people’s confidence about their condition may not have advanced at the same rate.”

“I’m optimistic that with the care and treatments available today and the dynamic landscape, we will continue to see improvements in haemophilia management.” insists Hall. “If we could enter a new era of zero bleeds, it would reduce the need to compromise and enable people with haemophilia to live the life they want — and deserve — to lead. That’s an exciting prospect for the future.”

Sobi has funded this article and had full editorial control of its content

February 2024

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