World Hemophilia Day – Outreach & Identification
Reaching out The first step to care
On World Hemophilia Day, one of our Medical Writers, Sam Hurrell, who has worked extensively in haemophilia and bleeding disorders, shares with us what it’s like to work within this area and why it’s important that healthcare professionals have the knowledge and tools they need to diagnose patients as early as possible.
Haemophilia and bleeding disorders are fascinating areas to work in. The therapeutic landscape is highly dynamic with new treatments, formulations and devices becoming available for patients each year. The advances in treatment have led to patients living long and healthy lives and there has been an increased emphasis on their functional ability and quality of life.
What I really enjoy about medical communications and specifically working within haemophilia and bleeding disorders is that when we bring together experts from different disciplines, their focus is always on establishing how they can work to the best of their ability to improve patient outcomes; I feel this is so important given there’s no cure for haemophilia, but with preventative treatment, people can live normal, healthy lives.
In the last decade there’s been a great improvement in the quality and number of treatments available for patients with bleeding disorders, and in the access and quality of supportive therapies, such as physiotherapy and exercise programs. However, there remains a challenge in providing patients with this improved care due to a lack of, or a prolonged delay in, diagnosis until late in adulthood. In rare bleeding disorders, the rarity of the condition is often compounded by the remote populations in which they often occur, compounding the challenge of identifying and treating these patients. While support systems for improving quality of life, preventing complications and comorbidities, and ultimately preventing bleeding episodes have become more robust and more widely available, undiagnosed patients are not able to access these support systems and often have severe comorbidities due to late diagnosis.
We’re highly encouraged by the action the World Federation of Hemophilia is taking by highlighting this issue during this year’s World Haemophilia Day, with the slogan “Reaching out: the first step to care”, to highlight the need for healthcare providers to be proactive in identifying patients with bleeding disorders and to provide more patients with the care they need.
At Bioscript, we’re proud to have supported our pharmaceutical clients in providing medical communications with the same aim. Some of our current projects include publications and educational events aimed at providing haematologists with the knowledge and tools needed to diagnose patients as early as possible and give patients access to the very best care.