In a recent article in Politico, a doctor and patient shared their thoughts on the evolving state of hemophilia care and what that means for patients.
Read the article, sponsored by CSL Behring: Beyond bleeds: the power of partnership in hemophilia
The doctor – Professor Wolfgang Miesbach, of Frankfurt University Hospital, Germany – is a member of the Executive Committee at the European Association for Haemophilia and Allied Disorders (EAHAD). Even as treatments improved in recent years, patients who have hemophilia do not enjoy the same quality of life as others, he said in the article.
“Studies clearly indicate that seclusion, isolation and depression are more common in people with hemophilia than in those without,” Miesbach said. “Naturally, the disease is associated with a strong sense of insecurity and sometimes even a feeling of withdrawal.”
The patient, Martin Neilsen of Denmark, said growing up with hemophilia B was a struggle, especially for someone who enjoys sports. Taking up skateboarding when he was young, for instance, came with the burden of worry.
“It was always two steps forward, one step back, because there was always that little thing that you didn't recognize (such as a bruise) that would turn into a bleeding. Then I would have to rest,” Neilsen said.
The article notes the importance of meeting the clinical, psychological and personal needs of people with hemophilia through shared decision-making between patients and their health care professionals.
Gene therapy is now available for the treatment of hemophilia B in multiple countries, making appropriate adults eligible for this innovative treatment. CSL is proud to share stories of individuals who have received gene therapy, showcasing the real-world impact of this medical advancement.
