Keywords
Haematology
von Willebrand disease
Heavy menstrual bleeding (HMB) is one of the most common and life-disrupting manifestations of von Willebrand disease (VWD). For many women and girls, it affects education, employment and quality of life, often causing chronic fatigue, with symptoms that are too often dismissed as 'just a heavy period'.
Today, Octapharma is helping change that conversation. Drawing on the landmark WIL-31 and WIL-33 studies, WILPROPHY is a new global campaign designed to bring the power of prophylaxis to life through compelling patient stories and robust clinical evidence.
Built on one of the most comprehensive bodies of evidence supporting prophylaxis in VWD, the campaign showcases how prophylactic treatment can help reduce the bleeding burden, improve patients' quality of life, and support a more proactive approach to disease management across different patient populations, compared to on-demand treatment.
The campaign launches with an initial focus on women and girls affected by HMB, one of the most common and burdensome manifestations of VWD. Future campaign phases will highlight additional patient populations and bleeding challenges across the VWD spectrum.
At its heart is a simple but powerful belief: When VWD care advances, lives move forward.
"That message is particularly relevant for women and girls living with VWD, whose experiences have historically been underrepresented in both research and clinical conversations," says Lina Aires, Global Brand Manager Haematology.
As the world's most common inherited bleeding disorder, VWD affects millions of people worldwide. Symptoms can include recurrent nosebleeds, easy bruising, gastrointestinal bleeding, joint bleeds and excessive bleeding following surgery or injury. For women, however, HMB is often among the most disruptive symptoms.
While prophylaxis has transformed outcomes for people living with haemophilia, those living with VWD have historically had fewer evidence-based preventive treatment options. As understanding of the disease has evolved, clinicians have increasingly explored whether a similar approach could help reduce the burden of bleeding in VWD.
At the centre of this evolving treatment paradigm are the WIL-31 and WIL-33 studies.
WIL-31, the largest prospective prophylaxis study conducted in VWD, demonstrated that prophylactic treatment can significantly reduce the bleeding burden compared with on-demand treatment. The study enabled researchers to compare both treatment approaches within the same patients and has generated a growing body of evidence across multiple patient populations.
WIL-33 further expanded the evidence base as a prospective study evaluating prophylaxis in children under six years of age, providing valuable insights into the role of prophylaxis for some of the youngest patients living with VWD.
Together, these studies have established one of the most comprehensive bodies of evidence supporting prophylaxis in VWD and continue to shape clinical understanding of preventive treatment across the disease spectrum.
Among the most compelling findings from WIL-31 are those relating to women and girls living with HMB. An exploratory analysis examined five female patients aged 13 to 43 years who experienced HMB. Compared with on-demand treatment, prophylaxis reduced the mean annualised rate of HMB by 75% (HMB ABR reduction from 9.7 to 2.9).
Beyond reducing bleeding episodes, prophylaxis also reduced the severity of menstrual bleeding by 42% (PBAC score reduction from 227 to 131, HMB PBAC score is >= 185) compared with on-demand treatment. Importantly, these improvements were observed even though most patients received prophylaxis only twice weekly and without tailoring treatment to menstrual cycles.
The findings provide encouraging prospective evidence supporting prophylaxis for women living with VWD.
"Heavy menstrual bleeding can have a profound impact on quality of life for women living with VWD," says Sylvia Werner, Senior Director Clinical R&D, Haematology. "The WIL-31 analysis provides important evidence that prophylaxis may help reduce that burden and supports ongoing efforts to personalise treatment for people living with VWD."
Developed around the findings of WIL-31 and WIL-33, WILPROPHY represents Octapharma's commitment to advancing awareness of prophylaxis in VWD and highlighting the evolving possibilities of preventive care.
The campaign is built around three pillars:
Evidence – bringing WIL-31 and WIL-33 data to life through meaningful scientific and clinical conversations.
Equity – highlighting the unmet needs of people living with VWD, particularly women and girls affected by HMB.
Empowerment – supporting healthcare professionals and patients with the knowledge and confidence to consider prophylaxis as part of long-term disease management.
As WILPROPHY begins with a focus on women and girls affected by HMB, the campaign aims to foster greater awareness of prophylaxis and encourage conversations about preventive care across the VWD community. Future phases will continue to explore the experiences of other patient populations and the evolving role of prophylaxis in improving outcomes for people living with VWD.
Because when VWD care advances, lives move forward.
Haematology
von Willebrand disease