It’s Time to Look Beyond the Bleed

Bleeding episodes are just one part of living with hemophilia. Too often, people living with hemophilia and their loved ones experience anxiety and fear about bleeding episodes. What they want most is to live their lives free from the burdens and limitations of this disorder. They strive to be seen, heard, and ultimately, understood beyond the box that having hemophilia often puts them in. 

Conducting daily activities without discomfort or worry of a bleed, and reducing impact on personal relationships are among the top goals for managing their hemophilia. Sanofi’s recent Global Hemophilia Life Stages and Changes Survey – a first-of-its-kind study conducted across four continents and 11 countries – gives critical insights into the physical, social, and emotional burden of hemophilia at various stages of life.

We are spurring new conversations to ultimately drive action to improve care thanks to the invaluable insights of the survey.

Sanofi is turning conversations into action. We’ve joined forces with medical leaders, patients, caregivers, and health care advocates to gather insights, share inspiring stories, and drive forward a new care paradigm that goes beyond the treatment of bleeds by:

• Bringing survey data to life. Our Hemophilia Through My Eyes video series gives a first-person look into what it's like to live with hemophilia. Portrayed through the eyes of six people with hemophilia, this series highlights the effects on mental health, relationships, careers, travel, and the experience of living with hemophilia as a woman. Watch the full 6-part video series on our YouTube channel.
   
• Listening to the community. Our Beyond the Bleed Advisory Board is a group of diverse and passionate experts representing the spectrum of care, from hematologists and nurses to social workers, physical therapists, and psychologists. They are helping us generate new ideas for improving the life experience of people with hemophilia. Our PATHS Advisory Board – representing people with hemophilia from around the world – serves as the sounding board for ideas so they can be tailored to meet real patient needs based on lived experiences.

• Generating advocacy and change. Our Changemakers Series brings global changemakers and advocates together to educate, ideate, and create practices and policies that aim to address the current unmet needs across the spectrum of hemophilia care. Since its inception in 2020, we have hosted numerous virtual and in-person events to address important issues, such as optimal care for women and girls with hemophilia, improving standards of care for mental health and pain management, and inspiring the next generation of advocates.
   
• Providing much-needed humanitarian aid. More than 75% of the global hemophilia community have limited or no access to diagnosis or treatment. Sanofi, together with Sobi, is continuing to deliver on our 2014 pledge to donate up to 1 billion IUs of factor therapy over ten years to the World Federation of Hemophilia (WFH) Humanitarian Aid Program. This unprecedented commitment led the way for other donors and partners to join the initiative as well. One study of the program’s impact showed that thanks to the commitment of Sanofi, Sobi, and all donors, from 2015 to 2020 the number of countries receiving donations grew from 63 to 69 and people treated with donations increased from 3,767 to 20,048.¹ Treatment is no longer restricted to life- and limb-threatening emergencies, and hemophilia care teams are now able to perform corrective and elective surgeries – an increase from 5 countries in 2015 to 25 countries in 2020.¹

Our vision is to bring increased awareness to the world about the challenges people with hemophilia face every day along with the possibilities that treatment and care can offer.

When we, as a society, are able to address the multi-dimensional impacts of hemophilia, then people with hemophilia, their families, and carers can live confidently in the present and be hopeful for the future.