Sanofi’s Hemophilia Treatment goes Beyond the Bleed

Published on: November 13, 2024
Mark, who lives with severe hemophilia A, with his two young daughters.
Mark lives with severe hemophilia A. He enjoys spending time with his family, volunteering, and cooking.

Hemophilia can affect nearly every aspect of a person’s life, but these daily impacts are often overlooked, and current solutions rarely go beyond medical care. Sanofi is committed to working with the hemophilia community to shed light on the unmet needs of people living with hemophilia and to advance the hemophilia care paradigm to go beyond treating bleeds.  

Hemophilia is a rare, inherited, lifelong condition in which a person’s blood does not clot properly due to a lack of proteins called clotting factors. As a result, people with hemophilia risk serious, excessive bleeding from everyday cuts and bruises as well as spontaneous bleeds into joints, muscles, and soft tissue.

As leaders in hemophilia, we recognize there is more to life with hemophilia than preventing or treating bleeding. Working as a committed partner with the hemophilia community we’re looking Beyond the Bleed to elevate a new understanding of what it means to live with hemophilia and to meaningfully advance the care paradigm.
Ayesha Huq

Ayesha Huq

Global Head for Hemophilia, Sanofi

Meeting the challenges of life with hemophilia

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. They deserve 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.

Infographic shows hemophilia impacts beyond bleeds, including travel, family planning, relationships, mental health, and communication.

Seeing the person living with hemophilia… and not just the condition

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

Hemophilia & Women: Watch Shellye's Story

Hemophilia & Mental Health: Watch Emil's Story

A Hopeful Future

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 caregivers can live confidently in the present and be hopeful for the future.

Top left: Sanofi convened two advisory board meetings in 2024 to discuss ideas to advance care for people with hemophilia. Top right: Sanofi’s PATHs patient advisory board members after a workshop event. Bottom: Sanofi’s Changemakers series gathered experts together for a panel at the World Federation of Hemophilia 2024 Congress.

Explore more

Ten Years of Making an Impact in the Hemophilia B Community

Trails are Calling: Embracing Adventure with the Hemophilia Community

From Aspirations to Reality: My Journey as a Woman Scientist to Redefine Hemophilia Care

References

1 Pierce GF, et al. (2022) Achieving access to haemophilia care in low-income and lower-middle-income countries: expanded Humanitarian Aid Program of the World Federation of Hemophilia after 5 years. The Lancet Haematology 9(9):e689-e697; DOI: 10.1016/s2352-3026(22)00209-5

MAT-US-2409477 V1.0 10/2024