Rethinking difference to improve healthcare for an overlooked condition in women

Women have been overlooked across many disease areas, but for haemophilia, a rare bleeding disorder, the gap is wider because of a long-held belief that only men could have the disease while women could only be carriers.

Now we know that haemophilia affects approximately 359,000 women worldwide (diagnosed and undiagnosed), yet there remains a lack of knowledge and understanding of how women are impacted.

The misconception that women could only be carriers of haemophilia has led to missed diagnoses, and therefore underrepresentation and biases in clinical trials and treatment development. It’s essential that we change this mindset and bring about meaningful changes to address the gap in care.
Teresa Graham
Head of Global Product Strategy at Roche

Healthcare is not one-size fits all, yet scientific research has often failed to consider how a disease impacts men and women differently. While women with haemophilia have similar symptoms as men, they face additional challenges including heavy menstrual periods and anemia, as well as considerations around their physical, social and emotional quality of life, family planning and pregnancy. These personal, biological, and societal factors are critical to recognize and account for in order to provide the best care for each person. To bridge the gap and ensure women receive the same quality access to diagnosis and treatment as men, we need to embrace these differences and strive to better understand them.

In the past women have typically been excluded from clinical trials because of concerns over fluctuating hormones, menstrual cycle complexities and the risk of potentially damaging unborn foetuses.1 But rethinking how these differences affect diagnosis and treatment, and learning from them can improve care.

Roche is working with the haemophilia community to raise awareness and foster a greater understanding of the condition in women, which can help lead to better diagnosis and treatment. In addition, we are actively enrolling women in clinical trials for new and existing haemophilia treatments. Furthermore, the trials include health indicators that are unique to women with bleeding disorders, with the aim to optimise care.2

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References

  1. Bruinvels G, Burden RJ, McGregor AJ, et al. Sport, exercise and the menstrual cycle: where is the research? British Journal of Sports Medicine 2017;51:487-488.

  2. Skinner MW. WFH: Closing the global gap – achieving optimal care. Haemophilia. 2012;18: 1-12. https://doi.org/10.1111/j.1365-2516.2012.02822.x

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