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Addressing Gender Disparities in Hemophilia Research

female doctor and patient

A few months ago, we discussed Advancing Health Equity Built on Trust, recognizing that while there is work to be done, diversity, equity and inclusion (DE&I) are non-negotiables for us. Our presence at this year’s National Hemophilia Foundation’s Bleeding Disorder Conference (NHF BDC), August 26th to 28th, marks an important step in our long-term approach to taking deliberate and purposeful action to advance DE&I in the work we do. We presented results from an analysis of more than 1,500 patients to better understand the unique characteristics of women affected by hemophilia A.  

Hemophilia is an inherited, chronic disease, primarily affecting men, which causes longer-than-normal bleeding due to absent or deficient clotting factor in the blood.1,2 Women, however, can live with hemophilia too, despite the common misbelief that women are only carriers of the disease.2 Women may experience added complications and/or symptoms of hemophilia that may make it harder to diagnose in this population, such as complications during menstruation, pregnancy, labor and delivery.As a result, women are often not tested for hemophilia, do not receive an accurate diagnosis and are not provided with comprehensive care plans for hemophilia.2 Hemophilia that goes diagnosed and is left untreated can lead to serious complications.4

Although this gender disparity is being recognized within the bleeding disorders community, comprehensive data on women with hemophilia A is still limited since most clinical trials enroll severe patients only (male), with moderate and mild hemophilia patients being excluded.4 That’s why we are proud to support the NHF’s Women’s Health Initiative, which is working toward ending this disparity in hematology by adopting standards that address symptom recognition, diagnosis and care for women with bleeding disorders, recognizing that women can have joint bleeds and experience joint pain due to bleeding.

The study we presented at NHF BDC 2021 is another step in the effort to better understand the unique symptoms and characteristics of women affected by hemophilia A – both those diagnosed with the disease and those who are carriers. Our analysis revealed a potential gap in care for females with hemophilia A (FHA) and hemophilia A carriers (HAC) who may be undermanaged and undertreated. Although further research is needed to fully understand bleeding rates, long-term complications and quality of care in FHA and HAC, this data is a first step in advancing research and treatment in this population.

We know there is still much work to do, but we are working hard to research and acknowledge underserved and underrepresented populations in the disease states we treat. We are honored to work with the broader bleeding disorder community to continue to discuss, learn and take actions that will contribute to creating a more diverse, equitable and inclusive society.


References

  1. World Federation of Hemophilia. Introduction to hemophilia: what is hemophilia?. World Federation of Hemophilia website. Available at: https://elearning.wfh.org/elearning-centres/introduction-to-hemophilia/#what_is_hemophilia. Last accessed October 2020.
  2. Centers for Disease Control and Prevention (CDC). (2020, May 8). Women and Hemophilia | CDC. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/hemophilia/features/women-and-hemophilia.html
  3. World Federation of Hemophilia. Report on the Annual Global Survey 2018. World Federation of Hemophilia website. http://www1.wfh.org/publications/files/pdf-1731.pdf. Last accessed October 2020
  4. National Hemophilia Foundation (NHF). (2021). Women and Bleeding Disorders. National Hemophilia Foundation. https://www.hemophilia.org/bleeding-disorders-a-z/overview/women-and-bleeding-disorders