Why equal representation matters in the bleeding disorders space
Ensuring everyone is represented is vital, and we're making progress
I walked into the bleeding disorders conference filled with anticipation. After living abroad for over a decade, I had returned to the U.S. and was excited to connect with experts and patients to learn more about managing hemophilia as a woman.
As I entered the event, I was mesmerized by the giant posters adorning the walls, elevator doors, and even the escalator! There were photos of men infusing clotting factor to help with their hemophilia, pictures of mothers supporting their sons during infusions, and happy families featuring a mom, dad, and son with a bleeding disorder. One beautiful poster showcased a young man and his caring partner walking in nature.
I attended an industry-sponsored meal, which served as an opportunity to learn about specific treatments and gain insights through educational content developed by the sponsoring company. The food was delicious, and the people were fantastic. The presentation featured a mother and son discussing the son’s journey with a new product, sharing the impact it had on their lives.
The year was 2019, and I was gaining incredibly valuable information to apply to my own journey with hemophilia. The connections I was forming were invaluable and crucial for my understanding of how to manage my condition. However, there was something glaringly missing: During the entire first afternoon and evening of the conference, there was not a single depiction or reference to a woman with hemophilia.
What representation should and shouldn’t look like
Representation matters. As a patient, it’s crucial for me to see my experiences reflected in advertisements, photos, and presentations. Relating to the information is essential for drawing people in. When the information feels relevant and targeted to me, I absorb it better. It reassures me that I am not alone.
Two years after the conference, I received an email from the company that produced the factor VIII product I was using at the time to prevent and treat bleeds associated with my hemophilia. The email was an invitation to receive an information packet with guidance and encouragement on maintaining a prophylactic routine. Prophylaxis is a regulated infusion schedule that folks with hemophilia follow to keep their factor levels elevated, thus helping to prevent bleeding episodes.
A few weeks later, I received a beautifully designed box in the mail. It felt like I was opening an expensive product as I unpacked the carefully curated informational brochures. To my surprise, the first brochure I pulled out said, “Men, Take Control of Your Hemophilia!” Surely they must have known I was a woman using their product when they sent this to me, right? Unfortunately, they may not have realized that. Although an increasing number of women are on prophylactic treatment regimens, it is still less common than for men, primarily because women often experience milder forms of hemophilia compared with men.
Coincidentally, there was another national conference shortly after I received that package. I brought it with me and spoke to representatives from the company that made the FVIII product I was using. We all had a good laugh about it, and I appreciated their immediate openness to understanding the issue. They took the brochure back, and the experience reinforced a valuable lesson for everyone involved.
Once again, representation in hemophilia is crucial, and it should manifest in several ways. If a medication is approved for use by both men and women, it should be marketed as suitable for everyone. Additionally, companies should consider how they market to men or women specifically. If there is a campaign targeting men, there should also be an accompanying campaign for women.
When presenting at bleeding disorder conferences, it’s vital to recognize that the audience is often diverse. When choosing photographs and planning content, it’s important to include all people with bleeding disorders — men and women, older and younger, and those representing various backgrounds. If a photo of a man infusing a factor product is included, there should also be a photo of a woman doing the same.
I’m happy to report that conferences are gradually changing. I now consistently see a few women represented as patients with hemophilia. While we are still not equally portrayed, this is a significant step forward. The change has been affirming for the women in our community.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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