Inspiring Inclusion in the Bleeding Disorders Community

This year’s International Women’s Day (IWD) theme, Inspire Inclusion, calls for us all to consider how we can create a more inclusive environment through our actions. IWD also coincides with four months in my new role and a reinvigorated frustration with the gaps in women’s health.

Since returning to the hematology community, I’ve been reintroduced to the disparities in care that exist for women with bleeding disorders. And I hear the frustration in the voice of our treaters, our patients and my colleagues about the misperceptions that drive the inequity – that women can only be carriers of hemophilia, not symptom sufferers themselves, or that weeks-long menstruation that nightly drowns the sheets is not justification enough for preventive treatment. I am perplexed when I hear this sentiment despite the tremendous awareness, innovation and advancements in the community. ?

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So, when I think about the ways in which I want to inspire inclusion in the year ahead, health equity for women with bleeding disorders naturally comes to mind as an opportunity to drive meaningful change. But what can we do to impact this change?

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It’s time to redefine what we consider women’s health.

Part of the problem lies in how we too narrowly define women’s health as only sexual or reproductive health, when in fact, it is inclusive of all aspects of a woman’s health and includes general health conditions that may impact women differently or disproportionately.

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Von Willebrand disease (VWD) is a textbook example of a condition that is often misdiagnosed and undertreated because of the way it impacts women. This rare bleeding disorder affects men and women with equal frequency, but the symptoms they experience are vastly different. The most commonly reported symptom by women is heavy bleeding during periods, whereas men report mostly nosebleeds.

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I hear story upon story about women whose symptoms have been diminished or denied. Women who were not diagnosed until pregnancy in their 30s or stories of generations suffering because “my mum was told she just had heavy periods”. Beyond this, women can experience life threatening complications during pregnancy, labor and delivery.

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Gender disparities exist at all levels of care – from diagnosis to effective treatment and follow-up.

It takes an average of 16 years from symptom onset for women with VWD to receive an accurate diagnosis. This long diagnostic journey is complicated by multiple factors, including a lack of familiarity amongst healthcare providers on how the disease manifests differently in women and gender-specific symptoms being incorrectly considered as only gynecological issues.

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Let’s consider how this impacts their care journey and life more holistically. A woman with undiagnosed VWD reports having abnormally heavy periods to her doctor. She is referred to a gynecologist, who prescribes a contraceptive to help manage her symptoms. This sometimes helps. But what happens when she wants to have a child or needs to undergo surgery? Is she informed about the options available to her? Is she advocating for her wellbeing and expecting more from her treatments?

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Women are not alone in their frustration. I have spoken with many men with bleeding disorders who declare, “We have so many options and are well empowered. It’s time now to give women with bleeding disorders the same opportunities.”?

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Addressing the women’s health gap can have a positive impact for everyone.

A recent white paper by the McKinsey Health Institute estimates that women spend 25% more time in poor health than men. To put that in perspective, that’s an average of nine years in poor health with the majority of this burden falling disproportionately during our prime (between 20-70 years old).

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The good news is that investments that address this women’s health gap can improve women’s quality of life allowing them to live longer, healthier lives and create positive ripples for society overall. In fact, it could potentially boost the global economy by $1 trillion annually by 2040.

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I’m proud to work with a team that is committed to promoting health equity in the rare disease patient communities we serve. In hematology, we’re leading by example by investing in research exploring the potential of machine learning to aid in diagnosis and educational resources and programs tailored for women with bleeding disorders.

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We’re also partnering with the community to work together to bridge gaps in care and improve health outcomes for marginalized and underserved patients. Read our latest policy paper in collaboration with National Organization for Rare Disorders (NORD) to learn more. ?

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My questions for you this International Women’s Day – where do you see disparities in women’s health in your life, work or community? How can you inspire inclusion with your actions? And for my colleagues at Takeda, how can we leverage our frustration to inspire inclusion in our community? Answer in the comments below!