opinion: closing the care gap for women with chronic illness
4 minute read
a long-term solution requires meaningful collaboration across the biopharmaceutical sector, healthcare systems, and patient communities to ensure women are represented in studies that guide treatment decisions throughout reproductive and life stages.
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chronic diseases affect over 14 million canadians and are the leading cause of disability and death in canada. women are disproportionately affected, with 48.9 per cent developing one or more chronic conditions in their lifetime. despite this, the healthcare system continues to rely on evidence that was not designed with women in mind. research and funding remain male-centric, failing to account for the biological, socioeconomic, and lifestyle differences between sexes.
felt worldwide, this health equity gap becomes especially apparent during pregnancy. approximately one in four pregnancies in canada are affected by a chronic condition, yet most medications do not have sufficient information on use safety and efficacy during pregnancy or breastfeeding.
an absence of data drives precaution in clinical decision-making. in fact, fewer than five per cent of medications have been adequately studied for safety in pregnancy and breastfeeding, leaving women and clinicians to make critical treatment decisions with limited guidance.
maternal chronic disease is already associated with adverse medical outcomes such as preterm birth and impacted postpartum feeding practices; ambiguous clinical guidance on medication only exacerbates the preventable harm and deepening health inequities experienced by women.
after more than two decades working in global biopharma, i have seen firsthand how healthcare systems evolve when equity is treated as a strategic imperative rather than an afterthought.
why collaboration and representation are essential
women are increasingly becoming mothers later in life, at a stage when chronic conditions are more prevalent and often more severe. more than ever, we need to act with urgency. closing this care gap requires time-coordinated efforts between researchers, clinicians, regulators, and industry. women with chronic conditions during reproductive years deserve care informed by evidence, real-world data, and their lived experience.
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a long-term solution requires meaningful collaboration across the biopharmaceutical sector, healthcare systems, and patient communities to ensure women are represented in studies that guide treatment decisions throughout reproductive and life stages.
industry leaders, like ucb, are leading the charge, having paved the way for a necessary, accelerated momentum. for more than a decade, ucb has been dedicated to health equity, actively generating clinical evidence for women with chronic inflammatory diseases across reproductive stages.
through ucb’s global investment in long-term research for people with chronic conditions like systemic lupus erythematosus (sle) – an estimated 90 per cent of whom are women – we can see the patient impact of conducting research with women in mind.
but these efforts remain the exception rather than the norm. according to the international clinical trials registry platform (ictrp), only four per cent of clinical trials in the past 10 years have allowed the inclusion of pregnant women. to truly close the care gap, research equity must be embedded as a shared clinical standard across the industry and not reduced to niche initiatives or reputational add-ons.
one means of driving continued momentum is to simultaneously advance women’s leadership through mentorship, sponsorship, and visibility in the industry. women’s leadership within the pharmaceutical and life sciences sectors is not just a matter of representation; it directly influences what questions get asked, which populations are prioritized, and how outcomes are measured. when women with lived experience of healthcare challenges help guide research strategy and investment decisions, the resulting evidence is more likely to reflect the diverse realities patients face.
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empowering clinicians and patients: the role of data and equitable access to care
since the covid-19 pandemic, digital and virtual models of care have become standard components of patient care – a change that has fundamentally altered women’s experiences with the canadian healthcare system for the better. a recent international scoping review of virtual prenatal care found patients valued convenience, accessibility and communication quality.
for women managing chronic illness, this new care paradigm offers more than efficiency. digital health is an opportunity for continuity, coordination, and shared decision-making across specialties that often operate in silos. partnerships between healthcare providers and industry can accelerate the adoption of electronic health records, telehealth platforms, decision-making tools and digital care solutions. these solutions are leading us to a democratization of data, reaching clinicians and patients when they need it most.
investing in research and digital health tools alone is not enough. advocacy and disease awareness initiatives are also essential to shortening diagnostic delays–critically important for chronic illnesses disproportionately affecting women and frequently misdiagnosed or dismissed. combined with clinician education and support, these efforts can help ensure equitable access to care and resources as new research emerges.
patient advocacy groups are key to successfully equipping doctors with the right resources to empower female patients with chronic diseases. the canadian arthritis patient alliance (capa) is one such group offering tailored, evidence-based resources, including reference tools and educational webinars, designed to support women navigating pregnancy, parenting and medication decisions with confidence. the implementation of pan-canadian frameworks, such as the canadian inflammatory arthritis care path, highlights how clinicians play a key role in connecting patients with credible, practical information designed for women, ensuring that research effectively translates into improvements in real-world care.
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a shared responsibility
we already have the tools we need to close the care gap for women living with chronic illness. what we need now is a sustained commitment and prioritization of inclusive research, industry collaboration, and the translation of research into clinical practice.
by committing to research equity, elevating women’s leadership within healthcare and industry, and equipping clinicians and patients with the knowledge and tools they need, we can ensure canadian women and their babies are prioritized, empowered, and supported to live their healthiest lives.
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