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Guest article by the European Organisation for Rare Diseases

Gender inequalities have increasingly become visible, reported, and acknowledged in Europe over the past decades. However, according to the World Health Organization, gender inequalities alongside socioeconomic, geographic, and cultural factors create structural barriers to accessing care. From diagnosis to access to treatment or care responsibilities, women are faced with several challenges that constitute an important yet underestimated threat to their health and quality of life. Similar observations can be made in rare diseases, defined as any disease affecting fewer than 5 people in 10,000 in the European Union. Here, gender inequalities are coupled with the rarity, complexity, degenerative and often life-threatening characteristics inherent to the definition of these conditions.

A threat to health and wellbeing

Gender bias in care for rare diseases starts early. Within the complex and long process to receive an accurate diagnosis – the “Diagnostic Odyssey” – women tend to be diagnosed later than men. A report from Alliance Maladies Rare indicates that French women are directed to a hospital and specialists later than men following the onset of symptoms, which delays diagnosis. That same report further shows that on average symptoms management starts before diagnostic confirmation for men, and after confirmation for women. EURORDIS has recently conducted a European-wide survey – yet to be published – to further measure gender discrepancies throughout the diagnosis journey. As a result of delayed diagnosis, the uptake of appropriate treatment and care is also deferred. This often leads to a rapid progression of the disease, severely impacting the quality of life, socioeconomic status, and mental health. Access to treatment is also influenced by factors other than gender such as availability of treatment, organisation of care, or high prices and poor reimbursement, as shown in surveys published by EURORDIS in 2017 and 2021 and by the National Organization for Rare Disorders in 2020.  

While gender inequalities can be measured and reported, the reasons why this gender gap exists are more abstract and speculative. The European Institute for Gender Equality mentions that men are more likely to perceive their health as good than women. One hypothesis is that this difference in self-reported health may have an influence on how symptoms are perceived, delaying diagnosis and treatment as a consequence.

Another hypothesis, strongly supported by women’s testimonies, demonstrates that women may be taken less seriously when consulting physicians and that some of their symptoms are, consciously or unconsciously, attributed to hormones or their own perception of the gravity of disease expression.

Informal care perpetuating gender stereotypes

The recent European Care Strategy acknowledges that informal care suffers from a strong gender bias. This exposes women to higher risks of socioeconomic and wellbeing challenges and perpetuates the gender stereotypes that typically assign women to care-related tasks. According to the Juggling care Survey for carers of people with a rare disease, 30% of carers spend more than 6 hours per day in care-related tasks. The majority of these carers were women, mostly mothers (64%) or spouses (25%) of people living with a rare disease. With intensive and time-consuming care needs for people living with a rare disease, female carers face a higher risk of unemployment, vulnerability in the labour market and social exclusion, while also impacting wellbeing and limiting time for other responsibilities. Furthermore, the care they provide is often unpaid, contributing to the gender pay gap.

Achieving gender equality

Strategies have been put in place in the EU to reduce gender inequalities, such as the Gender Equality Strategy 2020-2025 or the Care Strategy. Despite this, gender inequalities persist and must be further addressed to truly promote and guarantee equality between men and women, as per Article 8 of the TFEU. Moreover, gender inequalities do not solely result in imbalances in the labour market but also represent a serious threat to wellbeing and health, especially for vulnerable populations such as people living with a rare disease. It is time to propose solutions to ensure care, opportunities, and rights in the labour market are available without discrimination of any kind, including gender and expression of gender.  Further research is needed to identify and address the roots of discrimination, in economics and especially health. It is only through a comprehensive approach, encompassing all aspects of gender inequalities, that the EU can achieve the promotion of equality between men and women and become a true global leader in gender equality.