Living well: Tackling iron deficiency in women and girls with a genetic bleeding disorder

Eighty percent of women and girls [1] with a genetic bleeding disorder experience heavy menstrual bleeding, commonly resulting in iron deficiency anaemia which can significantly disrupt their education, employment and social relationships. Women and girls’ quality of life is being compromised due an inconsistent approach to monitoring and addressing this easily treatable condition.

The Haemophilia Society (THS) wants to support women and girls in getting the best treatment and care available by advocating for universal testing and monitoring of iron levels at treatment centres.

Iron deficiency anaemia (IDA) causes fatigue and headaches and, if left untreated, can increase the risk of illness and infection as lack of iron affects the immune system[2]. Treatment is in the form of inexpensive oral or intravenous iron supplements.

Some 18,000 women with a diagnosed bleeding disorder are at risk of being iron deficient. While some are monitored and treated effectively, others are not receiving optimal care, potentially resulting in poor health and missed days at work or school. The most recent research suggests highly variable clinical practice, with between one quarter and 100% of women and girls with a bleeding disorder and heavy menstrual bleeding (HMB) having their iron levels checked[3], depending on their treatment centre.

Ongoing stigma surrounding menstrual bleeding and misconceptions about what constitutes ‘normal’ bleeding also hamper clinical discussion[4,5].

So, how can the Haemophilia Society’s (THS) communications strategy help to get bleeding disorder treatment centres to improve their monitoring and treatment of iron deficiency in women and girls?

About the Haemophilia Society

THS is a charity for everyone in the UK with a genetic bleeding disorder. It advocates for safe and effective treatment and brings together people with a bleeding disorder and their families to share experiences and create support networks.

The charity has 5,500 members, 56% of whom are female. Of that number, 847 women and girls have a diagnosed bleeding disorder and the rest identify themselves as carers or family members of someone with a bleeding disorder[6].

There are 23,332 women and girls with diagnosed bleeding disorders in the UK, more than half (54%) of all registered patients on the UK National Haemophilia Database[7].

About 80% of women and girls with a diagnosed genetic bleeding disorder experience HMB. Extremely heavy periods can result in missed working days and disrupted education as well as feeling fatigued and unwell, which is often linked to iron depletion. It is estimated that the impact of absenteeism annually in the UK from heavy periods is £4.7 billion[8].

Developing the strategy

A recent UK haemophilia doctors’ survey of haemophilia treatment centres of the current gynaecological management of women and girls with bleeding disorders in the UK found an ‘urgent need for routine clinical practices around detection and monitoring of iron deficiency to change’[9]. The authors conclude that ‘clinical practices for checking iron status were highly variable’ and recommended ‘universal, routine testing of iron status’ as an area for immediate prioritisation.

Barriers to optimal care for women and girls

A report by THS in 2025 concluded: ‘Bleeding disorder care has struggled to break out of a financial and clinical mindset that often sees women and girls as secondary patients to men and boys with haemophilia’[12]. On average, women are diagnosed with a bleeding disorder 16 years later than men and it’s estimated that that up to 50,000 could live with an undiagnosed bleeding disorder, in part because common symptoms such as HMB are not investigated[13].

Bleeding disorder care has historically focused on the most severely affected patients which, in some but not all genetic bleeding disorders, is men. For example, men are overwhelmingly more likely to have the most severe forms of haemophilia, which is passed on genetically through females. There are 2,386 men registered in the UK with severe haemophilia A and only 18 women[14]. However, of the 9,999 total number of haemophilia diagnoses, women account for 3,044, of whom 40% are likely to experience HMB[15].

A THS report, based on conversations with more than 100 women and girls, highlights that women’s needs are different and that they need to be treated differently[16]. The UKHCDO recommends that the ‘physical and psychological impact of HMB on women’s lives is evaluated at every assessment, and this should include evaluation of iron status and/or anaemia, assessment of HMB and other menstrual cycle symptoms, and the impact of HMB on a woman’s quality of life’[17]. Yet its survey of specialist treatment centres found that at least two routinely referred women back to their GP to deal with symptoms of HMB.[18]

A survey of the views of 280 women with bleeding disorders found that participants who had seen a specialist rated their understanding of their condition as worse than those who had not.[19]

The genetic nature of bleeding disorders is both a support and a barrier. Family members – male and female – are more likely to understand the impact of bleeding and have a more general awareness about related conditions, such as iron deficiency. The negative impact is that there is often a ‘normalisation’ of bleeding symptoms, particularly in relation to periods which leads to late clinical recognition[20]. An additional impact is stigma associated with genetic bleeding disorders in some ethnic minority communities which can impair open discussion about symptoms.

As a charity reliant on donations, grants and legacies for survival, THS’s relationship with its stakeholders strives to build trust, demonstrate relevance and uphold its integrity with every interaction. THS knows the importance of maintaining and enhancing its reputation in their eyes but, as Griffin notes, is mindful that this comes from ‘a promise delivered, not made’.[21]

The power/interest matrix is a good starting point, although more nuanced segmentation is needed.

While socio-economic and geodemographic factors are useful in understanding stakeholders’ access to healthcare, mapping stakeholders for this project is usefully informed by Grunig and Hunt’s ‘situational theory’ of publics[22]. Highlighting the need for detection and treatment of iron deficiency will result in ‘problem recognition’ (women who recognise the symptoms, or a carer or family member of someone who has those symptoms) and their level of involvement will be enhanced by their connection to this issue. As people who already live with a rare condition, they are information seekers – well versed in finding out about their disorder in the face of limited recognition – and are likely to be ‘active publics’.

THS research has shown that a barrier to optimal treatment is the stigma and shame attached to discussion of menstruation. Understanding the way people ‘think, feel and behave’[23] is crucial in segmenting stakeholders. THS’s working groups offer useful insights of lived experience to inform the campaign and will support an ongoing evaluation of progress.

Yaxley[24] recommends using psychographics to segment stakeholders where a change in knowledge, attitude or awareness may be sought. In this case, we could potentially segment women and girls with bleeding disorders and HMB according to their lifestyles, with those active and sociable potentially most likely to feel held back by their condition and motivated to improve their treatment.

Campaign recommendation

A campaign to improve monitoring and treatment of iron deficiency for women and girls with a bleeding disorder provides an opportunity for THS to position itself as a leader in improving care for members. It offers a useful bridge to collaborate with haemophilia treatment centres and begin conversations about achieving other longer-term recommendations from its 2025 report into the treatment and care of women and girls.

In accordance with the Barcelona Principles[25], it is important for THS to use measurement and evaluation to engage in active and ongoing listening to stakeholders, as well as assessing outcomes and impact.

Key messages would focus on tailoring information to target audiences to increase understanding and facilitate action using the issues and motivations identified (improving health and quality of life/empowering patients/supporting existing clinical guidance/overcoming stigma/recognising symptoms and risks of IDA).

Campaign objectives

The following awareness and action objectives are proposed[26]:

• Awareness objective: To increase women and girls with a bleeding disorders’ knowledge of the symptoms and impact of iron deficiency anaemia by 25% in the next 12 months.
• Awareness objective: To increase understanding among women and girls with a bleeding disorder that heavy menstrual bleeding puts them at high risk of iron deficiency anaemia by 25% in the next 12 months.
• Awareness objective: To increase awareness of women and girls with a bleeding disorder that they should be monitored and treated for iron deficiency by 25% in the next 12 months.
• Action objective: To increase membership of THS among women and girls by 5% in the next 12 months.
• Action objective: To achieve an average iron testing baseline on women with a genetic bleeding disorder and HMB of 75% across all UK haemophilia centres within 24 months.Proposed further task objectives:
  • To work with UKHCDO to establish agreed current baseline iron testing data to evaluate objectives.
  • To collaborate with the Haemophilia Nurses Association (HNA) to understand what role its members could play in supporting the objectives.
  • To collaborate with THS’s working groups on von Willebrand disorder and rare bleeding disorders to evaluate objectives.
  • To work with NICE on expanding its HMB treatment guidance to include women and girls with a genetic bleeding disorder.

PESTLE Analysis

SWOT analysis

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