Conference 2025 – Women and bleeding disorders

SUZANNE O’CALLAGHAN

Suzanne O’Callaghan is HFA Policy Research and Education Manager

The plenary on women and girls with bleeding disorders at the Australian Bleeding Disorders Conference brought together 4 women from different age groups, international expert Prof Cedric Hermans and Australian expert Assoc Prof Jenny Curnow to explore a female-centric approach to treatment and care over the lifetime.

Women and bleeding disorders

Chair ~ A/Prof Jenny Curnow
Patient perspectives – stage of life ~ 4 women of different ages
Is the female revolution in hemophilia care and treatment underway? ~ Prof Cedric Hermans
Women and bleeding disorders ~ A/Prof Jenny Curnow
Panel discussion and Q&A ~ panel joined by Monique Manzanera

STAGE OF LIFE EXPERIENCES

Opening the plenary, the stories from the 4 women were powerful accounts of the challenges they had experienced – from being a young woman trying to manage bleeding at school and work with bruises, nosebleeds and very heavy periods, through pregnancy and childbirth and to dealing with medical procedures and heavy menstrual bleeding during peri-menopause. One woman also spoke about the variety of issues for her 3 young daughters, one who has normal factor levels, while the others have low factor levels and have required treatment.

The importance of self-advocacy on the journey to diagnosis and effective treatment was a common theme: at times their symptoms had been dismissed by health professionals and their status described as ‘just a carrier’; strategies to facilitate liaison between their Haemophilia Treatment Centre (HTC) and other health care providers were key.

REVOLUTIONISING HAEMOPHILIA MANAGEMENT

There is an international effort to rethink clinical management of women and girls with bleeding disorders and Prof Cedric Hermans took the audience through his thought-provoking proposal for a female-centric approach in haemophilia.

Proactive and systematic diagnosis is the first step:

• Identifying haemophilia carriers in families with haemophilia
• Investigating bleeding disorders in females with unusual bleeding tendencies
• Further investigation when a female has bleeding from an unknown cause
• Adding females to bleeding disorders registries such as the Australian Bleeding Disorders Registry (ABDR).

This work has already begun in Australian HTCs, but he challenged the audience with ‘can we do better?’

Approximately one third of females who are haemophilia carriers have bleeding symptoms. While most have mild haemophilia, there is a group with normal factor levels who have a bleeding phenotype and also have bleeding symptoms. Recently this group has been classified formally as ‘symptomatic haemophilia carriers’.

European research studies have confirmed that both females and males with mild haemophilia have similar types of bleeding episodes, with females also experiencing problems such as heavy menstrual bleeding and post-partum haemorrhage (after childbirth). However, females have often been diagnosed later than males and with higher factor levels as a trigger for diagnosis. Like males with mild haemophilia, females with mild haemophilia can also experience joint damage.

Cedric Hermans proposed that women and girls with haemophilia should receive similar care to males with haemophilia, but with specific clinics for females.

He argued that females should have access to innovative treatments, which will involve enrolling females – and males with mild haemophilia – in clinical trials. However, the females’ types of treatment could be different to males: increasing the effectiveness of their body’s factor VIII (8) or factor IX (9) rather than supplementing with additional factor.

Ultimately this could mean that females as well as males could live with a ‘haemophilia-free mind’.

CARE FROM MENARCHE TO MENOPAUSE

What about other bleeding disorders in females? Assoc Prof Jenny Curnow took a deep dive into the approaches to care in women and girls with von Willebrand disease (VWD) – from menarche to menopause.

Although VWD is the most common bleeding disorder, diagnosis is challenging. Overdiagnosis, underdiagnosis, misdiagnosis (wrong type) is common. Using a standard Bleeding Assessment Tool such as the ISTH-BAT is valuable for assessing symptoms objectively. Laboratory testing and results are affected by multiple factors – including the body’s own reactions to age, hormone treatments, pregnancy and trauma, and blood type.

Heavy menstrual bleeding (HMB) is the most common symptom of a bleeding disorder in females. But what is HEAVY menstrual bleeding?

• More than 80mls blood per cycle (1/3 cup)
• Soaking through super tampons or pads every 2 hours or less
• Flooding the bed
• Clots larger than 50 cent piece
• Low ferritin (iron stores)
• Periods lasting more than 8 days
• Interferes with school, work, social activities – bleeding, pain, midcycle pain.

What work is underway to help identify women and girls with heavy menstrual bleeding who may need further investigation for a bleeding disorder? Jenny Curnow highlighted a couple of innovative projects:

• Let’s Talk Period (letstalkperiod.ca) – Canadian haematologist Dr Paula James’ online survey for women, a self-administered bleeding assessment tool (Self-BAT). It provides a bleeding score indicating if the women’s symptoms suggest a bleeding disorder.
• An Australian study to develop an app targeted at patients and GPs to select out the females who need further investigation.

How can VWD impact over a woman’s lifetime?

• Iron deficiency (anaemia)
• Increased likelihood of ovarian cysts, endometriosis, fibroids
• May be complications in early pregnancy
• Need care as a ‘high risk pregnancy’ with support from the HTC during pregnancy and before, during and after delivery
• Getting older? Women need HTC support for medical procedures and surgery
• And for treatment decisions in older women – don’t rely on von Willebrand factor (VWF) levels, which may increase with age – instead focus on the woman’s bleeding history.

And if you thought there were no new treatments for VWD, you were in for a surprise! Jenny Curnow showed a long list of innovative new therapies under development, with some clinical trials commencing in NSW, Victoria and WA. Females are encouraged to participate (speak to your HTC if you are interested).

By the end of the session we had thoroughly explored the conference theme of pushing the boundaries – with great hope for a future where a female-centric approach to treatment and care is the norm.