HHT-Gender-Gap-imageLet’s open the debate on Women’s equality in Healthcare


This year’s theme for International Women’s Day is #embraceequity.

HHT Ireland, together with HHT Europe has dedicated time to understanding the implication of the gender gap in healthcare.

What do you think? Have you experienced this?

This article touches on the main issues we have learned concerning the topic and we hope to open a debate with all HHT patients across Europe and beyond. Feel free to share your personal experiences so we can start a focus group on HHT-related gaps in healthcare based on gender.

Understanding “gender inequality in health”

“Gender inequality in health” implies that there is an increased difficulty in accessing healthcare, treatment and care for a person of a specific gender. Women statistically experience poorer medical experience, diagnosis, treatment, care, and drug prescription than men. This inequity causes worse outcomes for women’s health. Inequalities are harmful to both physical and mental health outcomes.

What data reveals:

There is endless data on gender inequality in health. We would like to focus on some points that we consider highly relevant to what a woman with HHT could experience. On average, women live longer than men but with a lesser quality of life.


–  20% of women feel their doctor has ignored or dismissed their symptoms; 17% feel they have been treated differently because of their gender.

– Women receive a later diagnosis of over 700 different diseases than men, which delays their access to preventive care and/or treatment.

–  Women are more likely to suffer from multiple chronic conditions throughout their lives. These conditions are less studied and less well known, therefore there are fewer treatments.

– Chronic pain is more recurrent in women than in men, but women statistically receive less treatment for pain and often their pain is dismissed as a psychological issue.

How research and drug development affect the gender health gap

It was not until 1993 that women were included in research studies – before then, women were excluded from research other than in reproductive science yet women’s health is more than the capacity to have children. The consequence of this exclusion are that:

  • Countless drugs developed in the 20th century were only tested on men.
  • The scientific community is far behind when it comes to understanding women’s health issues
  • Our biological differences can impact our pathways differently and this needs to be acknowledged in all research in which women participate.

How employment and pay inequality affect the gender health gap

The good news is that women live longer, but unfortunately they spend fewer years in good health. Many of the underlying causes are biological but others are related to gender role conflicts, total workload, and inequality in pay that affect women’s wellbeing and long-term health.

Women specifically:

  • Suffer higher unemployment rates than men
  • Find themselves burdened with additional caring and domestic responsibilities.
  • pay gap and pension gap weaken women’s ability to seek out care.

What is your experience?

We are aware that many men experience the same difficulties in access to health care, especially in rare diseases. While those struggles will always be addressed by our patient organization, we would like to collect the experiences of women with HHT to open a focus group allowing us to personalize actions to improve access to care and treatment based on gender while giving each other mutual support and understanding.

Feel free to share your story with us via email. Your story will not be shared with third parties but you might be contacted to be invited to the focus group sessions over the next few months.

#embraceequity #equalityinHHT

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