SUZANNE O'CALLAGHAN
Suzanne O'Callaghan is HFA Policy Research and Education Manager
What information does our community want about new haemophilia treatments? And for those who are affected, what would you like haemophilia treatment to achieve for you, or your child or partner, now and in the future?
In December 2022 and January 2023 Haemophilia Foundation Australia (HFA) conducted a community survey to find this out.
We are developing fact sheets on new haemophilia treatments and the answers to these questions will be very valuable to help us to know what to cover. They will also assist us with our other work – for example, contributing to the ideas when putting together sessions for the upcoming Australian Conference and adding to our sources of information to understand what is important to our community when we undertake advocacy around haemophilia treatment.
37 people (17 female/20 male) completed the survey.
All age groups from 18 years and over were represented. 38% were 31-44 years old.
68% lived in a capital city; 16% in the rural/urban fringe of a capital city; 8% from a regional/rural remote area; 8% were from overseas.
Asked about fact sheets on extend half-life (EHL) and non-factor therapies (eg, emicizumab/Hemlibra ®), survey respondents thought they should answer questions about:
Some also had other questions, including information on treatments in the pipeline and the policy on treating babies with prophylaxis before their first bleed.
HFA has already published information on gene therapy for haemophilia, but we asked what questions they would like covered in a short fact sheet. Their responses included:
Some were also interested in the potential for gene therapies for other bleeding disorders.
With new and innovative haemophilia treatments becoming available, it’s important to understand what people with haemophilia and their parents and partners would like to see as outcomes of the treatment. What would result in a better quality of life for them?
When asked what they would like haemophilia treatment to achieve for them NOW, people completing the survey gave simple and practical responses. Their answers related closely to the types of benefits they could expect from current new therapies:
One person was also hoping for a cure now.
‘Stop the bleeding into joints so my kids can enjoy a NORMAL life.’
‘Easy, non-intensive delivery. Treatment that reduces all symptoms and prevents bleeds. Low frequency dosing.’
When asked what they would like their treatment to achieve IN THE FUTURE, people responding to the survey had an opportunity to give their wish list and some of their answers were quite different:
‘A cure would be incredible!’
‘Find a measure that can prevent carriers from transferring to their offspring.’
‘No needles. No bleeds.’
HFA’s vision is for active, independent and fulfilling lives for people in our bleeding disorders community. For many years our community members have had low expectations of their haemophilia treatments and it is exciting to see their vision of the future now that they can see the potential with new treatments.
We are currently working on fact sheets about new haemophilia treatments that will be available on our website. We have also included the survey results in our discussions about the 2023 Conference program. More about the fact sheets and Conference soon!
Our thanks to everyone who completed the survey.
Haemophilia Foundation Australia acknowledges the Traditional Owners and Custodians of Country throughout Australia, the land, waters and community where we walk, live, meet and work. We pay our respects to Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples.
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