President, Haemophilia Foundation Australia
We are pleased that you can now view most of the sessions from the 20th Australian Conference on Haemophilia, VWD and Rare Bleeding Disorders on our website. It was HFA’s first virtual national conference, held over 8-9 October 2021, and we were grateful for the work put in by the Conference Program Committee to develop such an interesting program. When you watch the sessions, if you haven’t already done so, you will see the invited speakers made a concerted effort to give lively and challenging presentations.
It is always exciting that no sooner has the HFA Conference taken place than we are looking forward to the WFH Congress. WFH held a hybrid congress this year during 8 -11 May 2022, making it possible to attend face-to-face in Montreal or virtually. You may have joined the Congress and associated meetings virtually as I did.
I was grateful that Shauna Adams from HFACT attended the Congress in person, and that she agreed to be the face-to-face presence for HFA, joining me as HFA representatives at the WFH General Assembly on 7 May 2022. This is the WFH Annual General Meeting and it is important to HFA that we participate. Shauna had been awarded a Youth Fellowship for the Congress which was to be held in Kuala Lumpur, Malaysia in 2020. Fortunately, this was carried over for the Montreal meeting and Shauna was able to attend.
You will hear from Shauna about her reflections on the Congress in the September issue of National Haemophilia, along with other reports of Congress sessions attended virtually by Australian community members and specialist health professionals.
We finished the national Conference on a high. There is so much to look forward to and there is now considerable knowledge about the impact of some of the new treatments already available and others around the corner.
But significantly, the HFA Treatment Policy was affirmed. We learned how important it is that our community continues to have access to a range of treatment products, even the older ones which are effective and necessary for some people in our community. We will continue to advocate in support of the national framework established under the National Blood Agreement that means all Australian governments, federal and state/territory, share the cost of our treatments and that these are managed and supplied at no cost to patients by the National Blood Authority. We do not take this system for granted as we know how many of our global bleeding disorders friends do not have the surety of supply and ongoing treatment. As new therapies for bleeding disorders, including gene therapy for haemophilia come to market we will be advocating to our governments for early access.
It is a critical time in our health system. The government policies for evaluation and assessing new treatments are being reviewed and HFA looks forward to participating in the National Medicines Review and the review of Health Technology Assessment. These reviews are both fundamental to access to medicines in Australia and the bleeding disorders community has considerable experience with this. We know the consequences of delays in access to available new treatments. We also can share in a constructive way the importance and value of new therapies to both individuals in our community and the Australian community generally, with case examples showing the benefits of new treatments. We look forward to early opportunities to meet with the new government to share some of these experiences.
We are particularly mindful that there are no formal community organisations for bleeding disorders in either South Australia or Northern Territory, but there are informal connections and representation nevertheless.
Community members in South Australia should watch out for news about the next information evening to be arranged by the Haemophilia Treatment Centres in Adelaide.
We are very keen to make sure our community members have a say in HFA activities regardless of where they live and I invite you to contact HFA if you have ideas or concerns about your treatment or the work that HFA does. Feel free to phone HFA on 03 9885 7800 or email firstname.lastname@example.org.
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