Gavin Finkelstein is President, Haemophilia Foundation Australia
As I thought about the things to mention in this publication I was mindful that I will be seeing some of you at the upcoming 17th Australian & New Zealand Conference on haemophilia and related bleeding disorders quite soon after you receive it.
I am looking forward to the Conference, yet it doesn’t seem so long ago that we came together for the WFH 2014 World Congress in Melbourne. Our national conferences and the World Congress are very different from one another, but they each offer people with bleeding disorders something special. For me, the smaller local conferences we have in Australia are great because they bring people from different parts of Australia (and some from NZ) and we can concentrate on local issues. Of course we can learn from the overseas experiences of others, and we can measure how well we are going in terms of treatment and care standards, but it is good to stop and think about how things are going here in Australia.
It is a big country, and people with bleeding disorders are distributed widely around the country just like the general population. Some people with bleeding disorders don’t have a chance to meet others because they live in rural or remote areas. But even for those of us who live in cities, we may not see each other very often. We did at one time, when we spent more time at the hospital. Home therapy revolutionized our treatment, and home delivery has made it very convenient. How often do you visit your Haemophilia Centre? We do need to keep in touch with our treatment team in case issues arise or things change. I know how easily time slips by. You might be thinking it is time to set up a review appointment with the Haemophilia Centre, then before you know it, you get busy, time passes and you still haven’t made that appointment. It is important for all sorts of reasons.
As I mentioned above, with home therapy and prophylaxis, many of us don’t need to go to our Haemophilia Centre as often as before. This means we don’t see our peers as often. This is why I think our national conferences are so valuable. They are great to meet, share ideas and socialize together as well as check we have best practice treatment and care and be on the look-out for new treatments that are around the corner. We already have longer acting clotting factors registered for use in Australia but not yet funded. It is important that we are well educated about all treatment products so we can make a good decision with our doctors about which products we should use.
It may not be too late at the HFA end yet, so if you can make quick plans, you might still be able to get to the Gold Coast! If you would need help with funding, I suggest you call HFA immediately on 03 9885 7800 as there still might be some financial assistance available.
We will publish the speakers’ presentations on the website in the months following the Conference so if you are not there in person we hope you will be able to follow some of the sessions afterwards.
The news on the hepatitis C treatment front is very frustrating. Generally when the Public Benefits Advisory Committee recommends a medicine for listing the medicine becomes available to Australians at a subsidised rate. Although PBAC has approved the new hepatitis C treatments for certain indications, they are still not available and we are hearing about the desperation of people who need treatment urgently. We will not rest until everyone gets the treatment they need.
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