From the President

GAVIN FINKELSTEIN

Gavin Finkelstein is President, Haemophilia Foundation Australia

TREATMENT

As we are already reaching the end of the first quarter of the year, it is clear to see it is going to be a very busy one. We are looking forward to an opportunity to make a submission to the National Blood Authority (NBA) consultation about the supply and purchase of factor VIII, factor IX and Factor VIIa. The current NBA supply contracts for these imported plasma and recombinant products are due to expire during 2017 – 2018 and stakeholders have been invited to make comment about the future. The NBA has advised it has options to extend some of these contracts, but that they are seeking views about this and information about other products that may be available.

We have been interested in a new wave of treatment products, and after the Orlando Congress in July 2016 we reported information about extended half life (EHL) products, products that mimic factor VIII and even that gene therapy is getting closer and closer to being a reality.  Some EHL products have been registered for use in Australia for more than two years, but they are not funded. Others may be registered soon. HFA has advocated for these products without success to date.

The NBA consultation is a good opportunity for everybody to share their views. You may have been involved in a clinical trial with good results and you may wish to share the outcomes in a submission. HFA is grateful for the many people who have shared their experience of these products either in clinical trials or extension studies to help HFA focus on the important features of our upcoming submission. But you might also prefer to make your own submission. We encourage you to do so. The consultation closes on Friday 17 March 2017. For more details and to make your own submission go to: https://www.blood.gov.au/public-consultation 

CONFERENCE

The upcoming 18th Australian & New Zealand Conference on Haemophilia and Rare Bleeding Disorders will be held in Melbourne 12 -14 October 2017. We are soon to publish the registration brochure so that you can get in early and book your place, and start making your plans for a break in Melbourne.

The Conference theme is Looking Forward to Change and the list of speakers is already looking great.

We hope to have some financial support available to people keen to attend the Conference. We will have seen many delegates at the previous conference on the Gold Coast in 2015. If you didn’t make it to the Gold Coast meeting, but you did make it to the WFH World Congress in Melbourne in 2014 it’s important to know the October meeting will be very different – smaller, locally oriented, but with a good balance of what is going on with bleeding disorders around the world. It’s a great way to stay in touch with new treatments and improving your health, and getting to know what is around the corner. Come and join us to meet old friends and make new ones!