Monday, 22 October 2018
Private Members' Business
That this House:
(1) notes that:
(a) 7 to 13 October 2018 is Bleeding Disorders Awareness Week;
(b) haemophilia, the most common bleeding disorder, affects more than 2,700 Australians, almost all of them boys and men;
(c) haemophilia is a genetic disease where a lack of a protein in the blood needed for clotting leads to excessive bleeding, often into joints and muscles;
(d) haemophilia impacts every aspect of day-to-day life—activities we all take for granted—as a result of hospitalisations, pain, accumulated disability and psychological impacts;
(e) treatment for bleeding disorders is delivered through specialised haemophilia treatment centres across the country and is jointly funded by the Commonwealth, state and territory governments through the National Blood Agreement; and
(f) the Haemophilia Foundation of Australia delivers vital support to Australians with bleeding disorders through advocacy, education and promotion of research;
(2) recognises that:
(a) while haemophilia treatment has improved significantly in recent years, there is still a significant need for improved treatments to deliver a better quality of life;
(b) reforms to the Therapeutic Goods Administration process to evaluate new medicines now allows for expedited priority review of new treatments for serious conditions such as haemophilia; and
(c) however, the road to fund new bleeding disorder treatments remains complex; and
(3) calls on the Government to continue working constructively with state and territory governments to ensure all Australians with bleeding disorders receive timely access to the treatments they need.
In moving this very important motion I speak in support of the more than 2,700 Australians, mostly boys and men, living with haemophilia. I acknowledge also the members of the Haemophilia Foundation Australia and thank them for not only raising awareness of this insidious disease during Bleeding Disorders Awareness Week but also the work they do delivering vital support to Australians with bleeding disorders through advocacy, education and promotional research. I also acknowledge my parliamentary colleagues, the member for La Trobe, for seconding this motion in a show of bipartisanship, and the member for Macarthur, who, as a doctor, has treated many sufferers of haemophilia, understands the importance of this motion and thanked me for raising it in the House.
Haemophilia is a rare and lifelong bleeding disorder that is complex to diagnose and difficult to manage. Australians who suffer from haemophilia lack a clotting factor and therefore suffer from bleeding due to injury, surgery or, sadly, for no apparent reason at all. It's the quality of life available for those Australians who live with haemophilia that concerns me, and that is what has prompted me to move this motion. Australians living with haemophilia face physical, financial, employment and psychological challenges throughout their lives.
Pain, patience and perseverance are the three words my Jacana constituent, David Cunningham, uses when asked to describe his life and living with haemophilia: pain because people are in pain all the time or, as he says, 'at least I am'—and that the pain of a major bleed is a nine out of 10 and can last for days on end—patience to get through the ongoing hospital visits during a lifetime of living with haemophilia; and perseverance to:
Keep going, don't give up, don't sit around and do nothing.
David is 63 years old and lives with haemophilia A. He was first diagnosed as a young boy. With no known family history of the bleeding disorder, there were limited people around David who understood the impact haemophilia was having on his life. Growing up in the sixties and seventies, David remembers that there wasn't a lot of support available to allow him to independently manage his condition. Even though he acknowledges that patients today have much greater flexibility and choice, he says there's still more to do and adds that, unless there is a cure, people like him with haemophilia still need support and relief from the disease.
David, like many others who have been living with haemophilia all their lives, has had a chance to reflect and recount what life is really like for sufferers. Even though his bleeds lessened as he got older, when he did bleed, he'd have to take a week at a time off work to recover. With sick leave used up, he resorted to unpaid leave. Then, when his condition worsened, work became untenable. David retired forcibly at 45, after 20 years in a profession he loved, including teaching the young minds at Broadmeadows West Technical School. As a result of haemophilia A and other health complications such as type 2 diabetes, David had to go on the disability support pension, and he's still on it today. This is a man who loved to play football and cricket but had to stop because of ongoing bleeding into his joints and muscles. An avid sports fan and a one-eyed Collingwood supporter, because of mobility issues he can't go to the games anymore and can only watch his beloved team on television.
He says haemophilia is an isolating disease, even more so for him. The bleeds to his knees and ankles have taken their toll, and now David has limited capacity and walks with crutches. He says:
I don't get out as much as I used to because it's hard for me to get out, sit down and then get up, so I just stay home.
David wishes that he was able to enjoy his retirement more but says living with haemophilia has made this impossible:
You get used to it—life goes on and you learn to accept it.
Haemophilia sufferers shouldn't have to get used to this quality of life that sees them retire in their prime, being unable to live an active and healthy life, suffer from financial distress and the list goes on for many of them. More needs to be done to find a cure to this lifelong disease so that we can give Australians who suffer from haemophilia the quality of life they deserve. More investment needs to go into research and development for this disease. I'd like to call on the government to work even more closely and constructively with the state and territory governments to ensure all Australians with bleeding disorders receive timely access to the treatment they need. This will ensure that people like David can finally get the care, treatment and quality of life that should be afforded to all Australians, which David says will be lifesaving for the young Australians who suffer in silence because of this disease.