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Wednesday, 15 October 2003
Page: 21553


Mrs MAY (7:43 PM) .)—The delivery of health services is certainly a topic attracting a lot of media and community debate at the moment, but tonight I would like to put on the record my support for the Commonwealth government's Life-Saving Drugs Program. Until a couple of years ago I knew nothing about this little known program that provides funds under an appropriation item established for the specific purpose of assisting access by individuals to expensive and life-saving drugs accepted by the PBAC as clinically effective, but not available as pharmaceutical benefits because of a failure to meet cost-effectiveness criteria.

A number of years ago I had the privilege of meeting an inspirational young lady who was awarded the 2000 Queensland Telstra Business Woman of the Year—a woman who is a passionate crusader for causes, particularly in the area of health. Rosslyn Bates is a trained nurse who has won numerous awards for her work in health fields, but she is also a woman who passionately believes in raising the awareness of rare genetic orders. I had never heard of Gaucher disease or Fabry disease until I met Rosslyn.

I know Rosslyn has contacted many of my colleagues on this side of the House, and indeed many in the opposition, to set up appointments with a view to raising awareness of these diseases and, in many cases, advising members that they have in their electorates people suffering from these diseases who need their support. Currently the Life-Saving Drugs Program funds enzyme replacement therapy for those people suffering from Gaucher disease. The treatment is expensive, and I commend the government for continuing with this program to enable sufferers to lead some sort of normal life. Gaucher disease is challenging to live with. The disease causes spleen and liver enlargement, bone deterioration, anaemia, bleeding, bruising and fatigue. So what does the program mean to those people diagnosed with Gaucher disease? How is the patient's quality of life enhanced by the drug cerezyme which is used to treat this rare disease?

I had the opportunity of speaking to Loraine Mitchell, who is president of the Gaucher Patient Group in Australia. She also sufferers from the disease and shared with me her own personal battles and the challenges she has faced since being diagnosed with Gaucher disease at the age of 11. As a young teenager her spleen was removed because it got too big. Loraine suffered blood noses at least three times a week. Her doctors were not originally aware of how the disease affects the bones. Lorraine had to give up her ballet lessons because her hip seized up at the age of eight. She could not walk and ended up in traction for three days, so there was no more ballet.

The biotechnology industry is a growing industry and one that should be encouraged and funded. Enzyme replacement therapy, through research and development, has given Loraine a quality of life she has not enjoyed since she was a young child. And what type of difference has the enzyme replacement therapy made? In her own words, the first thing Loraine noticed was that `she would wake up in the morning and feel so refreshed she could jump out of bed ready to tackle the world'. Prior to enzyme replacement therapy it was a totally different story. Loraine was always tired; even after eight hours of unbroken sleep she would feel like she had only had five minutes. She had continual pain in her back and hips. She could not walk for long distances. She would only have to do an hour or two of light gardening and she would not be able to move the next day. As a child and teenager Loraine learnt to pace herself. She would have frequent naps during the day. When you are born with the disease, it becomes a normal way of life and you know nothing else. But the breakthrough of the enzyme replacement therapy has changed all that.

The federal government's commitment to the Life-Saving Drugs Program has turned Loraine' s life around—and the lives of many other Gaucher patients. Since beginning the therapy four years ago, Loraine has increased her energy levels. She climbed Uluru with her husband in the year 2000—a goal she could never have achieved without this program. Loraine can now go for long walks, enjoy dinner out in a restaurant and go to the beach. She can now enjoy the simple pleasures in life without her hips hurting or her fingers swelling up. Her only regret is that this very effective treatment was not available to her when she was a child or teenager. For those young people now being diagnosed with Gaucher disease this effective treatment will enhance their quality of life. The patient group in Australia, however, is concerned that patients can only access the treatment once their symptoms become very severe. There is concern that this delay in treatment can lead to permanent damage such as bone death. There are concerns that any reduced level of dosage of the enzyme will mean the treatment will become less effective.

I strongly urge all members of the House to support this program. It is only when you meet the patients that you have a better understanding of what life can dish out. We in this country do enjoy a standard of living and a health system that has some enormous pluses; the Life-Saving Drugs Program is one of those pluses. I strongly urge the coalition government to continue funding this program for those people in our communities who suffer from rare genetic diseases.