Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

May is Lyme's month, and today I would like to raise in the House the issue of Lyme disease. Lyme disease is an infectious disease caused by bacteria from ticks. This is a disease that is not widely accepted and acknowledged here in Australia, but I have met with people who are living with Lyme disease and I see how difficult it is. The best way to prevent Lyme disease is to prevent being bitten by a tick.

Lyme disease is primarily a clinical diagnosis based on the patient's history, symptoms and presentation. Blood tests are relied upon to support the diagnosis, but they are not conclusive. It is one of those diseases that is really hard to pinpoint and hard to diagnose, and it is only after a lot of trial and pain that people are finally diagnosed with it. It is prevalent in Australia, that is true. Testing is not 100 per cent reliable. It is not that rare in Australia, although it is not widely recognised. One course of antibiotics will not cure it, and it can be transported from person to person. It is a chronic disease.

I have received correspondence from constituents, and one of the constituents who lives within my electorate has told me about her daughter's ongoing battle with Lyme disease. Alannah had suffered with the disease for some time, and her mother was very supportive of the initiative that I am sure a number of members have received. There has been a mail-out of cards making people aware of just how prevalent it is. Alannah writes:

18 months ago I was diagnosed with Chronic/Neurological Lyme Disease after approximately 15 years …

This is 15 years of fighting with symptoms and having incorrect diagnoses of rheumatoid arthritis—and that is a very common diagnosis for people with Lyme disease—and multiple sclerosis, and she has had pain and discomfort for all this time. It is sad that people have to go to such extents and suffer so much before they are finally diagnosed. Then, when they are diagnosed, the treatment is very, very expensive. For the last 18 months, Alannah has been having intensive antibiotic treatment alongside a very strict diet, and this has been the treatment that has been found to be most effective. She has been having 10-plus prescription drugs for 12 months and she has also been receiving IV antibiotics. She is starting to feel better, but she still needs regular testing to monitor the disease.

It causes a wide variety of symptoms and that makes it so much more difficult to diagnose. The most frustrating thing about the disease is that it is preventable if it is caught early before it turns into a chronic disease, because Lyme disease, being a chronic disease, has enormous impact on people's lives. There are some amazing organisations that have been working to try and raise awareness of Lyme disease and raise awareness of the need to have a better system in place for diagnosis.

If a person believes they have Lyme disease, it is not recognised by the New South Wales health department in Australia and there is really no option for public testing or treatment. It is very expensive and many of the medications are not covered under the PBS. Alannah says she gets through one day at a time. She has a supportive workplace and works in a field she is passionate about. She is very involved in guiding and she gets support from the guiding association. But she now has an accurate diagnosis and, as do all people with Lyme disease, only needs appropriate treatment.

Question agreed to.

Federation Chamber adjourned at 13:02