House debates
Thursday, 28 May 2015
Adjournment
Lyme Disease
12:57 pm
Jill Hall (Shortland, Australian Labor Party) Share 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
Christopher Grey
Posted on 31 May 2015 3:18 pm
To Ms Jill Hall MP (Shortland, Australian Labor Party,
I thank you for bringing this issue to the attention of the House. As you are aware, Lyme disease is a debilitating illness suffered by many Australians. For decades, the issue of Lyme has been placed squarely on the shoulders of sufferers and our Government persists in referring to flawed research, or/and asserting there's no evidence of Lyme. The evidence does not exist as no independent and sufficient research has been conducted to determine whether it exists.
I am delighted to read you have an interest. Thousands of Australians could have Lyme disease, also known as "The Great Imitator", as it imitates a significant number of illnesses including Alzheimers, Chronic Fatigue Syndrome, Parkinsons Disease, Fibromyalgia, and many others. Doctors are not trained to recognise Lyme and Lyme-related illnesses. A prominent political issue exists to help determine many Lyme-related issues, including whether an indigenous form exists (for example, Borrelia Queenslandica is a form of Lyme disease officially found in Queensland in 1962), how it affects Australians, and how it can be controlled and cured.
I would like to make you aware on 29 May this year, The Australian Government Department of Health issued a statement about, "which some medical and health practitioners have ascribed to Lyme disease or a Lyme disease-like syndrome." (http://www.health.gov.au/internet/main/publishing.nsf/Conten...). This article has deeply distressed many of us sufferers and hindered hope not only for recognition, but for recovery. Many live in misery. Some opt to end their misery by ending their life. We all have a story littered with despair, haunting medical experiences, significant emotional and financial loss, and overwhelming psychological issues due to many problems caused by a chronic illness caused by Lyme disease. Unfortunately, "chronic Lyme disease" is another political minefield with opposing views worldwide.
You may be appalled to note that a Committee to determine the existence of Lyme disease met only five times. A significant submission detailing their flawed work was submitted by one of Australia's premier Lyme disease charities, and is an exceptional and enlightening read. I do not represent them and I do not feel proper referencing it here, however, I shall be glad if you contact me and I shall forward a copy to you.
The Official Australia Government website to provide updates has provided no updates (http://www.health.gov.au/lyme-disease). No advice about how the Government is monitoring the significant issues it proclaims it's doing has been provided. There appears to be no public accountability. In addition to Lyme, ticks carry other diseases called co-infections, most of which are not recognised in Australia. There are no public awareness campaigns to advise Australians how to be "tick smart"; preventative measures, whether Lyme exists or not. More will suffer because of the ignorance of their Government. This has the potential to be a significant medical issue for Australia; a pandemic the country will have no apparent understanding about other than statistics showing clear increases in related chronic illnesses.
Politically, Lyme disease is a global problem. It affects every corner of the world. Australia is unique in its reluctance to accept it exists.
Again, I thank you for raising your interest and for reading this letter of support. Lyme disease sufferers are rarely heard and it is rarer still for a political voice to reach out for those placed in a medical backwater and left to drown.