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

I move:

That this House:

(1) notes that:

(a) June is Lipoedema Awareness Month, and that Lipoedema is a painful disorder of fat metabolism and distribution that causes deposition of fat in 5 to 15 per cent of the population (mainly women) in the legs and arms; and

(b) Lipoedema is:

  (i) an underdiagnosed disorder for which sufferers receive poor medical diagnosis and no counselling support—Lipoedema is a poorly supported illness; and

  (ii) one of the most underfunded chronic conditions in Australia with limited research as to its cause and the treatment required for patients;

(2) calls for:

(a) a public awareness campaign to be launched and for Medicare Locals to be involved in the campaign; and

(b) support to be given to people living with Lipoedema to ensure appropriate ancillary services are available; and

(3) notes the need for research and population data on Lipoedema.

June is Lipoedema Month. For members who are unaware of lipoedema, it is a painful disorder involving fat, metabolism and distribution. It affects the distribution of fat in five to 15 per cent of our population and mainly women. Lipoedema is something that I was quite unaware of, although I had seen women who suffered from it in the past. There is very little information about this disease and it is very poorly funded. Any research and treatment of the disease is very limited. It is a genetic disorder. Typically, there is a pattern of fat accumulation from the hips to the ankles and the upper arms.

Lipoedema may be found in women of all sizes. Diet and exercise do not decrease lipoedema fat, although they are important in managing the disease. Lipoedema may be present at the time of birth or it may manifest in puberty, during pregnancy, during changes that lead to menopause, following surgery or after general anaesthetic. It is triggered by an extremely stressful situation. When hormones increase, it causes inflammatory cascade and quite often it is misdiagnosed as obesity. It is quite painful, and that is something that people are unaware of. It is quite painful. As well as the painfulness of the disease, it is also very hard for a woman to live with because it attacks her self-image.

It was first discovered in 1940 by Allen and Hines from the Mayo Clinic. Over 60 years later, there is still very little knowledge of it. It is quite often misdiagnosed. Sadly, most Australian women who have lipoedema are not diagnosed in the early stages and are at the second, third or even fourth stage. In the later stages, little can be done surgically. By the time lipolymphoedema is diagnosed—and that is at the final stage—the lymphatic fluid is building up in the limbs.

I have heard some horrific stories over the last week, since this issue was first raised with me. From the third stage on, mobility is often compromised, and that causes a further level of disability. It is a major cause of women working fewer hours or retiring earlier. A survey by the Lipoedema Australia Support Society in 2011 showed that 52 per cent of lipoedema sufferers suffer for 30 to 45 years before being diagnosed, and more than 80 per cent have the condition for over 10 years before being diagnosed. Given that it is debilitating in nature and given the impact that it has on a woman's appearance, it is really sad that this is the situation. The same survey showed that most sufferers saw three medical practitioners before it was diagnosed. Alarmingly, most said that, after the diagnosis was made, very little treatment was offered.

There are a number of things that need to happen. It is Lipoedema Awareness Month. Lipoedema should be covered under the Chronic Disease Management Medicare list. Lipoedema should be seen as a disease by Medicare and health insurance companies, because the money is not there for the appropriate treatment. Medicare Local offices throughout Australia should promote Lipoedema Awareness Month. The training of general practitioners to recognise and treat lipoedema is paramount. Surgical treatment for lipoedema needs to be recognised by Medicare, and plastic surgeons should be trained to be skilful in liposuction techniques. Specialist ancillary services such as counselling, dietary advice, rehabilitation and exercise consultants need to be available through Medicare and health insurance companies.

This is a disease that has an enormous impact on the lives of women. There is no research taking place. We need research. It is time that action be taken to give people hope, to give people a future and to allow them to enjoy a normal life, the kind of life that other Australian men and women enjoy, without being debilitated and having their mobility and their lives impacted on in such a way. Really, Australian medical research into lipoedema needs to be funded because nil takes place at the moment. (Time expired)

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