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

Natasha Griggs (Solomon, Country Liberal Party) Share this | Link to this | Hansard source

Is the motion seconded?

Graham Perrett (Moreton, Australian Labor Party) Share this | Link to this | Hansard source

Yes, I second it.

Teresa Gambaro (Brisbane, Liberal Party) Share this | Link to this | Hansard source

I thank the member for Shortland for her delay tactics! I would also like to thank the member for Shortland both for the motion and for her graciousness in the chamber today.

Lipoedema is a condition that is little known about and there is limited information available on the cause and prevalence in Australia. Lipoedema is a chronic condition where an abnormal buildup of fat cells occurs in the legs, thighs and buttocks. It is not limited to a person's weight and it affects people from all ranges and all ages, most commonly in females. The cause of lipoedema is not known but evidence suggests that it occurs almost exclusively in women and may be linked to a family history of the condition. Given that the symptoms usually start in puberty or with pregnancy, it is thought that hormones have a large influence on the condition. Lipoedema does not discriminate across weight ranges. While the accumulation of fat tends to be worse in people who are obese, it also affects people who are in the normal weight range. While diet might help to control the secondary symptoms, such as pain and disability, it does not make any difference to the progression of the disease.

As I said, lipoedema is a condition not widely known about. There is limited information available about the prevalence in Australia. It does not appear to be broadly recognised as a chronic condition. For example, it is not included in any of the Australian medical textbooks or training. Therefore it is not always possible to substantiate the prevalence in 5-15 per cent of the population. I know that Ms Hall has tried to provide those but it is difficult for the department to estimate if this is an underdiagnosed disorder, as always when you do not have the accurate prevalence figures. On that basis currently lipoedema is not a research priority area for the government. National funding to manage chronic disease conditions such as lipoedema is provided through programs such as Medicare and the Pharmaceutical Benefits Scheme, which support access to care and medicines. Support is available through Medicare for general practice and specialist medical services that may be used to treat lipoedema. In addition there is support for people with a chronic condition and complex care needs that are being managed by their GP under GP management plan and team care arrangements.

For the secondary conditions such as the pain that results from lipoedema, treatment is available from a range of pharmaceuticals subsidised under the Pharmaceutical Benefits Scheme. In 2012-13 the federal government spent more than $340 million under the Pharmaceutical Benefits Scheme on analgesic medicines to alleviate pain. The government also made significant investments into pain and pain management research, with more than $97.4 million allocated through the NHMRC since 2003.

The Abbott government appreciates the challenges in daily living faced by many of the individuals and families affected by chronic conditions and chronic pain. The government addresses chronic conditions and chronic pain through a broad range of programs and initiatives through Medicare, the Pharmaceutical Benefits Scheme, the National Palliative Care Program, the National Prescribing Service and the National Health and Medical Research Council. A review was published in the British Journal of Dermatology in 2009 which indicated that lipoedema may not be a rare condition in the United Kingdom but without early diagnosis and appropriate management the condition can be associated with considerable morbidity. Management strategies, including patient education, weight control and surgical procedures such as debulking procedures or liposuction, can be used.

Prior to any consideration of public awareness campaigns or the provision of additional services, a similar review of the condition in Australia would be appropriate to determine how it should be recognised. There is a real need to change the status quo, and that is why from January 2015 the largest medical research will be provided which will benefit all Australians by harnessing the capacity of our researchers and bolster Australia's reputation as a world leader in development of new medicines and technology. The government has made a huge commitment to medical research and medical research will be a key knowledge-based industry for the 21st century and hopefully it will find a cure to this condition.

Natasha Griggs (Solomon, Country Liberal Party) Share this | Link to this | Hansard source

The time allotted to this debate has expired. The debate is adjourned and the resumption of the debate will be made an order of the day for the next sitting.

Sitting suspended from 13:29 to 16 : 03