Ricky Muir (Victoria, Australian Motoring Enthusiast Party) Share this | Hansard source

Due to the confusion in the Senate in the lead-up to this sitting period there was uncertainty as to whether the Social Security Amendment (Diabetes Support) Bill 2016 was going to have an opportunity to be debated, so I would like to thank the chamber, and of course my parliamentary colleagues, for the opportunity to present my second reading speech today. Some would ask, why would the representative of the Australian Motoring Enthusiast Party be debating a bill in relation to type 1 diabetes? Well, the party may have a single-issue name, but we are all too aware that this position—my role—comes with a responsibility to all Australians. This is an important issue, and I am proud to be the one to bring it front and centre in parliament and for it to be debated, hopefully quite thoroughly.

Type 1 diabetes directly affects over 120,000 people in Australia alone, some of whom work right here in Parliament House. Type 1 diabetes, an autoimmune condition, is a non-choice disease that lasts for life. The Social Security Amendment (Diabetes Support) Bill 2016 will ease the impact of diabetes on individuals who are affected by the disease. The purpose of the bill is to amend the Social Security Act 1991 to give individuals with a diagnosis of type 1 diabetes access to the required medication and peripheral devices that the disease imposes upon them, regardless of their geographic location or social status.

Type 1 diabetes is a form of diabetes marked by a complete lack of insulin. Therefore, insulin replacement is required for survival. Type 1 diabetes can create a significant financial and emotional burden for patients, their family and the community. Differing social statuses can result in an unintended disregard for an individual's care plan, leading to a higher risk of complications that require hospital admissions. As a result, it can impose a significant burden on the taxpayer.

The more time people with type 1 diabetes spend outside the normal range of blood glucose levels, the greater their risk of serious health complications. Currently the cost of hospital admitted patient services as a result of diabetes-diagnosis admittance is equal to expenditure on blood-glucose-lowering medications. This level of hospital admittance is a completely unnecessary burden on the taxpayer which could potentially be reduced should this bill be supported. This bill ensures that access to medication and peripheral devices that are required by individuals with a diagnosis of type 1 diabetes are accessible regardless of socioeconomic status.

I was approached by Dr Peter Goss of the Gippsland Paediatrics diabetes unit in Sale, in my electorate of Victoria, in October 2014. Dr Goss requested that I advocate for the age group of 18- to 25-year-olds with type 1 diabetes. At the time, he cited that this group has the highest rate of death from diabetes. With such a substantial number of Australians being directly and indirectly affected by type 1 diabetes, this was something I was more than happy to discuss further and support unconditionally.

Type 1 diabetes is an unwelcome and unwanted intruder into the life of an individual and their family. It is an autoimmune disease that cannot be prevented or cured. Before the discovery of insulin in the 1920s, type 1 diabetes was a fatal condition. Although type 1 diabetes is now manageable, it places an enormous burden on families by requiring them to enter a daily and relentless grind of blood testing and insulin injections. There is solid evidence that the peak risk of poor control of type 1 diabetes and death is between ages 16 and 25 years. Currently a child with type 1 diabetes often loses their Health Care Card at 16 years, which imposes a significant financial burden on the person with type 1 diabetes as they enter their most vulnerable period of life. There is also anecdotal evidence that young people are more likely to skimp on the essentials of diabetes care, such as insulin scripts, glucagon scripts, blood glucose and blood ketone test strips, insulin pump consumables and even quality food because of the cost.

This lack of attention to scripts, doctors visits, diabetes education visits and devices due to lack of financial assistance can create long-term complications and possible hospital admissions, which imposes significant health and financial burdens on not only the individual but also the community. Given that type I diabetes is a lifelong autoimmune disease, it is not unreasonable to not only try to ease the pressure on such a high-risk demographic but to make available to all those at risk a healthcare card to assist sufferers of type 1 diabetes in accessing the medical and peripheral devices required.

On 20 August 2015, I moved a motion in the Senate in relation to type 1 diabetes. The text was:

That the Senate—

(a) notes that:

(i) Type 1 Diabetes Mellitus is an autoimmune (not lifestyle) condition which affects over 120 000 Australians,

(ii) people diagnosed with Type 1 Diabetes require insulin to manage their diabetes for life,

(iii) Type 1 Diabetes is one of the most common chronic diseases affecting children in Australia, and

(iv) Type 1 Diabetes creates a significant financial and emotional burden for its patients, families and the community; and

(b) acknowledges the importance of access to optical medical management for people with Type 1 Diabetes regardless of geographic location or social status.

This motion was passed in the Senate unopposed. In addition to this, I note that the Australian National Diabetes Strategy 2016-2020, which was released to supersede the National Diabetes Strategy 2000-2004, was endorsed by the Australian Health Ministers' Advisory Council on 2 October 2015, noted by the COAG Health Council on 6 November 2015 and publicly released on 13 November 2015.

Since I moved my motion, I am pleased to note that the Australian government has developed a new national diabetes strategy to update and prioritise the national response to diabetes across all levels of government. I appreciate that there are current government initiatives in place in addition to the recently developed Australian National Diabetes Strategy 2016-2020, such as the National Diabetes Services Scheme and chronic disease management assistance to assist individuals. I strongly believe that the Social Security Amendment (Diabetes Support) Bill 2016 can work in collaboration with the key government initiatives which are essential for individuals diagnosed with Type 1 Diabetes. I also believe that the Social Security Amendment (Diabetes Support) Bill 2016 can support some of the key purposes outlined in the Australian National Diabetes Strategy.

The purpose of the Australian National Diabetes Strategy 2016-2020 is:

… to prioritise Australia’s response to diabetes and identify approaches to reducing the impact of diabetes in the community. It recognises the social and economic burden of the disease and provides action areas that:

More specifically, goal 3 of the Australian National Diabetes Strategy 2016-2020 aims to:

… reduce the occurrence of diabetes-related complications and improve quality of life among people with diabetes.

The potential areas for action addressed with this goal are:

Develop nationally agreed clinical guidelines, local care pathways and complications prevention programmes …

Expand consumer engagement and self-management …

Develop and implement quality improvement processes …

Use information and communication technology …

Improve affordable access to medicines and devices …

Improve workforce capacity …

Improve funding mechanisms …

Provide mental health care for people with diabetes …

Strengthen and expand transition from child to adult services …

Make preschool, school and child care diabetes safe environments …

Provide high-quality hospital care.

Many of these potential areas for action can be addressed directly and indirectly through support for this bill. More specifically, optimal diabetes care for children or adolescents in school is crucial to achieve the best possible diabetes control and to prevent any present or future risk of harm to their health and wellbeing. This will give affected children and adolescents the best opportunity to concentrate, participate and learn whilst at school.

Children with type 1 diabetes should have the same educational and social opportunities as children without diabetes. Every child has the right to participate equally in school activities, including outdoor activities and sponsored events away from school, and to receive support for diabetes care. Ensuring the implementation of accessibility to diabetes care from a younger age will carry over into better diabetes care practices into adolescence and adulthood.

In closing I would like to readdress the importance of awareness surrounding type 1 diabetes. Not one person who has type 1 diabetes had a choice in their diagnosis. It cannot be prevented or cured. Type 1 diabetes creates a significant financial and emotional burden for patients, families and the community. This bill will ensure medication and peripheral devices that are required by individuals diagnosed with type 1 diabetes can be accessed regardless of one's socioeconomic status. If we are in any way serious about improving the quality of life of people with type 1 diabetes, I suggest all senators support this bill.

I would also like to take this opportunity to inform the Senate that, since I introduced the Social Security Amendment (Diabetes Support) Bill 2016, I have received copious amounts of correspondence and support. It is moving that so many people have taken this opportunity to reach out to me, sharing their personal accounts of the highs and lows associated with the burden that comes with being diagnosed with type 1 diabetes. These often saddening accounts have come not only from individuals who have been diagnosed but also from their loved ones: the parents who have to care for their child knowing that every decision they make will affect the future health of the life they created; the brothers and sisters who have to accept a feeling of helplessness when their sibling may not have the same support and health care as themselves for a disease which is not their fault; the extended family members and friends who can do nothing but sit back and watch loved ones doing all they can in an often disheartening battle.

I would like to share a couple of these messages from individuals who have made contact with me. Kyla sent to me on Tuesday, 8 March:

Dear Mr Muir

Thank you so much for addressing this vitally important issue.

My son was diagnosed with this horrific chronic disease a week after his second birthday. It has changed our life in every conceivable way.

There are of course the numerous finger pricks, insulin injections, set changes; the weighing and calculating of every gram of carbohydrate, fat and protein of every mouthful of food that passes his lips; the never ending night checks and constant zombie state of sustained sleep deprivation; and the unending worrying about how every bit of exercise or play or even a common cold will effect his blood sugars. There's the largely unspoken detrimental effects on partnerships and family relationships, the constant stress and fear of your child not waking up alive and the fear of every day childhood occasions like birthdays, sleepovers, and even just being away from you at school.

There is also a huge financial burden - even with a health care card.

… and all of this is just from a parents point of view.

My little boy will have to deal with this for the rest of his life. There is no way that this disease was his fault. As you know Type 1 Diabetes is not caused by eating too much sugar or not exercising enough. This is a life threatening autoimmune disease. He will have so much to deal with every hour of every day forever, and that's not counting any of the other everyday stuff.

Please, please, at least continue to allow him, and every other person with Type 1 Diabetes, fight this ongoing battle with the subsidised medical necessities they need throughout their lives.

Yours in hope

Kyla

Juanita sent to me on Wednesday, 9 March:

I'd like to see ALL Type 1 Diabetics be included in this Bill. As a Type 1 Diabetic, the costs associated with this disease are high. It becomes a financial juggling act with the questions 'do I buy diabetes medication and peripherals or do I buy food' this week? The costs associated with Type 1 Diabetes are often subsidised, however, even with these subsides it is expensive and often we have to 'go without' necessary medications/insulin, test strips and other peripherals, simply because we cannot afford them. My council, has taken away all public sharps containers, it now costs $22 for every 2.5kg container $7.50 per container as well, so, that's around $30 per disposal. Add to that the cost of test strips, machines, insulins etc each week and that's before you even think about buying 'healthy' foods, such as fresh produce. We, as Type 1 Diabetics, get 5 free visits per year from the government, however, with Diabetes Educator, Dietitian, Exercise Physiologist, Podiatrist and Optometrists visits, that's just one visit each per year and I've have several visits alone, just with the Diabetes Educator in these last few months. That means no Dietitian, Podiatrist, Optometrist or Exercise Physiologists for me for another year and if I need to see my Diabetes Educator again, it will cost me around $70 per visit. I can't afford that. Type 1 Diabetes, is not a lifestyle disease, it's not something I brought on myself and it's hard enough to live with, without the costs associated with trying to maintain it to it's optimum level. It ends up being a choice between 'do I want to keep my blood sugars under control? Or do I want to eat this week?' Each week, I have to decide which Diabetes product I need the most, test strips? Or Insulin? Glycogen? Glucose? Hypo snacks? If I had a Health Care Card, I could afford to do what I'm supposed to do, with medications, etc and thereby, easing the burden on the health care system in the future. Unless there are changes to all health care cards, I'm a statistic waiting to happen, will it be Kidney failure and Dialysis? Or perhaps, Heart disease? Amputation of limbs? The list goes on. Give ALL TYPE 1 DIABETICS a permanent health care card. It will be cheaper in the long term!

Juanita

This is just the tip of the iceberg. Not one individual's situation is the same as another's. A doctor cannot simply look at an individual diagnosed with type 1 diabetes and say, 'Okay, you have diabetes; take this medication.' The healthcare plan required by each and every person diagnosed with type 1 diabetes is individually tailored to them by a team of healthcare professionals, including but not limited to endocrinologists, diabetes educators and dieticians.

I would also like to address some questions I have received from individuals in relation to my introduction of this bill. As mentioned earlier in my second reading speech, this healthcare card would only be applicable to individuals who are diagnosed with type 1 diabetes. This is due to the fact that type 1 diabetes is a non-lifestyle disease. There is no prevention for type 1 diabetes. There is no cure for type 1 diabetes. Unlike other forms of diabetes, there is no alternative to insulin injections for life for the individuals who fall into this category. As a nation we need to be looking at preventative health. Assisting individuals diagnosed with type 1 diabetes to maintain optimal health could significantly reduce future health costs associated with disabilities derived from diabetes related complications.

If there is the opportunity to ease the emotional and financial burden on individuals and families affected by type 1 diabetes, why would it not be considered? If there is the opportunity to make diabetes control more accessible to people diagnosed with type 1 diabetes, preventing permanent damage, why would it not be considered? This is the first step in a preventative health approach, setting a positive precedent for the future of Australian health.