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Wednesday, 28 October 2009
Page: 11387

Mrs MOYLAN (10:46 AM) —I spoke in this place recently about this matter but I think some of my comments bear repeating as there are some very important issues for this debate. The Private Health Insurance Legislation Amendment Bill (No. 2) 2009 provides that opportunity. Back in 2005 the Commonwealth government made a series of improvements to the Prostheses List arrangements so that insured patients had access to a range of clinically effective and appropriate prostheses at a reasonable cost. For us in this place one of the great challenges is how we can deliver best-practice medicine to people and at the same time make sure that the systems we put in place are cost-effective and make the best use of the available money in the health portfolio. Those tensions are not easy to manage.

The Review of the Prostheses Listing Arrangements, which was chaired by Mr Robert Doyle, stated that the fundamental logic of the new arrangements was that prostheses should be listed if they were clinically effective; that items of equivalent clinical effectiveness should receive the same benefit, and that incremental benefits should be available for incremental improvements in clinical effectiveness and cost effectiveness; that there must be a prosthesis available for every Medicare Benefits Schedule item, provided at no additional cost to the patient; and that sponsors wishing to charge more than the assessed cost-effective benefit could do so and the patient would then pay the gap. The arrangements were constructed so that independent clinical advice was central in determining questions of clinical effectiveness.

We know that any debate about anything, particularly to do with medicine or science, is fraught with difficulty for ministers and for those of us in this place trying to pick our way through some of these complex bills, because there are a variety of viewpoints. You just have to read some of the literature on this subject to see the different opinions about the clinical effectiveness of some devices. The minister will have power to conditionally list prostheses. It has been argued that this power could be used as a tool to impose limitations on the clinician’s ability to choose the most appropriate listed prosthesis. Others have argued that without sufficient detail and safeguards governments will be relentlessly lobbied to include items on the list item which may not be cost effective. So we can immediately begin to grasp the complexities of administering such a program.

On 9 September 2009, Amy Corderoy wrote an article in which she said:

Identifying which Type 1 diabetes patients will benefit from public hospital-funded insulin pumps may be difficult, according to a clinical audit undertaken in Western Australia.

“Patient selection [for insulin pump use] is important, as insulin pumps are cost-effective only if they reduce levels of glycated haemoglobin (HbA1c) and the frequency of hypoglycaemia - although quality of life may also be an important benefit,” Dr Ken Thong and colleagues from Fremantle Hospital and the University of Western Australia wrote in the MJA.

The endocrinologists identified over 100 patients who had received both public hospital-funded insulin pumps and privately health insurance-funded pumps (32 public and 77 private) over an eight year period.

The public patients had had more hospital admissions than the private patients both before and after the commencement of insulin pump therapy (0.7 vs 0.3 admissions per year p=0.02).

After commencing pump therapy, HbA1c levels fell significantly in the private patients (8.7% vs 8.0% p<0.005) but not in the public patients (9.2% vs 8.9% p=0.17).

There was also no significant difference in diabetes-related admissions before and after commencement of pump therapy in either group.

“We need to think very carefully about which patients we should be offering pump therapy to,” co-author Professor Bu Yeap told Endocrinology Update.

However, he added that the study was too small to conclude that it was not cost-effective to treat patients with publically-funded insulin pumps.

“The public patients tended to have more difficult to control diabetes in the first place and that may be why we didn’t see a similar improvement in HbA1c,” he said.

“It’s a glass half empty half full kind of thing. It’s very pleasing that in the [private] group we did see a reduction in HbA1c… but it has made us think much more carefully about whether we should set up more formal criteria for pump usage”.

I draw that to the attention of the House firstly to illustrate the complexity of the differing views and some of the studies that have been done on this but also because I wanted to focus on insulin pumps in particular in my remarks on this bill, which basically stipulates that private health insurers must pay benefits for prostheses that are provided as part of an episode of hospital treatment or hospital substitute treatment and for which a Medicare benefit is payable for the associated professional service.

The Commonwealth prosthesis list contains all those products that fit the above mandatory criteria. The Minister for Health and Ageing determines what products are on the list, having regard to the mandatory criteria and also non-mandatory criteria. Currently, a product is either listed or it is not. This legislation will establish a conditional listing category on the list for products that are not appropriate for general use but are clinically effective in specific circumstances. In the second reading speech, the minister for health specifically pointed to insulin infusion pumps as an example of a product that should be conditionally listed. In that speech the minister said:

The amendments proposed in the bill would enable the device to be listed on a conditional basis, ensuring patients have access to life-saving treatments in a way that controls the additional costs to private health insurance.

All private health insurers make payments towards insulin pumps, as they are on the prosthesis list; however, there has always been some uncertainty about their long-term status on the prosthesis list because they are not surgically implanted, do not require hospital admission for initialisation and are not associated with a Medicare Benefits Schedule item. This uncertainty was recognised in the government’s review from which I just quoted. The review noted:

Under current arrangements insurers are not required to pay benefits for products provided in these circumstances, even though the items are included on the List.

Therefore, this legislation is aimed at resolving the uncertainty by creating a new sublist for devices such as insulin pumps that do not meet the mandatory criteria but should still be on the list in certain circumstances.

Where an individual has access to private health insurance, they are not then eligible to receive the means tested insulin pump subsidy, and this is one of the matters I would like to raise in addressing the issues around this bill. There are other challenges, as well, in relation to insulin pumps. The devices are constantly being improved, there is new technology, and there are already other challenges facing us with new insulin pumps incorporating continuous glucose monitoring devices. The cost of the transmitter components of these devices is reimbursed through ancillary health insurance by only some private health insurers. The sensor components are not covered, nor are they eligible for any government subsidy. The insulin pump program has also not been as effective as we would have liked it to have been. I am pleased to see that the Minister for Health and Ageing is currently reviewing that program; that is welcome.

I raise these issues around insulin pumps because, as I have said in this place before, back in 2000 we started the Parliamentary Diabetes Support Group. I would like to acknowledge the participation and incredible work of the member for Moore, who is currently in the chair today. He has been a tower of strength in that group and has been able to help draw greater attention to the issue of diabetes within the community. Many of my other colleagues have joined us in that group as well. There are Senator Guy Barnett, who is part of the executive, and my colleagues the member for Lyons and the member for Isaacs. All of the members who agreed to join that group participate in the many activities that from time to time take place.

I suppose that one of the most successful and moving of those activities co-sponsored by the Parliamentary Diabetes Support Group and the Juvenile Diabetes Research Foundation was the Kids in the House program, where 100 children from all over Australia were flown to Parliament House with their carers to talk about what it is like to be a kid with type 1, insulin dependent, diabetes. Their stories, quite frankly, were heart wrenching. I think I have rarely, if ever, attended a function in this place where I have seen some of my colleagues actually openly weeping. They were very moving stories indeed. Juvenile diabetes really does rob young people of many opportunities, and that is what these young people talked about: the limitations that were placed on their lives, often from soon after they were born and diagnosed with insulin dependent, or juvenile, diabetes.

These children also have a lifetime of high-level care to manage this disease. Every day, they have to pay attention to their insulin levels: to monitor them, to have multiple finger pricks to test the levels of insulin in their system and then, of course, to administer a dose of insulin where that insulin level falls too low. If their insulin levels fall too low, these young people can fall into a coma. I will talk more about that in just a moment, but it does have a dramatic impact. These young children who came to Parliament House on two occasions—and I think there is soon to be a third—had an opportunity to go around this parliament and talk one-on-one with their member of parliament and the senators for their state and to express to them the difficulties and the challenges they confront as insulin dependent diabetics and to plead with this parliament to consider directing funding to research. to find a cure for juvenile diabetes. The theme of the young people was ‘promise to remember me’. I do not think that anyone who spoke to the young people visiting here was not profoundly touched by that experience.

Type 1 diabetes is an autoimmune disease, which is something people sometimes get mixed up about. Young children have said to me, ‘We’ve often been teased at school that we’ve got diabetes because we eat the wrong things and we’re overweight, or we’re overweight because we don’t look after our health,’ so there is a lot of confusion in the community. Type 1 diabetes is an autoimmune disease affecting some 140,000 Australian children and adults. There are a lot of children affected by this, and we have to be concerned that we have one of the highest incidences of type 1 diabetes globally—in fact we are sixth in the world—and that rate is continuing to increase in Australia by three per cent per annum.

Ninety-five per cent of diabetes in children is type 1 diabetes. Type 1 sufferers experience more than 40 dangerous hypoglycaemic—that is, low blood sugar—episodes a year. As one mother said, ‘My biggest worry when I go into my son’s bedroom every morning is whether I can wake him up.’ The origin of setting up the Parliamentary Diabetes Support Group was a visit to my office by a couple and their very young boy in his early year of primary school who had type 1 diabetes and was experiencing great difficulty. His medical practitioners were experiencing great difficulty even in levelling out his insulin levels. His parents would have to wake him up several times during the night, test his insulin levels and administer medication as required. This was interfering with this young boy’s ability to do his schoolwork. Being woken two or three times during the night for testing and then medicating, he would go to school the next morning feeling pretty lousy, so his schoolwork was not going well.

This family, who were not wealthy people at all, scraped up the money to get him onto an insulin pump, which made a huge difference to their peace of mind and to his lifestyle. This young man went on to be dux of his school, and the family generally come to me once a year around Christmas time and he gives me an update. The difference has been really remarkable. What I want to do in this debate today is stress the importance of not just stating—as governments have done successively, which is good—that diabetes is a national health priority but then matching that rhetoric with the best possible medication and the best possible access to devices that will give children in particular a good quality of life and perhaps increase their lifespan. Young people with juvenile diabetes on average live fewer years than the rest of us do, even with the best of care, and they face a lifetime of really quite horrendous health complications. So we need to recognise that there are major lifestyle and quality-of-life issues around access to the best possible medicine and the best possible devices. When it comes to children, we should be generous in making sure that they have the best possible access.

Every hypoglycaemic episode causes physical and psychological harm. Hypoglycaemic episodes affect cognitive function and memory as well. These pumps are not for everyone, but for many young people they can be a very important part of the management regime. Twelve to 15 years after the onset of diabetes, devastating complications can set in, and I have mentioned those many times in this place. Diabetes is the leading cause of adult blindness, heart attack, stroke and lower limb amputation and is the most common cause of kidney failure, at 40 per cent. Fifty per cent of people with diabetes die of cardiovascular disease. So there are myriad complications around this disease, and it is particularly tough for children and their families knowing that they have to face such life-threatening illnesses along the way.

I also pay tribute to the work of the Juvenile Diabetes Research Foundation because it was with them that we pushed to get the consumables that go with the pumps. These are things that have to be changed every couple of days. They are the devices that allow the pumps to do their work. In addition to the $7,000 or $8,000 that the pumps cost, the parents of the young boy that I saw came to me and said: ‘We’re paying out $2,600 a year for these devices. Can you get them listed on the NDSS?’ That is why we started our group. We went to work and convinced the then Howard government to list these devices on the NDSS and assist parents. Some families have several children with diabetes, so it can become a huge imposition.

The insulin pumps are used to closely mimic the insulin delivery of a healthy pancreas for more predictable and tighter blood glucose control, and that is why these are so important. So, whatever we are doing in legislation—and with this legislation in particular—we need to be very mindful that we do not deny people the opportunity for improved long-term health outcomes by them not being able to access insulin pump therapy. I ask the minister to closely examine this legislation to iron out any of the glitches and also to look at the subsidy program that currently is not working as successfully as it should. I look forward to the outcome of that review and making sure that more low-income families can access insulin pump therapies for their children.