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

I move:

That this House:

(1) condemns the Government's decision to cut, without any warning and consultation, all funding from the Inborn Error of Metabolism (IEM) Programme that provides for families and carers with children who suffer from Phenylketonuria (PKU) ;

(2) acknowledges that sufferers of PKU require a vital expensive medically prescribed diet, supplemented by the funding, to avoid brain damage, seizures, liver failure, coma and in some cases death; and

(3) calls on the Government to reinstate the funding to the IEM program.

There is no action that more graphically demonstrates the Abbott government's disregard for battling Australians than its decision to cut the grant to those people who are living with inborn error metabolism, or IEM, disorder. There is no action that more graphically shows how much contempt they have for Australian people.

This grant was cut without consultation and without research into the impact it would have on those people who relied on the grant. It shows the general approach to health of the Abbott government. It was a quiet cut; it was sneaked in. There was no consultation, no consultation with anyone. The first people knew about it was when they trolled through the budget and found it had gone.

Living with this disorder can be very expensive. People who have IEM have a very expensive prescribed diet. Many families can afford this diet through the funding provided to them through the grant. This disorder is an inability for the body to process proteins—that is in a very simplistic form. Without the right kind of diet, people living with IEM can have brain damage, seizures, liver failure, coma and, in some cases, death. It is a vitally important grant that has been given to families in the past and provides $256.75 to the 904 people who have the disease. I have never seen anything quite so bloody-minded as this act.

The Prime Minister showed a lack of understanding when he said in parliament that there is more access to regular foods that will deal with the diet of people who have protein conditions. He also said that there is more medication available. That just shows he does not get it, he does not understand. This is a life-threatening disease and the people who have it really rely on the grant money to purchase the right kinds of food. I thought I would share with the House a letter from the constituent. In it she says:

I am godmother to a gorgeous, vibrant, intelligent 4 year old girl, Violet, who loves My Little Pony video games and dancing. She also happens to suffer from the rare genetic disorder … PKU.

She goes on talk about how the liver does not produce amino acids and says how reliant the family is on the grant. The constraints of the diet, she points out, require speciality foods. She has given me an example of the types of foods required: Fate flour, $7.50 for 500 grams used to make bread and pizza, Loprofin rice $10 for 500 grams, Loprofin pasta $10 for 500 grams and Loprofin mixture used as a flour for cooking $7 per 500 grams—that is, really expensive when compared with standard foods.

This is a very bloody-minded act. This act was taken without consultation. I implore the government to reverse this act because it is having an impact on a small group of people, people who relied on the grant to sustain a suitable diet. If the Prime Minister has a heart, he should open his heart and reinstate that grant. He should not go through with his budget bloody-mindedness.

Sarah Henderson (Corangamite, Liberal Party) Share this | Link to this | Hansard source

Does the member have a seconder to the motion?

Ms Catherine King (Ballarat, Australian Labor Party, Shadow Minister for Health) Share this | Link to this | Hansard source

I second the motion and reserve my right to speak.

Andrew Southcott (Boothby, Liberal Party) Share this | Link to this | Hansard source

I thank the member for Shortland for bringing the issue of inborn errors of metabolism to the House's attention and would like to respond to this private members motion. Firstly, to explain what inborn errors of metabolism are, phenylketonuria would be one of the best known ones. It is picked up through the newborn screening test and involves an enzyme deficiency, which means that people cannot metabolise amino acids, the building blocks of proteins, but a number of others fall into this category. This means that from the time they are born, they need a very specific diet, often a low-protein diet.

To explain a little bit about the government's rationale, the government has put onto the PBS a number of medications, costing about $19½ million a year, to assist with conditions, including amino acid formulas, vitamins and other supplements. The vast majority of low-protein foods are available from supermarkets, and there is also a very limited range of specialist low-protein foods which can be ordered directly from manufacturers. The specialist manufacturers supply products such as baking mixes, rice, biscuits and some dairy replacements. Most fruits and vegetables and some ready-made pasta sauces are already low in protein. There are some very good handbooks which are put out by the Australasian Society for Inborn Errors of Metabolism. They provide extensive advice and recommendations regarding regular supermarket items that are suitable for a low-protein diet. Some of these items are things like rice milk, cornflour, some gluten-free foods and Asian food items as well.

The minister has said that foods for people managing protein and metabolic disorder are now more readily available and cheaper than when the program began, and that a number of medicines have been added to the Pharmaceutical Benefits Scheme. Having said that, I note that the motion is highly critical of the lack of warning and the lack of consultation that the minister undertook. My experience of the minister, since she has been the Minister for Health, is that she does consult widely and consultation is ongoing. That outlines the points behind the government's decision here, but the minister is always ready to listen to other points of view. I have found her very open in that way. As at March this year there were 985 people receiving the subsidy. The government's rationale behind its decision is that we have put a number of amino acids and supplements onto the PBS, the foods necessary are readily available at normal supermarkets as well, and there are very good dietary guidelines available.

Ms Catherine King (Ballarat, Australian Labor Party, Shadow Minister for Health) Share this | Link to this | Hansard source

I acknowledge the contribution of the member for Boothby—I acknowledge the hard task he has been given, very much at the last minute, because there were no government speakers listed on this motion on Inborn Error of Metabolism Program funding. I commend him for at least having a go. No decision highlights just how cruel and frankly pathetic this government is when it comes to health cuts as much as this decision—a decision literally made overnight with no consultation and no warning to cut a vital subsidy to some 985 families across the country whose children are suffering from a rare condition known as inborn error of metabolism. Managing this conditions requires a lifelong commitment to a rigid diet of carefully weighed synthetic, low-protein formulas and foods that are often very expensive to buy—pasta and rice at $10 a packet, and a block of cheese, after shipping, can cost $68.

In 2001 the Howard government began paying a small monthly grant to help offset the extraordinary costs these families were bearing from just feeding their children. This was by no means a budget breaker—today it amounts to just over $250 a month, or $3,000 a year, for a total cost to the health budget of $3 million a year; $12 million over the course of the forward estimates. Without any warning or consultation, with no discussion, families across Australia received a letter from the Department of Health to say they were losing $3,000. There are some families who have two or more children who suffer from this disorder. It just shows how embarrassed the government is that it has not had speakers on the list, and the member for Boothby was obviously asked by either the minister's office or the whip's office to speak on this issue—and good on him for having a go. Faced with a choice between defending the decision or saying nothing, that is what they have done—said nothing. No wonder. I have no doubt that members opposite have been made well aware of the anger, betrayal and distress that this decision has caused hundreds of families, and the emails and letters will be flooding into their offices the same as they are into mine. From one GP I received these comments:

As a clinician in the public health system I understand the need to consider where resources are directed. However, I am angered by decisions such as this one that seem to defy any sound reasoning. I feel that this decision could only have been arrived at by people with no understanding of the seriousness of the biology and subsequent social/economic consequences of this disease and its treatments.

A constituent of mine, Heidi, writes:

I can only consume 10g of protein a day as set by my dietitian. As a result, I cannot eat most dairy, nuts, legumes, meat, fish and grains. My diet consists of fruits and vegetables that are low in phenylalanine and specially formulated low protein products.

As a teacher's aide on a fairly low income, I feel very anxious at the release of this budget measure as I am certain that I will not be able to afford the low protein products …

I know from letters and emails forwarded to me that Heidi is far from alone in her distress. This was brought home to me in a meeting that I held last week with associations representing many of these families. I met with Kymberley, who is having the extraordinary job of managing to weigh every single ingredient that she consumes, as she is pregnant, in order to make sure that the child she is carrying does not develop a disability. What an incredible thing to suddenly get a letter from the department saying, 'Guess what, the money you rely on to feed yourself and to grow this baby is now being removed.'

The Prime Minister's response that you can just somehow use rice milk or cornflour is pathetic. I hope the Prime Minister never goes on Master Chef. I do not know if he has ever tried to cook with cornflour, but it is not a substitute for these low protein flours. The fact is that these foods cannot just be bought in the supermarket aisles. They have to be ordered from specialist food suppliers. I quote again from a letter:

I really believe Mr Abbott is just misinformed. I am hoping once he realises this he can reverse this decision. Products are not more widely available and we only have 3 suppliers where we can buy the low or no protein products which are expensive and have delivery fees.

Rice milk and cornflour are not going to help us. He needs these low or no protein products, without these I simply cannot feed my son. He won't develop and grow normally.

I wonder how the Treasurer can reconcile this pathetic small-minded measure with the miniscule savings it will bring to the budget bottom line.

Once again, I call on the Abbott government to reverse this decision. This is a small amount of money within the context of the entire health portfolio and the entire budget. It is a pathetic decision and, frankly, one which they are rightly being condemned for. I hope they consider the representations of many members and reverse it. (Time expired)

Laurie Ferguson (Werriwa, Australian Labor Party) Share this | Link to this | Hansard source

I certainly concede the member for Boothby's claim that the current minister has shown a greater inclination to consultation than her predecessor and has certainly tackled a major debacle. However, in this matter she has not been consultative. I understand there have been no discussions with the Australasian Society for Inborn Errors of Metabolism, ASIEM, with the Metabolic Dietary Disorders Association or with the PKU in New South Wales. These are the lead organisations and they heard nothing about this decision in advance of it being made.

I come to this issue with a degree of personal involvement. My office manager Linda Perrett, her son Kaeland and husband, Jamie, have endured years of a very traumatic lifestyle through Kaeland's suffering from classic MSUD, or maple syrup urine disease. Kaeland is now 18 years old and can only take five grams of protein per day. This means that special foods have to be used every day, despite the claims of expertise by the Prime Minister. This is the concrete reality the family faces. When Kaeland is unwell, his symptoms can range from a head cold, viral infection to broken bones. He then needs to go onto a sick regimen, which is no protein—that is the regimen—but he still needs to consume 3,000 calories a day. It is impossible to achieve that without using special low protein foods, which the grant is aimed at financing. Kaeland is an example of what people suffer in the real world—not the quick, from-the-hip responses in question time. In the real world he has been hospitalised approximately 20 times during his life, including five trips to intensive care. Obviously, the situation is that if the family cannot afford special foods he will have even more admissions. His brain will become more and more damaged. It is also possible that he will go into a coma and die.

One has to question not only the factual material put forward by the Prime Minister but the economic realities for this country if more and more people are hospitalised, go into comas and have brain damage. What is the eventual weighing of the cost in regard to this decision? It is not as though hundreds of millions of dollars are involved. We are talking about 980-odd people. The figures have been given to the parliament, and it is a very mean-minded decision that has been made.

It might be that more foods are available in supermarkets, but they are not low enough in protein for the daily consumption of these people. They need to be used in conjunction with special foods, not as a replacement for them. In the case of my electoral manager, the family needs to spend $300 to $400 per month on special foods. That is, as I say, the concrete reality out there. These materials are only available from three suppliers. A premade loaf of bread from one of the suppliers is $10 and a box of cereal is $14.95. A member of an organisation that Linda is in has paid $28 for grated cheese and $20 for sliced cheese plus $40 delivery in recent days. These foods are not subsidised by the PBS, as they are special medical foods, not prescription products.

In conclusion, we have a group of people who have decided to battle on in support of their children. I have seen the number of absences Linda has had occasioned through this issue in her family. I have seen the impact on the child's education and the amount of time she has had to put into attending schools, arranging school transfer and moving home to go to a more suitable smaller school in a more rural setting than where she was previously. This family has made a decision to help this child in life and, quite frankly, even with this subsidy, it is a very strong financial cost to the family.

I believe that strong consideration should be given to reversing this decision. I would hope it was based on misinformation to the Prime Minister rather than deliberate misleading of the parliament. Quite clearly, last week's supposed facts—about how things had allegedly been totally replaced by these alternative products in recent days and therefore we do not need to worry about it any longer, and how all the people enduring it and all the families directly affected are wrong and do not know what they are talking about—are erroneous, and this decision should be reversed very urgently.

Debate adjourned.