CATHERINE KING MP
SHADOW MINISTER FOR HEALTH
MEMBER FOR BALLARAT
E&OE TRANSCRIPT
DOORSTOP INTERVIEW
PARLIAMENT HOUSE
THURSDAY, 27 MAY 2015
SUBJECT/S: Inborn Errors of Metabolism (IEM); Budget 2015; Organ donation;
Community Pharmacy Agreement; Pharmaceutical Benefits Scheme; Same
Sex Marriage; Royal Commission into Institutionalised Child Sexual Abuse.
CATHERINE KING, SHADOW MINISTER FOR HEALTH: This morning I am joined
by organisations of patients who have Inborn Errors of Metabolism. These are
patients who are absolutely reliant on a special diet that has been subsidised
through a payment through the Department of Health from the Government for well
over ten years now.
Unfortunately on Budget night, what we saw was without any consultation, without
any real understanding in fact of the impact of the measure, this pathetic mean
spirited Government made a decision to abolish the subsidy that these families have
been receiving for that specialist food.
In talking to these families this morning, I’ve been hearing about the sort of work that
they have to do every single day in calculating out how you feed a young child. In
Kym’s circumstances, Kym is about to have a baby, having to juggle the tiny
amounts of protein, sometimes four to five grams your only allowance of protein
every day. Having to try to do that with very difficult circumstances and often having
to spend far more in excess of the government subsidy.
The Government needs to reverse this decision. It is a small Budget measure but it
is a small Budget measure that has been incredibly small-minded.
April, who is here with us as well, is a teenager. Of course, you can imagine in your
teenage years you want to be able to eat the same sorts of diets that some of your
friends are. Having a pizza, being able to have pasta every now and again, those
things that you do as your start to become independent. This Government, in cutting
a subsidy which is $250 a month, some $3,000 a year, is going to put significant
pressure on these families and the families of the patients.
I might now get Kym, who is going to have a talk with you about the circumstances
that she is in.
KYMBERLEY RIDDLE: I have PKU and I’m currently five months pregnant….
KING: How many grams of protein do you have to have each day?
RIDDLE: I’m on 8 grams of protein a day and I need to write down everything I eat
each day to make sure I don’t go over my limit. It’s very important that I stick to this
strict diet for the health of my baby otherwise my baby could develop disabilities. So,
this diet is very important, these products are so expensive. $10 for rice and pasta
and then delivery fees like $15. It’s just really expensive and the supplements and
the diet go together so we need both the low protein foods and the supplements for
the diet to work.
And it’s very important when I’m pregnant to make sure my levels are perfect so my
levels don’t rise and affect my baby.
JOURNALIST: Pregnant or not, what are the health consequences if you don’t stick
to that?
RIDDLE: My levels go up, and that affects my ability and it also affects my baby
KING: So, they can be neurological so in essence in the longer term they can cause
brain damage in patients. And Kym is doing an extraordinary job having this baby
and having to balance this, and to have the shock of having the subsidy withdrawn
certainly puts pressure on these families. It is unnecessary, it is such a small amount
of money and it is really a heartless decision that the Government should reverse.
APRIL STEPHENSON: I’m on 5 grams a day of protein so it’s really difficult for me
to find foods when I’m out to eat. So when I’m at home I need carbs because
although veggies and fruits are great, they’re not that filling and there’s potatoes
which have lots of protein. So the (modified low-protein) pasta which is a staple for
me. I have it every single day and every night. At least once a day and I need it
because it gives me energy and it gives me calories and carbs and I can’t get that
from just fruits and vegetables. Because that’s all I could eat if I did not stick to my
diet and eat these foods.
JOURNALIST: How much do these boxes of pasta cost?
STEPHENSON: This is $15 and it gives me two to three serves. And then the flour is
$20 plus shipping. And then there is this cheese I buy from a low protein company
and it is $28 and $40 shipping, so that’s $68 for grated cheese. It’s crazy.
JOURNALIST: The Prime Minister suggested yesterday this subsidy isn’t needed
anymore because there is a large variety of foods, gluten-free, dairy-free. Is that a
fair argument or does that not apply?
KING: No, not at all. And again, in talking to these families I think it might be a little
while since the Prime Minister has gone into a supermarket and looked at the
nutrition information panel on foods, even gluten-free, many of them still contain
protein, some of it still too high. Trying to get enough carbohydrates for these
families is really difficult. It is an incredible balancing act. Every single tiny piece of
food these children consume has to be weighed and measured.
I heard the Prime Minister yesterday say they can use cornflour. I’m not sure if
anyone’s cooked with cornflour or baked a cake. I suspect the Prime Minister might
want to try and do that. It is a really ridiculous suggestion frankly that you can
actually use what’s in the supermarket currently. It is clear from talking to these
families that is just is not a realistic option.
There are of course supplements that are on the PBS, but this is not what this
measure does. It basically takes a direct subsidy away from these families so they
can purchase specialised foods in order to stay well.
JOURNALIST: How common is this condition?
KING: There are about 900 families so I understand across the country who are
currently receiving the subsidy.
JOURNALIST: Kym and April, how much do you spend per month on your special
diets?
KYM: I wouldn’t even know. I get pasta which is $10, rice $10, bread $10 and that
would last a week. And then there is delivery fees as well, which is $15. And then if I
want to have something else like cheese that is $28, and $40 delivery fee just for
cheese as well because it is cold. And you don’t have much variety as well. But
these foods are what we need to have.
HELGA ROSENTHAL: There is about six to eight servings of food in this, and this
costs $15, plus the delivery fee. And if the children don’t get the right amount of
protein and carbohydrates they can become catabolic which means their bodies start
eating itself and then they end up in hospital. They can get brain damage and in
some cases they die. So it’s really important for our children to have access to these
kind of foods. You can’t get this kind of food in the supermarket.
Today my grandson is on ‘no protein’ at all because his blood levels are too high,
and I can’t buy ‘no protein’ food in the supermarket, so I have to rely on this kind of
food. So, it’s really important that we keep the subsidy, which is very small Australiawide. It’s less than $3 million a year for every sufferer.
JOURNALIST: Organ donor rates are so appallingly low, should families still have
the right to veto the wishes of their dead loved one?
KING: When we introduced the package of reforms which, until recently, had seen
the organ and tissue donation rates going up in this country, we did look very closely
at the issue around consent. And what we concluded was that it would be extremely
rare there would be a circumstance in this country where a clinician would operate
on a patient where the family were not consenting. In fact what the most important
thing to do in relation to organ and tissue donation was to work with families, get
more donors on the register, have family conversations so that there was informed
consent. Our understanding is that it is not the driving factor around increases in
organ and tissue donation rates. It is really the conversations. Now I am very
concerned to hear overnight that the Minister has unilaterally made a decision
around a review of the Organ and Tissue Donation Authority. That is a matter for her
but the fact that it has led to the chair of the advisory panel, David Koch resigning
overnight and speaking out against the Minister this morning it think is very
concerning and I certainly will be speaking to the Health Minister about those
concerns.
JOURNALIST: Kevin Rudd said this authority would make Australia a world leader
when it came to donations has it failed?
KING: The Organ and Tissue Donation Authority when we last left government was
seeing donation rates increasing and I think the latest figures unfortunately have
seen that those donation rates have started to decline again. What you don’t do is
cut $57 billion dollars out of public hospitals because that will mean that that puts
organ and tissue donation rates in jeopardy. What you don’t do is suddenly
announce that you are going to merge the Organ and Tissue Donation Authority with
the National Blood Authority and have your organisational structures bedded down,
having to spend hours and hours trying their work through an administrative program
rather than keeping their eye on the ball in terms of organ and tissue donation rate. I
think the reforms are important reforms. They are reforms that should continue if
there are improvements to be made, then they should be made, but I am concerned
about the way the Government has handled this overnight.
JOURNALIST: But you’re not even, I mean the Government isn’t even half way to
the target and when you left office it wasn’t much different. I think it was 16 per
million as opposed to 35 which is the target. I mean how long is it going to take to get
there and is that good enough?
KING: When Labor was in government the rates were going up and up and up. We
were starting from a very low base. It was a very important reform and I will stand by
those reforms. I think the Government has some questions to answer as to why,
since they have taken office, since they have been in charge of this program the
rates have been going down.
JOURNALIST: Do you agree with David Koch’s comments that this latest review is
the result of the Assistant Health Minister bowing down to lobbyists?
KING: I think that is really a matter for the Minister to answer and I will leave that to
her. This has always been a very difficult policy reform and we always knew it was
going to take time. I think when you have got the chair of your own advisory panel,
someone who has been very respected for their advocacy and work in this field
making those comments then she should certainly listen to them.
JOURNALIST: Is there any harm for having a review?
KING: Look we undertook a review when I was Parliamentary Secretary for Health
and of course not. Of course not. But I think the way in which this has been handled
obviously there are some questions to be asked.
JOURNALIST: Is it a concern that in 37 per cent of cases family members are
vetoing the wishes of their deceased loved one? And should there be a legal
mechanism to protect someone’s wishes?
KING: The most important thing is that people actually have the conversation and
you actually have discussion within your family. Including with other family members
who you may not have been in touch with for a while to actually make sure they
know your wishes. That is what is going to make sure that when you are in, and
these are often very tragic circumstances, when you are in these tragic
circumstances that a family member’s wishes will be honoured. It is those family
conversations that the DonateLife team right the way across the country have been
working to increase and I think that is a really important focus for the reforms.
JOURNLIAST: Just on the Pharmacy Agreements that have been signed off today.
While they are complex documents we are told that medicines will become cheaper
for consumers, surely you must agree that is a good thing?
KING: Well we will examine the legislation which was just introduced into the
Parliament this morning that represents the Government’s negotiations with the
Pharmacy Guild on the 6th Pharmacy Agreement as well as further negotiations they
have had with pharmaceutical companies both in the generics and non-generics
areas. What I would say is that we will certainly be looking at the detail of the
legislation to ensure that patients are getting the best deal. And of course we would
welcome any reduction in the price of medicines for consumers. But what is
disappointing is that at the same time we still have on the table with the Budget of
just two weeks ago a proposal to increase the co-payment for the Pharmaceutical
Benefits Scheme and to make it harder and harder for patients to reach the safety
net. The Government cannot on the one hand be saying it is introducing a package
of measures to drive down the cost of medicines, a good thing and a good policy
intention, while it still continues to have that measure on the table. It needs to take it
off the table.
JOURNALIST: Ms King, you like many members of your party, have been a
supporter of a binding vote on same-sex marriage, are you disappointed that Tanya
Plibersek has changed her position to support a conscience vote?
KING: I am delighted that Bill Shorten and Tanya are bringing back to this
Parliament a private members bill so that this Parliament can vote on same-sex
marriage. I think that it is important that the Liberal National Party now have a
conscience vote and we call on Tony Abbott to allow his members to do so. I think
the time has come for marriage equality in this country. The Parliament has an
opportunity with Bill and Tanya bringing to this Parliament to have a vote. Let’s hope
that there is a conscience vote allowed on the other side and that what we actually
then see is its passage both through the House and the Senate and we have
marriage equality in Australia.
JOURNALIST: But do you support a conscience vote, have you changed your
position as well?
KING: Certainly the conscience vote has been something that the Labor Party has
allowed and that will be the context in which we have the vote if it is brought forward
on the private members bill. National Conference will have a debate further in July
about the issue of a conscience vote but right at the moment I am delighted that we
have a private members’ bill being brought forward by Bill and Tanya so that we can
properly debate this issue.
JOURNALIST: Just on the pharmacy thing, can I just ask does Labor support the
option of a $1 dollar discount?
KING: Again we are going to examine the detail. We only received a briefing late last
night, and we received the legislation obviously with it being tabled in the Parliament.
We will have a good look at that. Of course we will be looking at it with the eye of
what is it going to do in terms of consumers and will it be providing opportunities for
consumers for cheaper medicines. But again I say you can’t on the one hand have a
package of measures designed to put in place cheaper medicines at the same time
as having a piece of legislation, which has already passed the House sitting waiting
to be introduced to the Senate which increases the co-payment for general and
concessional patients and makes the safety net harder for people to reach when it
comes to the PBS. The Government needs to take that off the table.
JOURNALIST: Is it problematic that it was agreed to in May so close to when the
agreement expires?
KING: Well obviously the timing is entirely a matter for the Government. They
obviously did enter into negotiations quite late which has meant that there is some
pressure on the parliament to consider these matters but we are determined to take
our time to give proper consideration to the Bills which we just saw this morning.
JOURNALIST: If the Governments changes lead to greater use of generics and biosimulars is that a good outcome?
KING: Yes of course, of course that is a good thing. And when we were in
government we were pursuing much of that reform. As well when we were in
government we pursued simplified price disclosure which I see the Minister has well
and truly backed in in this package of Bills. That simplified price disclosure in fact
was delivering over 10 years some $20 billion worth of savings to the PBS which is
allowing the Government now to list medicines which wasn’t an opportunity we had
when we were in Government. It was legislation that the Government is now
enjoying the savings from to be able to list drugs on the PBS.
JOURNALIST: Ms King the Royal Commission into Child Abuse is currently in your
electorate, there is some very disturbing evidence coming out. Is there enough
support for the victims?
KING: Thank you for bringing that up. Of course the Royal Commission is in Ballarat
at the moment. It is in its second week of hearings and again I want to send my
support to the many brave men and women who are coming forward with their
stories. I think the money that was made available for support services has been
important. I think certainly the community in my home town of Ballarat is learning
something we wish we never had to learn about our home town or any town in this
country and our hearts always go out to the people who are making this testimony
and I am sure as the Commission unfolds and as its recommendations unfold there
will be a lot more to say about that.
JOURNALIST: On the pharmaceuticals, have you got any concerns on the impact
these changes might have on the patented medicines entry into Australia?
KING: I think it is fair to say and my colleague Kim Carr who is the shadow
spokesman for Industry, I know has been meeting with Medicines Australia about
innovative drugs and the impact on those. Again we have only just seen the Bills this
morning we will give them due consideration but certainly one of the issues we will
want to have a look at is the impact on the capacity of Australia to have new and
innovative medicine listed quickly in Australia and whether there are any potential
unintended consequences of the legislation. But we will look at that with the eye that
obviously as the shadow spokesperson I’m pretty keen to see that we get a good
deal for patients in the medicines and the price that we pay for medicines and what
consumers pay for medicines.
ENDS