Dr Andrew Pesce: Medicareless petition will get the government to react

Dr Andrew Pesce, former head of the Australian Medical Association (AMA) and Jillian Spears, a surrogacy patient, were interviewed by 4BC radio in Brisbane on Monday, 15th April. In the interview, Dr. Pesce agreed that the Medicareless petition to change Medicare laws would get the government to react. The aim of the petition it to provide equal treatment under the law for all IVF patients, including surrogacy.

“The AMA’s position has always been where a procedure is lawful, and it is clinically necessary, the AMA believes that the whole principle of Medicare is to make sure that clinically necessary and lawful services are made available to people that need them. So this would certainly fall into that category,” he said.

The AMA represents the interests of more than 27,000 medical practitioners from all specialties and locations across Australia.

andrew-pesce

Listen the entire interview here

Partial transcript below:
Why no rebate?
“I think it’s just a historical fact, there’s probably been a slow evolution of what technology has been available for people and surrogacy only came into clinical use probably some time after the rebates were set. Governments tend to have a policy that until they make a specific decision that until they are refundable through Medicare then they aren’t. That’s why a lot of new treatments often are outside Medicare rebates. And leaves us in what is quite an anomolous situation.

Wouldn’t surrogacy give some women a better option than IVF?

There is no doubt that for some women their only option is surrogacy……Now I have to say I wasn’t available to listen to your discussion with Jillian so I have absolutely no background to her medical illness and story.

Well basically due to illness, her, and her other friends, well, she lost her womb.

Well obviously, she can’t carry a baby so there is no option for her other than there being a surrogate to carry the embryo on her behalf if she was able to donate eggs to be fertilized with her partner’s semen. So for her it is the only option.

For various other people, normally most couples would try very, very hard and exhaust all possibilities of carrying their own babies themselves, and only consider surrogacy if it seems to be the only option left available to them.

It seems really expensive doesn’t it. I mean, the average cost of a legal surrogacy is around $60,000.

In which country are you talking?

Obviously here in Australia.

So, I am not involved in the fertility industry. I guess this is in addition to the normal IVF costs, I guess it is because you need to pay for the time and pain and other things associated with the other things of having another person having a baby on your behalf. Look, I am not sure how those costs have evolved, but it certainly does sound expensive.

As the former AMA president, would you see with this petition, that there’s potential that the government may react at last and that the government may do something about this and provide some kind of rebate?

Oh, yes, I think so. The AMA’s position has always been where a procedure is lawful, and it is clinically necessary, the AMA believes that the whole principle of Medicare is to make sure that clinically necessary and lawful services are made available to people that need them. So this would certainly fall into that category.

There are some other times when surrogacy might be requested where there isn’t a medical necessity for it. Let’s just say for argument’s sake there was a woman who was too busy in her career to take the time off to become pregnant and wanted someone else to carry her baby. I think some people might say there are some examples where we could think that we don’t that taxpayer dollars are necessarily best invested. But I think that most people would agree when it’s the only option available for a couple that are desperate to have children, I think most people would be comfortable with Medicare covering it.

Trewy’s Surrogacy Story

In response to our media story on Channel 9 News Tuesday, 9th April, we received words of encouragement from Trewy and his wife, an ordinary couple facing the difficulty of a surrogacy without Medicare. Trewy decided to share his story for us below.

“After, marrying my wife Rach in October 2010. We discovered Rach has fertility problems.

Fertility problems in Australia are not rare with 1 in 8 couples needing treatment. However, Rach has a more rare and costly medical condition which prevents her body from producing eggs. No eggs, is a not a big problem. If you have a family friend you could be lucky. If you wait for donor eggs in Australia, it will take about 5 to 6 years according to the doctors.

[Moderator note – http://www.eggdonationaustralia.com.au is an excellent not for profit site dedicated to egg donation in Australia and recipients can find donors within a few months, so for those needing an egg donor, don’t lose hope and don’t believe the doctors!]

Rach and I have been lucky to find an egg donor and harvest three eggs at a cost of $12500. This was a straight out-of-pocket expense and not covered by our private health or anything. It’s worth noting that in Australia, no money is allowed to be paid to an egg donor.

I thought having three 3day old embryos (3 potential children), our hurdles and dramas would be over. Sadly, it was just the beginning. After months of drugs and money being used to try and get Rach ready to have an embryo transferred,  we have only managed to kill one of our potential children, kill my equity in our beautiful home, beat up our credit card and become ever so saddened by our grim outcome.

See the IVF train is a slow and expensive train. Suddenly, your life goes from a newly married couple to counting down days till the next cycle of drugs, and loads and loads of tests with more and more delays.

Financial stress plus emotional stress can start to beat you up. I would be lying if I said “I have never considered divorce’’. I would even give up my house, even body swap with a terminally ill person, if only I could have a son who could catch a ball with me. A son to share his first beer. Sadly, if I bear no children, then there will be no grandchildren either. All I can look forward to is a lonely retirement.

This is where you can help. IVF is a kind of high risk investment. Except IVF investment is a rule breaker as it is investment with emotion. I don’t want to be father of the year, just a father.

This year we are switching from IVF to surrogacy. Sadly, life makes Rach a poor microwave. Rach has found a surrogate. A person, who will not receive money for their priceless gift, to us. Sadly, the costs of surrogacy are about $60000 to $80000. This is lawyer costs to create the legal surrogacy agreement (2 lawyers $15000 each). The costs of counseling, insurance to be able to obtain a parentage order under the surrogacy agreement. Then all the medical costs that are not covered by Medicare or our useless private health which follows the laws set out by Medicare.

Morally, I feel obliged to continue with this course of action, because those two embryos are technically alive and just frozen. Even after this process we may not have a child. I’m sure the cost would double if we are lucky to use both embryos.

I have begged the banks for a low interest loan, and even contacted my superannuation to help cover the $60000 for surrogacy. I have not been very successful. So, goodbye dream home and boat. Sadly, the dream of having a family is killing my dream of financial security. However, you never know…..I could win lotto.

How can two tax paying government employees with private health cover and a small mortgage be forgotten? We’ve never received a government handout, and we’ve paid all of our HECs debts. We have been described by our friends as the ‘unlucky couple in the lucky country’.

How can you help? I have no idea. Bring attention to this situation, government assistance, I remember former Prime Minister Kevin Rudd, giving a speech containing the word family. Family first and family this. Well, after I’ve written letters to Labor, Liberal governments both state and Federal, I’m sad to say that no replies have been received.

If I do make it through this nightmare. I really wanted to take the egg donor, surrogate and wife –  hopefully with a child or children-  on a holiday. To thank them for their commitment to my family. However, with the cost of things coming, I may have to wait a while. A long while. Perhaps a lifetime.

Thank you for taking the time to read my story.

Trewy”

Of course, we know how you can help people like Trewy. Sign our petition for change, and send an email to Tanya Plibersek and other members for parliament. Choose from any of our ready- made email formats from the Resources tab.

Together, we can make this change, and help ordinary working couples become families. As you know we are starting to receive replies and are receiving media attention, so as a group we are making an impact – where before we were solo travelers, losing hope on our own voyages. Too many have been silent for too long!

Response from Department of Health & Ageing

Today we received a promising response from the Department of Health and Ageing.

Firstly they “commended” us for the work we are doing to create awareness about the Medicare laws as they relate to surrogacy.

Secondly they reiterated that they are committed to medically necessary services to the public and are therefore actively considering the issues raised in the surrogacy paper. They have advised that I am welcome to contact them to see how this work is progressing and provided the contact Ms Mary Warner, Director of Medical Services.

I am so proud of this response and hope that they are sincere in their response.

Please continue the great work you are all doing in creating awareness about this issue, great joint effort.

Letter from Dept Health & Aging

Jillian’s long two weeks ahead

Wow it’s here already. Today I start my injections for my first IVF cycle.

I’m not really sure how I am feeling – maybe anxious, nervous and even a bit pressured. Not pressured to go through with the cycle –  I would do it ten times if I could!  Pressured because I know I must succeed with this precious cycle. Without Medicare benefits this may well be my only chance.
Many women going through their first cycle are aware of the slim success rate and already start planning a second attempt. For me (and many of you following our blog) a second cycle would be what dreams are made of! Its like winning the lottery!

Unfortunately, we just can’t afford it as is.
In fact, when looking at the statistics, and my chance for success, I almost went straight from thinking about doing my own IVF cycle with my own genetic (but potentially not young enough) eggs, to the “safer financial idea” of a donor IVF cycle, where a younger woman would donate her eggs so we could have a family. I was justifying this idea in my head as “better value for money”.

What was I thinking?

How could I even start thinking that way? My desperation for a child was turning into a financial decision!!! It was only when my mother in law said to me “you don’t want to be left wondering ‘what if…’ ” and she is right. What if? What if my eggs work? I have to find out.
This should be the most exciting two weeks of my life. Many babies are created in a night a passion with those we love the most. But for us the process is far more complicated. For some of us the medication tends to make us somewhat “moody” and for others it’s a breeze. The stress causes arguments in our lives often with our partners who tread on egg shells (pun intended) as they support us over the two weeks it takes to do the stimulation to collect the eggs. Never-the-less, I know our love will withstand these pressures. We made it this far –  there’s no turning back!!!
I have my fingers crossed! Two weeks seems forever, but its going to be positive thinking all the way!!!
To all the amazing people following our blog and supporting our fight –  I thank you. Your support is wonderful.

Holly’s Story

Holly & Ash

Holly & Ash

At age 14 i was diagnosed with a severe mullerian anomaly with a unicornuate uterus and severe endometriosis. The endometriosis drowned my fallopian tubes and one ovary. What i was left with was half a uterus, one ovary that was not connected, one kidney and no cervix. At 14 years old this was devastating. At 18 I met Ash (23), he was beautifiul, kind and supportive. Like any normal couple our age we had a normal lifestyle, normal paying jobs and a house loan but there was just one thing missing, a child. 6 operations later the news I received was heart breaking ” I’m so sorry Holly, there is nothing more we can do” Surrogacy was our only option. I spent months resaeaching how to go about it and what to do. My gorgeous mum was the first person to offer, it was like a dream come true. Sadly Mum was diagnosed with hormone related cancer and was no longer able to carry our baby. Six months later a wonderful woman offered to carry my baby. The words estatic and overjoyed don’t even come close to what we were feeling! However those feeling didn’t last long when we were told that medicare wouldn’t cover us for IVF. We are looking at around $15,000 – $20,000. As a normal young couple this just seemed out of reach. Medicare cover everyone else for IVF but will not cover us. Not only do we have $15-20,000 for IVF but we also have another $20,000 + for other surrogacy involved costs. It is my understanding that when Medicare made this decision surrogacy was illegal, now that surrogace IS legal here in Australia the outdated laws need to change. So over all i feel discriminated against and think this is greatly unfair. Please change the law so that us and couples like us can be blessed with a family

One for the Country

We may not represent a large % of the population, but we represent the very segment of the population that Medicare should be most likely to assist.

We pay our Medicare Levies. We work, we pay taxes. We long to fulfill the ‘Great Australian Family Dream’ as outlined in 2004 by then treasurer Peter Costello who famously encouraged parents to have three children: “one for the husband, one for the wife and one for the country”. The dream of a family it seems, is one that is entrenched in every aspect of life.

We are everyday women, with everyday dreams. The idea of the nuclear family is the ‘norm’ in Australia. So some of us long to have our nuclear family. We may have one child, but we’d like to provide our child with a sibling. Yet, we have been robbed of fulfilling our dreams by medical circumstances.

Others of us here on this page don’t have any children at all. The yearning for a child is a strong and primal desire – and it’s not one that can be dismissed lightly.The quote ‘Never give up on something you think about every day’ is one that comes to mind.

Whatever our situation, there is one thing we all have in common – surrogacy is the only means by which we can have children. So why should we be forgotten by Medicare?

There will never be a large % of the population that access surrogacy. So the money we are talking about in terms of Medicare rebates would not become a major financial burden on the system any more than the current IVF rebates are. It just doesn’t make sense on any level that women who are at a medical disadvantage are given less support from the Medicare system than their more fertile sisters.

Surrogacy relies on IVF to operate. So not giving Medicare rebates for IVF on surrogacy  – to the group of women that absolutely and unequivocally need it – seems to go against the grain of what Medicare is set up to do. That is – to make healthcare equitable and accessible to all.

This week, I’ve heard too many sad conversations from our group of women, who are sinking their life savings into one single IVF cycle in the hope it works. The sadness knowing that if this rarified IVF cycle doesn’t work and their surrogate doesn’t get pregnant the curtains fall down on the stage of family dreams.

Given the opportunity to make a few attempts this need not be so. IVF is not an exact science, the hands of creation are still meticulous and exacting. It’s quite normal for a fertility specialist to say that the first attempt is quite literally ‘the test’ to see how you perform on the drugs. The subsequent cycle will be tweaked, refined. Like any good experiment.

When each cycle costs 18,000 or thereabouts, it’s a very bitter pill to swallow. Large numbers sound so abstract, but no matter your current wage you know how hard it is to save that money, only to find you can but afford one cycle. The test. The ultimate test of your finances, and also your ability to handle stress.

If we could change Costello’s mantra to 3 IVF cycles, I’d be happy. One for the father, one for the mother, and one for the Country.

General IVF Costs vs Surrogacy IVF Costs

Where ART is required to create embryos, provided a surrogate is not used, Medicare financially assists families by providing rebates. This is regardless as to whether the couples own sperm and eggs are used, they use donor sperm and eggs or a combination of both. Provided a surrogate is not used to carry the embryo Medicare will provide a rebate. These rebates are paid in accordance with the Medicare Benefits Schedule (MBS) and are not means tested.

Below is a table showing the average out of pocket expenses, couples can expect to pay when they do not use a surrogate:

IVF Australia, IVF Treatment Costs, http://ivf.com.au/ivf-fees/ivf-costs (February 2013)

IVF Australia, IVF Treatment Costs, http://ivf.com.au/ivf-fees/ivf-costs (February 2013)

Medicare does not provide a rebate for hospital related services, such as egg collection and embryo transfer. However Medicare may provide a rebate for the anaesthetist and those with private health may be eligible for a rebate from their fund. Out of pocket expenses for hospital related services range from $1,000 to $2,400 depending on whether the couple has private health cover.

With the assistance of Medicare, couples can expect to pay a total of $3500 to $5000 per full cycle.

There is no limit to how many cycles a couple may undertake during a year. In fact, the more cycles a couple does each year, the more Medicare will pay. When couples reach their annual threshold, the Extended Medicare Safety Net (EMSN) provides an additional rebate. Given it is usually necessary for a woman to have 3-5 IVF cycles before a successful pregnancy occurs , this can result in Medicare contributing $7,500 to $13,500.

Where a surrogate is used, Medicare does not provide any rebate for the IVF cycle. This is regardless of whether the couple use their own eggs and sperm to create the embryos or where donor eggs and sperm are used. Couples using a surrogate to carry their embryo can expect to pay between $16,000 – $18,000 for a single IVF cycle. In addition to these expenses couples using surrogates have legal costs, counselling costs and the usual pregnancy costs. Couples can expect to spend up to $60,000, provided their surrogate gets pregnant within the first or subsequent IVF cycle.

Why is it ok for the Government to help women with fertility issues but who can still carry their babies but not help women who cannot carry their own babies? There is no extra costs or extra procedures involved when a surrogate is used. The IVF procedure is exactly the same, except the embryo goes into another woman not the same woman.

For me personally I have never used IVF. I had no fertility issues. I had cancer, hysterectomy thats it. Can no longer carry my baby. I have just completed my first round of IVF. So far it has cost me almost $17,000. I only got 2 embryos. One embryo is currently, hopefully, growing in my surrogate. The other embryo is on ice. So I only got 2 shots. We cannot afford another $17,000. This is it for us.

If I had my own uterus. So far I would be out of pocket about $4000. The pressure would not be as great for one of these two embryos to become a baby, because we could have another go. We could afford another $4000. In fact 3 rounds of IVF with Medicare rebates would be less than what I have paid so far for 1 round.

Just seems so unfair to me. Why should I be treated differently to so many of my friends who have done IVF. Why should I not get a shot of having the family I always dreamed of?

These laws need to change. Equal access to Medicare Rebates to all those doing IVF!