Small Win – Medicare Rebates for ICSI

When I started working on this campaign I did quite a lot of research on the Medicare Rebates relating to IVF and surrogacy. During my research I noted that the Health Insurance (General Medical Services Table) Regulations 2011 excluded Medicare rebates for item numbers 13200-13221. In the Medicare Benefits Schedule these item numbers related to various IVF procedures.

What I also noticed that ICSI (the process of inserting the sperm directly into the egg) was item number 13251. As you can see not one of the item numbers excluded from the Medicare rebates. So I asked my fertility clinic if I could receive a receipt so I could claim my rebate. They denied me.

So I rang and wrote to Medicare asking for assistance. They initially advised that all IVF treatments used for surrogacy were excluded from the rebate. I pointed out to them that this is not what the law says. So they referred my concerns to the Department of Health and Aging.

I am pleased to say, that today I have received written advice from the Department saying that my understanding of the law is correct and that I am entitled to a rebate for ICSI.

If anyone else used ICSI for their embryo creation, I’d encourage you to ask your clinic to bill you separately for this treatment so you can claim your rebate from Medicare. If you have any issues I’d encourage you to print out this letter and show your clinic, or when you ring Medicare.

This is a great small win for us!

It also poses more questions. Why are all other IVF treatments excluded for Medicare rebates but this one is not? I think this just adds to our argument that we should be receiving the full rebates.

Don’t give up everyone, I feel a change just around the corner. 🙂

Letter from Dept Health & Aging

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

Tracy’s Story

Let me just start this by saying that in no way does my story compare to the heartache that others in this blog have been through. My husband and I have been blessed with a gorgeous little boy. However, the current Medicare legislations are certainly putting an extra hurdle in the way of completing our family.

Tracy with her husband John and precious son Oliver

Tracy with her husband John and precious son Oliver

John and I met and married within a year and a half. We were in our early thirties and just knew it was right. We both had stable jobs, I was a primary school teacher and John was an engineer. We had the car, the house, the Labrador. The next thing to conquer was the kids! We were so excited to start a family together and hoped to have three children. I come from a small family and John’s family are all in Ireland so it was our plan to bring back the noisy house and big Christmases that I’d dreamed of. We fell pregnant very quickly. At our 10 week scan, we found that the heartbeat had stopped. We were devastated. But four months later, we found that we were pregnant again. I was anxious, but as the weeks rolled on I got more and more confident that this pregnancy was going to work. I was healthy throughout and we got busy preparing for our new addition. Oliver was born after a drug free natural labour on the 5th of November 2012. As the doctor placed him on my chest, I began to feel strange. I don’t remember much after that… Apparently, my uterus inverted causing a severe post partum haemorrhage. I required 13 units of blood in a transfusion and my blood pressure was so low that they were expecting brain damage or cardiac arrest! The only way to save my life was an emergency hysterectomy. My poor husband saw all this unfold and had to give the consent to perform the operation, something he’ll never come to terms with.

I remember waking up in the ICU after being on life support for a couple of days. I was so relieved to hear that my son was fine but was absolutely heartbroken to hear that I would not be able to carry any more children. I just sobbed and sobbed and sobbed. I had never felt emotional pain like that before.

Tracy's wishes she could give her son Oliver a sibling

Tracy’s wishes she could give her son Oliver a sibling

Anyway, fast forward almost 4 months and I love being a mummy. I’m on maternity leave and enjoying every minute of it. Physically I have healed, however, I’m not ready to give up the dream of more children. I’ve looked into adoption and permanent care, however, there are so few children to be placed that our chances aren’t high. During my research I have found that finding a gestational carrier can happen to everyday families like us! At this stage, I’m unsure if this will occur in Australia or overseas. This is completely dependent on whether I can find a carrier here or not, but either way, I will be doing my IVF cycle on home soil. We have discussed the priorities for our family and have decided that another child is more important to us than a new car or material possessions. We will be using all of our savings to fund this and we are just hoping that the bank will allow us to take out another loan to cover the rest. If it doesn’t work the first time, I don’t think a second time will be an option. A child is our priority but if we can’t get more money, there is nothing we can do. I already feel ‘ripped off’ that I had to have a hysterectomy, but being charged extra for IVF services is like kicking us when we are down. All I can do is to hope that our actions here will persuade the powers that be to change the Medicare ruling and give us the chance to complete our family.

Are you crazy? Why are you doing this in Australia and not overseas?

So often amongst our community of people accessing surrogacy, we (the women doing altruistic Australian surrogacy) are asked ‘Why do you bother trying to do it here in Australia?’ and ‘Don’t you find it all too hard?’
The truth is, the Australian system really IS making it too hard for couples. Clearly we are in agreement that the law should protect the interests of the child as paramount, and we understand that is the objective of the laws. Yet what in practice is happening is that altruistic surrogacy in Australia is so unclear and challenging – that a money making industry has popped up to ‘assist’ women such as us.

IVF Clinics

Those people that ‘assist’ us are most often lawyers and IVF clinics. The IVF clinics, as you know from this blog, charge an incredible amount of money per attempt of IVF. Between 12 and 18,000 per cycle, with no access to Medicare.

Every clinic has a different approach to the cycle. Some of them will insist on absolutely crazy and detrimental protocols, like egg quarantining. Yes, a clinic can request you to quarantine your donor eggs even though eggs on their own DO NOT work in about 85% or more of cases. Who cares? The IVF clinics are not paid on your successful outcome. So it makes no difference to them if your outcome is successful or not.

Some clinics will have a good process in place to support surrogacy but still insist on a 6 month quarantine of embryos. So after years of struggling, you find you have to wait 6 months before you can even start. This is incredibly frustrating.

Ethics Committees

Then there are the ethics committees. The doctors that have to certify that you are truly eligible for surrogacy. I must say that being certified as infertile is not a pleasant experience. Conversely, I don’t know of too many women that would willingly give up being pregnant either, or who, by choice, would like for someone else to carry their baby. To nourish it and grow it for them. Generally speaking, this is quite a personal task, and one that people like to do themselves, so I don’t quite understand why there is an assumption that women would rush to do surrogacy unless they absolutely had to. Some of us wonder if we will ‘fail’ the ethics committee as we haven’t ‘failed’ enough times in our IVF attempts. It is deeply distressing and the guidelines are not clear, which only makes it more messy.

Then comes our favorite topic –

IVF and Medicare.

Kate, from the blog Our Surrogacy sums it up perfectly.

” A refusal of support to assist something so positive for no real reason other than that I can’t carry the baby myself (was like rubbing salt into the wound).  I have had a hysterectomy under hugely traumatic circumstances.  Otherwise I am a healthy, active, young person desperate to complete our family.  why should I have to pay triple or more what other people would pay for the exact same treatment simply because those other people are infertile in a different way?

When I started to look into it further I discovered that some clinics do give medicare rebates to people who have had a hysterectomy – what??!!   Even amongst the clinics and IVF world here in Australia there is inconsistency.

Kate on her wedding day

Technically I ought to have been entitled to medicare rebates as at the time I had no surrogacy arrangement in place and I could have had a cycle and frozen the embryos to either send overseas or use for surrogacy here later on.  When I called Medicare they agreed that technically, you should only not be entitled to the rebate where a surrogacy arrangement was in place.  But my clinic would not budge.  I would be up for $12,000 minimum for one cycle; no rebate.  I can’t blame them, they were doing things by the book and didn’t want to get into trouble.  But the injustice that other clinics would turn a blind eye and bill the cycle in a different way seemed too much on top of the basic injustice that medicare won’t cover surrogacy.

In comparison, me, my husband and son can all fly to India, stay for almost 3 weeks and get a full IVF cycle with transfer to surrogate for less than that.  Yes we will have the fee to the surrogate and other costs on top of that but so would there be additional costs doing it here.  So, rather than stay here, give business to the IVF clinics here, and perhaps be safer, unfortunately I feel as though my whole family is being forced overseas to pursue something that could have been achieved here had the rules, regulations and costs been a little more user-friendly and accessible.” Read more of her blog here.

Lawyers

To do altruistic surrogacy in Australia, you need to complete a pre-surrogacy contract and then apply for a parenting order post surrogacy. When I first started looking into surrogacy, I met some wonderfully kind lawyers. They seemed so nice. However, I have since found that they spend time making a connection with you as they want to charge around $15,000 – $20,000 for the process. That’s right. They seem so nice and lovely, but by any estimation, that is a lot of money. And if you worked that out on hours….well let’s examine this idea together?

If a top rated lawyer were to charge  $450 an hour then it would be 33 to 44 hours of work. These lawyers are family lawyers. Our local family lawyer charges $250 per hour. So, by that standard we would be looking at even more hours of work. Is this realistic? Honest? When the pre-surrogacy contract is not legally enforceable? When it’s largely a cut and paste of a template that they already have on-hand…can they possibly find themselves doing a week’s worth of work on this project? I have since found lawyers that will charge the reasonable rate of about $750 to $900 for a pre surrogacy arrangement and $5,000 for a post surrogacy arrangement. But I had to really look hard for them because the industry cogs are well in place.

As one lawyer laughingly (but not jokingly, there is a major difference) said to us recently, “$60,000, (his estimated cost of altruistic surrogacy in Australia) Well, anybody can get their hands on that nowdays!” I guess at that rate of pay, it would be a correct statement.

Does this make Australian Surrogacy truly altruistic?

My feeling is that altruistic surrogacy is altruistic for only one person – the lovely lady that offers to carry the baby for you. It seems strange that the woman doing the most vital of all jobs is always the one called on to be the most accountable in terms of financial gain, erstwhile a huge industry cogs its wheels around her, making money at every step. She cannot be given a holiday post birth to celebrate a job well done. She can’t be given more than $10,000 in expenses over the 9 months she is pregnant, including lost wages, or a red flag goes up. So how can a lawyer ask for 15 to 20 thousand? And an IVF clinic 12 to 18,000?

With the confusion and the grey-ness of the law, with the industry that preys on people that need surrogacy in Australia we can see why many opt to go overseas where the laws are clearer and the expenses are laid out clearly and contractually.

We have made a choice. And we want to change the system.

We choose to do altruistic surrogacy in Australia because it’s what is right for us, but we understand why those who opt for overseas options think we are a little crazy. However, maybe we are just the right kind of crazy to get these laws changed enough to make the system fairer for all? To make the system clearer and more honest? We choose to start with the Medicare law, as it’s the most obvious one that needs changing.

Changing the law to make it fairer is worth being a bit crazy about!

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.

Monica’s Story

In early 2010 my husband and I decided we’d start trying for a family, we had been discussing it for a while. We had lived in the UK for 5 years and thought it was time go home, buy a house and start nesting for a potential baby. Fast forward a bit and It was late October and I was really frustrated that I wasn’t getting pregnant, wondering what I was doing wrong.

Monica & her husband

Monica & her husband

I started realizing that in back in July I had found a lump and totally ignored it, life had its heavy demands, but I proceeded to perform self-examination and there it was, I went to the GP got a full body examination and asked what he thought about the lump? He said don’t worry, if it’s still here in 4 months come back. Not happy with his opinion I went to a breast specialist, “Supposedly” the best in Vic. He read the mammogram and told me that my breasts were normal for a 26 year old and not to stress about the lump as it might just be a cyst. My mother and I weren’t convinced, as in 2006 I had a cyst removed from my breast and this one just didn’t feel the same. 3rd opinion here I come…

I saw another breast specialist; they call him “The Godfather”. I knew when I sat in his office that it wasn’t going to be a great day! He diagnosed me with hormone sensitive Breast Cancer, it’s basically to say that the cancer was stimulated by estrogen. OMG! I’m only 26, we are meant to be getting pregnant, I don’t want to be sick, I don’t want to die yet!

1 week later I was booked into have a partial mastectomy… followed by 4 rounds of chemo, 6 weeks of daily radiotherapy sessions, 1 year of Herceptin that was given intravenously and 5 years of Tamoxifen. My life had been turned upside down, my dreams were crushed and my heart is broken… My Oncologist told me that there is no way I can carry a pregnancy as that there was a extremely high chance that Tamoxifen would deform my baby and potentially harm myself if I got pregnant as it would raise my estrogen levels and therefore raise the risk of recurrence.

Our now surrogate offered to carry our baby, who I believe is an angel sent from above. Not everyone does this!
I feel hurt and angered at the fact that it’s not my fault I got sick and I can’t have a child the normal way, I don’t see why I should continue being punished financially and emotionally. To have one round of IVF it cost us $20,000 and by the time we finish we would have spent $50,000-$60,000. My husband and I are just humble average Australian tax payers. He works fulltime and then some and I work and study when possible. We would like a fair go and not have to feel like we are constantly being discriminated by the law because I was sick. We have never received any assistance despite always paying our taxes, I am appalled!

Like any couple going through the journey of IVF, all they want is a child, but the reality is that they receive a Medicare rebate helping them with the cost of IVF. We are requesting that you put yourself in our shoes and please give us the same rebate as any other couple, we are not asking for anything extra – just to be treated the same.