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.

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

Tracy’s Story

Our story is a little different than most involved in this process in that we are lucky enough to have 3 amazing sons from my previous marriage.

I was advised 5 years ago that due to medical reasons it was best if I had a hysterectomy. It was a very upsetting time full of confusion, disappointment and feelings of failure. I thought I would no longer be a real woman but held tight to the knowledge that I had my 3 beautiful boys and my life was full and my family complete, or so I thought.

I always wondered if I would meet another man that I would love and have a life and future with. I worried that if not being able to have children would be an issue and how could any man love me regardless. As such I decided not to look, that it would be best not to put myself through disappointment and heartache again, that I could be happy being on my own and I was luckier than some so be grateful for what I had.

So going along in my own little world one day I happen to run into a guy at my friends place. She introduced us for about 5 minutes and that was that. He could not stop texting our friend to organise a BBQ that night so he could see me, she did and we have been together ever since.

Tracy and her partner

Tracy and her partner

This man turned my world upside down, the love and affection in his big heart, the care and compassion he has for everyone is amazing. We talked about children and I had told him the first night about my situation, he had always wanted children and thought he could live without them as long as we were together. After seeing him with his nieces and god daughters my heart started to break as I told myself how could I do this to such a beautiful soul, how could I ask him to give up his dream of a child when I was so fortunate to have been though the experience of 3 beautiful babies. More than anything I wanted to share this beautiful experience with this man that loved me so much, this man that I had given my heart to and could never image living without. I wanted a baby with this man and I wanted to make our family complete.

One night at our friends she raised the issue of children, when I told her my situation she burst out saying well I’ll carry it. We were stunned, what and how could this be done. She continued to tell us that she had donated eggs to her cousin for IVF the year before and pulled out a book all about it. My partner and I said we would talk about and it was something we could look at later on. Our friend kept raising the possibility with each of us together and singly, we would casually discuss this at night whilst cuddle up and thought this could be a possibility as it would allow us to forfill our dream of completing our family.

I raised it with our older boys who light up with excitement and of course suggested a little sister would be a good idea. One afternoon on the train on my way home from work my partner called me, he is a long haul driver in the transport industry and calls me numerous times a day just to say hello and he misses me. He was away on a trip and called to see how my day was, I advised him that our friend had raised the issue about a baby the other day and he responded with ‘well what do you think’? Being a true female I said ‘well what do you think’? His reply floored me, he said ‘I think we should just go for it’ I asked if this meant he wanted me to start looking into the whole surrogacy think and he said ‘yes’. We were going to have a baby, or at least give it everything we had to make it happen. I was so excited and jubilant I almost squealed with joy but then remembered I was in the quite carriage and did a little wiggle instead.

Well I started to look into the whole surrogacy thing, the first thing I found was OMG there is not much out there that is useful and everything contradicts itself, the legislation and law is one thing but what and how this occurs is another. Then I stumbled across Hub Bub and that was it, I found so much information and so many wonderful people who really care and want to help. I am not alone, there are others out there and I found them.

I soon had a lot of info and started looking into clinics to try and get a price which is when I was advised that it is approx. $15,000-$18,000 and 100% out of pocket as Medicare does not rebate AT ALL. I then started looking into the legal side and costs and was advised that it is approx. $15,000-$18,000 and is NOT legally enforceable and that after all the stress, heartache and expense the GS could still say she is keeping the baby and there is nothing the law or us can do about it.

Well we are very lucky that our GC is a very close friend who has always and will always be in our lives and we will have no issue with the hand over. We do have issues with the costs of everything.

Due to my age 44 and turning 45 this year and the excessive costs of everything, this is it for us. We will only have one chance and that is more upsetting than anything. Medicare and this government have made it impossible for us (as is with many others I am sure) to go through this process again in the current situation.

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!

51 Letters sent to Australian Politicians and other Community Groups

Thanks to our group who is campaigning to change the unfair Medicare laws, we have managed to send 51 letters to politicians and other community groups in a few days. Well done everyone!

But this is not enough!! If we want to be heard its going to take a lot more than 51 letters. I urge you all send letters to your politicians. We have made it easy for you, we have included template letters and contact details for many politicians.

Here is a link where you can see who has sent what letters and the responses we have received so far. Letters sent and Response to date