Feeling the Medicareless pinch

Facing the financial strain of IVF without Medicare is a real challenge. This is one of our member’s stories.

It’s no secret that dreams take hard work, and some dreams take more hard work than others. This is what I think about when I rise for work at 5 am, ready to go to the Police Force, and take on the day’s duties. Dreaming about my partner’s face, holding a baby in his hands, is what I work hard for every day.

It’s a common dream – it’s one my colleagues and I talk about at work. Family is a big topic amongst my friends and I. I’m surrounded by family-loving people, dedicated to their families, our society, and our friends, and yet my situation is so different.

I’m struggling to make a family, through the only method I have available to me – IVF. You see, a few years ago, I had a medically necessary hysterectomy. I had two simple choices – remove my uterus, or face ongoing debilitating pain and suffering that impacted every aspect of my life. That’s not really a choice, it’s a situation one finds themselves in that has no care for whether or not you’ve made plans for family.

One of my friends is going through IVF. Because she has a uterus, she gets Medicare benefits. She goes to the same clinic I go to, and has just received a letter advertising that her out of pocket expenses will be $1250. Her second cycle will be $650. Her transfers are included in the costs. She can afford to do the recommended 3 cycles of IVF in which to gain a baby.

For me, one cycle costs $12,000. The transfers cost $4,000. So I am eating budget mince, and putting off the home loan repayments.  All of my money from many months of pay (and I mean ALL of my income) will be going toward making my dream a reality. What choice do I have?

Which is why I know as I struggle to pull together another meal from the cheapest mince I can find, padding it out with carrots ($1 a bag) and grated on-special vegetables for another daily staple of spaghetti bolognaise, that our situation just isn’t fair.

I want to create a family with my partner. He’s a loving man who will be a fantastic dad, and he really, really wants to be a father. It’s a natural enough desire, isn’t it? He also grew up surrounded by people that value family.

One late night, my partner said; “I’m in a lose/ lose situation with you. If I leave you, who’s to say I’ll ever meet someone I love as much as I love you, to have children with? If I stay, I may never have children…” It was heartbreaking in the truth.

Sometimes I’ve thought – “Maybe I should just do the kind thing and tell him to leave me, and find a woman that can give him a baby without needing surrogacy. Maybe that’s the kind thing to do?”

But I won’t give up. Which is why every meal is spaghetti bolognaise. Every cent of our income is going into IVF. What’s hardest is knowing that it needn’t be like that.

This is the real life impact of the government’s lack of action. It makes me so angry. I’m angry that I have to pay so much more than my friend. It’s hard to see others succeeding when they have such affordable access to medical treatment. Especially when it’s completely obvious that I have no other option but to seek medical treatment to have a baby.

There’s no other pathway for me. IVF is my ONLY way to have a baby. So why am I excluded?

What would you do? Give up on your dreams? Let your partner go and live a solo life? All because the government hasn’t updated its law to include you in a sentence of legislation…..?

I’m not about to give up yet, but I’m growing weary, and I’m running out of funds. If this transfer doesn’t work….I am not sure I can go on living like this. I’m making every sacrifice I can for our dream, but that feeling of being a part of a system that is so unjust is so….well….I don’t even have words for it. It’s so upsetting. Every day it’s upsetting. In the supermarket it’s upsetting. In the office it’s upsetting. I sit in the car and think about it. I can’t escape this feeling.

In the end, I just want to be a part of a family. I want to share what others have in an everyday, normal way. I want my partner to be a dad. And I want equal treatment to a woman with a uterus. I’m not half a woman. They took my uterus but they didn’t take my dreams. Well, not yet.

Surrogacy Myths: Protecting the body beautiful

Some surrogacy myths fly in the face of logic. One of these myths is that women who choose surrogacy do so because they want to protect their beautiful bodies. They are concerned with stretch marks, getting ‘fat’, and other visible signs of pregnancy.

While this may be a concept for the incredibly rare case of a select few celebrities, overwhelmingly the reason even celebrities choose surrogacy is because of medical or social reasons and NOT to avoid pregnancy.

Elizabeth Banks used a surrogate after embryos failed to implant in her womb

http://www.ivillage.com/celebs-who-used-surrogate/6-b-140197#491540

Overwhelmingly, all the women we speak to (and even the same sex couples!) say that if they had a choice, they would carry their own pregnancy and have their own child.

Carrying your own child is the ideal situation. Surrogacy is a last resort option, a decision that is costly even when it is 100% altruistic as it is in Australia. If there is any other way to safely have a child, the intended parents would gladly choose it.

For many of us, our bodies represent the ultimate in betrayal. We have battled cancer, heart disease, blood clots, or were born without a functional uterus. So to say we are protecting our body for beauty is ridiculous. As a group, we are littered with scars from operations which we have survived. We wear our scars with pride and would be more than happy to wear our pregnancy stretch marks with a greater sense of pride.

At Medicareless, we believe stretch marks are beautiful!

Unfortunately, some of us will never have the pleasure of knowing how it feels to carry our own children.

For those of us doing surrogacy, it simply isn’t possible to carry a child safely. So please think of us when you next hear this surrogacy myth.

If you think that Medicare laws in Australia should be equal for all, including those accessing surrogacy, please download and sign our petition for change and send it back before June 5.

Alisa’s story – a cancer survivor who wants a family

In 2008, a week away from our 1st wedding anniversary I was thrown into a severe
round of chemo, radiation and brachytherapy. I was diagnosed with a very aggressive
and severe form of lung cancer that on very rare occasions attacks the cervix, which is what happened to me. I was given a 20% chance of survival regardless of my treatment, so it all looked pretty bleak.

<Image from: Journeying Beyond Cancer >

I managed to get through it with the help of family, friends and my wonderful
husband who made me laugh every day, I’m not sure how, but he did.

I don’t remember much of that time now, I did a lot of sleeping, crying and trying to
eat. I was determined not to lose too much weight as I’m quite slender to start with. I
guess you can say I was quite determined to stay alive. I still have everything intact,
but am unable to conceive or carry, which makes it very upsetting. For some reason
the choice to have my own family has been taken away from me. I am now 4 years in
remission. Right now we are looking very good. So I just want to get on with my life and that means following my dreams for a family.

Troy and I have wanted a family for years, even before we got married, but I wanted to be married first as I thought it was the right thing to do. We have nieces and nephews and so many friends with kids, and we just know that having a child will bring us so much joy.

So… after many years we are up to the surrogacy stage. Yes, it’s taken that long to get through the egg donation. We had a few offers from egg donations, but for one reason or another, they were not medically fit or time passed and we didn’t hear from them again and other ladies were helping someone else. And we’ve had a lot of stumbles too.

We eventually found a lovely lady and have 5 embryo’s freezing awaiting a surrogate.
The six month sterilization period will be up at the start of July, 2013.

We have been very fortunate to have had 3 surrogates offer, but for one reason or
another it hasn’t worked out. We are hopeful that someone out there will be able to
help.

At times we have been quite upset with the whole process to be honest and feel very lost and alone. It’s been extremely expensive so far, from taking intended egg donors and surrogates to the Dr’s – only to find that the lovely people who have offered are not “medically fit” to go ahead with, and the expense of traveling on many occasions. There’s no Medicare for any procedures so every time we start this process with someone new I am out of pocket again. And again. And Again. Still, we can’t let go of our dreams. We’ve come so far to get to this stage that we can’t just give up now.

We have also had a lot of trouble with the clinic we have been going to. Wanting
us to do things a certain way which doesn’t fit our situation, well to be frank, wouldn’t fit anyone’s situation. I won’t go into details. It’s caused a great deal of stress, but fortunately not on our relationship. The last couple of years have definitely brought us closer together.

We still have our eyes on the prize so to speak and know that we will eventually get
there. We are quite patient and know that an angel surrogate will help soon enough.

We have sooo much love to give it’s not funny. I think our cat is going slightly crazy from all the cuddles and attention it gets! Troy loves sports and I just know he can’t wait to have a child to go surfing or play football with, and I love baking and can’t wait to make special treats and birthday cakes for my much longed for child. We’ve got a big backyard planned for a pool and cubby house, and a lovely house we are slowly renovating and can’t wait for the day that we bring our newest member of the family home to share it with.

Our parents on the other hand are on another level!! They are already buying things! I’ve told them to slow down, but they are excited that we have the embryos and it’s only a matter of time and determination and we will find a surrogate.

Alisa

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If you would like to help Alisa as a surrogate, please get in contact with us via the Facebook page (linked at right). You can also support us by downloading the petition and collecting signatures – to help cancer survivors gain equal access to Medicare to have a family.

Our Ms. Amazing has found us :) We have a surrogate!!!!!

One of the members of our community has some good news to share! She has just found a woman willing to carry a baby for her. That part of the struggle over, now she will be facing the IVF clinics, counselors, lawyers and more. Support her by following her journey, and say congratulations while you are over at her blog!

thesiblingprojectblog

Words simply cannot describe the emotions running through my bones at the moment. I have never been so in awe of someone in my entire life. To offer the gift of life for someone else, and cherish and take care of that life until when we can take over is nothing but miraculous.

A very spiritual man from India recently gave me some advice. It was a time where I wondered if I should give up. It was a time where I wasn’t entirely sure I had enough left in the tank to continue on with such an emotional and difficult journey. With every high came twenty lows and with it the wonder of whether I could continue on this path. His wise words encouraged me on and it is the reason I am now where I am today.

“Never let the flame of hope go out. With hope in…

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25 years on – reflections from Australia’s first surrogate

It’s been 25 years since Australia first got involved in surrogacy. We here at Medicareless love this interesting presentation from the very first woman who participated in IVF surrogacy in Australia.

In her blog Linda And The Star – Linda Kirkman say of the experience of gestating her niece:

“I overall derived great satisfaction and a sense of empowerment from being able to have a vision of something I wanted to achieve, and direct the system – in this case, the reproductive technology system, combined with overcoming legal and ethical hurdles – to achieve my goal. No, I’m not demure, and in the thrall of a dominant older sister. We worked together, with the aid of family and the wider community, to achieve a goal. In this presentation I write about privilege, human rights, and birth stories, and illustrate it with photos and artworks made by Bendigo artist, Iain Stewart. The presentation is available on academia.edu.”

We recommend you check out Linda’s great presentation and think about the future you would like to see in Australia. We know we would like to ensure that surrogacy in Australia is made more simple for those who find themselves in need of a surrogate, or who are generous enough to offer themselves to help the family dreams of others to come true.

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!

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

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

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.

Tiffany’s Story

Well low and behold I got pregnant the very first month I tried. I remember being totally shocked. All was going well until I reached 7 weeks and started to bleed. I remember going to the hospital, laying in the ultrasound clinic and hearing the words that would haunt me forever “There is no heartbeat.” I can still fell the emotional pain that I felt being wheeled to a ward past the maternity unit and seeing all the mothers with their newborns.

We were told to go home, wait a couple of months and try again. Well we tried and tried for 2 years and nothing happened. Eventually after clomid, injectables and iui we jumped on the IVF roundabout. Again I was shocked when I got pregnant the first time. On my birthday I found out that I was having twins. I thought that God was giving me back the baby I lost plus one.

When I was 21 weeks pregnant I went into spontaneous labour and my precious twins Jacob and David were stillborn. My heart was broken but I was even more determined to try again. After 3 more IVF cycles we got pregnant again. This time we made it to 23weeks and our daughter Aimee was born and lived for 2 hours. After Aimees birth I the doctors could not control the bleeding. I haemorrhaged and needed most of the blood in my body replaced. I ended up having to have an emergency hysterectomy.

I thought that my dreams of being a mum were over. I went home from the hospital with empty arms and an even emptier heart. I struggled for 3 year. Seeing counsellors and taking anti-depressants. I could not let go of the idea of being a mum. It almost cost me my marriage. My husband was devastated by the deaths of our children and could not stand the thought of being hurt again, whereas with me it was all I could think about. I spent day and night scanning the internet trying to find an answer to our heartbreak.

I found a website that hooked potential surrogates up with perspective parents. I started talking to a woman named Janice. She agreed to help us. We flew to the other side of the country to meet with her. When we got there she told us that she wanted $10, 000 to be a surrogate for us. Besides the fact that it is illegal we also felt that it was immoral. We worried that if we payed her now she would come back later asking for more money. We flew home even more deflated than before.

We went into counselling and tried to resign ourselves to being childless. I decided to go back to university and get a teaching degree. Life plodded along, our dogs were our kids and we travelled overseas and did all the things that people say you can’t enjoy when you have kids. The problem was we didn’t really enjoy them; there was still a hole in our hearts.

In 2011 two of my cousins approached me. One wanted to donate eggs and one wanted to carry a baby for us. I was so scared, too scared to get excited. Even when my cousin Yvette called me and said she was pregnant I did not cry or show much emotion. All I could think is she will decide to keep the baby; I’m going to get hurt again.

Since Yvette lived interstate we did not get to go to all the appointments. She sent us lots of pic and again it felt like we were looking at someone else’s child. During all this time our biggest worry sadly was money. It cost us every bit of our savings to have this child and we were wondering if we would be able to provide her with the life that she deserved.

Finally the day came Yvette was scheduled for a c section as our daughter was breech. I went into the theatre with her. My husband waited outside. They pulled this screaming pink little thing out of her and my heart melted, but still I did not feel like she was mine. All I could think was please God don’t let her change her mind, I can’t live through any more grief.” They cleaned our daughter up and handed her to me. It was like an out of body experience. I felt like I was going to faint.

When my husband held our daughter who we named Jasmine Grace for the first time he broke down. He tells me now that he knew from the second that she was put in his arms that she was ours. The fact that she looks just like him helps too.

The day that we left hospital was a day of mixed emotions. I was so happy yet I knew that my cousin was hurting so badly and there was nothing I could do to take her pain away.

The first few weeks at home are a blur now. I sort of felt like I was babysitting. I took about a month to really bond with Jasmine. It wasn’t until the legals were underway that I totally felt like her mum.

Jasmine is now a year old and she is my whole world. I would go through the last 15 years again in a heartbeat to get her. Thanks to Facebook my cousins can see her whenever they want and we have been to Adelaide to see them twice in the last year.
I’m not going to lie and say that our surrogacy journey has been easy. For one thing it looks like we will probably have to sell our house to pay off the debts we incurred during this process and the actual pregnancy was a rollercoaster of emotions, but if people ask me if I would do it again my answer is always the same “Hell yes “.

Holly’s Story

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