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.

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.

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.

Channel 9 – The Today Show

For those who missed the live show, please click on the link to see us on the Today Show, Wednesday 10th April, 2013 – The Medicare loophole.

We are happy to have had the opportunity to engage with the Australian community through the Today show this morning. We are interested in any other mediums to share our story, to let people know that it is ordinary Australians that are impacted by this discrepancy in the Medicare legislation that forces surrogacy patients to pay double or triple the amount for IVF treatment as compared to other citizens.

Feel free to contact us through this blog or our Facebook page https://www.facebook.com/Medicareless 

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!

The murky waters of Medicare – Why we should update the law

The Medicare legislation is not clear in relation to rebates for medically necessary IVF. It states that if you are in an agreement to do surrogacy, you are not eligible for surrogacy. (Clause 2.37.7)

However, what if you are NOT in an agreement – say, you haven’t found a surrogate yet? Or you have just had a hysterectomy or you have just survived cancer and now you want to preserve your eggs so you have a chance of having a family?

If you are not in an agreement, and are not subject to an agreement – technically, you should be able to do an IVF cycle and be treated just like any other couple.

Unfortunately, NO.

Medicare recently replied to one of our campaigners and stated that ‘because a birth would require an ‘intended’ surrogacy’ they could not provide a rebate. However, this is clearly an interpretation of the law, and is not what the law expresses in the legislation.

Medicare state that they are committed to health services and ‘are currently looking into changes but they are NOT expected in the short term.’

This is why we are here campaigning. Now the law is being interpreted rather than expressly clarified – and it is open to interpretation at the clinic too.

Clinics are left to interpret the law, and as we have seen in the ICSI debate in an earlier posting, it means that even when surrogacy candidates are allowed to have a Medicare rebate, clinics will err on the side of NOT giving them.

We would like to clear up this mess. We would like to see IVF rebates provided equally to women who have a uterus or those who do not. Equal treatment under the law is a basic tenant of our society and we want to change the Medicare laws to reflect that.

We hope to have your support by either downloading the Petition in the files section and/or writing to your local member of parliarment and Tanya Plibersek.

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

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 “.