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: The career woman too busy for a family

Is surrogacy a choice? Do women choose to allow another woman to carry their babies because they are too busy to do it themselves?

All too often when we start conversations about surrogacy, certain repeated themes come into the conversation. One of those themes is the idea that surrogacy is a choice. That it is something women may choose to do because they have a solid career and are ‘too busy’ to take the time to gestate their baby. Or they are ‘too old’ because they have ‘spent their lives working on their career’. In other words, people question: ‘why should we support you when you have made bad choices and are now paying the consequences for those choices?’

We heard this myth of the busy career woman in the interview last week with Dr Andrew Pesce, former head of the Australian Medical Association. While we were happy that he supported our cause for equal treatment under the Medicare laws when accessing IVF for surrogacy, we were saddened to hear him bring the ‘mythical career woman’ into the media interview.

Let’s consider this notion for a moment. Just who would this mythical woman be, that would prefer another woman to have her own baby for her? Let’s look at the case of Nicole Kidman as a prime example. Not only is Nicole potentially quite rich, famous and a very busy career woman, but she also used a surrogate to have her daughter Faith Margaret after giving birth to her first child Sunday Rose.


<Image from JustJared.com >

On the surface, Nicole Kidman could be this mythical woman. She could be the busy career woman/ celebrity who is ‘too posh to push’. The obvious question then is: Why did she keep trying so hard to have her own baby?

Kidman spoke to Who magazine about her depression, and repeated pregnancy failures:

“I had tried and failed and failed and failed. Not to be too detailed, but I’ve had an ectopic pregnancy, miscarriages and I’ve had fertility treatments. I’ve done all the stuff you can possibly do to try get pregnant.

Every woman who has been through all those ups and downs knows the depression that comes with it. So the way it just happened with Sunday was like, “What?” The percentages were so low. It is the miracle in my life.”

So if you scratch the surface just a little, any journalist worth their salt can see that there is very likely to be some underlying issues regarding WHY Nicole Kidman choose a surrogate to carry her precious second child into the world. In her own words, Kidman says in an interview with People magazine back in 2007:

“There’s a complicated background to that, given that I never speak much about many things. One day maybe that story will be told.”

Yet many persist in saying she represents this myth of a career woman who isn’t interested in carrying her own baby. We here at Medicareless believe that this example shows that celebrities can have infertility issues too. That just like the rest of the world, being rich or famous does not exempt you from being the 1 person in 6 that will suffer from infertility. In all likelihood, there is a very sound and MEDICAL justification for Nicole and Keith’s decision to use a gestational surrogate to carry their child.

The mythical career woman in Australia

To continue with this analysis – with maternity leave, the expanding right to flexible working arrangements to help modern families with implementations such as working from home or job sharing – what woman would feel the need to use a surrogate to aid her career progression? In fact, Australia topped a list of 128 countries by international consulting and management firm Booz & Company for women’s access to education, equal pay, childcare and anti-discrimination policies. Should the career woman want a baby, she can have it.

And as unfortunate as the facts are – the glass ceiling is alive and well in Australia. So the likelihood that a woman is actually in an extreme position of power that requires her to not take time off to have a baby is extraordinarily low. This shows that if this mythical ‘I can’t afford time to have my own baby’ woman does exist, she is ridiculously rare.

In fact in the Sydney Morning Herald, October 17, 2012, Helen Conway, the director of the federal government’s Equal Opportunity for Women in the Workplace Agency, said:

”In Australia, women hold just 14 per cent of board seats in Australian companies, just five CEOs of our top 200 companies are women and a quarter of our top 200 companies have no women on their boards at all.”

Ms Conway said more than 50 per cent of university graduates in Australia were women, but that had not translated to substantial increases in the percentage of women in corporate leadership positions. ”We are wasting our female talent,” Ms Conway said.

So this collectively imagined mythical woman, at the top of her career and totally focused on her position as CEO or CFO, unfortunately, is an incredible rarity and is not one we should be focusing on when discussing the very real, and very immediate needs of surrogacy patients wanting a family.  This rare case of a woman who is willingly “choosing” surrogacy should not be used as a political vehicle of manipulation to implement rules that deny the majority of genuine patients from medicare benefits.

So if it isn’t career, what are the real issues that require a woman to seek a surrogate to carry a child? We took an informal review from our small community and have made a list of the medical issues that have forced them to seek a surrogate to have a family. Note not one of them lists ‘my thrilling career’ as the reason for surrogacy.

All of these women deserve a chance to do IVF and receive equal treatment under the Medicare law when trying to have a family.

  • Age 35 : Survived cancer twice. Now in remission and wants a family. No children.
  • Age 36 : Severe fibrosis followed by multiple failed IVF cycles. Dr. confirmed that the patient would be unable to fall pregnant when she was 35. No children.
  • Age 31: Emergency hysterectomy aged 26 as a result of eclampsia/organ failure/hemorrhage during childbirth. One child aged 4.
  • Age 34: Severe post-partum hemorrhage and uterine inversion resulting in emergency hysterectomy at 34. Still 34 now with one six month old baby.
  • Age 38: Rare blood clotting disorder that causes deep vein thrombosis when pregnant. 3 failed pregnancies, each resulting in massive clotting with risk of stroke, heart attack, death. Began trying for children at 29. Recently recommended for surrogacy after another failed pregnancy and blood clotting episode. No children.
  • Age 40:  Autoimmune disorder, antiphospholipid antibody syndrome. This caused the death of two of three boys (pregnancies). Now has a mechanical mitral valve after 2 open heart surgeries and is on warfarin which is counter-indicated for pregnancy. One child aged 4.
  • Age 34: Heart-double lung transplant recipient age 24 required due to developing pulmonary hypertension and right heart failure which resulted from a ventricle septal defect at birth. Risks of carrying a child include birth defects, very high risk of miscarriage, kidney failure, very pre-term delivery. No children.
  • Age 30: Cardiomyopathy (heart failure). Patient is healthy on drug therapy but cannot carry a child as she will have a heart attack or stroke and most certainly will die. Additionally the drugs are also not compatible with a developing baby. 21yrs old at age of diagnoses. Have been trying a number of options to have a baby for the past 4 years. No children.
  • Age 38. Heart transplant at age 26 due to a virus. No children but surrogate currently 9 weeks pregnant and all looking good for a birth due 26th November.
  • Age 35: Born without uterus. MRKH syndrome. Diagnosed at 17. No children.
  • Age 29: Hormone positive breast cancer at age of 26, had a mastectomy, did chemo, hercepton and radiotherapy. Cannot risk a pregnancy because of high chance of recurrence and on breast cancer medications that cause deformities when pregnant.
  • Age 35: Marfan Syndrome. Open heart surgery at 32 to replace aortic valve and entire ascending aorta. Life long warfarin therapy which is counter-indicated for pregnancy. Twin boys now aged 3 yrs born through surrogacy at age 35 on 4th and final attempt.
  • Age 27: Numerous clots. Clotting disorders- Antiphospholipid syndrome, prothrombin gene mutation g20210a and lupus. Age 16 when first diagnosed. No children.
  • Age 35: Emergency hysterectomy at 35 during childbirth. Have 10yo and 3yo sons. Did IVF for 6 years to have 2nd son (genetic condition means only 1 out of 8 eggs are viable). “Our daughter is in heaven”.
  • Age 30: Diagnosed with rare autoimmune disease (Takaysu’s Arteritis) at age 24. Waiting for open heart surgery and will be on medication that is counter-indicated for pregnancy. No children.
  • Age 32: MRKH Syndrome born without a uterus. Diagnosed at 17yrs. First gestational surrogacy attempt at 30yrs resulting in 1 child (now 22mths), lost her twin. Second attempt lost baby at 17wks.
  • Age 29: MRKH Syndrome diagnosed at 16 age. No children.
  • Age 42: MRKH Syndrome diagnosed at age 6. Not only not a full kidney but no uterus, no fallopian tubes, no cervix but thankfully has ovaries so did IVF last year & have 6 embryos ‘on ice’.
  • Age 27: Breast cancer, recurrence in lymph nodes when pregnant with son at 26 years old. The cancer was estrogen receptive, so doctors advised to not get pregnant again and that removal of the ovaries was a good idea to lower the estrogen to ensure no more recurrences. Full hysterectomy. One 8 month old child.

If you have been moved by this list, and feel that the Medicare laws that do not allow these women equal access to fertility rebates is unjust, please download and sign our petition before June 5. We welcome your support.

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

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

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

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

andrew-pesce

Listen the entire interview here

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

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

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

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

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

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

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

In which country are you talking?

Obviously here in Australia.

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

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

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

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

Trewy’s Surrogacy Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you for taking the time to read my story.

Trewy”

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

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

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.