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.

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

Image

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!

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.