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Choosing Sex, Compensating Donors and Egg Banks: The NHMRC is calling for our thoughts on IVF

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Australia is reviewing its policy on IVF sex selection, compensating egg donors and egg banks. They have asked for submissions with our thoughts on this. My submission is below. The Working Committee has developed a range of case studies that illustrate the issues that arise. You can read more about each of these case studies here:
http://consultations.nhmrc.gov.au/files/consultations/drafts/artdraftethicalguidelines150722.pdf

You can also make your own submission here:

http://consultations.nhmrc.gov.au/public_consultations/assisted-reproductive-tech

Also, I invite you to read this illuminating article by Tereza  Hendl on the topic of sex selection in The Conversation:

https://theconversation.com/choosing-childrens-sex-is-an-exercise-in-sexism-45836

Appendix 3a Sex selection for non-medical purposes

I am heavily in favour of the existing laws remaining as they currently are. This is largely due to the inherently forceful application of gender norms upon children whose sex has been chosen. I wholeheartedly agree with the 2007 guidelines which state that admission to life should not be conditional upon being a particular sex. I address the case studies in the following ways:

Family Balancing: none of the four scenarios in this case study present a strong enough argument for sex selection, in my opinion. Rather, all four of the scenarios demonstrate an assumption that gender is tied to sex, and expectation that an child of a particular sex will display particular gender characteristics. This is a problem because it reinforces gender norms.

Replacement of a Child: While this case carries much more sympathy that the scenarios in the Family Balancing case, they essentially come back to the same problem – that there is an assumption that a child of one sex with ascribe to a particular gender, and will be somehow similar to the previous child who was or was not of that gender. I cannot support sex selection in this case.

Travelling Overseas for Sex Selection: In these scenarios we are presented with good evidence for why IVF in Australia should be more readily available and cost effective, but not good evidence for why sex selection should be allowed. While some patients will continue to travel overseas for treatment, in order to gain sex selection, it is my opinion that Australian clinics should counsel patients as to WHY they wanted sex selection, and continue to offer them safe and regulated treatment NOT including sex selection. This would mean that more parents might be encouraged to stay in Australia for their treatment, and have the opportunity to address any assumptions they have about gender and their future child.

Respecting Parental Autonomy: These scenarios present exactly the problems I have been outlining in the previous three case studies. Parents should be counselled to realise that their happiness does not depend on their child fulfilling certain gender expectations, and to try and do so is potentially detrimental to the child’s own mental health.

Other potential Uses: The is an obvious flaw here in that sex selection will not determine whether the child will or will not inherit the condition that the parents do not desire. However, there is a more significant problem, in that parents and society more generally are not able to value individuals who are seen as ‘disabled’ in some way. We must work against this assumption, just as we are with gender norms, to realise that those who have been diagnosed with some form of ‘disorder’ are not limited, or lacking potential. Rather, these people possess incredibly valuable personal qualities that can make them hugely significant contributors to our communities.

Appendix 3b Compensation of Australian women for the reproductive effort and risks associated with donating their eggs

It seems that the important distinction to be made is how much egg donors are compensated and what constitutes the difference between compensation and inducement. I would suggest that it is currently common practice for donor-recipients to compensate their egg donors all the costs referred to as ‘reasonable out-of-pocket’ expenses, including medical, counselling, loss of earnings, travel, accommodation, insurance and legal advice. It may be useful then, to have some kind of regulation around these costs, to make the line between ‘reasonable’ and ‘unreasonable’ costs clearer for all parties. So long as the egg-donor was only reimbursed, and not able to actually make a profit from donating, I see no reason why these regulations should not be brought into place. This would increase options for donor-recipients greatly, as more women might be willing to donate, particularly to not-previously-known donor recipients. However, I suspect that the numbers of voluntary donors might still remain low, since this system would not essentially be any different from the current system based on altruism, just more regulated.

Appendix 3c 3c Establishment of an Australian donor egg bank

An egg bank would have the benefit of regulating how children may continue to access their donors, and information about them throughout their lives. Donors would also be able to continue to access information about any children that were born as a result of their donation. However, donors should not be able to contact children unless parents and children have specifically requested this.

I am in support of the establishment of an Australian donor egg bank, under certain conditions. Eggs which have been frozen, but unused, by women who undertook their own IVF cycles, should be available for donation, but not for any compensation. This should only be the case once that woman has completed her own family, to reduce the risk of her regretting the decision to donate. Since the woman’s costs involved in the procedure have already been covered by herself, she should not incur any further costs in choosing to donate the eggs that she no longer wants to use. This would essentially mean that she would not be compensated more than other egg donors, who would be provided with nothing beyond ‘reasonable out-of-pocket’ expenses.

Egg sharing, where women are compensated costs for IVF in exchange for donating some of their eggs should not be allowed. Women who need IVF to conceive should have completed their own families before being able to donate to the egg bank, particularly if they have not been able to conceive easily themselves. This will reduce the likelihood of women who are currently undergoing IVF, donating their eggs, and later feeling that they ‘lost’ the ‘good’ eggs to a donor-recipient. This is a separate issue to women who wish to donate to an egg bank prior to choosing to start their own families. This should be allowed, so long as they have received significant counselling about the impact of potentially donating eggs, if natural conception does not come so easily for them later. In this case, women should be compensated, just as they would be if it were an altruistic donation to a known donor-recipient.

Egg Freezing: Helpful or Pressurising?

egg-freeze

(Please note: I use this image ironically.)

Yesterday, Professor William Ledger wrote an opinion peice in The Age on fertility and the problem of an aging population. Ledger is head of UNSW Medicine’s School of Women’s and Children’s Health and professor of obstetrics and gynaecology. You can read the opinion piece here:

http://m.theage.com.au/comment/ivf-isnt-a-fixall-for-those-choosing-to-delay-adulthood-20150531-ghddn9.html

I also attended Ledger’s lecture last night, entitled, “The Ticking Clock: Demographic Change and Future Families” presented with social researcher Mark McCrindle at UNSW. I appreciated how Ledger’s discussion of IVF in older women was preceded by McCrindle’s thoughtful analysis of demographics in Australia and how they have changed. There were moments, particularly at the end of Ledger’s question time, when he seemed to be suggesting that it was a simple thing for women to choose to have their families earlier, that they should be prioritising finding their partners and ‘settling down’ over career or other goals. I found this uncomfortable on a number of levels, not the least of which was the suggestion that women should settle with a partner they might not otherwise have wanted children with, just because they feel the pressure of their ‘ticking clock’. McCrindle’s demonstration was a welcome relief to this simplistic idea of young women’s lives. McCrindle argued that society is changing, and that the pressures of housing and income make the fairytale of ‘a house and kids’ less available to most young people.

Of course I am not ignoring the fact that while our generation can expect to have a longer lifespan than any before it, and therefore to spread out our life experiences, a woman’s window for fertility does not change. Certainly, I am taking what I consider Ledger’s most helpful piece of advice to dinner conversations with friends: if you are over 30, and not sure when you plan to have kids, get your AMH tested so that you have some idea of how many fertile years you have left. The AMH test is a simple blood test, and should cost less than $100. For giving yourself some indicator of when menopause will happen, this seems like a good investment. If you find out that you are one of the unlucky ones who will run out of eggs sooner rather than later, then you have the option to freeze some eggs, and keep them in the bank for later.

The thing that surprised me the most about sitting in this lecture was watching the audience’s reactions. I had not realised how few people understood that IVF does very little to fix the age of eggs. In fact, women in their 40s usually have the same chance of conceiving naturally as they do with IVF. So long as there are no ovulation or fertilisation issues, which there usually aren’t, IVF cannot yet do anything to solve the fundamental problem in getting pregnant at this age: that a woman’s eggs are not as chromosomally capable as they once were. This means that the egg is unable to develop an embryo, which needs all of the power of the egg to combine the DNA from egg and sperm into a new baby’s individual DNA.

Ledger mentioned some emerging research looking at how to help older eggs repair DNA more efficiently, which may reduce the aging process, but is still in the early stage of development and a long way from clinical applications. It was all too clear listening to Ledger that the research needs more funding also, and the research that is being done is primarily directed at this ‘older egg’ problem, rather than younger women’s fertility issues such as Polycystic Ovaries and Endometriosis. While I wholeheartedly agree with the fundamental premise that women and men need more education about fertility, I am also wary that pressuring young women to think about their fertility may cause unnecessary anxiety, particularly in women who are likely to have no problem conceiving once they decide that that is a life course they want to take. Ledger mentioned that, to date, the overwhelming majority of eggs frozen by young women have not been used, suggesting that these women did not need the procedure in the first place. One cannot help but be curious what advantage it is to the business model of IVF clinics to be able to extend their market into the entire demographic of women in their 20s and 30s, not just women who have been unsuccessfully trying to conceive. Perhaps I am synical, but how many more patients and cycles can be marketed and invoiced if this huge new population of women were enticed into the market?

Ledger’s one piece of advice that he would give to a woman in her 30s right now, if she wasn’t in a relationship, would be to freeze her eggs. While I think this suggestion is rather extreme, I would suggest that if you are in your 30s, and definitely know that you want a child, but don’t know how or when that will happen, at least get your AMH test done. It’s quick, it’s simple, and will more than likely let you know that you have another decade of reproductive years ahead of you. If that test tells you that you would be better off to freeze some eggs, then at least you have that option, and those frozen eggs will be ready for whenever you and your uterus are ready to use them.

Pregnant Until Proven Otherwise

proven

I am very proud to present this beautiful blogpost written by a dear friend who is also courageous, inspiring and one of the most wonderful people on the planet. Enjoy her words 🙂 xx

http://ivfaust.blogspot.com.au/2015/04/proven-otherwise.html

Confessions of Subfertility

ID-10063454Somewhere along the line doctors must have figured out that it wasn’t nice to call people infertile. No one in the medical community has ever called my husband or I infertile, according to them we suffer from ‘subfertility’. After four years, seven IVF cycles, twelve cycles of oral and injectible hormone therapies, three pregnancies lost and the cost of a mid-sized new car, we have little hope of ever being able to have genetic children.

Most people that I see on a daily and weekly basis know that this is my reality. There comes a time when it affects so much of your life that you have to be honest with people and let them know why you have to cancel at the last minute, to rush to the clinic, or can’t attend their function at a particular time, when you need to be injecting or taking a suppository and letting your body absorb the (hopefully life-giving) medication. Yet there are only a few people who actually know the full details of the journey. These people are special. Some of them learn along with you, riding the tsunami of emotions as you wait, hope and grieve together. The family and friends who choose to take that intimate ride with you are more precious that words could ever express. Another special group of people don’t need to know the details, having been there themselves, they can go for months without seeing you and still read the lines on your face to know what every moment has been like. The majority of people have a generalised kind of empathy, or sympathy, for the situation, but can’t really get their heads around it. It is for these people that I have decided to write, not because I am looking for sympathy, but so that you can step into someone else’s ‘subfertile’ shoes for a moment, and be more sensitive to their situation.

Yet this is also a kind of love letter to all the past, current and future women and men who have and will be labelled ‘subfertile’. I feel for you. One of the best pieces of advice I can offer you is to find a community, a tribe of people who you can be honest with, and who are going through the same thing. For almost a year now, I have been teaching fertility yoga at Genea, one of the biggest fertility clinics in Sydney. In that time I have been privileged to meet and become friends with subfertility patients of all different ages, lifestyles, experiences, beliefs, diagnoses and outcomes. Teaching is a magical renewable resource. You give to your students but somehow always receive so much more back. More than anything else I have done on my own fertility journey, connecting with and supporting other patients has given me perspective, empathy and a community. Not only does it release me from the feeling of profound loneliness in the struggle, it rejuvenates hope, when hope seems impossible. Like many IVF patients, I used to see other women’s pregnancies as a threat, an enraging aggressive act of be-kind-for-everyone-you-meet-is-fighting-a-hard-battlegod sent to remind me of my own failure to conceive. Working with pregnant patients helps me remember, as I see the ‘happy pregnant woman’ on the street that everyone has their own struggles, whether it be around conceiving or not – there is no such thing as an easy life. Except for, perhaps, my dog’s. That doesn’t seem like too difficult a life.

As much as I can now celebrate other women’s pregnancies, they still hurt. They are a bittersweet pain, like my birthday, or Christmas, both being reminders of another childless year. They hurt on the same level as attending our friend’s children’s birthday parties, particularly those who were conceived since we have been trying. It is similar to the pain of interested inquiries from friendly acquaintances about ‘when we will start trying’ or if ‘we’ve thought about kids’. The answer is yes, we have thought about it. A lot.

Most people who have never been through fertility treatment can empathise with the difficulties of the treatment itself. The countless internal vaginal ultrasounds, literally thousands of bloodtests, surgeries to pierce ovaries and remove eggs, run dye through fallopian tubes and scrape or burn away uterine lining that has somehow found its way outside the uterus. The process desensitises women from their bodies enough to be able to give themselves multiple injections daily, insert creams and pessaries through the vagina and take nasal sprays and pills that can feel like poison, literally making them sick. The hidden reality is that none of this compares to the pain of losing hope after hope that you will soon hold your baby in your arms. I have had five embryo transfers meaning that the beginnings of a genetic code for five individual babies have entered my uterus but failed to become children. Yet none of them hurt so much one little frozen embryo that looked perfect, but never survived the thawing process to make it back into my body. Somehow this loss felt more personal, like I had spent months looking forward to meeting this frozen baby-beginning, to only be rejected by the child who couldn’t even make it back from the petri dish to greet me. Of course this is ridiculous. Of course there is no personal in this process, there is no child refusing to rush into my arms. But that is part of the problem.

They say there are five stages of grief: denial, anger, bargaining, depression and acceptance. For patients going through seemingly endless fertility treatments there are only four stages; acceptance is impossible until there is resolution. Each lost fertilised egg, each lost embryo, each lost pregnancy is grieved for as you would grieve the loss of any loved one, or any cherished future. Acceptance is consistently delayed by the onset of the next cycle, offering new hope, and new chances to have that hope devastated. Finally acceptance is achieved in one of two ways, either a baby is born, and all the previous lost babies can be fully grieved, or the couple decides to move on. I have seen patients crushed by this cycle of grief. Unable to work, unable to leave bed for days at a time, unable to continue their lives as they knew it before.

My husband and I are rapidly falling into the incredibly frustrating, ambiguous category of ‘unexplained infertility’. Approximately 25% of all couples who seek assisted reproductive technologies (anything from a simple ovulation-induction pill to full blown out IVF-ICSI cycles) are eventually diagnosed with ‘unexplained infertility’. In more practical terms, the diagnosis means that the doctors don’t know why we can’t conceive. Couples like us are usually quite young (late 20s or early 30s), fit and healthy (neither smokers or heavy drinkers, eat healthily and have healthy BMIs), have no genetic mutations that would prevent embryos from developing, and eggs and sperm look perfectly normal under the microscope. The woman’s fallopian tubes and uterus look perfect, and there is no endometriosis (abnormal growth of the uterine lining). ID-100187836Sometimes there are underlying issues, as in Polycystic Ovarian Syndrome, but this condition is so common that one in four women suffer from it, and obviously, most of them conceive without problems. In reality only one in six couples will ever seek fertility treatment, and the majority of these are overcome without needing to resort to IVF at all. In the cases of ‘unexplained infertility’ doctors, embryologists, scientists and researchers are unable to answer the question of why embryos don’t grow. They simply know that they don’t, or haven’t yet.

One day I hope to be able to update this story. I hope to be one of those ‘success stories’ that offers others inspiration that ‘miracles can happen’. This doesn’t necessarily mean I will have my own genetic children. Some of the most inspiring people in my world have found their children through donors, surrogates and adoption. One of these women gave me the best gift anyone has ever given me, in a few simple words. She said:

No matter what happens, I am here to tell you that there is light at the end of the tunnel. Relief is coming, either way.’

It is that that I cling to in my darkest moments, when I am no longer sure it is all worth it. That is also what I want to offer to all the women and men who ever feel utterly, desperately lost to this process. Relief is coming. In the meantime, through the wait, try to dance. Dance literally and figuratively, especially in the rain. It really helps.

Fertility Yoga Sequence

ID-100281585When we practice yoga for fertility, we are cultivating both the physical space and strength in our bodies to begin new life, as well as the energetic and spiritual space to create a family, new relationships and home for ourselves and our loved ones. Think of it as furnishing your own body and mind, just as you would furnish a house, to turn it from an safe but empty space, into a warm and comfortable haven. Inside this haven you are free to create in so many senses: create a new project, create a new baby, create a deeper empathy with yourself and others. Try the following simple sequence at home, holding each pose for at least 15 breaths. The sequence is for both men and women, and will benefit both. It will calm the nervous system and allow you to drop further into you rest and digest, or parasympathetic nervous state, moving away from fight or flight, or sympathetic nervous system. For this reason it is best done when stressed, or before bed. Once your body has done these poses, it will further understand that it is safe to relax, to rest, and from that place be free and open to create your dreams. If you would like to join me for a fertility class, please get in contact at info@flyingdragonyogis.com.au. Happy practice!

Viparita korani (Legs up the wall, or without the wall, hips supported by pillows/blankets/bolster/block. If without the wall, make sure your legs can balance above the hips easily, so there is very little muscle tension holding you here).

Hip crease opening (With the pillows/blankets/bolster/block under your tailbone, let your shoulders and feet drape to the earth, so that the front of your hips has a chance to open. Focus on making your body as long as possible).

Bridge (With or without pillows/blankets/bolster/block under the soles of your feet lift the hips up to the sky. Squeeze heels towards shoulderblades and shoulderblades towards heels).

Suptabadakonasana (With or without pillows/blankets/bolster/block under the outside edges of your feet, place the soles of your feet together and let your legs fall open in a diamond shape. Breath into your belly).

Squeeze both knees into chest (Roll around drawing circles on the floor with your low back. Massage into the vertebrae of your spine and allow the nerves that run up and down your back to release.)

Happy Baby (Draw both knees out wide and pull them down to either side of your torso. Take your hands around your calves or feet, or use a blanket/towel/strap to wrap around your feet to hold onto. Draw your tailbone and your knees down to the earth. Relax your shoulders).

Savasana (Relax your legs and arms down to the earth to lie still on your back for full relaxation. This is the most important part of your practice – be patient and trust it to work its magic on you. If you don’t find yourself relaxing into it at first, simply ask yourself to keep moving towards peacefulness, away from your distracting thoughts, and slowly, over time, you will find that it gets easier and more joyful to feel completely still, in body and mind).

New Fertility Yoga Classes – Starting July 24th

I’m excited to announce that we have more fertility yoga classes starting on June 24th! Now, in addition to the classes that you can attend at Genea, in Kent St, you can attend classes at Yoganic, Willoughby.

fertility yoga flyer dl

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