Précis

"All our savings go to IVF…Then you get that negative pregnancy result. There's another $6,000 gone." Grace

Grace is one of the tens of thousands of Australian women who have put their faith in fertility treatments to help conceive a much longed for baby.

"Sometimes I feel like I'm a fraud of a woman. I look like one, but my body just isn't doing what I want it to do, which is to fall pregnant and have a child." Grace

At 42, she's been through six unsuccessful rounds of IVF. The physical, emotional and financial toll is huge.

"One of the hardest things is knowing when to get off the bus, like knowing when to stop, because I think there's that 'what if it's this next time', one more time?" Grace

Julia too, had dreams of becoming a mother, undergoing 8 rounds of fertility treatment.

"I had this longing to have a child ...I was hopeful that I would be one of the lucky ones." Julia

And while she willingly put her body in the hands of fertility specialists, she struggled to get a clear answer on just what her chances of having a baby actually were.

"It's regrettable that I got the more optimistic answer. I would've just preferred a more accurate answer." Julia

Four Corners looks at the booming business of fertility, where the Australian industry pulls in more than half a billion dollars in revenue annually and is expanding overseas: to the UK, Asia.

The program asks whether clinics are giving women clear, unambiguous advice about their chances of giving birth.

"I think with the commercialisation of IVF that's occurring, there's a pressure in every single clinic to use IVF more and IVF brings in more money for a clinic." Fertility Doctor

Many fertility specialists say it's up to individual women to decide how much treatment they can take.

"Embryos are like mud. You keep putting embryos on the wall of the uterus, eventually one will stick." Fertility Doctor

But as this report shows, there are concerns, even from industry insiders, that some women undergoing IVF don't actually need it. Others warn against the practice of up-selling - where women are sold expensive and unproven treatments that one doctor says are akin to snake oil.

And disturbingly, they also have concerns about the potential harm fertility treatments could be causing for women - including potential links to cancer.

Baby footage

Music

00:10

Grace 100%. Super:
GRACE LOCOCO

GRACE LOCOCO: Sometimes I feel like I'm a fraud of a woman. I look like one but my body just isn't doing what I want it to do: which is to fall pregnant and have a child.

00:19

Grace Lococo and Damien Milloy prepare dinner in their kitchen

GRACE LOCOCO: Actually, Damien, do you want to put some oil in the pan?

00:30

SARAH DINGLE, REPORTER: Like thousands of couples across Australia, Grace Lococo and Damien Milloy are pinning their hopes on IVF.

00:33

DAMIEN MILLOY I couldn't swap my shift tomorrow, so I'll be home tomorrow night. Yeah?

GRACE LOCOCO: Oh, really? OK.

00:42

SARAH DINGLE: After one-and-a-half years of treatment, they've once again received some devastating news from their doctor: another IVF cycle has failed.

00:46

Grace in kitchen

GRACE LOCOCO (fights tears): It's... It's a loss of hope and it's a silent grief. You know, it's this hope that you, you had that you would have a pregnant- a positive pregnancy test result. And to not have that: it's hard.

00:58

You know, it's just disappointing that that opportunity has gone for us now.

SARAH DINGLE: And do you have a lot of "what ifs" playing in your head?

01:19

GRACE LOCOCO (laughs): Oh, you play the "what if" game all the time: like, all the time. "What if I do this? What if I do," you know, "What if, like, we don't eat organic fruit and vegetables," (laughs) which we don't even particularly enjoy; or, "What if this doesn't work? What if we don't get the opportunity to, to parent?" (Cries) And that our dream doesn't come alive?

SARAH DINGLE: And that happens every time?

01:27

[shot continuous]

GRACE LOCOCO: Every time. And you do it in silence, because it's unacceptable to talk about it, other than to the people that you trust with that information. And people don't understand. They just say, "Oh, there's always next time." Why don't you adopt? Why don't you do this or that? And people have no idea. The desire to... to fall pregnant with your own child and carry your own child and to be able to parent a child is so strong. And when, you know, you try everything that you can and you're no further closer, it's just heartbreaking.

01:53

Grace Lococo preparing syringe. She injects hormone into her belly

Music

02:33

SARAH DINGLE: Grace is 42. As part of her IVF treatment, she injects herself daily with hormones to stimulate egg production.

GRACE LOCOCO: If I have a child, I want to bring that child into the world in a healthy, loving relationship.

02:37

Grace 100%

And I wasn't in that relationship until I met Damien, which was when I was 39.

02:55

Pan left from flowers to Grace and Damien

SARAH DINGLE: Grace and Damien are using a sperm donor, because Damien has a rare genetic condition.

03:04

Damien 100%. Super:
DAMIEN MILLOY

DAMIEN MILLOY: The possibility of passing on a genetic disorder that I do have. And that chance was as great as 50 per cent. And so through my earlier life I had spent a lot of time in hospital and had had a number of operations. And I thought, is that something that I would knowingly want to put  one of my children through: through the number of operations and time away from family? (Fights tears) So the decision was that we should not do that. Yeah, and so then the decision that we sat down was that we would use donor sperm.

03:14

Grace looking out window

SARAH DINGLE: Grace and Damien are $40,000 out of pocket after just 18 months and six rounds of IVF. Grace has never even once been pregnant.

03:57

GRACE LOCOCO: It's big. You know,

04:14

Grace 100%

all our savings go to IVF. We're lucky, you know. We both have good jobs and are able to afford it. But when you spend a certain amount on it - and it's not insignificant - and then you get that negative pregnancy result, it's just like: well, there's another... $6,000 gone.

04:16

Pregnant women

Music

04:35

GFX text: 40: Fertility treatment
Almost x 3

SARAH DINGLE: Australia's fertility industry is big business. In the last decade the biggest growth has been in the 40-plus market. The number of women over 40 having fertility treatment has almost tripled. But the odds are stacked against them.

(To Gab Kovacs) What is the biggest factor in falling

04:40

Kovacs 100%. Super:
PROFESSOR GAB KOVACS
Former Medical Director, Monash IVF

pregnant? What is the number one thing?

GAB KOVACS, PROF., FORMER MEDICAL DIRECTOR, MONASH IVF: Age. Age. That's what we keep saying. The chance of success by IVF is, by far, best dependant on your age. So - and it starts going downhill from 35 onwards.

05:01

Pregnant women

We're using a medical treatment for a social problem. We need to educate

05:15

Kovacs 100%

a population that you're meant to have children  in your early 30s, not in your early 40s.

05:19

Baby

SARAH DINGLE: The reality is: what's being sold to women in their 40s is often false hope. Based on figures provided by the industry,

05:25

Baby with soft toy.
GFX text: 43 year old woman
<3%
Success

a 43-year-old Australian woman, using her own 43-year-old eggs to conceive, has less than a three per cent chance of going home with a live baby.

05:36

Baby chewing on toy. GFX text:
>97% failure
source: National Perinatal Epidemiology & Statistics Unit

Put another way: she has a more than 97 per cent chance of failure every time.

05:46

Grace taking pills

Grace says she's never been told what are the chances of a woman her age taking home a baby.

(To Grace Lococo) A 43-year-old Australian woman

05:53

Grace and Damien

Zoom in to Grace

has a less than three per cent chance of having a live delivery per initiated cycle.

GRACE LOCOCO: M-hm.

SARAH DINGLE: What is your response to that?

GRACE LOCOCO: Ah, that's depressing. Yeah. Yeah, that's really depressing. And heartbreaking, really.

06:06

Damien

It just makes you wonder if it's all worth it.

06:28

Michael Chapman

SARAH DINGLE: The president of the Fertility Society of Australia, Professor Michael Chapman, is a former director of Virtus Health, which owns the clinic where Grace is having treatment.

06:32

Chapman 100%

Super at 06:56:
PROFESSOR MICHAEL CHAPMAN
President, Fertility Society of Australia

(To Michael Chapman) She's never been told her chances of having a live baby, which are at 43, once she hits it, are less than three percent. How is that responsible medicine?

MICHAEL CHAPMAN, PRESIDENT, FERTILITY SOCIETY OF AUSTRALIA: I'm surprised that that's the case because I certainly would be saying, giving those sort of statistics to that woman.

SARAH DINGLE: Is it misleading that she hasn't been told that?

MICHAEL CHAPMAN (sighs): Well, my experience is, when I say that, patients - women - will still want to go and have a try.

06:44

[shot continuous]

SARAH DINGLE: But she should know?

MICHAEL CHAPMAN: Yes, correct. Yeah. She should be given a realistic view of her chances.

07:13

Trounson 100%. Super:
PROFESSOR ALAN TROUNSON
IVF pioneer

ALAN TROUNSON, PROF., IVF PIONEER: Well, they're not transparent in providing the outcome data - the success rates - in a way which is, which is understandable by the patients. And I don't know why there's a reluctance not to do that. That's in the interests of the patients in knowing what the clinic is, is offering. When you go and... When you, when you go and access a service from this clinic, you should know what the outcome is likely to be.

07:18

ARCHIVAL. ABC TV IVF news story

PRESENTER (archive): The baby which is about to be delivered here is the product of space-age thinking: a baby conceived without intercourse, outside the womb, in a manner which our forebears would have condemned as witchcraft.

SARAH DINGLE (voiceover): Professor Alan Trounson is the man who made it happen.

07:44

Archival continues

He successfully replicated in humans what he'd done in sheep.

08:01

Archival continues

PRESENTER (archive): And there are complex moral, religious and legal questions.

SARAH DINGLE (voiceover): In 1980 he helped a Melbourne team of scientists deliver Australia's first IVF baby: only the third such baby in the world.

08:07

Trounson in lab

SARAH DINGLE: Trounson is now a critic of the industry he helped create and says a lack of transparency hurts patients.

08:20

Trounson 100%. Super:
PROFESSOR ALAN TROUNSON
IVF pioneer

ALAN TROUNSON: If they're continuing just to treat you and treat you and treat you until you give up, that seems really hard and unreasonable. And I think it's unfair. You know, I think it's really tough on, particularly on the women who are doing this: very, very tough. And, and so, you know, I'd rather see, you know, a different way of doing it.

08:30

Aerial. City buildings

Music

08:52

SARAH DINGLE: The fledgling industry Alan Trounson helped start is now a thriving corporatized sector, with annual revenue of more than $500 million.

08:56

GFX text over:
>$500,000,000

In Australia the baby business

09:04

City buildings

is dominated by three big players.

09:07

GFX text over:
Estimated Revenue 2015-2016:
Virtus - $225 million
Monash IVF - $140 million.
Genea - $79 million
>80%
source: IbisWorld

SARAH DINGLE: Virtus Health, Monash IVF and Genea own more than 80 per cent of the sector.

09:09

ASX board

They're experiencing strong annual growth. Two are publicly listed and all three are expanding overseas: to the UK, Asia and Europe.

09:16

Stock exchange exterior

ALAN TROUNSON: Usually doctors are terrific in my experience,

09:28

Trounson 100%

but they're part of a corporate organisation. So they're not going to give too many downsides, are they, because you may be smacked by the corporate entity, really, for doing that.

09:31

But they maybe say, "Well, you should boost this part of the, you know, the message, you know, to help attract patients."

09:43

Norman 100%. Super:
PROFESSOR ROB NORMAN
Medical Director,
Fertility SA

ROB NORMAN, PROF., MEDICAL DIRECTOR, FERTILITY SA: I think with the commercialisation of IVF that's occurring, there's a pressure in every single clinic to use IVF more. And IVF brings in more money for a clinic.

09:51

Chapman 100%

SARAH DINGLE: (To Michael Chapman) Virtus Health in its financial report for the first half of this year lists a number of key performance indicators, which include average number of cycles per fertility specialist. They all have to do with IVF cycles: numbers of cycles, profit per cycles. Why is it that nowhere in those key performance indicators is the number of live babies born?

10:04

[shot continuous]

MICHAEL CHAPMAN: Ah, I'm not involved in the preparation of that report, and so I probably can't comment.

SARAH DINGLE: But surely that is a key... that is a key performance indicator?

10:26

Super at 10:37:
PROFESSOR MICHAEL CHAPMAN
President, Fertility Society of Australia

MICHAEL CHAPMAN: Yeah. The, I mean, this... that report is aimed at the...

SARAH DINGLE: Shareholders?

MICHAEL CHAPMAN: Shareholders. And I'm sure they would like to know that we produced 10,000 babies in the last five years. Um...

SARAH DINGLE: But the profits per cycle are more relevant to them?

MICHAEL CHAPMAN: I'm afraid the shareholders have that view.

Nitrogen technology lab sequence

SARAH DINGLE: Many of the key techniques in fertility, including frozen egg technology, were pioneered by Professor Rob Norman.

10:51

Now he's breaking ranks with the fertility industry. After almost three decades, Rob Norman has reached a startling conclusion.

11:01

ROB NORMAN: Well, you may not need IVF in the first place.

11:11

Norman 100%. Super:
PROFESSOR ROB NORMAN
Medical Director,
Fertility SA

And there's the phenomenon of an IVF treadmill: that you just keep running on it and you just can't get off.

11:14

Nitrogen technology lab sequence

SARAH DINGLE: Rob Norman says some of the tens of thousands of women who are undergoing IVF, shouldn't be.

11:21

ROB NORMAN: My estimate is: probably 40-50 per cent of people will get pregnant without IVF.

11:29

Norman 100%

And that is by understanding their fertility window, by tracking their cycle properly, by losing weight and exercise, or having ovulation induction. So I think a large number of people who assess properly can avoid IVF.

11:35

Nitrogen technology lab sequence

SARAH DINGLE: But for the fertility industry, there's a financial incentive to treat women with the more invasive practice of IVF.

11:56

Kovacs 100%

Super at 12:10:
PROFESSOR GAB KOVACS
Former Medical Director,
Monash IVF

(To Gab Kovacs) So stimulated cycles are where the money is?

GAB KOVACS: That is the key driver of income for an IVF clinic.

12:06

Baby playing with necklace

JULIA LEIGH: I had this longing to have a child. I think it was, ah... It's a very profound question: why have a child? This is no easy answer, actually.

12:12

Julia 100%. Super:
JULIA LEIGH

I think in my case, I no longer wanted to be responsible solely for myself.  I wanted to be intimately involved in the care of another.

12:23

Baby

I mean, nobody really wants to-

12:33

Julia 100%

plans to end up in an IVF clinic, but  I did consider it as my fallback option.

12:37

Julia standing on balcony

SARAH DINGLE: Like many women in their 40s, Julia Leigh believed she could defy the odds.

JULIA LEIGH: Well,

12:43

Julia 100%

I feel that we're often hearing the success stories. And  in fact, I can't think of many stories of IVF failure out there. Look, I was hopeful that I would be one of the lucky ones. Yeah.

12:54

ARCHIVAL. Cannes Film Festival

SARAH DINGLE: In her late 30s, Julia's career was taking off. A novelist, screenwriter and director, her film 'The Sleeping Beauty' took her to the red carpet at Cannes. Julia assumed that she and her husband would start having children, but the marriage fell apart. She found herself on the wrong side of 40, visiting a fertility clinic alone.

13:10

Julia 100%

JULIA LEIGH: The way it sort of panned out, despite having gone there first at 38, was that I did freeze my eggs at 42, which I'm aware: that's... you know, that's probably (laughs) very disturbing for some people. It was a last ditch, desperate scramble. And I knew it was far from ideal at the time, but I... I just felt I had to do something.

13:36

Julia on tablet reading book

SARAH DINGLE: Julia's written a book about her gruelling journey through IVF. After years of injecting drugs, extracting her eggs and watching them fail to fertilize and grow, the physical and emotional toll has been immense. Now 46, Julia is still without the child she so desperately wanted.

14:01

Julia 100%

JULIA LEIGH: I've never cried so much. And at times I reached incredible low points: I mean, tumbling down the rat hole, you know. Um... Yeah, I really... I don't think I've ever come so low.

14:26

Julia on tablet reading book

SARAH DINGLE: Julia is critical of how little she was told about her chances of having a baby.

14:45

Julia 100%. Super:
JULIA LEIGH

JULIA LEIGH: An IVF patient  is living and breathing hope. It's... it's…You wouldn't do it if you didn't have a sense of hope. Why would you put yourself through it? So, you know, you know, bottom line is: yes, they are selling hope.

14:55

Monash IVF exterior

SARAH DINGLE: For almost a decade Gab Kovacs was the medical director of Monash IVF, the second-biggest player in the fertility industry.

15:10

Kovacs 100%. Super:
PROFESSOR GAB KOVACS
Former Medical Director,
Monash, IVF

GAB KOVACS: The secret of success is to keep trying. The phrase I use is: "Embryos are like mud." You keep putting embryos on the wall of the uterus: eventually one will stick.

15:21

Kovacs in corridor

SARAH DINGLE: Professor Kovacs is one of IVF's true believers. For him, there's no such thing as too many cycles.

15:31

Kovacs 100%

GAB KOVACS: Now, I know that if you hang in there you get pregnant, because one of my patients got pregnant after 37 cycles. And, so I encourage people to stay on. But it is more expensive now and it's stressful. And I've found it stressful consulting.

15:42

SARAH DINGLE: A woman who's been treated for 37 cycles: she's taken a lot of drugs. Where's the duty of care here?

GAB KOVACS: Well, the duty of care is to explain to her what the risks are and how small her chances were. And she- her attitude was: "I don't care how small a chance: I'm not ready to give up yet."

SARAH DINGLE: At what point would you say no? How long would you let someone go for?

GAB KOVACS: Well, you can't say no. You can't say no.

15:55

Julia 100%

JULIA LEIGH: The scary thought is that  these clinics are profit-driven and this is an industry that I feel is predicated on failure. You know, the more cycles you do, the more you fail, the more money they make.

16:16

Dingle to camera. Super:
SARAH DINGLE

SARAH DINGLE: Repeat rounds of IVF will set you back thousands of dollars - and then there's also the cost to the health system. In the last decade, the cost of fertility treatments to Medicare has doubled: to more than $250 million. In 2004, the average stimulated IVF cycle cost around $2,000; and now it's around $8,000. The Federal Government says that's because fertility clinics have increased their fees, knowing that the Government - and therefore the taxpayer - will foot the bill.

16:37

Slow motion. Women on street

Just over a decade ago the Howard government proposed putting an age limit on public funding for IVF. The idea was that, after the age of 42, a woman could only have three cycles on Medicare.

PETER COSTELLO, TREASURER 1996-2007 (2005): Well, I'm, I'm not a doctor. But doctors say

17:10

ARCHIVAL. Excerpt from Insiders, ABC TV, 24 April 2005

that the older you are for the treatment, the less the chances of success. And they also say that after a certain number of treatments, success rates decline. And this is a matter to be discussed with the medical profession.

17:27

BARRIE CASSIDY, PRESENTER (Insiders, 2005): So you'd have to put a, an age limit on it?

17:50

PETER COSTELLO: Well, obviously there is. You know, as far as I know we don't treat 60-year-old women with IVF. I'm not sure if we treat 50-year-old. And, and what, what's the reason? It's, it's not, it's not a discriminatory reason: it's just that after certain ages these treatments aren't successful.

17:51

GFX newspaper headlines over insemination

Music

18:09

SARAH DINGLE: The fertility industry lobbied furiously against the change - and the proposal to introduce an age limit was dropped.

Melinda Tankard Reist was a political staffer for former senator Brian Harradine and advised him on IVF policy.

18:11

Reist 100%. Super:
MELINDA TANKARD REIST
Women’s Bioethics Alliance

MELINDA TANKARD REIST, WOMEN'S BIOETHICS ALLIANCE: Well, as I recall it there was a significant backlash. It was: "How dare you? How dare you stand in front of a  desperate woman's right to have a child? How dare you come up against these beautiful, fat, bouncing babies?" You know, it was seen as a terrible imposition. It was seen as a denial of a woman's choice to do anything in her power t to have a baby, even despite the statistics around diminishing returns, if you like, on multiple cycles: diminishing returns on the basis of extended maternal age. These things didn't matter. The facts didn't matter. It was: you know, "You're anti-women. You're anti-baby. This is a woman's choice."

18:27

Slow motion. People in city

Music

19:12

SARAH DINGLE: Unlike other OECD countries, Australia still has no limit on the number of cycles you can claim on Medicare, no matter how old you are. Now there's even clinics which offer 100 per cent bulk-billed IVF cycles.

MELINDA TANKARD REIST: We need to remember here that repeat cycles,

19:14

Reist 100%

return customers means more profit for the IVF industry. If a woman were stop at one or two cycles, the IVF industry makes less profit; makes less money. They need return customers, so of course they want unlimited cycles. You don't have to be a genius to work that out. Of course they want unlimited cycles.

19:31

Babies

SARAH DINGLE: It's not just cycles of IVF which the industry profits from: there's also the add-ons. In the baby business, new treatments are introduced quickly: often without the gold standard of evidence to prove they actually help you have a child.

19:54

Trounson 100%. Super:
Professor Alan Trounson
IVF pioneer

ALAN TROUNSON: So: yeah, fads happen. And they happen because there's not a lot of that kind of regulation that you would expect in other parts of medicine.

20:14

SARAH DINGLE: With all these treatments on the market, some of them evidence-based and some of them not, how hard is it for patients to decide what they should be doing?

ALAN TROUNSON: I think it's very difficult. Yeah.

SARAH DINGLE: Is it a fair situation for them?

ALAN TROUNSON: I don't think it's very fair, no, because you're relying on the clinicians to help you.

20:24

Microscope/Embryo dish

SARAH DINGLE: Julia Leigh was offered a wide range of add-ons to her fertility treatment: everything from human growth hormone to a product called EmbryoGlue.

JULIA LEIGH: For some of my rounds I tried what they call EmbryoGlue, which sounds very sci-fi.

20:40

Julia 100%. Super:
JULIA LEIGH

It's meant to aid implantation. I actually don't really know (laughs) what's involved with it. Um... but yes, I did try that.

GAB KOVACS: It certainly isn't Superglue

21:00

Kovacs 100%. Super:
PROFESSOR GAB KOVACS
Former Medical Director, Monash IVF

and it doesn't actually glue the embryo on. It's just a term that was used to maybe market a new type of culture medium which was hoped to have a better success rate. But to my best knowledge that's not been proven by randomised prospective study.

21:13

Hand and embryo dish

SARAH DINGLE: Gab Kovacs says add-ons, ranging from steroids to extra hormones, are used as a marketing tool.

21:28

Kovacs 100%

GAB KOVACS: I think many doctors are using these things, first of all to give them something else to suggest to the patient; and, I guess, secondly also to differentiate themselves from other doctors in the programme, to make it seem like they're more expert and that patient would have a better hope going with them.

SARAH DINGLE: It seems quite cavalier to give a patient more hormones, just so you can differentiate yourself in the market?

21:38

Kovacs 100%

GAB KOVACS: Yes, well I don't really approve of that. I think it's  one of the saddest things that's happened: is that people are using these things, possibly for marketing, without it being medically proven that they make a difference.

22:01

SARAH DINGLE: You've even said there's a lot of snake-oil salesmen?

GAB KOVACS: Yes. That's, ah... it's the "in term" in IVF for those sort of add-ons: this, you know... it's like snake oil: that people take it, hoping it works without the evidence. So I really don't approve of that technique.

SARAH DINGLE: I mean, that doesn't inspire a lot of confidence in the industry?

GAB KOVACS: Well, unfortunately the patients are the ones who are pushing for it.

22:13

Julia 100%

JULIA LEIGH: I did find the, the experience very, ah, bamboozling. And I got quite frustrated at times when, a doctor would say, you know, "It's up to you." You know? And it's like, I have no medical experience. I have no medical experience. Like... why should it be up to me? Yeah.

22:35

Reist 100%. Super:
MELINDA TANKARD REIST
Women’s Bioethics Alliance

MELINDA TANKARD REIST: Well, look, I think it's outrageous because you're talking about women's lives. And the whole "right to choose" mantra - the ideology around choice - masks the reality. How do women make informed decisions about these technologies if they're not told the truth?

22:59

Computer screen with natural killer cells

SARAH DINGLE: Julia was prepared to do whatever it took

23:13

Julia at computer

to get pregnant. But she drew the line at suppressing her immune system for three months. using an add-on called Natural killer cell treatment.

JULIA LEIGH: The protocol would've been to,

23:18

Julia 100%

go on a steroid for three months: to suppress my immune system for three months; and at the same time take a blood thinner. And  I was pretty horrified by this, because that's an incredibly aggressive intervention on the body. I think IVF, plain and simple, is an aggressive enough intervention. And this was just, um... It was just, it was just frightening. Yeah.

23:31

Kovacs 100%. Super:
PROFESSOR GAB KOVACS
Former Medical Director, Monash IVF

GAB KOVACS: I think probably most IVF doctors would have used it sometimes. And again: there's a lack of information to show that it does any good. So I think that's a real example where we're treating something that we maybe don't need to.

SARAH DINGLE: When it comes to new treatments being introduced, where are the brakes in this industry?

24:04

GAB KOVACS: The brakes are not to use treatments that are not safe. There are- well, to really...

SARAH DINGLE: Are there any brakes?

GAB KOVACS: Well, really, there aren't. It's really up to the individual doctor what he or she prescribes. And apart from having scientific meetings and having some guidelines, I think that really it's up to the individual doctor.

24:23

Chapman 100%

SARAH DINGLE (to Michael Chapman): Why are you dispensing these treatments if it isn't proven that they work?

MICHAEL CHAPMAN: Patients are really demanding. Patients want something to happen.

SARAH DINGLE: But they can't access these treatments without you recommending them. You are the gatekeepers. Why don't you adhere to evidenced-based medicine?

24:44

[shot continuous]

Super at 25:15:
PROFESSOR MICHAEL CHAPMAN
President, Fertility Society of Australia

MICHAEL CHAPMAN: Because patients will go to all lengths to get a pregnancy. They will suggest things.

SARAH DINGLE: But you are the gatekeepers. You don't have to let that happen. Where is the duty of care here?

MICHAEL CHAPMAN: If I'm not doing any harm and I may do good - and I don't know whether I'm doing good or not - but if I do no harm, I feel comfortable in prescribing a treatment if the patient thinks that that's going to be of assistance to them.

25:00

Woman holding baby

Music

25:27

CARLY LEE: It can be hard watching other people have kids, definitely, especially when it's something that you want for yourself. In the time that

25:30

Carly 100%. Super:
CARLY LEE

we've been trying, I've watched many, many, many friends and family have babies. And you know, we've got, we've got friends that have even had two and three kids in the time  that we've been trying.

25:40

Carly and Rob looking out over lake

SARAH DINGLE: Melbourne couple Carly and Rob Lee have been going to an IVF clinic for six years. They're still without a child.

25:54

ROB LEE: I feel like sometimes, just going in, they're just trying to make a dollar really quickly sometimes. I feel like they don't give you enough information. They don't go over things with you thoroughly.

26:06

Carly and Rob. Super:
ROB LEE

They don't look into how everything's have been going on. It's just - or even tell you what they want to do next. It's just; "Yep, take these drugs and goodbye."

26:20

House exterior

SARAH DINGLE: Carly and Rob bought this three-bedroom house on the outskirts of Melbourne in preparation for the family they wanted to start.

26:31

Carly shows Dingle collection of baby clothes

It's filled with baby clothes - but there's still no baby.

CARLY LEE: Yeah, so these are some of the things that I've been collecting over the years.

26:42

SARAH DINGLE: Did you get most of this stuff at the start? Or...

CARLY LEE: Yeah. I'd say so. A lot of it we got in the beginning when we first started trying. I haven't even opened these boxes for probably two years.

26:52

SARAH DINGLE: Why not?

27:07

CARLY LEE: It's just been too hard. So, yeah. It's just easier just to kind of pack them away. I've even considered getting rid of everything. So it's sort of a constant- Sometimes I feel like they could be lingering and be a bit of bad luck. So who knows? It might happen. I don't know. I might give them to somebody else and see, see what happens.

27:09

Rob and Carly looking out over lake

SARAH DINGLE: Rob is 33 and Carly just 28. Carly has a relatively common condition, known as polycystic ovarian syndrome, which occurs in up to one in five Australian women and can affect fertility.

27:29

Carly and Rob walk with dog

Carly and Rob had high expectations of IVF.

27:47

CARLY LEE: So yeah, it was really interesting the first time that we went, full of a lot of hope and expectation. And we were certainly promised a lot.

27:53

Carly 100%

We were sort of told that, you know, not to, to stress; and it would be quite easy. It was October and  the specialist said that, you know, I'd be pregnant by Christmas. So... yeah.

28:04

Hormone injections

SARAH DINGLE: Carly did four rounds of hormone injections over four months. When that didn't work, she was put on full-stimulation IVF, which involved even higher-dose hormones: a treatment which some experts say women with her condition should avoid if at all possible. Carly was sick for weeks. She couldn't even sit down without pain.

28:17

Carly 100%

CARLY LEE: Yeah. So extremely bloated. It sort of feels like you've got, like, grapefruit in your uterus. So you sort of can feel every, every movement. It feels like having a really, really full bladder, kind of all the time. And you can feel, like, when you breathe or sit down. And, yeah. Like, there's a lot of pressure.

SARAH DINGLE: Professor Rob Norman says women like Carly with polycystic ovarian syndrome

28:43

Syringe/Hormone injection

are at greater risk of over-stimulation from full IVF cycles - which, in extreme cases, can be fatal.

(To Rob Norman) And you try and avoid IVF for those women if at all possible?

ROB NORMAN: Yes, I do.

29:12

Norman 100%. Super:
PROFESSOR ROB NORMAN
Medical Director,
Fertility SA

Because IVF is more dangerous for those women. They're very likely to produce many eggs and have a condition called ovarian hyper-stimulation syndrome. And this is the most feared result of IVF. You can end up in hospital, feeling pretty sick.

29:26

So I would estimate more than 90 per cent of patients with PCOS who can't get pregnant will respond to simple treatment.

29:42

Reist 100%. Super:
MELINDA TANKARD REIST
Women’s Bioethics Alliance

MELINDA TANKARD REIST: I mean, the facts are that women are at risk of, of hyper-stimulation, they're at risk of blood clots. They're at risk of ectopic pregnancy, miscarriage, stillbirth. They're at risk from the side effects of the fertility drugs. Their babies are at more at risk of congenital abnormalities and deformities. But again, the facts don't matter when we're talking about babies, right? There is no long-term follow-up of women who have undergone IVF. We don't know how they end up. We don't know the long-term impacts. There's no measuring of that.

29:51

Baby nursery

GFX over:
x 2 Likely to be stillborn
X2 Likely to die

SARAH DINGLE: We also don't know the long-term impact on children born of IVF. There are concerns around what happens at birth. A major South Australian study found that, when compared with a naturally conceived baby, a baby born from fertility treatments is around twice as likely to be stillborn and twice as likely to die within its first month of life. That research was led by epidemiologist Michael Davies.

MICHAEL DAVIES, PROF., EPIDEMIOLOGIST, UNIVERSITY OF ADELAIDE: We found that there was a comprehensive disadvantage for the

30:24

Davies 100%. Super:
PROFESSOR MICHAEL DAVIES
Epidemiologist, University of Adelaide

children born from assisted conception, in terms of their risk of extreme prematurity, extreme low birth weight; but then also the catastrophic events of stillbirth and neonatal death. So it wasn't an isolated adverse outcome; it was a whole profile of disadvantage.

31:00

Pregnant women. GFX over:
1/3 more likely to develop ovarian cancer.
Source: Institute of Child Health

SARAH DINGLE: Last year a large-scale British study of more than 250,000 women found that those who had used fertility treatments were a third more likely to develop ovarian cancer. And researchers couldn't rule out a link between the two.

31:20

GFX over: “IVF treatments pose a significant risk of subsequent long-term ovarian and uterine cancer.”
Source: Ben Gurion University, Israel.

SARAH DINGLE: And a recent peer-reviewed Israeli study of more than 100,000 women, followed over 25 years, found that “IVF treatments pose a significant risk of subsequent long-term ovarian and uterine cancer."

31:37

Davies 100%

MICHAEL DAVIES: We can't ignore such a finding. I think that is inappropriate. Butt what we need to do is rather efficiently set up data linkage studies so that we can link the entire fertility histories for these women who go through IVF treatment and related therapies: link them to routine collected health records and link them to the cancer registries, so that we can quickly put together a big data set for looking at uncommon events that may take 10 or 20 years to emerge - and then also do that for the children as well.

31:52

Chapman 100%

SARAH DINGLE (to Michael Chapman): A recent 25-year Israeli study found there was a significantly increased risk of ovarian cancer and inter-uterine cancer for women who had a history of IVF treatments. How can you say, definitively there is no increased risk to women?

32:21

[shot continuous] Super:
PROFESSOR MICHAEL CHAPMAN
President, Fertility Society of Australia

MICHAEL CHAPMAN: The study referred to borderline ovarian cancers, not true ovarian cancers. There's an American study. There is a Danish study with far huger populations than those two than the --sorry, than the Israeli study, which showed exactly the opposite.

SARAH DINGLE: We asked Professor Chapman to provide us with the studies he cited, but he was unable to do so.

32:36

Dingle to camera

There are no national laws governing the fertility industry in this country. The industry is self-regulating, run by the Fertility Society of Australia. And the problem with that is when things go wrong, patients have very little redress.

32:57

Anderson 100%. Super:
ALLIE ANDERSON
Senior Solicitor,
Catherine Henry Partners

ALLIE ANDERSON, SENIOR SOLICITOR, CATHERINE HENRY PARTNERS: In my view, the fertility industry is a law unto itself because of the lack of regulation in this area and the lack of transparency and the lack of consumer protection.

33:15

SARAH DINGLE: Health law specialist Allie Anderson says women are afraid to speak out.

33:26

ALLIE ANDERSON: Oh, I think we see far fewer cases and complaints coming through our doors than we would in other areas. And I think some of the feedback that we've had from our clients has been: "Well, we're aware of at least five to 10 other women in a similar situation, but they're terrified to come forward," because there are a few big players in the IVF industry and they don't want to rock the boat. They're worried that if they say something, then they've lost all chances of having a child in the future. And often, if something does go wrong, it's more dealt with by the clinics themselves. They perhaps sweep it under the carpet and say, "We'll offer you the next round free of charge." And there is just a real culture around not making a stand.

33:33

Grace Lococo with collection of IVF-related pill bottles, placing them on the kitchen table

SARAH DINGLE: Grace is now on her seventh cycle of IVF and approaching her 43rd birthday.

GRACE LOCOCO: You do wonder,

34:29

Grace 100%

you know, am I too old?

SARAH DINGLE: Have you ever asked your fertility specialist that?

GRACE LOCOCO: "Am I too old?" Yeah.

34:45

Grace taking pills

Well, I've been told that I'm still, you know, producing eggs, that I'm still...

34:54

Grace 100%

that you know,  there's hope for me still.

SARAH DINGLE: Because you're still producing eggs?

GRACE LOCOCO: Well, he believes that just where things are going and with my results, given that there have been some slight improvements, that this is still a viable option. And I have told him to tell me when he thinks that it won't be.

35:02

Julia in garden

SARAH DINGLE: The hardest decision in IVF is choosing when to stop. After six cycles, Julia decided she'd finally had enough.

35:24

Julia 100%. Super:
JULIA LEIGH

JULIA LEIGH: So by the end of all of this, I was a complete wreck. I was completely worn down. I was worn out. It was one of the worst times in my life. And  it was my sister who said to me, "You have to find another way to be happy."

35:38

Julia and Claudia in garden with child

CLAUDIA LEIGH, JULIA'S SISTER: You know, she's my sister and I love her dearly. And, and I know her, obviously. And I think she needed just someone to share a little bit of the responsibility, at the end, of making that decision to stop. And,

35:54

Claudia 100%. Super:
CLAUDIA LEIGH
Julia’s sister

yeah, I kind of had to  play the "bad cop" and say, you know, "Your chances are so low. You know, you're just... you could go on like this forever."

36:09

Julia and Claudia in garden with children

SARAH DINGLE: After Julia finally made up her mind to stop, her doctor told her to give it another go.

CLAUDIA LEIGH: And when the doctor said, "Well, yes, if I were you I'd do one more time," it was just -- I was furious.

36:22

Claudia 100%

And I think I... I did say, "You can't." You.. you know, "You... it's not going to"- and I told her it wasn't going to work.

36:36

Julia playing with children

SARAH DINGLE: Julia took her sister's advice and told her doctor, "No." But she feels far from liberated.

36:48

Julia 100%

JULIA LEIGH: It's a defeat. You know? It's a defeat. It's... I don't, , I'm not smiling and saying, "Oh, I'm so happy I did all I could. Oh, well," you know. Like, I'm just like, I was totally and utterly defeated. Yeah.

36:59

Julia playing with children in garden

JULIA LEIGH: Crazy kids! What's with these crazy kids?

(To Sarah Dingle) When I started out, I kinda kidded myself that, you know: "I'll do all I can and if it doesn't work, then I'll be, you know, so what? I'll be restored to my... where I was." But actually,

37:17

Julia 100%

you are brought much lower at the end. You are not restored to your starting position. Yeah.

37:36

Chapman 100% Super:
PROFESSOR MICHAEL CHAPMAN
President, Fertility Society of Australia

SARAH DINGLE (to Michael Chapman): At what point does treatment become futile?

MICHAEL CHAPMAN: If you're not producing eggs, if you're producing very bad embryos, you're going to commit suicide because it's all got too much for you: um... yeah. I mean, they, they are the things...

SARAH DINGLE: Do you see people like that?

MICHAEL CHAPMAN: Absolutely.

37:43

Carly’s blog on screen

SARAH DINGLE: Two years ago, after multiple rounds of IVF, Carly became pregnant. But at seven weeks she had a miscarriage.

38:01

Carly on computer

CARLY LEE: It was...

38:15

Carly 100%

(sighs) harder than, than anything we'd been through up until that point. So it was harder than any of the IVF. I think I've often said to people, "It would've been, would've been easier if we just never got pregnant." That would've been easier to cope with. Having it, kind of -- and then taken away - was just devastating, absolutely devastating.

SARAH DINGLE: At that point, Carly almost gave up.

38:17

CARLY LEE: I think I was starting to have  a lot of negative thoughts and  didn't really feel like I maybe should've been here and going through... (sighs) Yeah, going through what we were going through. And basically I just didn't feel like my life was worth living if I wasn't going be a mother. So, yeah.

38:50

[shot continuous] Shot widens to include Rob

SARAH DINGLE: Rob, that must have been really tough: supporting your partner through that?

ROB LEE: Yes. And (sighs) it was. But then I told- basically said... that: "You're my wife." And it's more important  for me, personally, was to have her in my life, or I'd rather not have kids and make sure that she was in my life for the rest of our days. And I think that was probably the biggest words that she needed to hear.

39:28

Carly 100%

SARAH DINGLE: After the miscarriage, did your clinic, did Monash IVF offer you counselling?

CARLY LEE: No. Not at all.

39:55

Carly and Rob

SARAH DINGLE: Carly went back to see her fertility specialist.

(To Carly Lee) What did he say to you?

CARLY LEE: Basically that one in four pregnancies ends in miscarriage. And... that's it. And get back into it.

SARAH DINGLE: Get back on the horse?

CARLY LEE: Yeah, basically.

40:05

Carly and Rob

SARAH DINGLE: How did that make you feel?

CARLY LEE: Pretty insignificant, I think, in the scheme of things: like I was just a number.

40:23

Carly and Rob looking out over lake

Music

40:34

SARAH DINGLE: Carly and Rob no longer have any illusions about IVF. But they have one frozen embryo left and they're going to give it another go.

CARLY LEE: I think, going into it, you never expect

40:38

Carly 100%

that it will even take more than one cycle. You sort of feel-- very much get that impression that it's - the answer to all your prayers and that,-, you know, you just got to come up with the money and then do a cycle and, and you'll get your baby. But, yeah, that's not the case.

40:52

Outpoint

41:12

BACK ANNOUNCE There is some further commentary from Monash IVF and Virtus Health here:
http://www.abc.net.au/4corners/stories/2016/05/30/4469652.htm