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Australia Your IVF Success website helps patients estimate chances of having a baby, but does it go far enough?

21:25  16 february  2021
21:25  16 february  2021 Source:   abc.net.au

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a person standing in front of a body of water: Kit LeClaire, who has been on her own IVF journey, says the website is a step in the right direction. (ABC News: John Gunn) © Provided by ABC Health Kit LeClaire, who has been on her own IVF journey, says the website is a step in the right direction. (ABC News: John Gunn)

"I would describe the experience as feeling quite unprepared, isolated and alone, to be honest. I would describe it as a really lonely time," said Kit LeClaire, when asked about her fertility journey.

For most patients, IVF is an emotionally and physically draining experience.

Ms LeClaire started on her path in 2016, seeking information from her GP and specialist while also doing her own research.

So when she heard about a world-first government-funded website that launched on Monday, called Your IVF success, which promises to help IVF patients estimate their chances of having a baby and compare clinics around the country, she was keen to find out more.

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Almost one in 20 babies in Australia are born through IVF, with some patients or couples who struggle to conceive spending hundreds of thousands of dollars in the process.

Success rates depend on a range of factors, but any physical or emotional trauma experienced during the process — as well as multiple unsuccessful pregnancies — can leave marks for years to come.

Today, Ms LeClaire is passionate about advocating for women going through IVF.

Not just because of her own lived experience, but because based in Sydney, which connects many women together who are on their own fertility journey.

It is both an in-person and online service, allowing women to connect to others all over the country.

"They share information, they share experiences. It's really critical and it's shown to be such a beautiful place and such a joyful experience for women in what is a very challenging time in their lives," she said.

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So, what does the new website offer?

In the past, there really hasn't been a one-stop shop for IVF patients to compare clinics across the country, based on their own needs, in an independent and convenient way.

The Your IVF Success site aims to address a lack of information and clarity in the IVF industry, which SA Senator Stirling Griff has long advocated for.

In a press conference on Monday when the site first launched, he said the website would prevent infertile Australians from "flying blind" when choosing a clinic.

Patients can go to , with age and pre-existing medical conditions factoring into the estimator.

There's also a section that allows you to and their success rate.

Professor Georgina Chambers, director of the National Perinatal Epidemiology and Statistics Unit at the University of NSW, who helped develop the website, said it had been created with "extensive consultation from the IVF sector and consumers".

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"Ninety-two per cent of eligible clinics have consented to having their data on the website," she said.

But already there is criticism from experts and patients that the government-funded page does not go far enough.

Associate Professor Louise Hull, a fertility specialist at the University of Adelaide with her own private practice, believes the website is transparent enough, but raises concerns around comparing clinics.

"The thing that is concerning is that sometimes doctors won't treat difficult patients because that would lower their pregnancy rates," she said.

"So one thing to do to keep your rates up would be to only take young people. Or encourage people who don't need IVF to have IVF."

She also raised concerns around the fact that the data was gathered in 2017, which "isn't ideal".

"The data is a little bit out of date, it's really important to understand that when you look at the website," she said.

"You can have different staff changes and different results over a three- or four-year period."

She also says doctors involved are "very aware" that using broad data doesn't necessarily give you the nuances or level of care you may need.

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"I think probably [the website] will get better and they'll change those parameters," she said.

What do women who've been through IVF think?

Ms LeClaire welcomed the idea behind the website, but believed specialists often determine a patient's experience, rather than the clinic itself.

Reflecting on her own experience, she could appreciate the website and how it would benefit many.

"[For me], it would have been a nice starting point to have one place to visit that explained IVF in really simple, clear terms and then you can see all the clinics based on their radius to you and their live birth rates, you can see how they're performing," she said.

"In the end, I think the key things are around your specialist and it doesn't capture that. And that's a really big factor."

As a "big-picture thinker", Ms LeClaire said it was shame the website's IVF success estimator didn't have a more holistic approach to all of the health factors that would contribute to someone's fertility, rather than focusing on age and pre-existing conditions.

She'd also like to see funding spent on researching diseases that cause infertility — and around educating younger people about fertility preservation.

Just like Ms LeClaire, other women we spoke to were glad to see more information out there, but didn't feel it went far enough.

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Colleen, from Queensland’s Sunshine Coast, started her fertility journey when she was 36, and is now coming to terms with the reality that at 47, that journey is coming to an end without the desired result.

"After all the transfers and all the cycles, we've spent a lot of money. We still don't have a child," she said.

"But they keep throwing you this hook of hope."

She said that in her experience, people tend to choose clinics and specialists based on anecdotes. And for that reason, she felt the website probably won't be the be-all and end-all for people.

"The other thing that's really hard with IVF clinics is you've got to be careful what you're rewarding. If a particular clinic takes on difficult cases, it'll make their stats look bad. Do you want to reward people who just turn people away?" she said.

Athena Donohue, who lives in Melbourne, has an almost-four-year-old daughter now. She began her IVF treatment in 2016.

At the beginning of her journey, she felt she had to "dig pretty deep for stats".

But she wasn't convinced statistics necessarily sway people.

"Everyone is so different. Overall, it's probably better for that [information on the website] to be available than not," she said.

"Many people have issues with a clinic, yet stay there because of their specialist.

"I feel there'd have to be two parts [to the clinic information]: the clinic and culture of the clinic, and the fees, and whether the clinic has donor eggs, or a donor bank… and a separate section for the actual specialists.

"Specialists could leave the clinic and it changes everything."

Ms LeClaire was passionate about ensuring women felt emotionally supported and connected during a very vulnerable time.

She wanted others to know they're not alone and there are many women just like her who understand what they're going through.

"We have a basic human need to be understood and to belong and IVF and infertility is a time in your life when you feel very isolated," she said.

"Some women don't feel open to talking to other people about it because there's still a little bit of stigma and taboo around it, so our community [Together We Wait] offers a place for women to belong and support one another."

Her final advice to others was relatively simple.

"Do your research, seek support and talk to people who have been through it," she said.

"Ask all the questions of your fertility specialist — there's no such thing as a dumb question. Empower yourself with research."

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