Saturday 21 October 2017

How author Fiona McPhillips and RTÉ meteorologist Joanna Donnelly set up charity that provides IVF for free

Infertility affects an estimated one in six couples, but IVF comes with a hefty price tag and treatment is not available on the public health service. Pomegranate provides financial assistance to couples trying for a child

Joanna Donnelly
Joanna Donnelly
Stock photo
IVF
Nicky Murphy from Bree with his wife Sara and21-month-old Noah. Photo: Patrick Browne

Penny Jenkins

The Baby Makers, which concluded last night (Monday) on TV3, gives a rare window into the IVF journey of Irish couples. Charting the difficult reality of assisted human reproduction, viewers see the emotional and financial impact on people who are desperate for children.

It's estimated that infertility affects one in six couples in Ireland with around 8,000 people seeking help to conceive every year. The average In Vitro Fertilisation (IVF) treatment starts at between €4,000 to €5,000 and is not available on the public health service or extensively covered on private health insurance policies, creating what has been dubbed a two-tier system.

It was this disparity that inspired author Fiona McPhillips from Clontarf, Dublin, and RTÉ meteorologist Joanna Donnelly, from Portmarnock, to set up Pomegranate, a charity that provides IVF free to medical card holders. They met online 10 years ago while going through IVF for secondary infertility, where couples struggle to conceive after having one child. Happily, their treatments were successful and both went on to have subsequent children. Fiona and husband John are now parents to James (13), Anna (9) and Harry (7), while Joanna and husband Harm have Nicci (14), Tobias (9) and Casper (7). However, neither woman could forget those who didn't get the chance to become parents, simply because they couldn't afford it.

"Joanna and myself had similar stories. She had a child without any problems, went through IVF for her second child then had a third child without any help," Fiona says.

"In my case, we had our second child through IVF and needed a little bit of help to have our third. Afterwards we both felt that we'd got one for free and we should try and help other people.

"Joanna wanted to sponsor a couple through treatment at the Sims Clinic, I said I would do a sponsored run and donate anything I raised to Sims. We thought we would sponsor one, maybe two, couples, but there was such a huge response from people looking for help and donating that we set it up properly as a charity by the end of that year."

The friends run Pomegranate, named after the fruit that is a fertility symbol in many cultures, from their kitchen tables, meeting regularly to catch up.

"This is just something we do in our spare time, we don't have premises and we don't take expenses. All money comes from donations. We usually help three to four couples a year and that can go up to nine if we get a big donation. It's not a lot, it's still a drop in the ocean."

All treatments are offered through Sims, the clinic featured in the TV3 documentary. Sims subsidises Pomegranate's work by taking a flat fee of €4,600 for each cycle and covering all additional costs.

One couple featured in the first episode of The Baby Makers were Deirdre and Stuart from Limerick, whose treatment was funded by Pomegranate. Having suffered multiple miscarriages since 2009, they had 'miracle child' Josh in 2015 but had struggled to conceive naturally since. Their journey ended in heartache with viewers seeing the moment they heard their embryo had failed to thrive and that the treatment would be stopped before implantation. It was a blow, especially as Deirdre had said the treatment was the "last chance saloon", as without Pomegranate's support they would never have been able to afford it.

"That was a pity as Deirdre seemed like such a good candidate," Fiona says. "She would've been one of the women who kept in touch. It's tough when it all goes to plan up to a point, then stops."

Making the call to tell the lucky couple they've been selected is a bittersweet moment for Joanna and Fiona, who says: "For every couple we can help, there are 49 we can't. It is rewarding but we're not providing people with any guarantees, we're just giving people the chance to do something they should be able to do on the health service.

"We have three criteria: you have to have two full medical cards or, if you're a single person, one; you have to have been recommended by your doctor; and this has to be your first attempt at IVF. We don't have the resources to means test people or to judge who's worthy and who's not, and it's not something we want to do anyway.

"Any time we run a lottery we have about 50 couples trying for one cycle of IVF," Fiona says. "Some people leave the list when they get pregnant or scrape the money together on their own or just can't stay on the treadmill of trying anymore. Then more people join looking for help. A lot of people are travelling abroad, especially to clinics in the Czech Republic or Spain."

As the show lays bare, surely this would be a very difficult procedure to undergo away from home? Fiona agrees: "Absolutely, and it takes so long. In a lot of cases you need to find a clinic or a doctor here who will do weekly scans and so on because IVF lasts three months in total. When you get your results, especially if it's not what you want, you're nowhere near your medical team or family support."

Since it was set up, 10 Pomegranate babies have been born that Fiona and Joanna know of. It's difficult to gauge as many couples decide not to keep in touch.

"A lot of people are very private, once they get their funding, we never hear from them again," Fiona says. "Other people are emailing every week, telling us how their cycle is going and others send in birthday and Christmas photos every year.

"People reach out when they want to and you have to be there for them. I remember what it's like even though it's been quite a few years for me. You never forget. It brings you right back when they say something has been really hard. You don't ever forget that feeling."

As well as revealing the raw emotions of IVF, the documentary opens our eyes to the industrial nature of the process, with talk of viability, freezing, defrosting, harvesting, overstimulating and extraction. While Fiona accepts that these terms may be uncomfortable for some, she welcomes any conversation that challenges stereotypes about IVF. Especially the idea that most people seeking help are 40-something couples.

"I think there's definitely a lot more talk about it than when I was going through it 10 years ago," she says. "People are more open about it and everyone knows somebody who's going through it.

"That's great in that it's a lot more normalised, but attitudes towards funding don't seem to have changed. Everyone's fighting for resources, so people will say, 'Well, why should I pay for your lifestyle, or your choices, why should I pay for other people's children?'. The big thing we try to get across is that it's not a choice. Nobody chooses to be infertile. It's heartbreaking to see a couple in their 20s or early 30s who've just been told, 'You're young, go off have fun trying,' when they've been trying for several years. It's definitely not taken seriously. It's just as hard for someone in their 20s as it is for someone in their 40s.

"Nobody chooses to have a medical condition and infertility is a medical condition, as defined by the World Health Organisation." Ireland is one of only two European countries that doesn't offer IVF on its public health service, the other being Lithuania.

As well as opening up the opportunity to everyone to be parents, it's argued that making IVF available on the public health service would usher in much-needed regulation of the multi-million euro sector. In May this year, Professor Sean Daly, an obstetrician and gynaecologist at the Coombe, told the Oireachtas Joint Committee on Health: "There are a growing number of infertility services, and couples who require infertility services are really a very at-risk group. These people desperately want a baby and they will do virtually anything to get one. They will go to anyone who professes to be able to help them achieve that. Unfortunately, there is a wide variety of infertility services available in the country."

In September 2016, it was announced that the Government would introduce a State-funded IVF scheme "within months" and that a legislative provision on assisted human reproduction (AHR) would be published this year. On September 19, the Government included the Assisted Human Reproduction Bill in its autumn session legislative programme, stating work to provide a legislative framework for the regulation of AHR practices and associated research was underway.

In a statement two weeks ago, the Department of Health said: "The Minister for Health considers the introduction of new legislation on assisted human reproduction (AHR) and the development of policy on public funding for AHR treatment to be a priority for 2017.

"Work on the General Scheme of an Assisted Human Reproduction Bill is well advanced in the Department of Health and the minister is expected to bring it to Government shortly.

"In addition, the Health Research Board (HRB) was engaged in 2016 to conduct a comprehensive review of international public funding models for AHR. The completed HRB evidence review was published in March of this year on both the Department of Health's and the HRB's websites.

"This evidence review examines the public funding mechanisms for AHR in different countries. The review looks at the associated costs and benefits for the funder, provider and patient, the criteria for accessing the public-funded service and the basis for these criteria in different jurisdictions.

"The HRB evidence review will be analysed by officials in the Department of Health in the context of considering policy options for a public funding model for AHR treatment. It should be noted that any funding model that might ultimately be introduced would need to operate within the broader regulatory framework relating to AHR."

For Fiona, proper legislation in the area can't come quickly enough. "We need regulation to define how these things work so that it's not up for debate," she says. "It may be a personal, moral issue, but it shouldn't be a medical one. Running Pomegranate is something we wish we didn't have to do, it's something that we're hoping will be put out of business by the Government at some stage in the future.

"In no other condition does anyone else get to decide who has the treatment, no one except doctors get to decide if Mary down the road gets a new hip, that's not the way it works. This is a medical condition and any civilised health service should cover it.

"In the meantime, there are couples who need treatment now... and before long it will be too late for them."

* Part four of The Baby Makers airs tonight at 9pm on TV3. For more information, check out pomegranate.ie, Sims.ie, National Infertility

Support and Information Group: nisig.com.

'Our IVF was free but it takes everything you have emotionally'

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Nicky Murphy from Bree with his wife Sara and21-month-old Noah. Photo: Patrick Browne
 

'I had leukaemia when I was 24 and before I had full body radiation, my sperm was stored. Having a baby wasn't something I really thought about - me and Sara had only been going out about a month.

It would have been so tough to save for IVF on our own. I'm not working, I've been ill and have had a hip and shoulder replacement. At the time, Sara was working in the office at the local school and there's always something - your car goes wrong or something - that needs money.

We didn't know about Pomegranate until Sara was on her sister's hen night. One of the girls was a nurse and mentioned it to her.

We applied to them in August 2014 and Noah was born Christmas 2015. We just got lucky.

I was sick for so long and could only watch while she had to give herself the injections, but we were very positive. We'd been told we were good candidates, but we were given no guarantees. They were very honest and open. Our doctor said you could see in their faces the people who'd been trying for a long time compared to us, we were so positive.

I found it very emotional. The pregnancy test was a huge moment. We were supposed to wait until the next afternoon but we couldn't and did the test that night. We didn't tell many people, but our families knew we were having IVF. We told them we were due to do the pregnancy test three days after we actually did - to give ourselves time to get used to the news. If it wasn't good news, we wanted time to take it in - as it was, we had three days to get used to the idea we were going to be parents.

I know IVF was free for us, but it takes everything you have emotionally. If it doesn't work out you're not thinking about losing money, you're losing emotionally. I don't know how we would have coped if it had been a negative. I don't know when we would've got the chance again.

Pomegranate is doing brilliant work - Sara ran the 2014 mini marathon to raise money for them to give something back. Infertility is something you can't control. I nearly died when I was in St James's when I was sick and was brought back. I've no complaints about the health system but this is something that should be available to everyone. It's life changing, it's everything.

Noah's amazing, he makes it worthwhile. For all the bad days I have, every minute with him is amazing.

We're going to try for a brother or sister for him. We're not sure how we'll pay for it, but we'll try.'

Paying for treatment in Ireland

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IVF
 

* Ireland is one of only two European countries that doesn't offer fertility treatments on the public health service, however there are limited financial supports available.

The Government offers 20pc tax back on medical costs for taxpayers and supports the drugs needed for IVF through the Drug Payment Scheme.

Some private health insurers - including Laya, Irish Life Health, Glo Health and VHI - have introduced policies that offer financial support to women who undergo fertility treatment. However, these are limited to certain plans, while others only cover treatment at certain clinics. Visit hia.ie to search policies.

* Rotunda IVF (formerly HARI) offers free treatment to couples referred to its clinic by the Rotunda Public Hospital. There is no waiting list once referred. Rotunda IVF spokeswoman Kathleen Chada advises patients to discuss being referred to the Rotunda Public Clinic with their GP.

"There is currently a two-and-a-half-month wait for an appointment at the Rotunda Public clinic. We provide one funded cycle for couples with a medical card, subject to additional criteria. This is in conjunction with the Rotunda Hospital. It is not a Government-funded programme, but funded by the hospital and ourselves. There are limited conditions in place including around smoking, drug use and the number of children the couple have together. We have a notional figure of 65 patients a year but, to date, we haven't refused a patient. This represents eight to 10pc of the total number of patients treated by Rotunda IVF," Kathleen said. Contact rotundaivf.ie.

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