Amy Gallagher and James Rowan have always known they would need help to conceive. Rowan had cancer – first at age 15, then at 20 – and the high-dose chemotherapy used to treat it destroyed his fertility. Before the first course of chemotherapy began, he banked sperm which remained frozen for the best part of two decades. When he and Gallagher got together and decided they wanted to complete their family – she has a son from a previous relationship to whom Rowan is a loving stepfather – they faced a dearth of information and options.
“I asked my GP about it and he just pointed me in the direction of a private clinic,” Rowan says. “That’s all he could do for me.”
The World Health Organisation is clear: infertility is a "disease". It affects the male or female reproductive system and is "defined by the failure to achieve a pregnancy after 12 months or more of regular unprotected sexual intercourse". In those of reproductive age, it affects men and women equally, with male-factor infertility accounting for 50 per cent of cases, according to Prof Mary Wingfield, clinical director of the Merrion Fertility Clinic in Dublin.
Yet, in Ireland, people who can't conceive without turning to assisted reproductive technology (ART) receive little or no support within the public health system. Those who need in-vitro fertilisation (IVF) and other fertility treatments to start a family will find themselves immediately paying for treatment, a situation that compares unfavourably with most of our European neighbours. In Scotland, for example, eligible patients are offered up to three free cycles of IVF – the number most experts agree gives a fair chance of conception. In Ireland, there is no comprehensive State-funded fertility treatment, even when patients are receiving care and treatment for a condition or disease that affects their fertility, such as cancer, colitis or endometriosis.
"There have to be more regulations, there has to be more support, the mind boggles that nothing has been done yet"
Forty-year-old Natalie Doyle needed to pursue IVF after her Fallopian tubes became encased in scar tissue following complications relating to colitis. She had been receiving expert care within the public health system but once it came to looking into ART options, a situation she found herself in as a direct result of the disease, she felt completely adrift.
“You’re just left on your own to choose a clinic and there’s no communication between your fertility clinic and your other doctors,” she says. “There’s not even a link between your GP and the clinic – it’s just nuts, I can’t get my head around it.”
Doyle and her partner postponed moving in together, both staying with family while they funded cycle after cycle of failed IVF. Eventually, they conceived their daughter but Doyle is adamant that the “Government needs to step in”. The costs are too much for many couples to bear, she says.
“It feels like you’re spending money, just sitting in the waiting room. It bleeds you dry. The Government needs to help with the costs,” she says. “But they also need to help medically, so that patients like me have a continuity of care. There have to be more regulations, there has to be more support, the mind boggles that nothing has been done yet.”
In Ireland, fertility clinics are regulated by the Health Products Regulatory Authority (HPRA) but there is no regulatory body that specifically oversees the fertility industry. In the UK, the Human Fertilisation and Embryology Authority (HFEA) performs that role, ensuring fertility clinics and research centres comply with the law, as well as providing free, clear and unbiased information on all fertility clinics operating within the jurisdiction. Without such a body here, patients can find themselves feeling bewildered.
Amy Gallagher says she got most of her information from Google, Facebook and Instagram.
“I just think there should be some form of support for people, not only financially but emotionally,” she says. “For people who experience infertility as a result of childhood cancer, there’s nothing out there. There’s one Facebook group, that’s all I’ve found. There needs to be something like the citizens’ information service, somewhere you can get information. People have no one to turn to. Your GP doesn’t know and a fertility doctor will charge at least €250 for a consultation, just to ask them questions.” The situation is, she says, deeply frustrating and upsetting.
Prof Wingfield says Ireland “desperately needs” an equivalent of the HFEA. “The industry is regulated by the HPRA but it’s more from the point of view of the quality procedures surrounding the management of human tissues and cells. It’s not about the social, medical, ethical and legal realities.” There are plans afoot to introduce such a body as part of an overhaul of the provision of fertility treatment but it is not clear when that will happen.
In October 2017, the cabinet approved the Assisted Human Reproduction (AHR) Bill, a piece of draft legislation that laid out regulations for AHR and the need for the establishment of a regulatory body.
Two years on, in late 2019, details of a model of care for infertility developed by the Department of Health in conjunction with the HSE's National Women & Infants Health Programme were announced, with the then minister for health Simon Harris receiving Government approval to publicly fund infertility services. The announcement – a clear commitment from the then Government – was hugely significant and it looked as though Ireland was finally set to join most other wealthy and developed nations in providing care and treatment for infertile people. Harris told reporters at the time that he expected publicly funded IVF to be available in 2021.
"It's nearly treated as though Amy is going in for a boob job. People think it's a luxury as opposed to a necessity"
The planned scheme would comprise three stages: the first stage would involve patients seeing their GP and if it was deemed necessary, they would proceed to the second stage and be referred to a newly established regional fertility hub (there are plans for six hubs, one in each of Ireland’s six maternity networks), where tests, diagnostic surgery and some non-invasive forms of ART would take place. The third stage would involve the provision of free IVF.
Now, another year has passed and there has been little progress with this ambitious undertaking.
The commitment is ongoing and the current Minister for Health, Stephen Donnelly, confirmed in public statements on the most recent Budget that additional funding is being made available in 2021.
"Women's health and our maternity services must get more attention," Donnelly said in the Dáil last October, noting that, "We will . . . open two new regional fertility hubs in Galway and Cork."
In response to questions from The Irish Times, a Department of Health spokesperson said that €2 million has been made available to allow for the establishment of the first four hubs and a further €1 million has been allocated for the final two hubs.
However, while Covid-19 has not impacted the funding available for the project, the establishment of the hubs has been slowed by the pandemic and its impact on the HSE and the provision of elective health services. None of the six regional hubs are operational at present. Meanwhile, the AHR Bill has still not been signed into law - and without that, publicly funded IVF will not take place.
When you remove any religious concerns from the discussion of fertility treatment, there remains two very powerful taboos: money and women's reproductive systems
The Department of Health spokesperson says that “it is intended that, in line with available resources, [the] model of care for infertility will be rolled out on a phased basis over the course of the coming years”. When pushed for a more specific timeframe, the spokesperson said it is “not possible at this juncture to give a definitive timeline”.
Rowan and Gallagher aren’t holding their breath. “We’ve been promised this Government money for years but it’s just not coming,” Rowan says. “Every time you hear about it, you think: ‘Oh maybe that will be through soon.’ But it seems to be taking years. You can’t rely on it, you can’t put your hope in it.” Gallagher fears that any change will come too late for her: “It sounds mad because I’m only 32, but every year that I’m older, our chances are lower.”
Prof Wingfield says Ireland “absolutely” lags behind other developed countries when it comes to the provision of fertility treatment. The cost of fertility drugs prescribed by a consultant are covered by the Drugs Payment Scheme or a Medical Card and private patients can claim tax relief on the costs of fertility treatment but even so, Irish patients receive significantly less support than those in the UK, Germany, Turkey and most European nations. When asked why that is, she says the answer is complicated. “In the past, it would have been because it was a difficult subject to discuss from a religious and moral point of view, but that’s no longer the case.”
However, when you remove any religious concerns from the discussion of fertility treatment, there remains two very powerful taboos: money and women’s reproductive systems.
“Because, over the years, it’s only been available privately – not just in Ireland but in most parts of the world – and the treatment is expensive. There was a perception that it was a luxury, something that only rich people can afford,” Prof Wingfield says.
Rowan says that he and Gallagher have encountered an attitude that suggests fertility treatment is somehow extravagant: “We have no choice but to do IVF if we want to have a child but sometimes it feels like people don’t understand that. It’s nearly treated as though Amy is going in for a boob job. People think it’s a luxury as opposed to a necessity.”
A cycle of IVF usually costs between €6,000 and €10,000 depending on which treatment is required and which clinic you are using. There is not always evidence to support expensive add-ons, such as endometrial scratching and assisted hatching, but if you are already spending huge sums of money, it can seem churlish not to attempt to boost your chances by opting in. Treatment can be accessed at a cheaper cost abroad (most Irish patients go to the Czech Republic or Spain) but flights and accommodation will add up and being hundreds of miles from your doctor if something goes wrong is stressful and potentially dangerous.
Generally, only the most expensive private health insurance packages cover infertility treatment and even then, they do not cover the entire cost. The most comprehensive packages at Irish Life and VHI cover up to €2,000 towards a cycle of IVF, which can be accessed only twice per lifetime.
The vast expense can make patients feel that their clinics are rapacious. “You have to pay €160 for a blood test to tell you that you’re not pregnant. It’s horrendous. It can feel like it’s just about money to them.” says Gallagher. Prof Wingfield, however, makes the point that “it is a very expensive treatment because it’s very labour intensive”.
"For one couple to do IVF," she says, "you'll have several nurses involved, one or two doctors and several scientists. Then you'll have all the administrative staff because record-keeping is so critical. It is a very expensive treatment to provide." The Merrion Clinic is run as a not-for-profit organisation and has charitable status but costs there are not significantly lower than at the private clinics, which are run for profit.
"I had to become distant for the sake of my own mental health – I couldn't go to baby showers"
Infertility often has an impact on mental health – a study in the United States found that women with infertility felt as anxious or depressed as those diagnosed with cancer, hypertension, or who were recovering from a heart attack – and stress about money adds to feelings of anxiety and helplessness.
Louise Hazlett (37) has private health insurance that has covered the surgeries and treatments she needed to treat her endometriosis, but it does not extend to fertility treatment, which she needs as a direct result of the disorder. Over the last four years, she and her husband, Kevin, have had five cycles of IVF. In 2017, she discovered she was pregnant with twins but she went into labour at 22 weeks and her sons died shortly after birth. Since then, she has had three more cycles of IVF.
She explains that they “got a loan from the credit union for €20,000 and that went fairly rapidly”.
“We had to get another loan last year,” she says. “And we just save. Any spare money goes to fertility. We both work but it’s not easy. But I feel lucky that we are in a position to save and to pay back loans. Not all couples have that.
“People assume that once you get married or reach a certain age that you’re going to have kids. They assume it’s going to be easy. And people say things like, ‘Oh still no sign?’ And at this stage, I just say, ‘Well, I’ve done five cycles of IVF. We hope the sixth one is going to be our lucky one.’ That shuts people up.”
Prof Wingfield says: "Most people grow up thinking that they will be able to have children and unless they run into problems, they don't realise that it is such a big issue." People who have not experienced infertility – according to the HSE, 85 per cent of people conceive within one year– will perhaps struggle to realise just how distressing and expensive the process can be.
"People ask 'Is it you or him?' and 'How much is it?' Those are the two questions I get asked all the time."
“It’s like an obsession,” Doyle says. “You see all the people around you getting pregnant and having kids. I had to become distant for the sake of my own mental health – I couldn’t go to baby showers. People can say that they understand but unless you go through it yourself, you don’t, you can’t really.”
This isolation can be compounded by silence around the subject. “People who can’t get pregnant sometimes feel that there is something wrong with them and it affects people’s self-esteem,” says Prof Wingfield. “So it’s hard to be vocal about it and people can be very private about it. Often people’s friends or family don’t even know about it. That is changing and people are becoming more open about it and with that will come the realisation that it is a medical issue.”
The people interviewed for this piece said they were keen to speak openly because they believe that raising awareness is vital. Gallagher says she didn’t tell her employer during her first cycle because she felt there was a “stigma” and a lack of compassion: “People ask ‘Is it you or him?’ and ‘How much is it?’ Those are the two questions I get asked all the time.” When going through her second cycle, she was open about it in her workplace but “felt like they didn’t understand”.
“It was like: ‘You’re not sick, why do you need time off?’”
Hazlett hopes publicly-funded infertility treatment will help to improve awareness of infertility and its causes and treatments.
There will be huge challenges to creating a functional and fair State-sponsored system of providing fertility treatment. It will be necessary to decide who is eligible for free fertility treatment and to establish criteria and cut-offs. In the UK, for example, gay women who are in a relationship can access free IVF with a sperm donor but single women are ineligible. The financial, legal and logistical concerns relating to the implementation of the Government’s planned three stages will be complex, but if it is achieved it will be a huge step forward for our health system. Prof Wingfield laments the existing system: “As a doctor, it is unacceptable to me that medical healthcare should be preferentially available to those in our society who can find the money to pay for it and not available to all.”
Doyle's daughter Sadie is just about to turn three. When she was 10 months old, Doyle and her partner David Smith could finally move into their own home after years of spending almost everything they earned on fertility treatment. They consider themselves "the lucky ones" and wish more people could get to experience their joy.
