IVF in Ireland: ‘Time is just so precious for these people, they can’t afford to wait’

People are “ageing out” of their chance to have a child because of years of delays in the public funding of IVF (in vitro fertilisation), fertility experts say.

Those experiencing problems conceiving must pay thousands for medical treatment, despite the World Health Organisation’s recognition of infertility as a disease. Ireland is the only state in the European Union not to fund the treatment.

“Time is just so precious for these people, they can’t afford to wait. They are ageing out of fertility while they are waiting,” says Dr Sorca O’Brien, Aspire Fellow in Fertility at the National Maternity Hospital and the not-for-profit Merrion Fertility Clinic.

State-funded IVF was first tabled in 2007 by then minister for health Mary Harney. This followed a 2005 report by the Commission on Assisted Reproduction that recommended a body be established to regulate assisted human reproduction (AHR) services in Ireland. The commission was set up in 2000 by minister for health at the time Micheál Martin.

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Those experiencing subfertility before and over the nearly two decades since, however, have had to pay for their own treatment as successive governments failed to act. The cost of one round of IVF in Irish clinics can range from €4,000 to €6,500. Those without means are unable to access treatment.

“There are people who started this road when legislation was discussed in 2006 and we are now nearly 20 years down the line,” says Dr O’Brien. Creating a family in Ireland can remain a luxury for those who can afford it, and a financial burden for those who incur debt trying, she says.

The Health Service Executive (HSE) estimates that one in six heterosexual couples in Ireland experiences infertility. The condition’s causes are 20 to 30 per cent male physiological causes, 20 to 35 per cent female physiological causes and 20 to 40 per cent causes in both partners. In 10 to 20 per cent of cases, no cause is found.

In 2008, the European Parliament called on member states to “ensure the right of couples to universal access to fertility treatment”.

However, Ireland ranks 40th out of 43 nations for access to fertility treatment, according to the European fertility atlas published last year. The comparative map from the charity Fertility Europe, along with the European Parliamentary Forum for Sexual and Reproductive Rights, grades countries on legal access to fertility treatments, as well as their funding and reimbursement. In most other countries in the EU, fertility treatment is either whole- or part-funded or reimbursed by the public health system.

“It’s just a really unfair and unjust situation

Government inaction over decades has left those struggling to conceive navigating the private fertility industry, spending potentially tens of thousands of euro on treatments. For those who do not have the money required, their opportunities to have a child are fewer.

One Dublin woman, whose diagnosis of endometriosis has made it difficult to have children, has had to pay for four rounds of IVF at a private clinic here. Endometriosis is a condition where tissue, similar to that which lines the uterus, grows outside the uterus. She says successive governments have not moved to help those experiencing difficulties.

“If you are diagnosed with any other condition, you are helped by the State. The State is just turning its back on all of these women which is a disgrace,” she says. Now in the early stages of pregnancy after egg donation at a clinic in Prague in the Czech Republic, she has not yet informed her employer and so does not want to be identified.

She describes herself and her husband as “extremely lucky” to get pregnant after a first round of IVF in 2019. The couple now have a 2½-year-old daughter. The procedure cost €6,500. “I am lucky I can afford to do it. Others have to say after one round, that’s it, and that’s heartbreaking. The Government is doing nothing.”

Subsequent treatments in the hope of adding to their family have cost the couple €40,000. Louise has undergone one IVF treatment that did not lead to pregnancy and another two rounds of IVF that resulted in miscarriage.

When her third round of IVF ended in early miscarriage, she was told she could try again. “The doctor said just wait one bleed and you can try the next month. I was like, ‘No I can’t try the next month. It’s thousands of euros’. In your head you are thinking, ‘where am I going to get the money?’”

[ IVF: 'Your chances of having a kid depend on how much you can afford' ]

[ Paul Murphy speaks of ‘huge burden’ IVF treatment has placed on his partner ]

The financial burden of IVF means those experiencing miscarriage after the treatment can’t afford to take a break, she says. “You just have to brush yourself off and get on with it and say, where am I finding the next tranche of money. There is no time to grieve and be upset. You just have to keep going, get back to work and make more money to pay for treatment.”

“It’s just a really unfair and unjust situation. You are upset because your body isn’t doing what you want it to do. You are being told you have fertility problems, but no one is helping you. It’s basically, you have got problems, go and find a clinic yourself, if you can afford it.”

“I have had to pay for my children. All of our life savings are gone. You have somebody who has had their babies naturally and they have their lump sum sitting in their bank account for their children. They have a rainy-day fund, I have nothing.”

She argues a stigma around discussing infertility has let successive governments off the hook. “No one talks about having fertility problems, there is an embarrassment around it. That’s why the Government is getting away with it. If it was people with cancer, they would be showing their faces bravely saying, ‘I’m sick here’.”

In 2016, then minister for health Leo Varadkar said it was his intention to provide public funding for assisted human reproductive treatment, including IVF, in conjunction with legislation in the area. IVF was included in the list of universal healthcare entitlements to be introduced under a 2017 Sláintecare report.

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. In 2019, then minister for health Simon Harris said he expected publicly funded IVF to be available in 2021.

Long-promised publicly funded fertility care is happening in stages. Phase one will see six regional fertility hubs in place this year. Four of the hubs at Cork University Maternity Hospital, Dublin’s Rotunda, the National Maternity Hospital at Holles Street and The Coombe hospitals are operational and “growing their capacity with recruitment of a small number of specialist staff ongoing”, says the HSE. A hub in Galway is operational with the sixth hub in Nenagh, Co Tipperary expected to commence service by the end of the year.

The hubs will treat “females under 36 who have failed to conceive over 12 months, females over 36 who have failed to conceive over six months” and those where there is a known cause of infertility such as endometriosis or previous failed fertility treatment. The HSE says the regional fertility hubs will provide “blood tests, semen analysis, assessment of tubal patency, hysteroscopy, laparoscopy, fertility-related surgeries, ovulation induction and follicle tracking”. The department estimates “50 to 70 per cent of patients presenting with infertility issues can be managed at this level of intervention”.

The hubs, however, do not yet provide IVF. Critics fear this phased approach without IVF will stall those wanting to be parents when more aggressive intervention could yield better results. The hubs do not provide sperm donation or surrogacy services either, so single women, female couples and male couples are excluded.

Phase two of the rollout will see IVF and other advanced AHR treatment services developed, the Department of Health says. However, how treatments are delivered, who is eligible and how the service will be resourced will need to be informed by the final AHR Act, the Department says. The process will also be guided by regulations to be developed after the legislation is enacted, it says. The Bill passed the second stage in the Dáil in March.

Taoiseach Micheál Martin told the Dáil in April this year that publicly funded IVF is “planned for 2023″. Some of those working in the fertility sector, however, say that - as yet - they have seen “no plan” for its rollout. “If legislation has to go through for funding and a service to be rolled out, I think it would be ambitious to say 2023,” says Dr O’Brien. “Every year of waiting counts, and every couple of months in the older age range will impact things,” she says.

Campaigners want to see the Bill given priority when the Dáil returns in September. The National Infertility Support and Information Group (NISIG), a support and advocacy charity for those experiencing infertility, has in its pre-budget submission called for State-funded IVF to come into effect next year.

“There are thousands of people waiting to see what the outcome of this legislation will be. Every day, people are going for treatment who basically have to cover the cost of it themselves,” says NISIG chairwoman Caitríona Fitzpatrick. “What we want to see with this legislation is that people who suffer from infertility a

re put on an equal footing to everybody else.”

Planning for how State-funded IVF will be delivered must happen now, says Fitzpatrick. It should not be delayed by the legislation, or the setting up of a regulatory authority which could take years, she said. “We’d really like to see that conversation kicking off in parallel. If the legislation takes another six months to go through, and then we start to put together this new regulatory authority, we are going to be sitting here in two years and nobody will have got State-funded IVF.”

“We are extremely concerned that there is no conversation or planning that we are aware of that would make this proposed new policy a reality in the near future,” says Fitzpatrick. “We have spoken to private clinics and medics, and no one is in any way clear how or when the provision of State funding for fertility treatment will take place.”

To speed up help to those whose window of fertility is closing, Government investment in the short term must go into treatment, not into infrastructure, says Fitzpatrick. “We want to see a model introduced whereby private clinics can provide State-funded treatment until such time as publicly funded treatment is available in public healthcare settings.”

The NISIG is a member of the Assisted Human Reproduction (AHR) Coalition which is made up of representative groups Irish Families Through Surrogacy, the National Infertility Support and Information Group, Equality for Children, Irish Gay Dads, LGBT Ireland and Independent Living Movement Ireland. The Coalition met Minister for Health Stephen Donnelly this summer to discuss the Bill.

“This has been going on for 20 years and I am not landing this on Stephen Donnelly’s door. A lot of people have passed through who haven’t taken this by the scruff of the neck,” says Fitzpatrick, a former special adviser to Minister Simon Coveney now working in public affairs. “Minister Donnelly has been very forthcoming in that he says he wants to see the legislation brought forward in September.”

Fertility treatments in the UK, including IVF, have been available since 2004 through the National Health Service (NHS). Countries such as Belgium and the Netherlands have achieved the gold standard, according to the European fertility atlas, scoring 86 per cent on the scale. France, Portugal, Finland, Norway, the UK and Spain all score between 70 and 80 per cent on this monitor. Ireland’s score is just 27. Only Belarus, Ukraine and Turkey rank lower than Ireland.

Three countries offer up to six fully funded cycles of IVF or intracytoplasmic sperm injection (ICSI), where an embryologist injects a single sperm into the egg to assist fertilisation, and 35 countries partially fund it. France has become one of the latest countries to give lesbian and single women the same rights to fertility treatment as heterosexual couples. Those rights include reimbursement for four IVF treatments and six rounds of intrauterine insemination (IUI), a fertility treatment where sperm is placed directly into a person’s uterus.

In Belgium, public funding or partial funding is given for up to six IUIs and six IVF/ICSI treatments, including insemination with donor sperm, for heterosexual couples, single women and female couples. Treatment with egg donation is also funded for those groups and for male couples.

While assisted human reproduction services like IVF are not publicly funded here, a large portion of the cost of drugs is covered by the HSE’s Drugs Payment Scheme. Those using private services may also be able to claim some tax relief for the medical expenses.

“If I have a job below the tax bracket, that doesn’t mean anything to me, or if I am a stay-at-home parent dealing with secondary infertility, that doesn’t mean anything to me,” says Fitzpatrick. “If I never had the thousands of euros for treatment, then I absolutely have no options,” she says.

Budget 2023 must allocate money for a public awareness campaign to normalise the discussion of infertility, she says. “From your teenage years upwards, the issue of fertility should be part of the normal conversation and sex education. Knowledge is crucial, as is time, when it comes to fertility.”

“What we don’t want to see is slow-moving legislation. Let’s do things in parallel. Let’s talk now about how IVF funding would work and how an information campaign would work so that people in their 20s now might think about whether or not they want a family.”

The cost of housing in Ireland is one factor in why people are having children later. The median age of all joint buyers without children is 36. “Everything is pushed on further, except women’s bodies haven’t really changed. Modern life means everything happens a bit later, but unfortunately there is a time attached to our reproductive systems. It needs to be two-way conversation, men need to think about this as well,” Fitzpatrick said.

In a Dáil debate on the Bill in March this year, Social Democrats co-leader Róisín Shortall criticised the slow pace of the Bill, first published and scrutinised in 2017. The long gap between the heads of the Bill being produced, pre-legislative scrutiny and then the draft Bill being published was “highly unsatisfactory”, she said.

“Very few people who will be dealing with the Bill now in this Dáil would have been involved in the pre-legislative scrutiny. That goes completely against the whole intention of the greater scrutiny and pre-legislative scrutiny process itself,” she said. This delay is likely to slow the Bill at Committee stage, further prolonging the wait for those needing fertility treatment.