“I FEEL YOU are being punished when you haven’t done anything to cause it.”
Rita O’Meara and her husband Shane have spent almost €10,000 on fertility treatment over the past two years and say people going through this are being ignored by the Government.
O’Meara is in her early 30s and has had a number of unsuccessful treatment cycles, including in vitro fertilisation (IVF) and intrauterine insemination (IUI). There isn’t “any support there when you need it”, she added.
She downgraded her car and the couple gave up extra expenses such as holidays to gather the money for treatment. She said they have a number of embryos in storage but once they run out she doesn’t feel she could “financially or even mentally” go through a new cycle of IVF.
It definitely puts pressure on your relationship. You’re trying to come up with the next €5,000 and do without certain things and be the same as the next couple. It just seems to be unfair, especially when you look at other countries who fund infertility treatment.
On Friday, Ireland was found to be amongst the worst in Europe when it came to fertility treatment provision by the European Atlas of Fertility Treatment Policies launched by Fine Gael MEP Frances Fitzgerald. She told Noteworthy after the launch that “it’s shameful and it’s dangerous. It’s incredible that we’re fourth last out of 43 countries.”
Ireland was joined by Albania, Armenia and Poland in the ‘exceptionally poor’ group at the bottom of the table.
Fitzgerald called on the Health Minister Stephen Donnelly “to implement the Programme for Government commitment on State funding but also on the legislation”.
In January, Noteworthy revealed that the Department of Health can’t give a timeline for rollout of publicly-funded IVF as the Government has linked it to the passing of assisted human reproduction (AHR) legislation – currently delayed due to issues relating to international surrogacy.
The MEP spoke of “couples shelling out thousands” for “very expensive treatment” which she said leads to unequal access. She thought that a certain amount of funding could “probably go ahead”, but legislation is “very important”.
“I think [Minister Donnelly] could probably go ahead with some funding, because we have recognised medical teams dealing with this who are regulated by the Medical Council.”
The impact that lack of legislation, regulation and a public treatment system on people trying to conceive is immense.
While some private clinics are making millions and advertising unproven ‘add-on’ treatments, patients are sacrificing house deposits, selling cars and borrowing money in order to pay for treatment, often due to infertility, a condition that WHO classifies as a “disease of the reproductive system”.
These same patients have waited years for a public system that was promised by then Minister for Health Leo Varadkar in 2016.
At Noteworthy, we can reveal:
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Spiralling costs
Numerous couples told Noteworthy of the strain that the huge cost of IVF and similar fertility treatments were putting on their lives.
Kim Moore and her husband Simon have spent around €30,000 on fertility treatment since they got married in 2015. Moore was also in her early 30s when she started treatment.
“Our idea was that we would have a baby within the year [of the wedding]. We were trying and nothing was happening. The grafting that we did for our house deposit went on IVF.”
Since then they have undergone a number of treatment cycles, with their son Marvin being born in 2017 and their daughter Megan in 2019. With help from family, they did manage to buy a house but paying for treatment delayed this.
The couple were going through the transfer procedure with their final embryo when Noteworthy spoke to Moore last month.
“We’re six years married now and we’re constantly fighting finances just to have our family. Paying off loans and bills. We have two decent jobs and our family gave us a loan of money, but you’re cutting and saving, putting it on the credit card, hoping you can pay off the bill.
“You can’t switch off the yearn to have a baby. It kills me that you can afford to have the child, but you can’t necessarily afford to get pregnant.”
Lack of Department decisions
Noteworthy asked the Department of Health when it is planning to roll out phase two of their model of care for infertility. This includes tertiary infertility services, including IVF.
A spokesperson said that phase one of the roll-out is “envisaged before the end of 2022″ with additional funding made available in Budget 2021. This phase includes the establishment of Regional Fertility Hubs within maternity networks in order to manage an estimated “50% to 70% of patients presenting with infertility issues”.
The spokesperson stated that phase two “will not commence until such time as infertility services at secondary level have been developed across the country, required resources have been allocated and the AHR legislation commenced”.
Noteworthy also questioned the Department on its plans to implement these tertiary services as they had previously stated they will be conducted in the public system.
This is a major issue as fertility expert and clinical director of Merrion Fertility, Professor Mary Wingfield, put it: “There is absolutely no infrastructure or trained staff to provide the complex treatments of IVF/ICSI in our public facilities.” She told Noteworthy “it would most likely need to be outsourced to private clinics – with careful oversight by the State of costs, quality, success rates, etc”.
We also asked if decisions had been made on access to treatment, such as if there would be an age limit, medical prerequisite or limit on treatment cycles. In reply to these queries, the Department spokesperson said:
At this stage no decisions have been finalised in respect of the relevant locations for the provision of tertiary level services, the relevant access and eligibility criteria, the components of any treatment package, the specific level of resources required, or the total cost of providing publicly-funded AHR service.
They added that the design for the new National Maternity Hospital does include infrastructure for the provision of AHR services.
In regards to funding of these services, the spokesperson said “while AHR treatment, such as IVF, is not currently funded by the Irish public health service”, the cost of medicines are covered, depending on eligibility, under a Medical Card or Drugs Payment Scheme. They added that patients may also “claim tax relief on the costs”.
‘Never going to benefit’
While the Government is planning to direct IVF and similar treatments through the public system, consultants in these fields are already under pressure with over 30,000 adults currently waiting to see a gynaecologist and over 6,000 of these waiting for over a year.
Edwina Hayes who recently went through chemotherapy and radiotherapy for breast cancer is one of those adults currently on the public waiting list to see a gynaecologist to find out if she is fertile after her treatment and if she has “enough eggs left for treatment down the line”.
Having been referred in June, she is still waiting for an appointment date. Given time is crucial for fertility treatment, she is finding this wait frustrating and stressful.
She said that “everyone should have a chance” to have children and worries about the potential down the line of having to seek treatment outside the public system with the extra financial pressure that goes along with private fertility care.
“The Irish Cancer Society believes that cancer patients, and others, have been waiting too long for equitable access to fertility treatment,” according to Rachel Morrogh, their director of advocacy.
This lack of a public treatment system has also meant that some patients with additional medical needs have to travel abroad which adds further financial strain.
Selina Bonnie of Independent Living Movement Ireland (ILMI) had to travel to London for egg retrieval because the private clinic she attended “did not have the technical, medical ability, equipment and staff” to put her under general anaesthetic due to her medical condition.
When I was ready for egg retrieval, we had 24 hours to get a plane to London to get the retrieval and insemination done. That was a significant impact that would have been caused by the fact that we had to go to a private service in Ireland.
At the time, Bonnie didn’t stop to think about this as she was “so focused on trying to have a child”, but on reflection she said she sees “how wrong it was that we were forced to leave our own country”.
People with medical conditions such as endometriosis, a condition that can cause difficulty getting pregnant, are often referred from public hospitals to private clinics. Orla Kerbey’s endometriosis consultant in the public system was also her fertility consultant in a private clinic when she required IVF treatment with her husband Bill.
Her parents helped pay for the couple’s treatment which cost over €8,000. “If my parents hadn’t been in a situation where they could make that contribution, we could be still waiting to try and do it.”
Sarah Fennessy who also has endometriosis was also referred in this way. She and her partner Dean spent over €15,500 across treatments over the past two years which were unsuccessful and “is still trying to pay back everything”.
I don’t think I could see a life without children, but it’s going to have to be when I’m in a better financial position, because it’s not an option for me to even consider IVF right now.
Fennessy said that she will have to look into going abroad for cheaper treatment – like many Irish couples – but this means facing “the stress of travelling during a hard enough time”.
John*, whose wife recently had a miscarriage after their first cycle of IVF , told Noteworthy that the Government’s lack of progress is devastating for people and putting their lives on hold. They have been trying to conceive since publicly funded IVF was first announced by Leo Varadkar.
When he spoke to us, the couple were deciding whether to use their savings for a house deposit or another treatment cycle, while simultaneously paying high rent in Dublin.
“This is where we are… no baby, no home.” He had resigned himself that they were “never going to benefit” from public treatment. The Government are “hiding behind that legislation”, he claimed.
Legislation ‘an excuse’
A number of experts that spoke to Noteworthy also felt that public funding could be put in place while waiting on the implementation of AHR legislation. Frances Fitzgerald told us that Minister Donnelly “could probably go ahead with some funding”, though she would not clarify in what form this should take when asked.
She said that “we have not taken this issue seriously enough at a legislative and government level, and as a society”. Fitzgerald added that a short, medium and long term plan is needed as “we have a very long way to go… and owe it to our citizens to take action” as evidenced by the European Atlas (mapped below).
In January, when we revealed a lack of timeline by the Department of Health, fertility expert Wingfield said this link of the model of care to legislation is “a convenient way of putting it off” and she didn’t see why the funding has to be linked to the legislation for any medical reason.
Another expert, Dublin-based GP Dr Michelle Rodgers, said that the Government are using the legislation “as an excuse”. She said that regulation helps but it shouldn’t “be a reason to delay the service being set up”.
She conducted thesis research in recent years on the State funding of AHR treatment. She also worked as a GP in deprived areas of East London but said that fertility treatment was accessible to all who fulfilled the criteria and this accessibility was regardless of personal finance.
For a doctor, when you know there are treatments available, but you can’t access them for people, it’s hard to rationalise. People who don’t have the money, tend to not come [and] are not even trying to access help with their fertility.
Helen Browne cofounder of the National Infertility Support and Information Group (NISIG) told Noteworthy that she “receives many calls from people who have to put their fertility treatment on hold for a year or two so that they can save for IVF treatment.
“As this adds an extra one to three years to their age, they have grave concerns that their egg quality may have diminished by the time they can afford treatment. This causes them untold stress and heartache.”
Additional costs
Treatment costs are not even, with some paying more than others for extra services such as egg or sperm donation or reciprocal IVF – where the egg of one woman in a same sex couple is fertilised and then transferred into their partner.
Amy Dunne always wanted to be a mother. At 27, when she found out that her AMH level – a hormone used to give an idea of how many eggs are present in the ovaries – was about half what it should have been, she and her partner Sarah immediately looked into fertility clinics.
That was in January 2020. Less than two years later the couple have spent close to €35,000 to date, which Dunne said is almost equal to her yearly salary before tax, and are currently on their “final cycle” of treatment and hoping for a successful outcome.
After a number of unsuccessful transfers, they went down the route of reciprocal IVF, also called shared motherhood. This, as well as the required donor sperm cost the couple significantly more.
There have been issues with access to publicly funded fertility treatment for single parents as well as same sex couples in other European countries, in spite of legislation and regulation being in place.
A discrimination case was launched last month against the NHS as it is reported that couples have to prove medical infertility, costing them over £30,000, before receiving NHS help.
When we asked the Department of Health about planned criteria for single people and same sex couples, the spokesperson stated:
A key principle underpinning all legislative measures in this area is to guarantee that, subject to certain criteria being met, AHR treatment will be available to people irrespective of gender, marital status or sexual orientation from all licensed AHR treatment providers.
However, single people face more costs in Ireland at present. Fiona Walshe wanted to give her son Liam a younger sibling so used a sperm donor for fertility treatment. In total, she spent around €20,000 between two cycles of IUI and one cycle of IVF. Over €2,000 of this was spent on four straws of donor sperm.
“I had always said that if I didn’t meet someone by the time I was 38, that I would do IVF.”
She also paid extra for pre-implantation genetic testing for aneuploidy (PGT-A) which screens embryos for chromosomal abnormalities in order to potentially reduce the risk of miscarriage.
“The thing that I was worried about most was the money. To know that there’s a limiting factor. I wouldn’t have been able to afford to go again.”
Walshe borrowed over €6,000 from friends which she has now paid back, received a gift of over €3,000 from her mother and is still paying off a credit union loan.
“Now I have Jack, it was worth all the money, but I’m still paying it back. For a single person, it’s hard to do it on your own.”
Clinics making millions in profits
Each clinic examined by Noteworthy had a price list available on their website, with the cost of IVF varying from between just under €4,000 to almost €6,000. Some were advertised as “all inclusive” packages while the listed price of others excluded specific consultations and treatments as well as – most often – embryo freezing and storage which can cost hundreds.
Orla O’Leary, patient services manager from Merrion Fertility said that their “price list is accurate with regards to straightforward treatment cycles” but explained that “depending on the patient’s history, further investigations may be required”.
Similarly to other responses we received from clinics, O’Leary said that “patients would always be made aware of these fees prior to proceeding with these tests”.
Health insurers partially cover some AHR treatments at selected clinics but this varies between insurers, is usually limited to one or a small number of treatment cycles, and only covers a small proportion of the final cost.
With patients paying thousands for fertility treatments, Noteworthy analysed the financial statements of private clinics based in Ireland.
A number of companies that run these clinics reported profits in the millions, with Virtus Health Limited who own Sims IVF, ReproMed Holdings Limited and First IVF Limited reporting trading profits of well over €1m each in their 2020 financial statements.
ReproMed run clinics in Dublin, Galway, Kilkenny, Cork and Drogheda. ReproMed Holdings Limited, who’s ultimate holding company is SynBiol A.S., based in the Czech Republic, reported a profit for the year of over €1.5m and an accumulated profit of almost €3.9m in their 2020 Irish accounts.
The previous year – before the pandemic – was even more successful, with the company’s accumulated profits jumping over €1.8m after they paid off overdrafts of over €1m.
We sent a number of queries to ReproMed but of these, a PR agency responded by saying: “Unfortunately, this isn’t something ReproMed wishes to contribute to at this time.”
Sims IVF is fully owned by Virtus Health since 2020 when they acquired the last 15%. Its ultimate parent company is based in Australia. They have two clinics in Dublin and others in Cork, Carlow, Dundalk and Limerick.
Virtus Health reported a profit for the year of almost €1.9m and an accumulated profit of over €6.4m in their latest financial statement. A company spokesperson did not comment to Noteworthy about this profit.
Until late last year, Irish-registered First IVF Ltd — which operates a clinic in Clane, Co Kildare — was owned by Barcelona-based fertility group Institut Marques.
Ownership of the Irish company was transferred to two Irish-registered entities in November last year. Then in January 2021, the new directors changed the name of the company from Institut Marques Ltd to First IVF Ltd.
According to its most recent accounts, First IVF Ltd had accumulated profits of just €58,000 by the end of December 2020, shortly after the takeover was completed. However, just 12 months previously, the company was in the red to the tune of almost €4.4 million, mostly due to the €4.2 million it owed to “group undertakings”. A spokesperson for First IVF declined to explain to Noteworthy whether these debts were written off as part of the takeover.
Other clinics analysed by Noteworthy included Beacon Care Fertility who reported an accumulated profit of almost €730,000 in their latest accounts. Ireland’s only not-for-profit fertility clinic, Merrion Fertility, reported a surplus of over €85,000 for 2020 which was “reinvested in the clinic” for enhancement of services, according to its clinical director, Wingfield.
When asked for their profit figures, a spokesperson for Thérapie Fertility told Noteworthy that it officially opened in July 2020 and “as such we do not have the companies trading performance as yet for 2020″. Waterstone Clinic is an unlimited company and exempt from filing financial statements.
Less problems with higher State funding
Though most experts agreed public funding should not have to wait for legislation, all who spoke to Noteworthy felt that it is needed in Ireland in order to keep clinics in check, especially around use of ‘add-ons’, which have been regulated in other countries.
These include screening like PGT-A that Walshe had as well as treatments like endometrial scratching or extras such as assisted hatching, embryo glue or time-lapse imaging.
In Ireland, a number of private clinics are advertising add-ons treatments on their websites. Though the HPRA regulate the standards of quality and safety that clinics adhere to around tissues and cells, requirements or standards for clinical treatments are not regulated by the authority.
These add-ons can often add huge expense to patients and both the Competition and Markets Authority as well as the Human Fertilisation and Embryology Authority (HFEA) in the UK have raised concerns about patients there not being given clear and accurate information by clinics about them.
The HFEA have developed a traffic light system for these add-ons with all mentioned above rating as having conflicting or no evidence from randomised controlled trials of improving the chances of having a baby for most fertility patients. This does not mean they are not effective for other reasons, such as potentially reducing miscarriages in some patients in the case of PGT-A (which is listed as red).
A consensus statement in the UK agreed that red-listed treatments – those “that have no strong evidence” of their safety and/or effectiveness “should only be offered in a research setting”, with patients not being charged extra for this.
This is one reason that Rodgers said she “always prefers the public hospital option” as they “always go with best practice” and patients won’t be encouraged to do extra treatments.
At a recent conference by the Progress Education Trust, Dr Heidi Mertes, ethics professor at Ghent University in Belgium, stated that countries with higher levels of State funding have less problems with add-ons.
Dr Evelyn Mahon, sociologist and emeritus professor of Trinity College, conducted research on the impact of IVF on couples and found “women expressed a very high willingness to endure whatever was necessary to have a baby”.
The fact that it’s not formally legislated like in the UK creates an environment in which information, support, guidance and financial support is not made available to women. All of that combined helps to make the position of people worse. The trauma that women are put through is unreal.
She told Noteworthy that “legislation and regulation of the clinics lead to more openness”.
Provision of add-ons
All Irish clinics that responded to Noteworthy provided add-ons listed as red or amber in the HFEA, though some did not charge any extra for these treatments.
ReproMed, who did not wish to contribute following our queries, lists a number of these on their website including assisted hatching (red on HFEA traffic light system), time-lapsed imaging (amber) and embryo glue (amber). The UK’s National Institute for Clinical Excellence (NICE) states that “assisted hatching is not recommended because it has not been shown to improve pregnancy rates”.
Beacon Care Fertility also lists assisted hatching and embryo glue as additional services on their website. A spokesperson for the clinic said that “all consultations, treatments and protocols are designed for each patient by their consultant”. They added:
Depending on the patient’s individual needs, some tests (for example, PGT-A) may be recommended by the consultant. The consultant will always explain to the patient why a certain protocol is recommended. The associated costs are also clearly laid out.
A spokesperson for First IVF told Noteworthy that they “do not offer embryo glue” but ”assisted hatching and time lapsed imaging is completed at no additional cost to the patient”.
Sims IVF lists a number of add-ons on their website, including assisted hatching, IMSI (red) and time-lapsed imaging.
A spokesperson said: “Sims IVF follows best practice guidance from the HPRA in relation to treatments provided. Treatment plans are clinically-led and decided on by the medical team in consultation with patients.”
Thérapie Fertility does not offer any add-ons, according to a spokesperson, with time-lapse imaging provided “as standard”. They added: “Many of the add ons offered in other clinics incur additional cost without the evidence to show increased success rates.”
Merrion Fertility “seldom use add-ons, even though many patients request them”, according to Wingfield. “We do offer time-lapsed imaging as we feel it is an excellent system, but we do not charge for extra for this.”
A Waterstone Clinic spokesperson said that “some add-ons, such as time-lapse imaging, are provided as a standard part of treatment and are not charged for separately”. They added: “We are very mindful of poorly researched add-on treatments and we do not promote or encourage them in our clinic.”
Consequences of having no regulator
When asked what they are doing to address the costs being charged to patients as well as provision of these add-ons, a spokesperson for the Department of Health stated:
“The [AHR] Bill will also provide for the establishment of the Assisted Human Reproduction Regulatory Authority (AHRRA), which will help to ensure that AHR practices and related areas of research are conducted in a more consistent and standardised way and with the necessary oversight”.
All of the assisted human reproduction technologies need legislation, according to MEP Fitzgerald, who told Noteworthy that “otherwise, you have a Wild West” which she said is “too dangerous” as there are standards and safety issues.
Ireland was highlighted a number of times at the launch of the European Atlas last week, with experts saying it is crucial a law is enacted. Just five of the countries analysed had no AHR law: Ireland, Albania, Bulgaria, Romania and Ukraine.
Lack of publicly available data is also an issue at present. Statistics are not published on a regular basis, though the HPRA collects data from private clinics annually.
Noteworthy asked the HPRA for their latest data on treatment cycles and can now reveal that this has almost tripled over the past 12 years, with over 11,000 treatments being conducted by private clinics annually before the pandemic.
A number of fertility clinics also told Noteworthy that they have seen an increase in demand for their services over the last two years.
On this, the Department of Health spokesperson said:
The AHRRA will collect and publish statistical information from AHR providers on all AHR activities and their outcomes. The AHRRA will also publish information documents in respect of AHR treatments and develop codes of practice for providers of AHR services.
Lack of data from Ireland is evident in the European IVF Monitoring Programme by the European Society of Human Reproduction and Embryology (ESHRE). These reports were used as the basis of the European Atlas of Fertility Treatment Policies last week.
Almost all – six out of seven – clinics operating in Ireland provided data to the monitoring programme up to 2010 when this began to drop off. No data was provided by Ireland in its most recent report, with only one clinic – Merrion Fertility – participating in the previous report.
Private clinics are here to stay
A number of clinics responded to Noteworthy when we asked how the private fertility sector would be impacted by the implementation of a public-funded IVF system and if this was welcomed.
A spokesperson for Sims IVF said it “fully supports” this and added that they “believe it is important to ensure that everyone who needs help starting a family can access treatment and that financial means should not be a barrier for any patient”.
First IVF welcomed “anything that improves the patient experience and care and see this as a positive” and Beacon Care Fertility welcomed “increased accessibility to IVF for everyone”.
The Thérapie Fertility spokesperson said they “would like to be part of the solution to the fertility crisis in Ireland, should state funded IVF become available through private clinics also as it is in the UK”. They also referenced their “more affordable price point” and added:
State funded IVF has been on the table for many years. When it does come in, it will make the private sector review their pricing.
Waterstone Clinic stated that they “have lobbied for public funding for fertility for a long time so that sub-fertility is recognised by the government as a medical need”. The spokesperson said that they are hoping “patients can retain their agency and choice” and added:
“Patients must be allowed to choose who will provide their treatment… rather than needing to attend a particular fertility site to access financial support for such an important need.”
Merrion Fertility’s Wingfield said “we absolutely have to have public funding and any possible impact on the private sector shouldn’t really come into it”. She added:
“In most countries which have public funding, there is also a need for private clinics as well as most countries have some restrictions on access… So, sadly, there will still be a need for private care in this area.”
This is the case in England where over two thirds of treatment cycles were self-funded through private clinics in 2019. Though there is a public model there, availability is often dependent on location, leading to a postcode lottery.
‘All over the place’
Sarah Fennessy, who is struggling to decide what to do next after spending over €15,000 on treatment over the past two years, told Noteworthy: “We’re choosing between two lives that we want to live.”
Fennessy and her partner are currently deciding whether to go ahead with their wedding or fund more treatment.
Economic projections based on lifetime tax calculations referenced in a 2017 Health Research Board report show that funding of IVF by the State “represents good value for money”, with costs of IVF-conceived children breaking even around 40 years compared to 38 years for those born without IVF.
Yet, Ireland continues to be the only country in the European Union where fertility treatments such IVF are not publicly funded.
Kim Moore who had just undergone her final embryo transfer when she spoke to Noteworthy in recent weeks told us that getting fertility treatment in Ireland is “financially, physically and mentally one of the biggest strains you’ll put on yourself”.
Unfortunately, that embryo transfer didn’t work out. When we originally spoke she had said the couple “had no reserve” and was unsure if financially they could keep doing it themselves. Though she had said that this was their last chance, she wasn’t sure what would happen if they didn’t get good news.
“It’s very hard to switch off saying – ‘We won’t have another baby’. Clearly, if you’re going this far, you want another baby.”
Moore said her “head is all over the place”. From speaking to people around Ireland as part of this investigation, she is clearly not alone.
*Name has been changed
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Have a listen to The Explainer x Noteworthy podcast – out now – which delves into the investigation’s findings and hears from people about their experiences with and financial pressure of fertility treatment in Ireland.
Our FUNDING FERTILITY investigation was carried out by Maria Delaney of Noteworthy. It was proposed and funded by you, our readers.
Noteworthy is the investigative journalism platform from The Journal. You can support our work by submitting an idea, funding for a particular proposal or setting up a monthly contribution to our general investigative fund HERE>>
We also have other health-related proposed investigations which you can view here, including BIRTH PLACE which hopes to investigate why the Irish health service offers so little choice for expectant mothers.
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