Those desperate for a baby are let down by lack of state regulation

Ireland is one of only three countries in the EU where fertility treatments are not funded by the State, writes Alison O’Connor.

WE ARE soon set to be convulsed by a referendum debate over the thousands of Irish women who end their pregnancies in abortion each year, but the chances are we will continue to ignore the ones who are desperate to get pregnant and turn to science for help.

The assisted human reproduction (AHR) sector is a multimillion-euro industry in Ireland, responsible for around 3% of all Irish births every year, but successive governments have almost tried to pretend that it does not exist.

This is an exceptionally vulnerable group — couples and individuals who are desperate to have a baby.

They receive no financial assistance for treatment, and nor do they get the protection of specific laws to govern how our seven or so fertility clinics, which carry out thousands of IVF cycles each year, operate. Two of these clinics are non-Irish owned.

Nobody knows exactly how many Irish women undergo treatment each year (at an average cost of €6,000 per round of it) or exactly what additions to the more “basic” treatment they may be offered (even if they have doubts about the effectiveness of those, who is going to say no if there is even the slightest chance it could result in a pregnancy?)

A woman’s best chance of success, and this is given her age and other considerations with AHR, is 50% but for most it is 30%, and that decreases with every year she ages.

Yet you’d need to be a statistician to make sense of some of the statistics offered on websites by clinics in Ireland because they are under no obligation to standardise the data they report. This makes it impossible for couples to compare the success rates, as you can elsewhere, between clinics.

For instance, a clinic could pick a rate relating to a particular procedure with a particular group of women where the success rate had been particularly high and quote this on their website. It may be highly misleading, but at present, because of the refusal to tackle the situation by politicians, there is nothing to stop them. At a European level, data is collected to detail the number of AHR treatments and their success rates in each country, but only around half of the Irish clinics supply their figures.

Add to that the lack of regulation around surrogacy, egg donation, embryos and donor sperm. Donor sperm is mainly imported. Did you know, for instance, that the same sperm donor will only be used for three Irish families given the relatively small size of the country, to avoid the possibility of half siblings getting married?

However this rule is not laid down in a regulation anywhere — it came about as a result of the embryologists in different clinics coming together and deciding, on ethical grounds, this was the best thing to do. In this instance the clinics have behaved very responsibly, but it is voluntary and what happens if one of them decides not to partake anymore in relation to donor sperm?

These issues have been hanging around a long time and inevitably in an area that is so fast moving in terms of science, with massive ethical implications, the politics will fall behind. But we are so far behind now that it is quite unbelievable, and a serious injustice to those who are undergoing treatment.

These issues and more are addressed in a new book The Fertility Handbook by Prof Mary Wingfield. It’s a great up-to-date and plain speaking guide for the one in six Irish couples who are affected by fertility issues.

The Irish Commission on Assisted Human Reproduction was set up in 2000 and included Prof Wingfield among its members. It did its work extremely well, making 40 recommendations. These were published in 2005, 12 years ago.

Top of the list was that a “regulatory body should be established by an Act of the Oireachtas to regulate AHR services in Ireland”. The 39 others related to all of the things previously mentioned, not least the protection of children and access to treatment. The report gathers dust on a shelf in the Department of Health.

The Children and Family Relationships Act 2015 was introduced in April 2015, to modernise Irish laws on parentage, banning anonymous donation and providing for the setting up of a national donor conceived person register. But, in what Prof Wingfield describes as a “typical Irish fashion”, the official position is that certain parts of the act, which deal with donors, were never commenced and will not until “appointed by the Minister for Health”.

As a result Irish people undergoing treatment with donor sperm, eggs and embryos, and their children, are left in an uncertain situation.

It’s clear from her book that Prof Wingfield, clinical director of Merrion Fertility Clinic, and those she works with, are weary and frustrated from the lack of political action. The Merrion is a non profit-making charitable organisation but Prof Wingfield speaks of the implications of the growing commercialisation of the sector.

According to a statement this week from the Department of Health, officials are drafting a bill to regulate the broader area of assisted human reproduction and work is “well advanced”.

You’d be inclined to believe that when you see it in law.

As Prof Wingfield points out people who have never experienced infertility or who have not had to consider having treatment can be dismissive of the “very genuine and heartbreaking needs” of those who cannot have a baby. It “is absolutely a medical disorder with major life and health consequences”.

The lack of sympathy and understanding makes it even harder for this group who are not very vocal anyway, given the feelings of failure often surrounding an inability to have a baby.

Almost two years ago Leo Varadkar, then the health minister, pledged that fertility treatments, out of reach financially for so many couples, would be publicly funded through the public health system. As with everything else to do with this area there has been talk but not action.

Prof Wingfield says she is not aware of any other valid medical treatment that is not available on our public health service. Ireland is one of only three countries in the EU where fertility treatments are not funded by the State.

The level of public funding to this sector has been shown to affect medical practice. Research has shown, for instance, that decisions around how many embryos to transfer to a woman has major cost implications for the State since compared to singleton pregnancies, twin pregnancies costs three times more, and a triplet pregnancy 10 times.

In Ireland at present there is no incentive for patients or clinics to advocate just using one embryo per IVF cycle. Our already stressed maternity system is put under further pressure by multiple pregnancies as a result of these fertility treatments.

Prof Wingfield points out that increasing numbers of Irish couples are travelling abroad to countries that have less expensive clinics and this is how many of the multiple pregnancies occur. “It is the Irish taxpayer who bears the substantial cost of caring for these mothers and babies….is this false economy for our Government?” she asks.

It’s a basic question but not a bad one for the Government to at least finally make a start on.