Finding a path through infertility
The high cost of treatments here and lack of donor egg options are driving the growth of ‘fertility tourism’
“It was a very good and detailed report,” says NISIG’s clinical ambassador, senior clinical embryologist Mr Declan Keane. “It just needs to be updated and put into practice.”
However, the lack of legislation does not mean reproductive medicine is not regulated here. Clinics must have licences from the Irish Medicines Board (IMB) for each of the services they offer.
But in the absence of a specialised regulatory body, like the Human Fertilisation Embryology Authority (HFEA) in the UK, there is no source of independent information for people seeking infertility treatment in this State.
The HFEA website carries a guide to all the UK fertility clinics, listing the procedures carried out and the success rates, which is something NISIG co-founder, Helen Browne, would like to see here.
While both Keane and Walsh agree there is a need for greater transparency, they point out there are downsides of collated statistics.
For a start, the figures are inevitably going to be about two years out of date – a significant time lapse in such a rapidly developing area of medicine – and clinics would also be inclined to “cherry pick” patients to keep their success rates up.
NISIG, a voluntary group, does its best to support, inform and empower people. Keane and Browne sat on the World Assisted Conception Task Force, which was devising a patient charter that all fertility clinics would be asked to adhere to.
Unfortunately, that initiative ran out of steam but NISIG would like to see a “patient pathway” here to guide people through the maze of services on offer.
The internet is a much-used resource in researching clinics, both here and abroad, but people travelling independently for procedures outside the State are “getting into a quagmire”, says Keane.
“You don’t know what you’re getting into and who is going to take responsibility for medical duty of care if you have problems as a result?” It’s not fair to go into the public medical system here with those problems because they don’t know what’s going on, he points out.
As director of ReproMed, that has clinics in Dublin and Kilkenny and which works with “sister clinics” abroad, Keane says: “I would nearly describe myself as a travel agent for IVF treatment abroad.” He tracks developments and performances in clinics both here and abroad and lays out the choices for patients who attend ReproMed for consultations and diagnostic tests.
“The main one we are using is in the Czech Republic,” he says. “The legislation is good, even a bit tighter than the IMB; the services are excellent; the technology is very advanced and the cost is cheaper than in Ireland.”
No financial assistance
Unlike the UK, where people are entitled to one free round of IVF – and in Belgium they can have up to six rounds – the State does not provide any financial assistance for infertility treatments; nor is it covered by health insurers.
But the capping of medication costs at €144 a month under the Drugs Payment Scheme is a significant saving and expenses can be off-set against tax.
Cliff says it was lonely for him and Anne having to make the trips to Spain and they told very few people what they were doing.
“It was emotional going out and if it could have been done in Ireland, it would have been better – but the clinic we went to was absolutely amazing.”
He has found it very hard seeing all Anne has had to go through and knowing it was due to his infertility. “It is so, so stressful on a relationship.”
As patient-support manager at the Hari clinic in the Rotunda Hospital, Dublin, Joan Hamilton sees how stressed couples can be; they have lost control of an important aspect of their life.
“What should have happened in the comfort of your own home is now happening in a clinic,” she says.
Hari does not do donor conception but she sees people who have been unsuccessful in treatment and who are considering moving on to that option.
It is an “enormous jump, which really needs to be discussed”, she says. “It is a huge change from thinking ‘genetically this is mine’ to ‘am I able to cope with this?’
“Science, technology and medicine are moving on so quickly,” she adds, “the human part of these treatments can be overlooked. I feel in Hari we look after the human part of it – and value that.”
While NISIG is a great source of support, says Cliff, making friends through it can be a double-edged sword because it is very painful if they become pregnant and you don’t.