The high, mysterious and added costs of IVF
Patients can spend thousands of euro on ‘add-ons’ to boost their chances of pregnancy but their effectiveness is far from clear
According to a survey of 38 couples who have had IVF in Ireland, 62 per cent said they were not made aware of the lack of scientific evidence for the add-ons to prove success rates were boosted. Photograph: iStock
Many Irish clinics providing IVF for infertility also offer “optional extras” to allegedly boost chances of becoming pregnant. However, the cost of these add-ons is prohibitive for many couples and their effectiveness is far from clear.
More than eight million babies have been born through IVF since the world’s first in 1978. In Ireland, as many as one in four couples struggle to conceive. In 2017 the Minister for Health announced that the Government had set aside €3 million to fund infertility treatment for the first time, details of which are yet to be announced.
In the meantime, couples are spending thousands of euro, on top of the basic cost of IVF, on what clinics term “optional extras” or “add-ons”; emerging techniques that may have shown some promising results in initial studies, but have not been proven to improve pregnancy or birth rates. In some cases in Ireland, couples are being charged an extra €9,000.
The Human Fertilisation and Embryology Authority (HFEA) in the UK has produced a website for patients called treatment add-ons, where they list some of the common services and use a traffic light system to rate them. Red means no evidence, amber means some evidence, and green means there is evidence that the add-ons are proven to boost success rates of treatment.
Add-ons commonly offered in Ireland include: assisted hatching (helping an embryo to “hatch” to improve chances of implantation to the wall of the womb); intrauterine culture (which differs from conventional IVF in that it allows the early stages of embryo development to take place within the patient’s womb instead of in the lab); and time-lapse imaging (allows the embryologist to take thousands of images of the embryos as they grow without disturbing them. This means the embryos do not have to be removed from the incubator, and it allows the embryologist to get a continuous view of each embryo as it develops, rather than once a day).
All of these add-ons are listed as red and amber by the UK authority.
How much are Irish couples paying for IVF?
The majority of clinics in Ireland list IVF at costing between €4,500 and €5,000. The clinics offer optional extras to the treatment which they claim may boost your chance of success, or with what is termed as a “live birth”. The clinics will emphasise that while they can’t guarantee success, their own research will suggest that these extras will help the process. Add-ons can cost from €200 up to almost €9,000.
According to a survey of 38 couples who have had IVF in Ireland, and conducted for this article, 84 per cent were offered add-ons at their clinic. One-third of those said they were later unable to pursue further treatment, due to lack of funds after having bought these add-ons (but not achieving a live birth).
– 62 per cent said they were not made aware of the lack of scientific evidence for the add-ons to prove success rates were boosted
– 40 per cent of respondents said they felt under pressure to buy these add-ons
– 84 per cent said that using add-ons affected the cost of their treatment bill.
‘Money for nothing’
“You would pay anything if it meant getting pregnant,” said one. “They put ideas of add-ons in your head, although they do tell you when you question them that there are no stats to say it works, but they know you’re so desperate and that you won’t say no. I’ll never forget my head spinning over these decisions and kind of knowing we are handing over money for nothing.”
The couple did multiple rounds of IVF in Irish clinics, all with add-ons and all resulting in failed cycles. In total, they spent approximately €60,000 on treatment.
Another Irish couple described their experience: “After having successful treatment in America I look back on my treatment in Ireland and realise that the more I failed, the more the clinics in Ireland made. During our treatment at home I was advised that I had what’s called ‘natural killer cells’ that were causing our failed cycles, and that by taking intralipids this would be resolved. It wasn’t until I was seated waiting to be hooked up to the drip [for the intralipid treatment] before I was presented with a form to sign that explained the lack of scientific research to suggest this would work. Between tests and intralipids, the cost was an extra €2,000 on top of our €5,000 cycle. It failed.”
Usually, your immune system works by fighting off any invading cells that it doesn’t recognise because they don’t share your genetic code. In the case of an embryo, the immune system learns to tolerate it even though it has a different genetic code from the mother. Reproductive immunology is rated red by the HFEA.
One of the most common add-ons offered in some Irish clinics is called PGS (preimplantation genetic screening), a technology used to help identify genetic defects within embryos. PGS is one of the most common add-ons offered in clinics. One Irish clinic offers this as an add-on to its clients, at a cost of almost €9,000 – twice the cost of IVF itself. This procedure has been offered since 1995 and while there have been many studies into its effectiveness, none conclusively show that PGS improves live birth rates. The add-on is offered in many centres globally and accounts for more than 20 per cent of assisted reproductive technology in the US. PGS on three-day embryos is listed as red on the HFEA guide, and on five-day embryos it is listed as amber.
It was reported late last year that new legislation on the funding was delayed, with Taoiseach Leo Varadkar saying at the time that those working on the IVF legislation were also working on abortion laws and guidelines, which led to the delay. Stephen McMahon, chairman of the Irish Patients’ Association, told The Irish Times that the Government has set aside €1 million to assist couples this year. He said it’s likely that means-testing will be ultilised to allocate this funding to patients and that couples will also have to make a contribution.
McMahon was unaware of how add-ons are sold by clinics and described it as sounding “super-commercial”. He says: “Of course everybody wants the best chance they can get, but it sounds like children are almost being commercialised.” He said patients should be reimbursed based on the treatment outcome, and that patients need statutory protection.
An expert view
Joyce Harper is professor of reproductive science at the Institute for Women’s Health at University College London where she is director of education, head of the Department of Reproductive Health and director of the Centre for Human Reproduction. She has worked in the fields of fertility, genetics, reproductive health and women’s health for more than 30 years. Harper is also the mother of three sons born through IVF. She strongly advises couples to avoid optional extras.
“They should not be routinely offered until there is clinical evidence that they are useful,” Harper says. “They are offered by many clinics at huge costs to the patients. Currently, there is absolutely no scientific research that proves any of these add-ons make any positive difference to your chance of having a baby. But when you are trying to get pregnant, you will try anything your doctor suggests.”
Harper has published multiple papers on the research that has taken place into these add-ons, and campaigns extensively in the UK in an effort to prevent clinics from misleading their clients, and mis-selling these products. She says that, in her experience, most doctors are acting in good faith. When she puts the research to clinics selling these add-ons, however, the response is usually along the lines of “if we don’t do it, the next clinic will”.
“They need and want the numbers, and the income along with it. However, the facts remain clear that there is no proof behind any of the add-ons currently offered throughout the UK and Ireland in private clinics.”
A number of key stakeholders in the UK, including the HFEA, have written a consensus statement for patients and clinics about the responsible use of treatment add-ons in fertility services. “Treatment add-ons have entered clinical practice with the aim of improving the outcomes of fertility treatment. Offered responsibly, they can be a sign of healthy innovation in the fertility sector. However, there is currently no conclusive evidence that any of the add-ons offered in fertility treatment increase the chance of a pregnancy or live birth . . . we believe that culture change is required, if the potential benefits of new treatments are to be offered responsibly. It’s time to have an open and honest conversation about treatment add-ons,” the document states.
Harper was part of the team that worked on the website and the consensus document.
Another industry expert in this field is Gerri Emerson, an Irish embryologist working in Dubai. Emerson worked for two decades in Irish clinics and is also in strong disagreement with these add-ons. “I support greater transparency in the sector with regard to treatment add-ons. Whilst it is important that we work to ensure patients always receive the latest treatments and have access to new technologies in order to maximise their chance of treatment success, it is also essential that we ensure patients are fully informed and that only procedures or technologies that are evidence based are used.”
Harper’s 2017 published report, called Adjuncts in the IVF Laboratory: where is the evidence for ‘add-on’ interventions?, says “the vast majority of IVF clinics want to help their patients achieve a pregnancy as much as possible, which may involve undertaking unproven procedures and tests supported by anecdotal, low quality or unpublished evidence”. It concludes that “regulators and professional bodies also have a role to play in ensuring that only suitable practices are used in the clinic”.
None of the most popular add-ons has yet been rated green. To get a green rating, an add-on must have more than one good quality randomised controlled trial which shows that the procedure is effective and safe. Meanwhile, the remaining treatments, such as endometrial scratching (in a small number of cases an embryo won’t implant because the lining of the womb isn’t providing them with the right environment and endometrial scratching is carried out before IVF where the lining of the womb is “scratched” using a small sterile plastic tube) and embryo glue (embryo glue contains a substance called hyaluronan, which may improve the chance of the embryo implanting in the womb), carry an amber designation, meaning that research has indicated some benefit, but more robust evidence is needed.
Jennifer Ryan is a mother of two sons born through IVF. She writes a blog at thescenicroutebyjen.com