BY EMILY WESTBROOKS
Earlier this month, Taoiseach Leo Varadkar announced that the government would introduce legislation to address Human Reproductive Assistance and the many issues involved. From covering the financial burden of in vitro fertilisation, to outlawing commercial surrogacy, the bill will establish an Assisted Human Reproduction Regulatory Authority which will begin to address what many believe should have been dealt with long ago.
Infertility affects one in six Irish couples, according to the World Health Organisation (WHO). You may not be personally affected, but at it’s likely that at least one of your friends or family is. The WHO admits the exact number of people who struggle with infertility is difficult to pin down because many estimates only examine female issues, but they maintain that as many as 25% of people in developed countries who maintain a “child wish” are not able to get pregnant. That’s a staggering statistic and it begins to explain why the reaction to the announcement of the Assisted Human Reproduction Bill was so strong.
The announcement of the AHR bill prompted a positive response from people directly affected by infertility, and many have focused on provision for public funding for assisted human reproduction. But the bill is actually providing for much broader regulation of the field in ways that may not make creating a family easier for everyone.
The Government’s Plan
The bill will firstly establish the Assisted Human Reproduction Authority, which will research various topics that come under this large umbrella, and will start to make regulations for fertility treatment, surrogacy, and egg and sperm donation.
One of the main provisions is for the Authority to design a scheme for the cost of fertility treatment to be covered by the government. At this time, Ireland is one of only three countries in the European Union that do not provide financial assistance for fertility treatment. According to Minister for Health Simon Harris, his department will report to the government by the end of the year with proposals for fertility-related State funding.
Many areas of assisted reproduction will be determined by the AHR Authority over the course of the next months and years. For instance, they have been tasked with outlining the conditions relating to the donation of gametes and embryos for use by others or for research, permitting posthumous assisted reproduction and outlining specific conditions under which surrogacy in Ireland will be permitted, including the requirement for all surrogacy agreements to be pre-authorised by the AHR Regulatory Authority.
Access to Fertility Treatments
Professor Mary Wingfield, the Clinical Director of the Merrion Clinic, has long been a vocal supporter of the bill’s provision to include government cover of fertility treatment. She believes this will greatly benefit couples facing fertility problems.
“Infertility is one of the most distressing medical problems that any couple can go through and can have effects similar to being diagnosed with cancer,” Prof Wingfield says. “These couples not only have to struggle with the infertility but they often run up huge bills paying for IVF treatment. Other couples just simply cannot afford treatment and have to look towards a life of never having the joy of children. These people are scattered throughout our society and include rich people, poor people, young people, older people, our sisters, brothers, friends, daughters. Taking the burden of the cost out of treatment will greatly help these couples. It won’t ensure that everybody has a child but it will certainly reduce the trauma involved and will make it a more equitable and fair system.”
For many couples, the cost of fertility treatment is a deciding factor in their treatment process. Costs can range from between €1,500 for a cycle of intrauterine insemination to an average of €5 – 7,000 for a single cycle of in vitro fertilisation. A couple might be able to afford a single cycle of IVF, but stop treatment after a failed attempt because they simply can’t continue to bear the cost.
Professor Wingfield points out that some measure of public funding can actually increase the success of treatment – and result in healthier treatment.
“Studies internationally have shown that the outcome of treatment is medically superior when there is some element of public funding. As opposed to commercially-orientated programs at commercial private clinics, treatments where there is public funding are more likely to result in more singleton pregnancies and less twin and triplet pregnancies. This has major implications both for the health of the mothers and babies involved and also for the costs of caring for these babies.”
Even today, infertility remains a very private struggle that is often very challenging for those involved. A recent programme on TV3, called Baby Maker, shed light on a process that, for many couples, is emotionally and physically taxing.
Orla Galvin started a social media group called IVF & Me earlier this year when faced with the prospect of undergoing fertility treatment. It provides women who are in a similar situation with a private place to discuss their shared trials. IVF & Me now counts over 600 members, including some who often haven’t shared their plight publicly or even with family members.
One of the group’s Limerick-based participants spoke to Limerick Life about her experiences, although she would prefer to keep her identity private. She recounted the moment she and her partner formally entered into fertility treatment: “I remember the day we went to the clinic to sign the consent forms. Up to that point I had been so fixated on the process of what we were doing I hadn’t allowed myself to really sit down and think about it. But then we had to. We read through the forms and I cried. I cried the whole way to the clinic.
“It’s very easy to normalise IVF because it becomes your world and it just seems like a means to an end. You are so desperate to have a baby you will do anything and, for me anyway, it became like a process, something I had to do to get the family I so badly wanted. But that day I was forced to look at what we were really signing ourselves up to and more specifically what we were accepting we couldn’t do. It’s heart-breaking to know you just can’t do it.”
Local mother Denise Flanagan shared a happy ending to an otherwise difficult journey through two rounds of IVF. She gave birth to a baby girl in 2015.
“It’s so hard doing this as you want it to work so bad, that everything sets you off. I had told people that we were going through it, as we felt that we could use their support but found a lot of people didn’t understand what it meant to us. It isn’t their fault they don’t understand what it’s like to not be able to have a baby, which is the most natural thing in the world.”
Of course, the announcement was not without its detractors. Many online commenters urged the government to consider paying for other medical procedures or housing for the homeless. Still others wondered whether, with so many orphans around the world, would couples facing infertility not consider adopting? Not all comments were phrased so subjectively, with many strong opinions being voiced.
Professor Wingfield explains that infertility isn’t as frivolous as negative comments make it sound. “It is very important to emphasise that infertility is a medical disorder and not an optional extra for rich people. People can have infertility problems for various reasons including infection, cancer, previous surgery, ovulation problems and sperm problems. All of these are medical disorders and deserve to be treated in our public health system in the same way as any other medical issue. Having said that, infertility treatment is expensive and very few countries around the world are able to afford unlimited treatment. Most countries will have selection and exclusion criteria for treatment and this is likely to also be the case in Ireland. Other treatments need to be considered also but for over half of patients with infertility, IVF will offer them the best hope of success.”
Should couples who face infertility consider adoption rather than human reproductive assistance such as IVF or IUI? Unfortunately, the options for adoption in Ireland are even more expensive and time-consuming than several rounds of IVF.
There are several ways in which adoption is a much less viable option to most couples facing infertility. First, the process of getting approved by Tusla, the Child and Family Agency from whom you need approval before pursuing adoption, typically takes nearly three years. The process involves informational meetings, appointments with caseworkers, home visits, and copious amounts of paperwork. Each of these stages also involves many months of waiting in between – and that’s if you are able to pass each step the first time, or at all.
Currently, domestic adoption, even domestic foster to adoption, is all but nonexistent. In 2014, there were six domestic straight adoptions; in 2015, there were seven.
The case for international adoption is just as bleak. In 2010, Ireland enacted the Hague Adoption Convention, meaning that from that point forward, Irish couples would only be able to adopt from countries included in that convention. For Ireland, that meant that several “sending countries,” as they’re called, were immediately eliminated, including Russia and Ethiopia.
Currently, the list of sending countries Ireland cooperates with for inter-country adoption stands at 11, including some restricted countries such as Poland, which will only allow adoption to parents of Polish origin or heritage. Romania has similar rules, which may explain why no Romanian children have been adopted to Ireland over the last six years. Only one of the sending countries, the United States, allows couples to adopt infants – and only then at costs running into the tens of thousands. The remaining countries typically have long waiting lists – Bulgaria is currently approaching six years – and offer only the option of adopting older children, almost always with additional medical and psychological needs.
If a couple was interested in adoption, ready for the marathon of the application process and willing to welcome an older child with potential health challenges, the cost would likely stop them in their tracks. According to the Adoption Authority of Ireland, inter-country adoption costs between €35-57,000. If you are interested in adoption from the United States, you’ll need to shell out another at least €10,000 more, as well as spend twelve weeks in the United States finalising the adoption.
Orla Galvin of IVF & Me, who gave birth to her first and likely only child just as this story was going to print, continues to rally around those in the middle of the struggle toward building a family.
“One in six couples are struggling to conceive in this country and suffering all too often in silence,” Galvin wrote earlier this year. “Treatment can cost anything from €4-8k per cycle never mind investigative tests. If you are under 35 there is approximately a 50% chance of it working, if 37 like I was the odds can drop as low as 35% for a live birth and at 40 approx. 20% chance of live birth. With odds like these Irish couples are borrowing from family and banks to gather funds, spending lifetime savings for repeated cycles with no guarantees of success.”
In reference to the news of state funding for IVF, she notes that the HSE already pays for a variety of other healthcare issues, including “testicular problems, ejaculation issues, testosterone treatment and Viagra medication”. In 2015, the HSE spent over €6m on anti-impotence drugs, and more than €3m was spent in public hospitals on cosmetic surgery, including breast augmentation and liposuction.
She is optimistic that the new legislation will give hope to struggling couples, and educate the public on a subject that is rarely discussed in our society. “Our baby boy will not grow up to be told he’s only a ‘test tube baby’,” she says. “He’s loved, fought for and will always be safe and secure in our loving home.”
The exact particulars of the Assisted Human Reproductive Bill remain to be seen, but those on the journey toward fertility treatment, or just beginning, will be keeping a close eye on the details that come from the AHR Regulatory Authority in the coming months. People whose fertility treatment has been a financial burden may soon breathe a small sigh of relief, while those who were looking toward surrogacy and embryo or sperm donation will likely be anticipating the coming announcements with more trepidation.
Regardless, the news that the government is finally addressing this issue may well be a welcome development for the one in six Irish couples who are struggling with infertility.