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New research on why UK patients travel for infertility treatment abroad

Pregnant woman abroad

Cross border fertility treatment is one of the fastest growing areas of medical travel but has often been the subject of controversy and media conjecture, Lorraine Culley, Professor of Social Science and Health at de Montfort University is the Principal Investigator for Transrep, an exploratory study of cross border reproductive care. The research project was designed to explore the experiences of UK residents who travel abroad for fertility treatment and was funded by the UK Economic and Social Research Council. Caroline Ratner of the IMTJ spoke to Professor Culley about the recently completed study.

What do we know about the extent to which people travel abroad for fertility treatment?

We know very little about precisely how many people travel abroad for fertility treatment. There have been a few studies internationally but the available data is somewhat speculative. There’s been a study of Canadians travelling to the USA and which also, paradoxically, showed Americans travelling to Canada.  We’ve also had in the European context a study by Shenfield and colleagues published in 2010 which discussed the extent of travel specifically within Europe. They surveyed six different countries in Europe and from that data they estimated that possibly 25,000 cycles of cross border treatment are occurring in Europe each year. However, this data has been extrapolated from a survey which had data from six countries and in many cases was incomplete. However, by all accounts it seems to be a growing phenomena and something that is on the increase. 

Why do people seek fertility treatment abroad?

There are lots of different reasons that have been suggested by academic and media commentator. Cost, availability of treatment and legal factors are among the main motivating factors.

In many countries there are legal restrictions on the kind of treatments available, which are often a motivator for people to travel elsewhere.  For example, in some countries there are restrictions on the categories of people that are eligible for fertility treatment, such as in France where single women and lesbian couples are not allowed to have fertility treatment, so they go to Belgium. Sometimes people want to travel for embryo transfer because there are growing restrictions on embryo transfer in several European countries, and then there are potentially a number of people who want to select the sex of their child or other traits that they want to purposely seek out. Often they cannot have this kind of treatment in their home country.

Others choose to travel for the anonymous donor service that is not available in their home countries or conversely others travel because they want information about donors which might not be available in their own country.

What issues have concerned commentators about cross border fertility treatment?

A number of concerns have been raised by legislators, social workers, clinicians and counsellors about a variety of aspects of cross border fertility treatment, including concern about safety, information, cost, donor information, exploitation of both donors and patients and quality control issues.  

Quite a lot of the motivation for travel is for first party conception yet we know very little about donors and we need a lot more information about them. Concerns have been raised about the potential difficulties in finding out information about donors in countries where donors are anonymous and people are not going to be able to get the information they want about the donor, which can have concerns and implications for the families.

There are also issues surrounding the potential health and safety of the donors themselves who may be strongly incentivised financially to put their health at risk by becoming a donor.  Many donors are compensated to a higher extent than they are in the UK and it is not clear yet whether they have full counselling about the implications of what they are doing. 

Many have raised quite important concerns about safety, particularly about safety conditions in countries where clinics might be less regulated than in the UK and there are concerns about the potential exploitation of patients who often seek treatment overseas as a last resort and are potentially quite vulnerable.

Why did you start your study into cross border reproduction?

We were concerned at the lack of information about why patients were travelling. There has been a lot of media speculation about so called “fertility tourism” but very little hard evidence about who is travelling, why they are travelling, and what happens to them at these clinics. Although we have some information about numbers there isn’t any research into the motivation of patients or their experiences. 

The media image of the fertility tourist has been largely negative, so we have this image of the older woman who has left it too late, and therefore needs to travel overseas for donor treatment, and then having treatment in “dodgy” foreign clinics.  Then there is the image of them coming back carrying triplets which brings with it the whole issue of the burden on the home country’s healthcare system, particularly in the UK. We wanted to find out if this was really the case and we wanted to find out what was motivating people to do what appears to many people a potentially risky venture, or at least an extremely inconvenient thing to do.

How did you go about this study?

We did three things.  We first began with a literature review. This didn’t reveal a huge number of studies of reasons for travel or patient experience. We then interviewed health professionals and counsellors or other people with a direct interest in these issues. We talked to about 15 people who had some stake in the process, and then we spoke to a lot of patients which gave us a general context and feel for the issues.

Then we went on to recruit people from a variety of sources who had either been or were planning to go abroad for fertility treatment. We recruited from various internet fertility forums, clinics and from the media coverage the project got when it was set up and from word of mouth. We talked to 51 people, which amounted to 41 cases - 41 women and ten men. There was very little information available about how men saw the process. Infertility is usually seen as a woman’s health issue but it was important to us to get a male perspective. Most people in the study were either married or cohabiting, and we had six single women without partners. Everyone in the group was heterosexual apart from one lesbian couple.

What were the motivations for travel?

We found that quite a complex set of reasons went into the decision making process. For some people cost was clearly an issue. In the UK we have limited public funding for IVF and something like 75% of IVF cycles in the UK are carried out in the private sector. Not only are these expensive but there is very little insurance coverage for fertility treatment so most patients are paying for themselves. So, seeking out a cheaper option abroad was quite important for many especially as some of these people had already had private treatment in the UK and had spent quite a lot of money prior to travel. 

Another motivator was disappointment with the quality of care in the UK. Many of them had not had the best experience in the UK, and overseas clinics often came out quite well in comparison to UK clinics.  In the UK, people complained that they felt they were treated like a number, that they didn’t have good communication with staff and for some people that was a clear reason for going abroad. 

The type of treatment was also a factor, including availability of donors. Over 70% of those taking part in the study were having 3rd party treatment of one kind of another, either donor eggs or donor eggs and sperm or donor sperm. Within the UK, there is currently a quite serious shortage of donors, particularly egg donors, and therefore there is very little alternative but to seek treatment in places where donors are more available and waiting times much shorter.

Interestingly, contrary to the UK stereotypes, the average age of the woman going abroad for fertility treatment was just under 39, not substantially older than the average age of people having treatment in the UK.

Where did people in the study travel to?

They went to quite a wide spread of countries, fourteen in total, with 40% travelling to Spain and the Czech Republic.  This figure very much reflects the availability of donors in those countries. Some people went to specific countries for reasons of convenience or perhaps they had relatives in or familiarity with the country. Countries were mainly in Europe, South Africa, United States, Barbados, Ukraine and India.

How involved were the UK clinics in this process?

In our sample, we found that very few clinics were involved in shared care arrangements with overseas clinics, but there are more since the data was collected.  Most people had to organise their own treatment and travel but few had used an agency. Most organised it themselves, using the internet.  They did have some relationships with UK clinics because they needed pre-treatment preparation and follow up care in the UK.  They usually arranged this with clinics where they’d had treatment in the UK and sometimes with independent agencies that offer this service. Very few people had a direct recommendation of an overseas clinic from a UK clinic and many said that they would have liked some kind of quality control, in the form of a recommendation of a good place to go.

In terms of follow-up they had to have some help from UK clinics, and sometimes found that hard to organise and said that the main disadvantages to going overseas was pulling the preparations and follow up together. However, they said that the internet really helped because they could find out information from others who had gone through the process and many felt they needed and would have benefited from more help.

What were the outcomes of people who went overseas for treatment?

A considerable number of them were successful in achieving pregnancy. One of the important issues for us was finding out whether there was a higher incidence of multiple pregnancies as a result of treatment abroad. This is one of the concerns and criticisms of the process.  We found that over 80% had a single pregnancy, with a twin rate of 19%, in fact a very similar to rate in the UK. So again, the myth of the stereotypical multiple pregnancies resulting from fertility treatment abroad has been burst.  Clearly our sample wasn’t completely representative, but it certainly seemed to be the case that people are quite aware of risk of multiple pregnancies.  While many people felt that a single embryo transfer was not for them they were nevertheless quite wary of having triplets or multiple pregnancies.  Patients were regulating themselves and the number of embryo transfers, although there were one or two destinations where people did have a high number of embryos transferred.  We had one person who went to the United States, who had five embryos transferred. This was excessive but she ended up only having a singleton pregnancy. Another mentioned having a fetal reduction. In the Ukraine and India there is a higher number of embryos transferred but mostly its two or three in Europe.

Is cross border reproductive care a problem or a solution?

Well that very much depends on your perspective and who you are. I think from the perspective of the people who have the treatment it’s a solution. They can’t get what they need or require in their home country for whatever reason and feel compelled to go overseas. Legal reasons are a very important in some European countries, a recent study (Shenfied) shows that legal restrictions to access are a really important motivator for people travelling in Europe. Mainly these are Italians where very restrictive legislation was introduced in 2004 which made it very difficult for people. In Germany, there is a restriction on embryo donation, so people are travelling for legal reasons more so than cost, and in France, for the reasons mentioned before.

However in the UK, we don’t have very good public funding or insurance coverage but we have a very liberal regime and have very few legal restrictions on the kind of treatments available or the categories of people who could have treatment. So from a British perspective, I think people feel that in the context of the shortage of donors and the relatively high cost of treatment that it is their right to seek treatment elsewhere and that it is a solution.

It is not however without its problems as people feel that it is a potentially risky thing to do. It is certainly quite an inconvenience, and does raise anxieties, particularly making the arrangements before travelling, and then arranging the follow up care. But I think their experiences were broadly positive. People also voiced concerns about language and communication problems which a few people experienced.

My own perspective is that it is a solution but there are still problems, not just the difficulties and inconveniences that people might face with making arrangements but there are these outstanding issues around donors, and the potential exploitation of donors. There also may be concerns about multiple embryo transfer that we didn’t come across but that’s not to say they don’t exist. There is also the potential for exploitation and whether clinics always give the best information about success rates, and whether conditions are always safe in countries where there is less regulation than in the UK. These are some of the potential issues that need to be explored.

What did the participants of your study have to say about cross border treatment?

We asked them if they felt there needed to be any legal change or attempt to regulate this process. The respondents had much to say and most of it was around “fixing” the UK system so they wouldn’t have had to go abroad to have treatment.  However for those who chose to have treatment abroad, both the patients and the other stakeholders felt that it was important to have good sources of accurate information about overseas clinics, about what was available, and to have information about what kind of questions to ask the clinic before travelling. Many said that it would be useful if there was a central provision of information about these clinics. Many people also felt that some kind of shared care with a UK clinic, and recommendations of overseas clinics by UK clinics would be useful and would reduce some of the concerns and anxieties that people might have.

What are the key recommendations the report made for patients wishing to travel for fertility treatment?

One of the key things is for people to have as much info as possible about the places, providers and clinics that they are intending to go to. It would also be helpful if there was some kind of objective information available and perhaps a checklist of the most important and relevant questions that prospective patients should ask when researching treatment options so that they can assure themselves about quality and safety.

Additionally it would be helpful to have information on regulatory and legal aspects of travelling for fertility treatment readily available which might not be applicable to other forms of medical treatment abroad. This is perhaps important in the case of travelling abroad for surrogacy where patients should find out as much information as they can about legal and nationality implications of surrogacy. We have heard of people having difficulties when returning to the UK with their babies so it’s important if people are considering surrogacy to obtain specialist legal advice prior to travelling so they are aware of the implications to minimise harm.

ESHRE, European Society of Human Reproduction and Embryology have recently published a good practice guide for cross border reproductive care, and our recommendations are really following on from the EHSRE initiative. We recommend that some kind of international accreditation for fertility treatment be put into place. I know that bringing that about is not going to be particularly easy. But it would give patients some reassurance, if there were some kind of benchmarking or kite-marking of clinics. This would need to be reliably monitored and could be extended to the wider international context rather than just Europe.

Another key recommendation is for patients to have access to counselling prior to or during treatment as unlike other forms of medical travel there are obviously very considerably long term implications to building a family this way, particularly when you have anonymous donor involvement.  We believe that people would benefit the opportunity to talk it through all the issues and implications with a specially trained counsellor. Of course, though, most people have thought about the implications of travelling for fertility treatment very seriously and most people are not doing it on the spur of the moment, but it is important to have that opportunity to have counselling.

Comment
Lorraine Culley, De Montfort University

Lorraine Culley is Professor of Social Science and Health at de Montfort University, and is the Principal Investigator for Transrep, an exploratory study of cross border reproductive care. The research project was designed to explore the experiences of UK residents who travel abroad for fertility treatment and was funded by the UK Economic and Social Research Council.

Lorraine has been teaching and researching in the social sciences for over 35 years. During that time she has published a wide range of work focusing primarily on diversity and inequality. Her most recent work includes research on the social and political aspects of new reproductive technologies. She recently co-edited Marginalized Reproduction: Ethnicity, Infertility and Reproductive Technologies (Earthscan 2009).

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Compass Benefits offer IVF medical complication insurance for patients traveling abroad. http://www.compassbenefits.com/medical_tourism_insurance.html

David Monteiro (30/08/2011 15:43:27)

It's so disheartening to think on how many women & men are struggling with infertility and what great lengths we must go to to be able to have a child on our own. I have had problems for years trying to conceive and after considering the great costs of IVF/IUI and adoption, we were at a stand-still financially, because of the on-going costs. We ended up deciding on going the natural route after doing research and finding out about our options. We went with a product called Beefertile. We heard a lot of good things about them and about Royal Jelly and how it helps both men and women. It was only a fraction of what medical procedures would cost. We ended up getting pregnant after 3 or so months and were completely amazed. Do your research and consider all options. We're glad we went the route that we did.

yve clearwater (15/07/2011 23:44:10)