Add ons – do they add up?

I gave a talk at The Fertility Show on Saturday about add ons, and promised to put my notes on the blog, so these are some of the key points, and links to useful sources of information.

What are add-ons?

  • They are additional treatments which your clinic may offer on top of IVF/ICSI
  • They are new or emerging treatments and there may be limited evidence about how effective they are
  • Some may have shown some promising results in initial studies but may not be proven to improve pregnancy or birth rates
  • Some clinics offer lots of add ons and may give you what looks like a shopping list of additional treatments to choose from. Some don’t offer them. This isn’t an indication of how good or forward-thinking a clinic is – some fertility experts may not be convinced that some add ons are worthwhile or safe.
  • Some clinics charge for add ons, others may include particular add ons in the cost of treatment because they think they make a difference and believe they should be part of IVF.
  • Add ons can be expensive and may substantially increase what you pay for your IVF

The Human Fertilisation and Embryology Authority (HFEA) has a list of some of the more common add ons you may be offered on their website, and a grading system for them

They include:

  • Assisted hatching
  • Artificial egg activation
  • Elective freeze-all cycles
  • Embryo glue
  • Endometrial scratch
  • Intrauterine culture
  • Pre-implantation genetic screening (PGS)
  • Reproductive Immunology
  • Time-lapse imaging

It can be difficult to know what to think about these new treatments, and the HFEA carried out patient survey to try to find out what people thought. The views ranged from those who were very strongly in favour of add ons to those who felt patients should not be offered treatments that we don’t know work. The overwhelming feeling from patients was that they didn’t want to miss out on something which might make a difference, but that this had to be balanced by the need to protect their interests.

Assessing the evidence is key and you want to know is:

  • What evidence there is about how effective something is
  • What evidence there is about whether it is safe
  • Does it carry any risks
  • How much does it cost

How do you assess the evidence?

As lay people, when we hear about evidence we may give any research or scientific paper equal weight, but in fact evidence isn’t quite as black and white as we may think.

 

The best scientific evidence comes from randomised controlled trials. In these trials, people will be divided into those who have the new technique or treatment and those who don’t in a randomised way. It is important when assessing evidence to look at whether the study included all patients or just a specific group. Sometimes research may have a narrow age range, or may have only looked at people with one specific type of fertility problem.

You should also look at the number of people included in the study. The most meaningful research will have involved a large group but sometimes you may discover that studies have taken place in one specific clinic and may involve tiny numbers of people.

Finally, check the outcomes. You want to look at studies where a healthy live birth is the outcome but some studies may stop at a fertilised egg or positive pregnancy test and this may not translate into an increase in births.

How the HFEA can help

The HFEA got together a group of leading scientists and fertility experts to look at all the existing research on each of the add ons, to assess it and to develop a traffic light system for add ons.

There is a green symbol where there is more than one good quality study which shows that the procedure is effective and safe.

A yellow symbol where there is a some evidence or some promising results but where further research is still required.

And a red symbol where there is no evidence to show something works or that it is safe

The decisions made by the group were then re-assessed by an expert in evidence to ensure every traffic light had been correctly assigned.

Green lights

Not one of the add ons mentioned at the start was given a green light to say that there is “more than one good quality study which shows that the procedure is effective and safe”

Red lights

There are a few red lights which means there is currently no evidence for assisted hatching, intrauterine culture, PGS on day three and reproductive Immunology. There may also be risks here too so do read the evidence carefully on the HFEA’s information page.

Amber lights

A lot of the add ons fall into amber where more evidence is needed. This includes endometrial scratch, freeze all cycles, egg activation, embryo glue, PGS on day five or six and time lapse.

For two of the add ons in this category, freeze-all cycles and endometrial scratch, there are big multi-centre trials going on at present in clinics across the United Kingdom. If you want one of these add ons, ask your clinic if they are taking part in the trial as you could end up getting the add on itself free of charge (this doesn’t cover the cost of the IVF/ICSI and you may be randomised into the other part of the trial and not get the add on, but it may be a good way forward if can’t afford to pay for the add on)

The cost of add ons

Some clinics offer add ons such as embryo glue or time lapse as part of a treatment cycle to every patient they treat. Others charge, and prices can vary hugely. There is often no discernible reason for wide discrepancies in price, so do look into this by finding out what a number of different clinics are charging for any add on you are considering.

Key questions

If your clinic offers you an add on, make sure you ask some questions first:

  • Why are you offering me this treatment?
  • What evidence is there that it works?
  • What increase in success have you seen with patients similar to me?
  • What are you charging and how does it compare to other clinics?
  • If you are charging more, why is this?

There are also some questions to ask yourself:

  • Are you happy with the evidence your clinic has given you?
  • Have you read the information on the HFEA website?
  • Can you afford to pay for it?
  • If you pay for it, would it affect your chances of being able to pay for another cycle if it doesn’t work?

Whatever you decide,make sure you are as fully informed as you can be about your treatment, and make sure you have read through all the evidence on the HFEA website which is there to help you to make an informed decision about your treatment.

Fertility milestones

In support of National Fertility Awareness Week, the HFEA or Human Fertilisation and Embryology Authority which regulates the fertility sector, has published data which reveals some new milestones for UK fertility treatment.

More than 300,000 children in total have now been born in the UK from licensed fertility treatment since 1991. Fertility treatment has grown markedly since 2010, with almost a third of all IVF and DI babies since 1991 arriving in the last six recorded years (2010 to 2015).

The total number of treatment cycles carried out in UK clinics also passed a significant milestone in 2015, breaking through the million barrier. The overall number of treatments carried out since 1991 is 1,034,601.

The new data – drawn from The HFEA Register, the oldest and largest fertility database in the world – also reveals that fertility services are used mainly by younger women. The average age of women having fertility treatment is 35 years, which has remained largely static over recent years.

Treatments involving women aged 18-34 remain the largest single group, accounting for 43% of all treatments, while treatments for women aged 40 and over account for just 20% of all treatments with very few treatments being provided to women over 45.

Looking at the different regions in the UK, the data shows that most treatments continue to take place in London and the South East of England, accounting for 42% of all cycles. However, there is a strong representation of large northern clinics in the figures, with the North West now providing more treatments per clinic than any other region, including London. Total clinic numbers vary according to region, ranging from three in Northern Ireland to 22 in London.

HFEA Chair Sally Cheshire CBE welcomed this new data as a sign of a thriving and successful fertility sector: “The figures we have released today show that the UK’s fertility sector continues to be one of the most vibrant and successful in the world. Families using assisted reproduction services across the UK are better served than ever before, and we will continue to encourage all who work in the sector to offer the highest quality support for patients who are both successful and unsuccessful.”

Susan Seenan, chief executive of patient charity Fertility Network UK said “We welcome the publication during National Fertility Awareness Week of the new IVF milestones from the HFEA. The extraordinary growth of IVF in the last six years shows the pressing need for practical and emotional support and advice for the many people facing fertility issues. It is also significant to note that this data underlines that fertility services are used mainly by younger women – aged under 35 – who will have been trying for a baby for at least two years and often more. National Fertility Awareness Week is about challenging perceptions and we hope this helps to dispel any misconceptions about IVF and female age.”

HFEA joins Facebook

You may want to have a look at – and follow – the Human Fertilisation and Embryology Authority’s new Facebook page. The HFEA regulates fertility treatment in the UK and is launching the page during National Fertility Awareness Week.

There are also a couple of very helpful videos on what it’s like to have IVF and ICSI. You can find out much more by having a look at the HFEA’s posts and you can follow for regular updates from the Authority.

Pregnant after fertility problems?

If you are pregnant after fertility problems, there is a brand new closed Facebook group that you can join. It is a closed space to talk to one another, to share experiences and to find news and information about pregnancy, birth and early parenting.

The group is for anyone who is pregnant or a new parent and we look forward to welcoming you. You can find the link for the page here https://www.facebook.com/groups/Pregnancyafterinfertility/

Your views needed!

If you are having fertility treatment, or have done recently, you may have been offered some additional extras on top of your IVF or ICSI. These additional treatments include things like time-lapse imaging, embryo glue, endometrial scratching or reproductive immunology. Not all clinics offer every type of additional treatment. Some may not suggest them at all, others include them in the price of IVF or you may be given the option to pay for add ons if you would like them.

Fertility Network UK, the patient charity, and the fertility regulator the Human Fertilisation and Embryology Authority, or HFEA, is interested in finding out more about what you think about these add ons, how they should be offered and what you need in order to make decisions about whether to pay for them. Most of these add ons are not fully proven to increase your chance of getting pregnant.

If you have had treatment recently or are going through treatment currently, do take a minute to answer the short questionnaire to help them find out more about what your views are on this subject. You can find the link by clicking here

 

Fertility forum advice

I’ve just been reading a fertility forum where there are a number of posts which are apparently from people who’ve had absolutely marvellous treatment at an overseas clinic. There was something about them which sounded rather odd to me and not quite like the way fertility patients usually write about their treatment, so I checked the forum for other posts about the same clinic and there were a whole series of similar posts from different people, all discussing what wonderful experiences they’d had – but also all making exactly the same slightly unusual errors in their English and using the same phrases. Some even had usernames that were similar, and they had all been successful after repeatedly unsuccessful cycles elsewhere but were returning to the forum to tell others about their treatment.

It’s always helpful to read about other people’s experiences, but reading reports online is never quite the same as talking to real people and it is worth being a little cautious, particularly if something doesn’t sound quite right.  I sometimes get comments on Fertility Matters which begin as a discussion about a post and then suddenly veer into an advertising pitch and are clearly not from a genuine fertility patient. I just delete them all, but the online boards are sometimes used for promotional purposes too and it is a good idea to bear that in mind.

Why do people go overseas for IVF?

A new survey of fertility patients looking at overseas treatment carried out for Fertility Network UK and the website Fertility Clinics Abroad has unsurprisingly found that cost is the major reason why people travel for treatment.  Of those who responded to the survey, nearly 80% said fertility treatment in the UK cost twice as much as they were willing or able to pay and 68% said that they would travel for treatment because IVF overseas was generally cheaper.

When people first started travelling overseas for fertility treatment, it was often to access donor eggs but according to this survey most of the respondents were using their own eggs for IVF treatment abroad. The survey found that people believe that treatment can often be offered more quickly abroad. There was also a perception that the standard of care was better overseas with clinics offering a more personalised approach.

Interestingly many were also attracted by the apparently high success rates overseas, but some respondents had noticed that these rates could be confusing and misleading. A majority had said a centralised database of all overseas clinic success rates would be welcome but it would be very hard to verify these rates. Some overseas clinics claim success rates of more than 80% for women using their own eggs for IVF, and it is important to be clear that these rates are not comparable with the figures you will get from a UK clinic as they are using different criteria, are not always including all the patients treated at the clinic and may be giving rates for positive pregnancy tests rather than for live births.

Almost a quarter of respondents wanted to go overseas because they would have access to anonymous donors and it would have been very interesting to find out why they felt this was an advantage – did they feel it was linked to a larger pool of available donors or was it the anonymity itself which was attractive, and if so why. So, a survey which provides some interesting information – and also raises many questions! You can read more details about it here 

What should you do in the Two Week Wait?

For most people, it’s probably the worst part of an IVF cycle – the notorious 2ww when you get to spend a fortnight (which seems to last about ten years) on tenterhooks, worried about everything you do and don’t do in case it affects the chances of a positive outcome. One of the most frequently asked questions is what you should and shouldn’t do during this time.

You will find all kinds of advice from all kinds of experts about activities, diet and supplements during the two week wait. There are those who advise that you should take the time off work and do as little as possible, spending the first day or two lying on the sofa. Others may advise going back to work right away to try to keep your mind occupied and suggest that it’s best for your mind and body to keep active and busy. I’ve heard of people drinking pints of milk and others avoiding dairy products.  There are women who don’t take baths because they might overheat, and others who are lying around with hot water bottles on their stomachs.

If you visit any fertility forum, you will find it awash with questions and suggestions about the two week wait. Some are quite bizarre – a quick trawl produced all the usual stuff about eating pineapple core and brazil nuts, but the idea that you shouldn’t eat anything uncooked and that you need to wear socks 24 hours a day were both new ones to me!

I will always remember the nurse who cared for us during our first IVF cycle telling me that any rules about what not to do during the two week wait weren’t really set because they would cause an embryo not to implant or induce a miscarriage but rather because they were things that fertility patients often worried about. So, having a glass of wine during the two week wait is not going to stop you getting pregnant, but if your treatment doesn’t work and you’ve had a glass of wine, you are likely to question whether it was to blame.

I think the bottom line with all of this is that if you are sufficiently worried to be asking whether it is OK to do something, it’s probably a good idea not to do it. Two weeks seems a lifetime during the 2ww, but in reality it isn’t a long period to have to give anything up. There are no hard and fast rules, but following your own instincts and doing what feels right for you rather than allowing yourself to be driven to distraction by conflicting suggestions is probably the best advice anyone can give you about what to do and not to do.

Support for endometriosis

I was delighted to be asked to join an Endometriosis UK support group last night to talk about fertility treatment and support. If you have endometriosis, I’d really recommended checking out Endometriosis UK and the excellent support they can offer.

The online group ran really smoothly and efficiently, and they also have support groups running across the country and an online community too. They have lots of incredibly useful information on their website, and do a lot of work to raise awareness of endometriosis, which often goes undiagnosed.

It was great to be able to talk to some of the members last night – inevitably our discussions came round to the postcode lottery of access to fertility treatment and we talked about the realities of going through IVF and getting support amongst many other things. Thank you to all at Endometriosis UK for asking me to join you!

Secondary infertility

The fact that fertility problems can occur for people who had no trouble conceiving their first child often comes as something of a surprise – and yet it’s very common. You may have seen the article in The Guardian this weekend by journalist Sarfraz Manzoor about the difficulties he and his wife experienced when they tried for a second child – a subject author Maggie O’Farrell had also written about in the paper some years ago. The magazine Fertility Road covered the subject recently, and it is great that it is being talked about.

All too often, there’s an assumption that secondary infertility is somehow less of a problem because you aren’t childless – and yet in fact the pain it causes may be different, but it is still a deeply distressing problem. Parents can feel guilty about not being able to provide a sibling for their child, and it can be very difficult to escape pregnant women and babies when you have a young child.

People sometimes put off seeking medical advice if they are experiencing secondary infertility having conceived without a problem in the past. In fact, there are no guarantees when it comes to fertility and it is actually more common to have a problem second time around than it is not to be able to have a child in the first place. Sometimes the difficulties you are experiencing are just down to the fact that you are older than you were when you got pregnant before, but there can be other medical problems which may have occurred in the interim. If it is taking you longer than you would have liked to get pregnant again, you should visit your GP in just the same way that you would do for primary infertility – so usually after a year of trying unsuccessfully or after 6 months if you are over 35.