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.”

IVF funding situation is “shocking”

The latest figures released by Fertility Fairness earlier this week about funding for IVF treatment have been described as “shocking” by the President of the Royal College of Obstetricians and Gynaecologists, Professor Lesley Regan.

Commenting on the fact that so few clinical commissioning groups (CCGs) are currently following national guidance and that the number which have completely removed NHS IVF has almost doubled in the last year, Professor Regan said “These figures are shocking and it’s very disappointing to see even fewer CCGs following NICE guidance and providing full access to NHS fertility treatment. Current access to treatment is a postcode lottery and these health inequalities people face are unacceptable. Infertility can have a devastating effect on people’s lives, causing distress, depression, and the breakdown of relationships. IVF treatment is cost-effective and should be available on the NHS. The RCOG is committed to working with UK commissioners and healthcare providers to support them in following NICE Fertility Guidelines.”

Are you cycle savvy?

In support of National Fertility Awareness Week which starts today, Dr Fertility are launching #cyclesavvy, a national survey targeting women aged 25-44 years old to research the level of knowledge women have about their own fertility.

Anyone who has been trying to conceive for any length of time is likely to be very cycle savvy, but Dr Fertility believes that there is an unmet educational need when it comes to women understanding how they can get pregnant naturally.  The #cyclesavvy campaign follows up on the #bettersexeducation campaign in 2016, which focused on improving sex education in schools. However, Dr Fertility believes that, even with a better education at school, by the time a woman is ready to start a family, a lot of what she learned at school could easily be forgotten and some of this information could be out of date.

In 2016 Dr Fertility teamed up with Professor Allan Pacey, one of the UK’s leading male fertility experts, to launch the fantastic male fertility awareness campaign #spermbanter. This aimed to educate men and to evoke banter to tackle the male fertility taboo.

The campaign aims to collect at least 300 responses and once the data is analysed the results will be published. To help plug the anticipated knowledge gap, Dr Fertility will launch a #cyclesavvy bite-sized video series presented by Fertility Nurse Consultant, Kate Davies, alongside the results. You can click here to take the #cyclesavvy test.

Why you might not want to bother with that fertility “MOT”…

eggFertility clinics have been promoting “fertility MOT” tests for some time as a way of checking your future fertility by testing the stock of potential eggs in your ovaries, known as your ovarian reserve, to see how “fertile” you are. New research published in the Journal of the American Medical Association suggests that these MOT tests may have no value in predicting how likely you are to get pregnant.

Ovarian reserve tests do have a use for people who are having fertility treatment as they can give some idea of how your ovaries might respond to the drugs used in the course of the treatment, but this study shows that the tests have no value in predicting your chances of getting pregnant naturally.

The researchers looked at a large group of women who had been trying to get pregnant for less than three months, and following them up for a year found that the results of the tests had no relation to the chances of the women getting pregnant.

The cost of these “fertility tests” can vary hugely. The articles covering the story suggested that they might cost around £100, but a quick google reveals that some clinics are charging more than £400 for MOT tests. The researchers were quite clear that their findings “do not support the use” of these tests to assess natural fertility – so be warned before you decide to part with any money. If you are concerned about your fertility, your first port of call should be your GP rather than a clinic charging for tests.

Thanks to The Eve Appeal

Last night I went to an amazing event organised by the Eve Appeal, a gynaecological cancer research charity, as part of their gynaecological cancer awareness month. The subject was Talking Taboos and the evening aimed to discuss the things we don’t usually discuss, which can be a barrier to seeking advice about symptoms which lead to gynaecological cancers.

There was a panel of speakers including Professor Lesley Regan, President of the Royal College of Obstetricians and Gynaecologists, Paula Sheriff MP, BBC Woman’s Hour presenter Jane Garvey, Dr Ellie Cannon, Dr Christian Jessen and FGM campaigner Nimco Ali. The panel took questions from the audience and covered a huge range of taboo subjects from pubic hair to menstrual bleeding and you can see the discussion on the Eve Appeal’s Facebook Page.

It made me think about how many taboos there are about fertility and treatment, and all the things we find difficult to discuss. It is so hard to break down those barriers when you are feeling sad and isolated, but you are really not alone. One in seven of the population experiences problems when they are trying to get pregnant and there are 3.5 million people in the UK who are currently trying unsuccessfully to conceive. Next time you feel alone, remember how many of us there are out there – and how much we can help one another.

The truth about “clean” eating

When you are trying to conceive, it’s inevitable that you want to do all you possibly can to maximise your chances of success and changing your diet seems a fairly easy way of doing something to help. More and more fertility patients are giving up all kinds of foods and focussing on “clean” eating in an attempt to improve outcomes of treatment or to boost their fertility. Eating a healthy, balanced diet is never going to be a bad thing and will, without any doubt, help your overall well-being and make you feel more positive. Giving up whole food groups in the pursuit of clean eating, however, may not have any merit.

This fascinating article by Bee Wilson in The Guardian picks apart the clean eating phenomenon and raises lots of interesting issues about why clean eating has become so popular – and why that probably isn’t such a good thing.

It seems that the answer is moderation and common sense – the story of the wellness blogger who began to lose her hair and whose periods stopped at the start of this piece is a clear enough message about the impact very restrictive diets can have on fertility.

I’ve met so many fertility patients who are on hugely restricted diets – and who are actually made quite miserable by their constant battles to keep on the straight and narrow with their eating plans. Fertility treatment is tough enough without making things even harder for yourself. You may end up feeling guilty if you break your own strict rules when in fact it really isn’t going to stop you getting pregnant if you eat something which doesn’t tick all your healthy eating boxes from time to time.

The most important thing is to be kind to yourself during fertility tests and treatment – that doesn’t mean living on a diet of chocolate and red wine, but it does mean remembering what a balanced diet means and following a sensible eating plan rather than something which is going to make you feel unhappy and which may not be providing you with all the nutrients you need.

 

Are you affected by IVF cuts?

You may have seen the article in today’s Guardian about the cuts to fertility services across the UK in a bid to save money, and in particular the proposal from Bristol, North Somerset and South Gloucestershire to restrict fertility treatment  to women aged 30-35. If you are affected by this and might be willing to talk to BBC radio about it, could you contact Alice on 0161 335 7502.

 

Pregnancy after fertility problems

Did you know that the charity Fertility Network UK now has a special online group meeting every month for those who are pregnant after fertility problems? The group is open to everyone and will have expert speakers from time to time who will can offer tips and advice and answer questions.

Many people feel anxious when they finally discover they are pregnant after some time trying to conceive, and it can be hard to relax and enjoy your pregnancy.  Talking to others who really understand how you feel can be hugely beneficial and the group is online so you can join from wherever you are based. Although it is run via Skype, it is just like a conference call rather than a video conference so you don’t need to worry about being seen. You can find the details and information about who to contact to join here 

For anyone who isn’t sure about joining a group but would still like some help, you can always call the Fertility Network UK support line and talk to the lovely Diane, or alternatively my book Precious Babies: Pregnancy, Birth and Parenting after Infertility may help

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