IVF success rates

I’ve just been reading about an overseas clinic which claims an IVF success rate of more than 90% per IVF cycle started, including frozen embryo transfers. I could understand why this would seem an incredibly attractive prospect to anyone who needs fertility treatment – not only is IVF cheaper than it would be in the UK, it also appears to be far more successful. But is it? Does any clinic really have a success rate of 90%?

One of the main differences for the apparent discrepancies between outcomes at clinics here in the UK and the rates some overseas clinics claim is the way that they are presented. Here in the UK, you can check validated IVF outcomes on the HFEA website. These are accurate figures for live births over a set period. Some of the amazing rates you see on overseas clinic websites are not for live births but for positive pregnancy tests, and as we know that one in four pregnancies ends in miscarriage, it is not surprising that live birth rates are always lower than pregnancy rates.

The figures you get from the HFEA will also show you the outcomes for women of different ages. Birth rates after IVF in the UK range from  2% to 33% depending on the woman’s age. The HFEA figures show you outcomes over a set period – a specific year, or a three-year period. If you are running a clinic elsewhere and happen to have a month where you have very good outcomes and lots of women get pregnant, followed by a month where no one does, what’s stopping you from using your good month as your “success rate”?  So a success rate may be for a short period, for younger women and it may be pregnancy rather than live birth – and all of these things make a huge difference. What’s more, sometimes the figures are simply wrong. I’ve read some crazy claims for totally impossible success rates, particularly for older women using their own eggs. The truth is that IVF is less successful as we get older, and miscarriage presents a greater risk.

Many overseas clinics offer very good fertility services, but if you are thinking about treatment abroad do be careful about hyped figures and unrealistic claims about outcomes. Know what is likely and what is possible, and be wary of clinic websites claiming successes which are totally out of kilter with anything you’ve ever seen elsewhere, especially for successes for older women using their own eggs, as this may suggest a clinic which is prepared to be somewhat economical with the truth.

The cost of private fertility treatment

New research has found huge discrepancies in the prices people are charged for IVF and for many extras such as blood tests or drugs as reported here in the Times. It can be difficult if you need treatment as you don’t always feel you have time to shop around – but this shows that it is at least worth making a few calls to see whether anywhere closer to you may offer treatment at a lower price. If you do this though, you do need to make sure that the price isn’t lower because not everything is included in the cost you are being given  or because the treatment is not the same. It is also important to be aware that the headline costs on clinic websites often have little to do with the real costs that you will end up paying as a patient.

It’s not just the treatment itself where costs can differ but also the prices paid for any additional treatments which some patients are now considering. When I was looked into this, I was surprised at how big the differences were in the charges for add ons. For example, some clinics were including embryo glue in the cost of an IVF cycle whilst others were charging for it and the costs ranged from £75 to £350. It was a similar picture with endometrial scratch, which you might be able to get free at some clinics across the country by taking part in a clinical trial or which could cost you up to £450. I looked at a small sample of clinics and even in those, found these wide price discrepancies but it does show that it is worth at the very least asking why your clinic is charging what it does if it is much more than others.

Finally, don’t forget that the cost is one part of the equation. If you are having to travel a long distance to the clinic – or if it is overseas – this in itself adds costs both financial and in terms of stress. You will also want to check out the clinic details on the HFEA website to see the latest outcomes from treatment and to see how it is ranked by inspectors and other patients. There is a section in the patient ratings about cost which is particularly relevant as it shows whether people ended up paying more than they expected for treatment at that particular clinic so make sure you have at least considered these things before committing yourself.

Free IVF cycles

Since 2009, the Lister Fertility Clinic has been offering a small number of free IVF cycles each year to try to help people who are unable to access NHS-funded fertility treatment. The cycles are offered in conjunction with the charity Fertility Network UK and there are some criteria for entering into the draw for the free cycles.

You have to be a UK resident under the age of 42, with a cause for your fertility problems. Your BMI must be in the normal range and you can’t have any children from your current relationship. You can’t have been sterilised in the past and you can’t have had a free cycle at the Lister before. There are also some restrictions on the type of treatment you can have, which can’t include egg donation.

You need to send your entry to Fertility Network UK – and you can find the details here

 

Survey on data for research

Another short survey – apparently this one has just five questions – and it is looking at how you feel about your personal data being used in fertility research.

The study is being conducted by researchers at Oxford University who are looking at the HFEA’s register of treatment cycles and outcomes, which is available to researchers if patients consent to allow them access.

Since 2009, all new patients have been required to complete a ‘Consent for Disclosure’ form (you can see an example here), which includes consent to non-contact research (where registry data may be used but patients may not be contacted by researchers) and contact research (where data can be used in research, and patients can be contacted again in the future).  Less than half of people undergoing fertility treatment agree to allow their data to be used for non-contact research, and the researchers are trying to find out why.

The researchers are keen for any women and men who have had fertility treatment, such as IVF, in England in the last 5 years to complete the survey which is anonymous, so you will not be identified in our research reports or findings. There is more information about this study here and this is the link to complete the survey https://surveys.npeu.ox.ac.uk/index.php/245857?lang=en

Time for a quick survey?

If you have five minutes, would you be able to complete a quick survey to help with the design of a study looking at women’s long term health after fertility treatment. The purpose of this survey is to learn about your views and health concerns regarding Assisted Reproductive Technology (ART) which covers all forms of IVF/ICIS.

To date, little research has examined women’s health after fertility treatment. University College London is designing a study to monitor women’s long term health after ART and your opinion, views and concerns will help them to design and develop a study, taking into account women’s specific concerns about this topic. This survey is open to all women, whether or not they have had fertility treatment so you can share it with other people. It is anonymous and you can find it by clicking on the link – https://www.surveymonkey.co.uk/r/QY26FR7

Thanks to Hannah and Lewis Vaughan Jones

TV presenters Hannah and Lewis Vaughan Jones have been charting their fertility journey on YouTube – if you haven’t already seen it, you can find the episodes of their IVF story starting here. If you’ve been through it yourself, you will understand how incredibly courageous it is to decide to go public with each stage of the IVF process – and as their cycle progresses, this becomes ever more apparent. Yet, it is only by telling our stories and by revealing the raw emotion that other people will begin to understand how devastating and all-consuming infertility can be.

Thanks to Hannah and to Lewis on behalf of the one in seven of the population who know exactly what it’s like. When you are already in the public eye, it is even more of a challenge to be so open about something so deeply personal and we are with them every step of the way and thank them for their courage.

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.

Where are you in the IVF league tables?

The campaign group Fertility Fairness has produced a league table of different areas of the country to show how they rank when it comes to fertility treatment. Fertility Fairness has found that 90% of local clinical commissioning groups, who make the decisions about fertility treatment provision, found that nearly 90% were failing to provide the treatment that NICE has deemed to be both clinically effective and cost effective.

The BBC have provided a link to the full table in an article on the subject which shows that the best places to live if you need fertility treatment are Bury, Heywood, Middleton and Rochdale, Oldham and Tameside and Glossop. In some areas couples who are experiencing fertility problems cannot access any treatment. These are Basildon and Brentwood, Cambridgeshire and Peterborough, Croydon, Herts Valleys, Mid Essex, North East Essex and South Norfolk.

Fertility Fairness Co-Chair Sarah Norcross has been doing media interviews this morning calling for the government to take urgent action about the current funding situation. The government has suggested that commissioners should follow NICE guidance but in practice many are still choosing to completely ignore the evidence about best practice and about cost-effectiveness leaving many patients unable to access treatment at all,

The politics of infertility

Fertility Network UK is inviting anyone facing fertility issues to an event at Westminster on 1 Nov from 4 – 6 pm to discuss fair funding for IVF.

Speakers include Peter Thompson from the HFEA, Paula Sherriff MP,  Rebecca Manson Jones (Candidate for Women’s Equality Party),  Geeta Nargund (Director of Create Fertility clinics) and patient campaigner Richard Clothier.

There are limited spaces for the event, and if you would like to attend you can find further details here 

Freeze-all cycles

There has been growing interest in the idea of “freeze-all” cycles, where rather than having a fresh embryo transfer after eggs have been fertilised in IVF, all embryos are frozen to be transferred at a later date. The logic behind the theory is that the woman’s body has time to readjust after the hormones used to stimulate the ovaries, and that this may help the womb lining and improve the chances of implantation and a successful pregnancy.

It isn’t clear yet whether this theory holds water, but there is a national research study underway to look at this. Those taking part can be in their first, second or third treatment cycle and although the study doesn’t cover the cost of the treatment itself, it does allow for freezing with no additional cost. A number of centres across the UK are taking part in the study, known as E-Freeze, and if you would like to find out more, you can find the website here