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 

Cutting the cost of IVF

There’s an interesting development in Australia where the arrival of a low-cost IVF provider has been reducing the price of IVF treatment – you can read more about this from the Sydney Morning Herald here. Some are predicting that costs could still fall further.

In Australia, IVF funding works differently as there is a financial rebate from Medicare, the publicly funded healthcare system, but the fact that one IVF provider undercutting the others could have an influence on the market is a development which could potentially have an impact elsewhere…

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.

 

The US fertility lottery

A fertility clinic in the US has recently held a lottery offering a number of free cycles of IVF – which was a good PR exercise for the clinic itself. I’ve just been reading an article about this and was surprised to discover that the “free” cycle didn’t actually include the cost of any drugs (which, as anyone who has been through treatment will know, are extremely pricey). Nor did it include any additional treatments such as PGD or sperm freezing should they be needed. Entrants also had to be under the age of 43.

The lottery was drawn live on Facebook, 30 winners from the 500 or so entrants which seems a small number given what was on offer. But perhaps not, as they also had to agree to forfeit their right to anonymity as the names and locations of winners would be announced during the live draw.

This was carried out for the US National Infertility Awareness Week and whilst the sentiments may appear honourable, the idea of winners having to agree to let the world know about their fertility problems is something I struggle with – as is the concept of a prize which involves spending hundreds of pounds…

In praise of fertility nurses

Today is International Nurses’ Day, so I thought I’d dedicate this post to fertility nurses. When people think about different fertility clinics, there’s always a focus on the consultants when in fact although they are in charge of a patient’s care, they may do very little of the day-to-day care during a cycle of treatment. It’s often the consultants who attract patients to one clinic or another, and yet it may be the nurses who can make a real difference to how you feel during your fertility treatment.

Different clinics have different ways of working, but nurses may carry out scans and check bloods as well as doing much of the more practical dealing with fertility patients. More often than not, a fertility nurse will teach you how to do your injections, will talk to you about how you are feeling, will be there at the end of the phone as a first port of call for your questions or queries. It’s also the fertility nurses who may notice when you are finding it hard to cope and who may suggest a session with the clinic counsellor.

So today, let’s say thank you to the fertility nurses who do so much to help fertility patients but take so little of the credit…

“Twins” born years apart…

Every so often there’s an article like this one in today’s Guardian, about “twins” born years apart… The writer of this piece has a son and daughter born as a result of one fresh IVF cycle and a further frozen embryo transfer from the same batch of embryos.

It is a fortunate, yet far from uncommon, experience after fertility treatment, but it doesn’t make the children “twins”. Twins are two babies who are carried together and born at the same time, which these children were not. They are siblings rather than twins.

The Guardian seem to specialise in this myth – here are some previous twins who were born five years apart, although at least that time they called them “twins” in the headline…  Those were also covered by the Telegraph. And unsurprisingly the Daily Mail likes them too – these brothers born two years apart are “technically” twins according to the Mail – in fact, they are technically not twins. It is always made to sound as if it is some extraordinary and highly unusual matter, yet there are hundreds of thousands of siblings around the world who will have been conceived in a similar way.

Maybe I’m getting pedantic in my old age…

Fertility trial open to people on 2nd and 3rd cycles

Often fertility trials are only open to those who are going through their first cycle of IVF treatment, but the E-Freeze trial is now also taking patients who are having their second or third treatment cycles.

E-Freeze is investigating the theory that using frozen thawed embryos may lead to improved pregnancy rates. When frozen embryos are used, there is a delay in embryo transfer of at least a month, and the theory is that allowing the hormones used in ovarian stimulation to wear off and giving the womb time to return to its natural state may increase the chances of success.

Without more research we cannot say if fresh or frozen thawed embryo transfer is better for the first cycle of fertility treatment. E-Freeze will compare these two types of embryo transfer in more than a thousand couples from IVF centres throughout the UK to find out which, if any, gives the best chance of having a healthy baby.

If you are interested in taking part, you can find lots of information about the trial on the E-Freeze website and a list of all the participating centres.