Advice on treatment add-ons

It is sometimes difficult as a patient in a fertility clinic to know whether it is worth paying for some or any of the add-on treatments you may be offered. Now, the Human Fertilisation and Embryology Authority (HFEA), which regulates IVF clinics in the UK, and 10 of the leading professional and patient fertility groups, have agreed how treatment add-ons should be offered ethically in clinical practice in the UK in a consensus statement published today.

It’s published in response to growing evidence of add-ons being offered to patients, without conclusive evidence to date that any of them increase the chance of a pregnancy, and the fact that many patients feel they must do anything to improve the possibility of success. The aim is to create a culture change among fertility professionals in the UK.

Sally Cheshire CBE, Chair of the HFEA, said “We welcome the introduction of new treatments that could increase the chances of success, however, we want to see responsible innovation. Fertility treatment add-ons are being offered to more patients by clinics and we know many patients are asking for these add-ons and paying for them if they have private treatment. It’s crucial that clinics are transparent about the add-on treatments they offer, including the potential costs, to ensure patients know exactly whether they are likely to increase their chance of having a baby. That is why we’ve been working with professional groups such as the British Fertility Society to decide how unproven treatments into clinical practice should be correctly and ethically introduced, which is a vital step towards a more transparent approach in fertility services. We are now expecting clinics to provide information about treatment add-ons to patients, including what evidence there is of effectiveness.”

Alongside the principles for clinics, the HFEA has also published information on the most commonly offered add-ons, with a traffic light rating system, to help patients better understand the effectiveness of treatments they might consider.

Sally adds: “It’s crucial that patients inform themselves about the add-ons they may be offered, so that they can ask the right questions, and make the right choices, when choosing what treatment to have. We’ve produced ‘traffic light’ rated information on our website that keeps them up-to-date with the latest evidence on each of the most commonly offered add-ons.”

Jason Kasraie, Chair of the Association of Clinical Embryologists, said “We support greater transparency in the sector with regard to treatment add-ons. Whilst it is important that we work to ensure patients always receive the latest treatments and have access to new technologies in order to maximise their chance of treatment success, it is also essential that we ensure patients are fully informed and that only procedures or technologies that are evidence based are used.”

Key principles of the consensus statement are:

  • Clinics should only offer treatment add-ons where more than one high quality study demonstrates a treatment add-on to be safe and effective.
  • Clinics should stop offering the treatment add-on to patients if concerns are raised regarding safety or effectiveness.
  • Patients must be clearly informed of the experimental nature of any treatment add-on which is offered, where there is no robust evidence of its safety and/or effectiveness
  • Patients should not be charged extra to take part in a clinical trial.

The General Medical Council, has welcomed the statement. Chief Executive, Charlie Massey said: “We welcome this consensus statement, which will help protect fertility patients from poor practice and feeling pressure to accept additional, unproven extras. Patients deserve to have the best available evidence so they can make informed decisions, in partnership with doctors. It’s vital that doctors innovate responsibly and place patient safety first and foremost. Our guidance on consent sets out how doctors should work with patients to make decisions together about care and treatment options. Doctors working in the fertility sector must ensure that patients have information about the options available to them, including risks and available evidence, as well as any potential benefits.”

You can read the statement here and find out more about the HFEA’s traffic light system for add-ons here 

Petition for access to IVF goes to Number 10

The fertility patient charity Fertility Network presented its #Scream4IVF petition calling for fair access to NHS fertility treatment and an end to the IVF postcode lottery to 10 Downing Street on Monday afternoon. More than 100,000 people signed the online petition. It was a remarkable feat by a small charity to get such support for this cause and to be able to present the petition in this way.

Fertility Network’s chief executive Aileen Feeney said: ‘Gathering 100,000 signatures, in such a short space of time, demonstrates the overwhelming public support to end the unethical and unfair IVF postcode lottery and create an equitable system for access to NHS fertility services in the UK.These 100,000 signatures represent the screams of pain and frustration from not being able to have a child without medical help – and not having your screams heard. The screams of childbirth are loud, but the screams of infertility are just as loud and today they are finally being heard. In the face of this overwhelming public pressure, Fertility Network urgently calls on the Government to debate in Westminster the issue of fair access to NHS fertility treatment.’

Steve McCabe, the MP for Birmingham Selly Oak has been a key political supporter of the campaign for fair access to treatment and he was present when the petition was handed in. Steve’s  Access to Fertility Services bill will have its second reading at Westminster later this month. He said: ’I am thrilled so many people have got behind our campaign to end the postcode lottery of access to IVF. Infertility is a medical condition and it is completely unfair that access to IVF treatment depends on where you live. We can’t have a situation where local NHS groups are allowed to ignore NICE guidelines and ration treatment to save money. It is simply unfair and we wouldn’t stand for it if we were talking about other medical conditions such as cancer or diabetes. It is clear that the public are behind our campaign so now we need the government to step up to the plate and take action to end this disgraceful postcode lottery.’

A doctor’s view of IVF funding cuts

When we hear about cuts to funding for fertility treatment, it’s often presented as yet another Clinical Commissioning Group deciding to reduce what they offer to couples with fertility problems. We hear about the statistics for the tiny number of areas in England where IVF is offered in the way that NICE considers both clinically and cost effective. We hear that in certain parts of the country, commissioners are rationing IVF by making random decisions about who is eligible which have nothing to do with how likely the treatment is to work. We hear about the postcode lottery and how unfair this is within a health service that is meant to be national.

What we don’t hear so much about is what any of this actually means to the real people who have to live with the consequences of these cuts to funding – and that’s why this article from Adam Kay in The Times is so important. For anyone who doesn’t know, Adam Kay is the author of This Is Going to Hurt: Secret Diaries of a Junior Doctor’ and worked for a number of years as an obstetrician and gynaecologist.

Adam Kay’s article lays bear the reality of fertility funding cuts as experienced by the patients he saw – the woman who attempted suicide after learning she wasn’t eligible for IVF when she would have been if she lived just five miles away, the grief couples experience when they learn that they won’t be able to access any treatment for their medical condition.  Adam Kay talks about this from the perspective of a professional delivering the news, and that makes this so compelling. It’s such an important point of view and really helps to explain why those who dismiss fertility treatment as a “lifestyle choice” have got it so very wrong.

Thanks to Adam Kay for speaking out to support fertility patients across the UK – and let’s hope for more professionals talking honestly about the impact of funding cuts in their clinics, and what it means to them and to their patients. This really can make so much difference. It’s easy to dismiss statistics about cuts to fertility funding and to ignore concerns about a postcode lottery. It’s not so easy to dismiss the way this affects the lives of real people.

100,000 call for fair access to IVF

Patient Charity Fertility Network has reached 100,000 signatures on the #Scream4IVF petition calling for fair access to NHS fertility treatment and an end to the IVF postcode lottery. Petitions which reach 100,000 signatures prove the public demand for a debate in Parliament. The #Scream4IVF campaign, with partners Saatchi & Saatchi Wellness, was launched less than three months ago on 6 September 2018.

Commenting on #Scream4IVF’s success, Fertility Network’s chief executive Aileen Feeney said: ‘Gathering 100,000 signatures, in such a short space of time, demonstrates the overwhelming public support to end the unethical and unfair IVF postcode lottery and create an equitable system for access to NHS fertility services in the UK. These 100,000 signatures represent the screams of pain and frustration from not being able to have a child without medical help – and not having your screams heard. The screams of childbirth are loud, but the screams of infertility are just as loud and today they are finally being heard. In the face of this overwhelming public pressure, Fertility Network calls urgently on the Government to debate in Westminster the issue of fair access to NHS fertility treatment. Thank you, too, to the incredible women and men who have shared their #Scream4IVF and made their infertility voices heard. We are stronger together.’

Steve McCabe MP (Birmingham Selly Oak) said: ‘I am thrilled so many people are joining our campaign to end the postcode lottery of access to IVF. Infertility is a medical condition and it is time we started treating it like one. It is simply unfair that access to IVF is down to where you live and not your medical need. In the New Year my Access to Fertility Services Ten Minute Rule bill is due to have its Second Reading in Parliament. This is the first small step to ending this disgraceful postcode lottery.’

Leader of the Liberal Democrats Vince Cable said: ‘People struggling with infertility can all too often face damaging mental health issues. It is wrong that there is so little support. 100,000 backing this campaign shows the strength of feeling behind the call for change. Liberal Democrats are listening and Ministers in Whitehall must listen too.’

Congratulations to all at Fertility Network UK on this huge success, particularly Chief Executive Aileen Feeney and London Regional Organiser Anya Sizer!

Natural killers or your body’s peacemakers?

Most people having fertility treatment are keen to absolutely anything they can to try to boost their chances of success, and sometimes that can mean paying for additional treatments as well as their IVF or ICSI which they hope can increase the likelihood that they will get pregnant. The problem with many of these treatments is that there is not yet sufficient evidence to be able to say that they will do what they claim to do, but fertility patients sometimes decide to have them anyway.

One treatment offered by some clinics is related to the level of natural killer (NK) cells in a woman’s body – the very name suggests that having a lot of these must inevitably be a bad thing. If you are considering having your NK cells tested as part of your fertility treatment, you may be interested in reading this article which explains the growing understanding that at least some of a woman’s natural killer cells act as peacekeepers, preventing other immune cells from attacking the fetus. They also produce chemicals which promote the growth of the baby and blood vessel connections.

You can read more about all fertility treatment add-ons on the HFEA website, where each of the different treatments has been ranked according to the latest scientific evidence and given a traffic light grading.

New restrictions on IVF funding

It’s National Fertility Awareness Week and today the campaign group Fertility Fairness has released an audit which has found new restrictions on IVF funding. The survey covered all the Clinical Commissioning Groups (CCGs) in England and found that 80% are failing to follow the NICE guidance which says that all eligible couples under the age of 39 should be offered 3 full cycles of IVF treatment.

Many are also setting new criteria to limit eligibility for treatment. Despite the fact that neither male age nor weight affect the success rate of IVF, more than a quarter of CCGs have decided to use the male partner’s body mass index (BMI) to decide whether a couple can access NHS treatment, and 8% no longer offer NHS funding if the male partner is 55 or over. Around one in four CCGs also use AMH or antral-follicle count to check a women’s ovarian reserve (an estimate of the number of eggs in the ovaries) to decide whether she is eligible for IVF. The NICE guidance gives some guidance on levels at which these may be helpful to assess how a woman may respond to the drugs used in IVF to stimulate the ovaries, but there is no suggestion at all that this might be used to decide who should be eligible for treatment.

Consultant gynaecologist and Fertility Fairness committee member Raj Mathur, said: ‘ Male age and BMI are not in the NICE guidance as criteria for IVF and there is no strong evidence of impact on clinical outcomes of IVF. AMH and antral follicle count are in the NICE guideline as predictors of ovarian response, but NOT as predictors of the chance of having a baby through IVF. Commissioners are making unjustified extrapolation in using them for rationing.’

The audit found that

  • 3.6% of CCGs have removed NHS IVF entirely
  • 40% do not offer a full IVF cycle, limiting the number of frozen embryo transfers
  • 20% offer one full IVF cycle, transferring all fresh and frozen embryos
  • 23% offer two IVF cycles.
  • 13% offer three IVF cycles.

In the last two years, 30 CCGs have reduced NHS fertility services, and one in ten CCGs is currently consulting on cutting or removing NHS fertility treatment.

Sarah Norcross, co-chair of Fertility Fairness, said: ‘It is shocking to see CCGs introducing their own ‘access to IVF’ criteria, as well as reducing the number of IVF cycles they offer. It is not the CCG’s job to decide the criteria for accessing NHS fertility services. NICE has accessed the evidence in its guideline and developed access criteria for NHS patients and they do not include male BMI, male age, a woman’s AMH level or whether or not a couple has a child from a previous relationship. What criteria will CCGs introduce next; star signs and shoe size? CCGs need to remove their extra ‘access to IVF’ criteria now.’

Aileen Feeney, co-chair of Fertility Fairness and chief executive of leading national charity Fertility Network UK said: ‘ Fertility Network is extremely concerned about the effect that reducing access to NHS IVF has on already distressed patients. Infertility is a devastating disease causing depression, suicidal feelings, relationship breakdown and social isolation; removing the recommended clinical help or making it harder to access is cruel and economically short-sighted. Access to NHS treatment should be according to medical need and not your postcode. We urge anyone affected to join Fertility Network’s #Scream4IVF campaign calling for fair access to NHS IVF in the UK; with your help we can reach 100,000 signatures and hold a debate on the issue at Westminster. Sign the petition at www.scream4IVF.org and share your #Scream4IVF during Fertility Week.’

Pregnancy test recall

A false positive from a pregnancy test is the nightmare of anyone who has been through fertility treatment, but more than 58,000 digital pregnancy tests called Clear & Simple have been recalled after it became apparent that the test had mistakenly told some women they were pregnant when in fact they weren’t.

If you have bought a Clear & Simple test, manufactured by Guangzhou Wondfo Biotech, you should return it if it is from the potentially faulty batch. You can check the lot number on the inside and outside of the package – it is Lot Number DM10220170710E with an expert date of January 2020 which is affected.

The manufacturers stress that only a small number of problems have arisen with the tests and that they have been removed from shops already, but if you do have a test from this batch, you should return it and anyone who has had a false positive result from these tests should report it.

Have you had fertility treatment in the last 5 years?

If you have had fertility treatment in the UK in the last five years, would you be willing to help identify key areas for improvement to ensure everyone receives high-quality care in the future?

The Human Fertilisation and Embryology Authority (HFEA) which regulates fertility clinics in the UK has launched a national fertility patient survey and your views are vital to help the Authority understand experiences of treatment. The survey is being run by YouGov, and the more people that take part, the clearer the views and the greater the impact.

This is an excellent opportunity to help other people going through fertility treatment by giving the information and opinions the HFEA needs to help ensure these are taken into consideration in the future. The survey takes about 15 minutes to complete, and the link is here.

Scream for IVF!

The patient charity Fertility Network UK has launched a new campaign today called Scream 4 IVF which aims to raise awareness of the unfairness of the postcode lottery for fertility treatment. Currently a majority of those who need fertility treatment end up paying for themselves, and local commissioners who decide how to spend NHS funds are often ignoring the guidance from NICE on this and rationing fertility treatment.

The new campaign asks you to upload yourself screaming on social media with the #Scream4IVF and link to the petition bit.ly/Scream4IVF to call for a debate in parliament on fertility funding. Of course, you also need to sign it yourself!

Please, do support this important work – if you don’t want to scream, just sign – whatever you can do will help. You can find the campaign website at https://www.scream4ivf.org

What do you think about egg freezing?

There has been quite a debate about egg freezing after a call for the NHS to offer egg freezing for women of 30 to 35 as an insurance policy for their future fertility – you can read more about it here. Although the suggestion was supported by the patient charity Fertility Network UK, others didn’t agree, and Lord Winston warned that he felt women risked being exploited by the suggestion. The Royal College of Obstetricians and Gynaecologists has also called for caution where social egg freezing is concerned. It’s an interesting debate.

Perhaps freezing eggs might for some women save future heartache, but it’s still far from guaranteed that taking this option will result in a baby in the future. As anyone who has experience of IVF knows, having a good stock of eggs doesn’t bring any certainties, and women might need to go through a number of cycles of freezing to have eggs for the future. But could investing in egg freezing save the NHS money in the long run? An egg freezing cycle is essentially the same as an IVF cycle but split into different stages – so you are still harvesting eggs, fertilising them in the laboratory and then replacing them into the womb at a later date. So might you actually end up paying for IVF for women who might not ever need it? The reality is that the majority of people pay for their fertility treatment themselves, and perhaps sorting out the postcode lottery of funding for IVF in England would be a better first move as this is a medical treatment for people who have fertility issues, rather than a medical treatment for people who are trying to insure against having difficulties in the future.  What do you think?