Is it ever right to raffle fertility treatment?

When plans for an IVF lottery were announced here in the UK, the overall response was far from positive with questions raised about the ethics and the finances, but in the US it appears that running lotteries for fertility treatment has become more common.  One clinic even asked people to enter a competition to win treatment by writing or making a video about their fertility problems and why they deserved treatment…

It’s true that our current access to funded fertility treatment is problematic to say the least, and that many couples simply can’t afford to go privately – but does that make running lotteries for treatment right? Those in favour argue that it offers hope, but if your chance of winning is one in a million, it’s probably more about raising unrealistic expectations.  Lotteries may be a good way for clinics to gain publicity, they may be a good way for individuals to make money – but I don’t see how a lottery can ever be a satisfactory way to offer healthcare.

If you’re interested, you can read more about the US lotteries here 

Quintuplets - should this really be a success story?

I've just been reading about a "miracle" birth in the States, where a woman has given birth to quintuplets after fertility treatment.  The tiny babies were born at 28 weeks and are apparently "critical but stable".  It is so very sad that anyone who has had to go through the traumas of not being able to conceive should then have the further trauma of premature babies spending weeks if not months in intensive care in hospital. The babies are in an intensive care unit that has just recently been caring for sextuplets, born to a couple who had IUI.

No reputable fertility professional should be putting the lives of babies and mothers at risk by carrying out treatment which results in the conception of five or six babies at once.  We are only hearing about the babies which make it as far as being born, albeit prematurely, but it would be far more common to miscarry when so many embryos implant at the same time.

In the early days of fertility treatments, when specialists were still unsure quite how women's bodies would react to fertility drugs, such multiple conceptions may have been more understandable, but there is no need for anyone to take such risks any more - and any fertility specialist who boasts sextuplets or quintuplets on their CV should be avoided as they certainly don't have their patient's best interests at heart.

Meeting at the House of Commons

I've meant to tell you about the meeting of the All Party Parliamentary Group on Infertility for weeks, but am only now finally getting round to it - the picture shows Infertility Network UK Chief Executive Clare Lewis-Jones with the group's Chair, MP for Dartford Gareth Johnson.  Sadly, only one other MP came to join the meeting which was a great shame as it was an opportunity to show support and to help to raise awareness. It was fortunate that so many of those with an interest in fertility who had been invited by the National Infertility Awareness Campaign did turn up - making the meeting feel very well attended.

Clare Lewis-Jones presented the findings of some very interesting research carried out by the National Infertility Awareness Campaign which showed that more than half of all fertility patients had found their GP to be either unhelpful or lacking in knowledge about infertility and treatments when they visited. It must be very difficult for GPs who are expected to be up to date with every health problem and every potential treatment, but one of the problems for fertility patients is the lack of time that they have to give in an appointment when discussing a fertility problem is often difficult and upsetting.

Let's hope that more MPs make time to come along to the next meeting of the All Party Parliamentary Group on Infertility to show their support and to help increase understanding.

IVF in the news again

Another day, another IVF scare story... or at least that's how it sometimes feels.  We're forever being told that this procedure or that type of treatment is risky for us or our future children.  It's not always easy to make sense of what lies behind the headlines or to decide what might be best for you.

The latest story claims that fertility clinics are putting profits before women's safety by opting for traditional rather than mild IVF, which involves lower doses of drugs.  The safety aspect appears to focus on ovarian hyperstimulation, a condition that occurs if the ovaries become over-stimulated after using fertility drugs. Ovarian hyperstimulation can be very dangerous, but specialists usually have an idea of which women are particularly likely to be at risk before they start treatment and tailor drug doses accordingly.  Once fertility drugs are being administered, regular scans can give an idea of situations where the ovaries are starting to respond too strongly - and in these cases treatment is normally halted, at least for a while.  So yes, of course ovarian hyperstimulation is a risk of fertility treatment, and yes, of course you may want to talk to your fertility specialist about how they ensure the dangers are reduced - but don't be completely panicked by another scare story.

Whatever the rights and wrongs of mild IVF,  today's stories go far beyond that.  One talked about the "toxic" drugs used in fertility treatment in the UK and made it sound as if we use completely different, old-fashioned dangerous drugs here when everyone else in the world is using some kind of safe, modern drug. It's simply not true. Talk to your consultant, talk to your doctor or fertility nurse, talk to your counsellor - then make the decisions that are right for you - and take your daily paper with a pinch of salt!

Waiting rooms

I ended up spending a lot of time last night in a hospital waiting room (with a suspected eye problem which turned out to be absolutely fine), and it made me think about the amount of time I must have spent over the years in fertility unit waiting rooms - and how different they are. Last night, there were a huge range of people in the waiting room with all kinds of different eye problems but we were stuck there together, waiting - and so, after a while, people began to smile at one another or raise eyebrows as we waited on and on, and then began to chat. I spoke to three different people who happened to be next to me over the course of many hours as we lamented our inability to be able to read due to the drops they'd put in our eyes and wondered whether we'd ever get home. It's odd in a way that the spirit of being in an unpleasant situation together very rarely makes fertility patients start talking to one another. For the most part, we even try to avoid eye contact in waiting rooms, let alone begin conversations. Is it the stigma that still somehow lingers around fertility problems? Is it the fact that we feel so emotional and often close to tears? Or perhaps it's because talking to one another might somehow make the fact that we have to be there seem even more real. It's a shame because there's a huge amount to be gained from talking to others who have the same problem and sharing experiences. Not only is it a huge relief to talk to people who genuinely understand, it also helps to normalise the experience, reminding us that we're not alone and that infertility is really a very common problem. At this point, I have to confess that in all the years I spent in the fertility clinic waiting room I only ever spoke to one person - and that was because she spoke to me first. If talking is too much - and I accept that it quite possibly is - then maybe we should try to at least give one another a smile if we catch eyes at the clinic. It's just a gesture, but sometimes the old saying about a little kindness going a long way seems very true and may make all the difference.

Awareness of fertility

A new paper from the States has looked at student attitudes towards fertility, questioning male and female students about their views and understanding. We often think - or at least I do - that we blab on about the age-related decline in female fertility so often that most women are only too aware that their fertility will begin to decline quite sharply once they are over 35. In fact, the research suggests that maybe we should be blabbing on a bit more. The students in the survey thought that the marked decline in female fertility came far later than it actually does - and they assumed that fertility treatment would be more likely to be able to sort out any potential problems than it actually is. This is perhaps the most worrying fact, as there is still an idea that if you leave it too long to try to have a baby IVF will be able to sort it out for you. Just this morning, I read an article in the paper quoting a 38 year old celebrity who said she was in "no rush" to have a baby. We've seen endless attempts to raise awareness of this issue over the last few years, but it seems there may still be some way to go.

Why sextuplets are not a good idea...

If you've thought about travelling abroad for fertility treatment and have maybe wondered whether the relaxed regulations in other countries might be part of the attraction, think again... I've just been reading an article about a woman in the States who has given birth to sextuplets after fertility treatment - ten weeks early. Five of them are apparently doing "as well as can be expected", which given their prematurity and very low birth weights will undoubtedly mean problems ahead. The sixth baby faces "greater challenges". Their mother was offered "selective reduction", which is a way of dealing with bad decisions made during fertility treatment, but felt unable to take that option. In this particular case, it wasn't that too many embryos had been transferred during IVF. These sextuplets were the result of IUI. In this country, when a fertility specialist stimulates the ovaries during IUI, the treatment is tailored to aim to produce one or at most two eggs. Any responsible specialist would immediately stop treatment if there was a danger of this this kind of risky high-order multiple pregnancy. According to the article I read, there are as many as 2,000 cases of selective reduction each year in the States, and it's little wonder that there is sometimes such vehement opposition to fertility treatment. The fact that it is "hard to regulate" IUI seems to be the excuse - but surely it is time for fertility specialists to face up to the consequences of the treatments they are offering. Our system in the UK is not without faults, but it's only when you see what can happen in other places that you realise quite how lucky we are. See the article in question here

One at a Time

Earlier this week, I spoke at a workshop in Bristol organised by One at a Time about patient views about single embryo transfer. I know many people are worried that having just one embryo put back during IVF treatment will reduce the chances of success, but all the research shows that when clinics are selecting the right patients for single embryo transfer, it is quite possible to cut risk of multiple pregnancies without reducing the pregnancy rate.

The speaker who made the most impact on me was paediatrician Alun Elias-Jones, who talked about the problems of prematurity that he had frequently seen with multiple births. We all know so many twins who are perfectly fine that it's easy to assume that problems are relatively rate, but it was made very clear that this was far from the case with half of all twins being born early and often having low birth weights too, which can lead to all kinds of problems including brain injury, lung disease and cardiovascular problems. He explained that twins were three times more likely to be stillborn, five times more likely to die during their first year and four to six times more likely to have cerebral palsy. It was his description of the longer term problems that they can face with disabilities, learning difficulties and behavioural issues which was particularly striking. It's all too easy for staff in fertility clinics not to think about these potential consequences, and to pass on an ambiguous message to patients.

Going through fertility treatment isn't easy and all anyone wants is for it to work as quickly as possible. If you've got a team treating you who are all clear that the best outcome would be one healthy baby, it's something you're going to believe yourself. If you are faced with divided opinions or with some staff seeming to suggest that multiple birth might not be a bad outcome, it is hardly surprising that we sometimes end up confused.

Of course, there's one thing which really would make a difference to patient opinion and that would be the full implementation of the NICE guideline, which says that all those who are eligible should receive up to three full cycles of IVF. With adequate funding, it would be far easier to convince patients that all those most at risk of multiple pregnancy should consider having just one embryo put back at a time.

Is 57 too old for fertility treatment

I spent an hour reading the papers at the hairdressers today - a rare treat - but was sad to read the story in almost every paper of the pensioner IVF mother who says she now thinks that there should be an age cut-off for fertility treatment. She'd had a first child in her late fifties after fertility treatment at an overseas clinic, but a London clinic had offered to treat her again to try for a second. One of the reasons her case was said to be different was that her partner was considerably younger, but now they've split up and being a single mum in her sixties is clearly a pretty tough job.

Apparently she now says she thinks that 50 would be an appropriate upper age limit for fertility treatment, and as someone rapidly approaching a half century myself, I think she's right. There are so many women in their twenties, thirties and forties who desperately need donor eggs and it seems only fair that they should be treated rather than women in their fifties, who can hardly have been unaware that they were leaving it rather late to try to get pregnant.