Eggs for sale

When the levels of compensation for egg donors were increased, it was generally welcomed as a good move.  £750 was seen to be an acceptable rate to repay altruistic donors who faced considerable disruption and discomfort for their kindness.  The HFEA was careful to point out that the fixed rate payment had been set at a level which would not attract "those who are merely financially motivated".

Having overheard a conversation between two shop assistants earlier this week, I am not sure this has turned out to be the case.  My ears prick up automatically at any mention of fertility treatments, and when I heard one explaining to the other that she would have to go through a full IVF cycle, I assumed she was talking about her own fertility problems.  Then, to my surprise, she went on to say that it was quite a lot to go through with the operation to collect the eggs and everything, but that she had concluded it was worth doing because it would be an awful lot of shifts in the shop to get the same amount of cash - and I realised she was talking about becoming an egg donor.

Admittedly, it was only a short conversation, but at no point at all was the thought of a child, of helping someone else or of the future consequences mentioned. Whether it was worth donating eggs or not focused entirely on how many shifts you'd have to work in a shop to get the same amount of money.

It made me feel terribly sad.  I know we need more egg donors and I was in favour of the changes to compensation, but I really hope that young women like this are getting the advice and counselling that they need before making decisions about donating eggs. Although £750 probably doesn't seem much to the professionals running the HFEA, it's enough money to make a huge difference to many women in the UK.  Of course, we want to compensate people properly, but we do have to be very wary of creating a situation where for young girls in need of cash, donating their eggs is a purely financial decision.

The HFEA debate

I was really sorry to have to miss the recent debate organised by Progress Educational Trust on the future of the HFEA, and so was pleased to find a write up of the evening in this week's edition of Bionews.  It was clearly a lively and interesting debate - it may only be a snapshot view but it's interesting that those working in fertility clinics seemed keenest to be rid of the HFEA, while those on the outside were keener for it to remain.  I'd be the first to agree that streamlining and change are both necessary, but it's far too easy to focus on the negatives and to forget all of the good work that the HFEA has done and continues to do.

One of the speakers apparently claimed that people were travelling overseas for treatment because of over-regulation by the HFEA in the UK.  Having spoken to many people who've opted to have treatment abroad, I can't remember hearing one of them mention "over-regulation" as an issue - excessive costs and waiting lists were more likely to come up as reasons for having treatment abroad, as well as higher success rates in some other places and being treated as an equal by consultants.

Sadly the one thing that wasn't mentioned in the reporting of the evening was patient information, and I don't know whether this cropped up at all.  For most fertility patients, information provision is one of the most important functions of the HFEA.  It's the publication of success rates, the reliable information about new treatments and the calm response to fertility scare stories that is so vital - and yet it seems to be the one thing that most of the experts discussing this seem to entirely overlook.

When success rates aren't all they seem...

In the UK, the HFEA doesn't just regulate fertility clinics, but also provides patients with accurate information about treatments and about IVF success rates. We often take this for granted, but a story I've just been reading about fertility clinics in Canada may make you realise quite how fortunate we are to know that the success rates produced by the HFEA have been checked and clinics monitored.

It seems that in Canada, success rates are produced by an organisation which is run by the clinics themselves, and the clinics submit their own data with no checking or monitoring. Apparently this has led to a situation where clinics only submit the figures they choose to post - and where eight individual clinics are all claiming to be at the top of the league tables.

Given the current uncertainty about the future of the HFEA, this illustrates quite how important a role the authority plays in providing patients with accurate information about clinics.

You can read more about the story here

Three parent IVF...

The papers have dubbed it "three parent IVF" which is likely to send the anti-IVF brigade off on a familiar rant but in fact a new technique currently being investigated could prevent serious genetic conditions being passed from mother to child. The HFEA has launched a consultation into the process, which replaces the faulty genetic material in the mother's egg, to consider whether the technique should be offered.

The new technique involves using a donor egg and taking out the nucleus, which is replaced with the nucleus from the mother's egg. The faulty material, which is contained in the rest of the contents of the egg, is therefore eliminated which means that the resulting embryo should be healthy. The donor would only have a limited genetic link to the child as the crucial nuclear DNA would still be inherited from the mother.

Scientists are still investigating the technique which has the potential to prevent diseases that are currently incurable and a change in the law would be necessary in order for it to be offered to patients.

You can read a statement from the HFEA about the consultation at www.hfea.gov.uk

Considering fertility treatment?

If you're considering fertility treatment, you may be interested in a new publication from the HFEA, called Getting started: Your guide to fertility treatment. It's for those who are at the beginning of their fertility treatment journey and explains what the different treatments are, what to think about before you start, what to expect at a clinic, funding options, potential risks and where to get support.

You can order your free copy at www.hfea.gov.uk/order or pick up a leaflet with a pre-paid order form at a GP surgery.
Each section of the new guide directs people to the HFEA website for more detailed information and the latest data on licensed clinics.

You may also be interested in my books The Complete Guide to IVF of The Complete Guide to Female Fertility , which is also ideal for anyone at the start of their journey and for any woman who is wondering how late she can leave it to have a baby.

Reduced fees for single embryo transfer patients

Did you know that the Human Fertilisation and Embryology Authority (HFEA) will no longer charge clinics for patients who have frozen embryo transfers after putting back just one embryo in a fresh cycle?

At the moment, fertility clinics pay the HFEA a fee for each cycle they carry out, and the clinics pass this charge directly on to their patients. From October onwards, the fee will be dropped if a patient who had an unsuccessful single embryo transfer goes on to have additional frozen embryo transfers. The idea is that this will help reduce any additional financial burden from the decision to have just one embryo put back at a time.

Single embryo transfer does make sense for younger women who have good quality embryos as it means you are more likely to have a single, healthy baby. However, in the current economic climate many people do worry that it may end up costing them more to get pregnant this way. The HFEA hopes the decision will show the authority's commitment to helping patients who choose the safe and sensible option.

You can see more here

Donor sibling link

People who have been born as a result of donor conception will be able to contact others who share the same donor from today. Once they reach 18, those conceived through donor treatment can join the Donor Sibling Link, a new service launched by the HFEA (Human Fertilisation and Embryology Authority), which will enable them to get in touch with any genetic siblings who have also joined. As donors usually make more than one donation, there may be a number of genetic siblings in different families and this will allow them to find out about one another.


The Donor Sibling Link can only be used by those who were conceived using donor eggs, sperm or embryos and their parents or other family members are not able to access the information.
See more here

The real cost of IVF

It's something patients have been complaining about for years - the hidden extra charges they often face when presented with a bill for their fertility treatment. Now, the HFEA is taking action on the issue, and has told clinics that they will be expected to present patients with a clear plan of how much their treatment is going to cost.

When so many people have to save or borrow to pay for treatment, an unexpectedly large bill can cause real problems and costed treatment plans at the start should make a real difference. There's a press release on this with more details on the HFEA website at www.hfea.gov.uk

HFEA consultations on donor conception

The HFEA is holding a couple of events related to donor conception - one for people who were conceived using donor sperm or eggs and their families, and one for those who are donors or who are considering becoming donors. Both events will be an opportunity to discuss issues surrounding donor conception.

The event for donors and prospective donors will be an evening workshop on 22 July in Hatton Garden, London between 5 and 7.30. Donors will be able to discuss the kind of guidance and information the HFEA could provide to support them. To register for this free event, see details on the HFEA website

The second event is for donor conceived people and their parents, and is also in Hatton Garden between 10.30 and 3.00 on Wednesday, 29 July 2009. This will be an opportunity to find out more about the changes to the information which donor-conceived people can request about their origins. The HFEA wants to hear their views about the support they need to access this information from the HFEA. Again, details can be found on the HFEA website

No word from the HFEA..

Despite some of the frightening stories in the media over the last few days about the increased risk of defects for babies born after IVF treatment, there has been no reassurance for patients on the HFEA website. Many of the papers have quoted the HFEA, but it seems that providing patient information on this issue is less of a priority than talking to the media.

I rang the HFEA press office this morning to ask when some advice to patients would be put up on the website, and was told that it would possibly happen later today. Nothing seems to have appeared yet. This is despite the fact that the HFEA must have known that this story was about to hit the papers since Friday at the latest.

It is easy to forget how frightening stories like this can be for people who are having fertility treatment, and allowing journalists to run wild with the story without a word of reassurance to patients is singularly unhelpful. If you are concerned, the HFEA have apparently found time to tell The Independent that " some of the potential risks needed further investigation and, when the new advice comes into full use from October, it will be pointed out that the majority of IVF babies are born health".

I hope that patients won't have to wait until October to receive this reassurance directly from the HFEA.

HFEA wants your views

The Human Fertilisation and Embryology Authority would like to hear your opinions about the way information held on IVF patients should be disclosed to researchers.

Under the new Human Fertilisation and Embryology Bill, information about patients can be disclosed to medical and non-medical researchers, but exactly how this might be done is still being discussed. The information held on patients by clinics is quite detailed, and the HFEA has access to the name, date of birth and cause of infertility of those who have IVF treatment. More research in the field of IVF could benefit us all, but at the same time it is perfectly understandable to have some reservations about how identifying data is released. Now's your chance to express your views on this, at the HFEA online survey which you can find at www.hfea.gov.uk

Regulation at work

If you have an interest in the way IVF is regulated in the UK, there's an opportunity to see the regulator at work in March when the Human Fertilisation and Embryology Authority holds an open meeting. Anyone can attend the meeting on March 18 which will be held in central London. The topics up for discussion include the public consultation on the new Code of Practice. For more details, see the HFEA website at www.hfea.gov.uk

Your chance to have a say

If you've found it hard to find answers to your questions when you've been comparing fertility clinics, now's your chance to have a say. The Human Fertilisation and Embryology Authority is interested in your views on how information about clinics is presented, and also on the new code of practice which includes information on the consent forms patients sign when they have IVF.

Most of us turn to the HFEA for information when we're looking for a fertility clinic, but not everyone finds it easy to access the information they want in the way that they'd like. The Authority is considering whether they should include information about the patient experience of clinics, and about safety and the quality of service. If you'd like to make your thoughts known, go to the HFEA website at www.hfea.gov.uk where you will be able to find out how to do this.

HFEA conference

I had the pleasure of speaking at the Human Fertilisation and Embryology Authority conference yesterday, where the regulation of IVF treatment was up for discussion. I'm always pleased when the HFEA want to hear patient views but I must admit, I'd been rather daunted when I was given the title of the talk - "What patients want from a regulator". The reality is that most people going for IVF treatment are only concerned with one thing - whether they are going to be successful - and the role of the regulator is one of the last things on their minds.

However, it made me realise how much of what the HFEA does we take for granted as patients. We expect clinics to be inspected and treatments monitored, we expect to be able to feel confident that our eggs, sperm and embryos are kept safe, we expect to be able to get accurate information about clinic success rates. In the UK, our fertility treatment is quite tightly regulated, and it can seem that the pendulum has swung too far and that the regulation has become interference. Many fertility doctors complain openly about the HFEA, about the paperwork and the endless requests for information but for us as patients, it is absolutely crucial that we can feel secure and know we will be safe at any licensed clinic.

Meanwhile the HFEA has just published the latest national figures on IVF success - the numbers of patients having IVF has risen once again and the success rates have also gone up slightly. You can read more on the HFEA website

Could you be a member of the HFEA?

The Human Fertilisation and Embryology Authority, the body that regulates IVF in the UK, is looking for a number of new members. Some will be doctors or scientists who have experience in the field, but the majority of spaces on the authority are for lay members, who will have other relevant skills to offer. It's a fascinating opportunity for anyone who has an interest in this area, and if you want to find out more you can follow this link

Single embryo success

Doctors at a London hospital have proved that putting back just one embryo during IVF doesn't have to reduce your chances of getting pregnant.

The team at Guys and St Thomas' managed to increase their pregnancy rate from 27% to 32%, whilst cutting their multiple birth rate in half. They did this by using more developed embryos, or blastocysts, and their newly published research shows that putting just one back at a time really does work.

For too long, the risks involved in multiple pregnancies have been played down by many fertility doctors, who don't have to see the pain and anguish of miscarriage, of premature, sick babies or of children who will have health problems for the rest of their lives. Of course, not every multiple pregnancy is problematic, but the Human Fertilisation and Embryology Authority has estimated that more than a hundred IVF babies die every year as a result of multiple embryo transfers, and this is not a risk patients should have to take.

The new research shows that fertility clinics can move to single embryo transfer without cutting the chances of success, and others should be encouraged to follow this lead so that fertility patients no longer have to take unnecessary risks with their own health, and that of their future children.

You can read a report on the study, published in the British Journal of Obstetrics and Gynaecology, in The Independent

New chair for IVF regulator

The Human Fertilisation and Embryology Authority, which regulates fertility treatment in the UK, has just appointed a new chair.

The authority has today announced that Professor Lisa Jardine, probably best known to most of us as a presenter on BBC Radio Four, is to take over from Walter Merricks, who has been standing in as chair. Lisa Jardine is a Professor at London University, and is also the author of a number of books, both histories and biographies.

This is an interesting time for the Human Fertilisation and Embryology Authority, as the laws governing all aspects of its work pass through Parliament, and it will be interesting to how Professor Jardine will shape such an influential role.

You can read more about the appointment on the HFEA website

Latest IVF figures

New figures out today show that more people in the UK are having IVF, and that there has been a small increase in success rates.

The Human Fertilisation and Embryology Authority figures are always rather out of date by the time they are published, and these relate to 2005, but they show success rates had risen by 0.9% to 21.6 overall. For younger women, the increase was slightly better, with success rates for women under 35 rising from 28.1% to 29.6%. Meanwhile the number of patients having IVF has risen by six percent.

At the same time, the HFEA released the success rates for each individual clinic in the UK, but this year the Authority made a point of warning patients that the league tables should not be used in isolation as the only way to select a clinic. Not all clinics offer all treatments, and some have better success rates than others for women of different ages. The proximity of a clinic to home should also be taken into consideration. For more advice on how to choose a clinic, you may want to see my November posting on the subject. You can read more detail about all the latest HFEA figures here

HFEA acts to reduce multiple births

The Human Fertilisation and Embryology Authority has finally come up with a long-awaited policy to reduce multiple births after IVF, and is calling for a professionally-led national strategy to cut the twin rate to 10% over a period of three years.

Patients are often unaware of the real risks they are taking with their children's health when it comes to multiple births, and fertility clinics have not always acted in their best interests on this front. The biggest danger to the health of children conceived by IVF in the UK is multiple birth, and the HFEA estimates that around 126 IVF babies die every year purely as a result of being multiples. For many others, being a twin or triplet may mean being born prematurely and suffering life-long health problems as a result of this.

To have one healthy child at a time should be the ideal outcome of fertility treatment, but the patchy and inadequate funding for IVF and fierce commercial competition between clinics has not encouraged joined-up thinking on this matter. For too long, patients have been penalised by a system which encourages some of them to take unnecessary risks.

We must now hope that the HFEA's strategy really does make a difference, and warmly welcome the fact that the Interim Chair of the Authority, Walter Merricks, has written to the Health Minister to explain the link between patient concerns about single embryo transfer and the lack of funding for IVF treatment. Maybe now, finally, we will see a move towards the government's broken promises on this issue.

You can see the HFEA press release here

Warnings over sperm donor service

A recent investigation by The Guardian's science correspondent, James Randerson, has revealed that online sperm delivery companies may be operating illegally, and putting women who are using their services at risk.

The online companies provide donated sperm for single women or lesbian couples who want to try to get pregnant. They offer to deliver fresh sperm samples from anonymous donors to your door by courier within a couple of hours of being produced. However, this means that the sperm is unlikely to have been thoroughly screened for HIV.

In properly regulated clinics, a sperm sample is taken and frozen for sixth months, during which time the donor is tested twice for HIV, as it can take that long for the virus to show up in tests. The sperm delivery company used by The Guardian tells potential donors they can give their first sample just days after being tested for sexually transmitted infections.

The Guardian has passed details of the investigation to the Human Fertilisation and Embryology Authority, but the story highlights the dangers of buying sperm online. See more details here.