* Author Topic: HFEA's (inadequate) response to my e mail - and my part reply..  (Read 2102 times)

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Offline kittyt

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Dear Girls - and Boys - here is some recent correspondence from HFEA - as requested - I have published it - it makes rather depressing reading ....nb read from bottom up.
Kitty x

Dear Ms Augst -
Thank you for your reply - I would like you to know that one of the reasons that I have not had a chance to reply to you is because of the emotional trauma that I have been through as a result my experience with the HFEA's future favourite option alongside ESET - a frozen cycle.
I tried to go through with a "natural" frozen cycle in November. "Natural" is a mismnomer. I had 3 weeks of waiting to see when I ovulated, bloodtests, hanging on to wait for the phonecall  everyday to see if my hormone levels were correct - finally, to be told on the day of proposed embryo transfer that my levels were not satisfactory.
I was then advised to go into a medicated cycle.
This involved taking Suprecur nasal spray for 3 weeks - the same drug as my fresh ICSI cycle - suffering as a result painful muscular cramps and mood swings. Then I took 2 further weeks of progesterone pessaries alongside further bloodtests and waiting for the phone to ring - levels still not satisfactory - so on to the injections - more bloodtests and more waiting - finally to get to the day of transfer. Home at last? No - we had 3 perfect day 5 blastocysts - with a theortetical chance of 60% defrost - how many survived? N O N E.
To describe our heartache and disappointment is too much.
So you see  FET is not the answer. Contrary to point 9 in your reply it is not less emotionally or physically demanding than a fresh cycle  - and in my case if I add the success rate to that of the initial IVF cycle the result was not equivalent and not better than transferring 2 embryos in the first instance. I have a baby from a double embryo transfer.
We will have to start again - and I will be doing so as soon as possible to try and have some degree of success before new guidelines are issued as I am sure that they will be.
Let the consultant decide for themselves - this is difficult enough without the imposition of a set of inhumane and alien rules and regulations.
I shall be responding to your reply in full once I feel better - but please take note - that a frozen follow on cycle really is not the answer for everybody.
Yours sincerely

Charlotte Augst <[email protected]> wrote:
Dear [Kitty]
Thank you for your email about the recently published report by the Expert Group on Multiple Births after IVF that was set up by the HFEA to review the problem of multiple births after IVF and to make recommendations for how the situation could be improved. The report is now published on the HFEA website (for some technical reason I don't quite understand myself it took a bit longer than I had hoped to get it on there).
Here is the link in case you would like to see the whole thing: http://www.hfea.gov.uk/cps/rde/xchg/SID-3F57D79B-0F331A88/hfea/hs.xsl/483.html . It is a rather lenghty document, and I understand that it might be difficult for you to print it off at home, so if you would prefer, I could send you a paper copy of the report - you would then have to give me a postal address.
I hope it will be useful if I respond to the points you raise one by one. This means that this is quite a long email response, but I hope this way your concerns are addresses properly. If you think it would be helpful you could also share my response with other fertility patients you communicate with.
1) You will find that the group does not recommend a blanket policy or any such thing. On the contrary, the group points out explicitly that to introduce a blanket 'one embryo for all' type policy would damage women's chances to conceive and would be unacceptable.
2) The group recommends that those women at highest risk of conceiving twins should only have one embryo transferred. They are also the same women who have the best chances of conceiving after IVF at all. As you will be aware, it is not always easy to identify which women have good chances of conceiving - but the age of the patient, her treatment and obstetric history, the ovarian response to stimulation and the number and quality of embryos that result after fertilisation are all factors that indicate a woman's chances of success. So if a woman already had a number of failed attempts at IVF, is older or doesn't have good quality eggs or embryos (I don't like this term, but you know what I mean, I am sure), she will not be forced to have only one embryo put back, if the group's recommendations are followed.
3) The group also states that it is indeed best for the clinician and patients to decide how to proceed with the treatment, which includes the number of embryos transferred. But the group also acknowledges that, based on past experience, there are a number of fertility practitioners, and sadly also a number of patients, who would always push for the highest possible number of embryos for transfer because the possible resulting risks for the children born after IVF is not that clear or pressing to them as the chance to achieve a pregnancy at all. This is very understandable, and the report identifies reasons for why this might be the case (and the lack of NHS funding for IVF treatments is clearly a very important factor here). But this means - at least this is what the group argues - because of the way fertility services are run in the UK (with patients often having to fund their own treatment and therefore being under a lot of pressure), it is unlikely that the sector itself will make the necessary change to practice unless there is some guidance to create a sense of urgency about the issue.
4) The group makes two main recommendations for how the necessary change can be achieved: the first is to let clinicians figure out themselves which women are best offered a single embryo for transfer, but to give them an overall maximum twin rate for the year that they should not exceed (the group suggests that this rate should be below 10%, currently around 1 in 4 IVF pregnancies ends in the birth of twins). The second option is for the HFEA to define which women should only have one embryo replaced (for example, women under 35 in their first two treatment cycles).
5) The HFEA was set up to oversee the safety and quality of fertility services in the UK. Clinics are required by the same Act (HFE Act 1990) to 'take into account the welfare of the child or children born after IVF'. The group argues that neither the HFEA nor clinics would be doing their job properly if they ignored the strong evidence for the much increased health risks for twins and their mothers.
6) You will see that the report does briefly discuss the incidence of multiple birth after fertility treatments such as ovarian stimulation with Clomid or IUI, but it is harder to estimate the exact contribution these treatments make to the overall number of twins born in the UK. Also, these treatments fall outside the remit of the HFEA, so there is nothing the HFEA can do about them. Based on international studies it seems that one quarter of all twins born in the UK are the result of IVF/ICSI and a further quarter are the result of ovarian stimulation and so on. So half the twins born in the UK are not the outcome of 'spontaneous' twinning.
7) Experts at the London School of Hygiene and Tropical Medicine (sounds like they should do malaria research, but they actually do a lot of public health studies) estimate that each year 126 avoidable deaths of newborn babies occur because of the increased risks of multiple births after IVF. This means that in 2003 (this is the latest year for which we have verified national figures) 126 IVF babies would not have died, if their mothers had received one, rather than two embryos during treatment, and had therefore given birth to a singleton baby (more likely to be born at full term and with a normal birth weight). The group felt that this was an unacceptable risk, given it is caused by a medical intervention. It is also avoidable, if the UK fertility sector learned from the international experience where single embryo transfer has been successfully introduced without a drop in success rates.
8) The group acknowledged (and the patient representatives on the group made sure that this was also expressed in the report) that IVF is a stressful, often painful and upsetting experience. This is why it is important to target carefully the group of patients who are just as likely to get pregnant after eSET (maybe after a frozen follow-on cycle) as after two embryo transfer. This has been achieved in other countries. What the group wants to stop is that the trauma of miscarriage, stillbirth, prematurity, intensive neonatal care, ongoing health problems and even the death of a much longed for baby is added to the stress of IVF.
9) You are of course right that frozen/ thawed cycles have lower success rates than fresh ones, but they are also a lot less demanding physically for the woman and if you add their success rate to that of the initial fresh IVF cycle, the result is equivalent, if not better, than transferring two embryos in the first instance.
10) Finally, you acknowledge that there were patient representatives on the group (and if the HFEA did proceed with proposals for change to its guidance, then patient groups and individual patients would be consulted further). I am afraid that I don't think it is appropriate to ask who else on the group had or has fertility problems (I wouldn't know anyway). If the group had been set up to discuss safety issues around cancer care, let's say, one wouldn't demand that everybody on the group had had cancer. It is important to include the patient persepective (and the HFEA will strive to make its policy process as accessible and transparent as possible to patients), but it is also important to get the views and expertise from people who work with newborns, who run fertility clinics or who commission these services for the NHS - so the group included all these experts.
As you have written to me, you will be aware that I am the member of the HFEA's policy team, who will manage the policy process that will follow now that the Expert Group have done their work. Let me conclude therefore by saying that I am personally very committed to trying to make the patients' voice heard in this review and in all the work the HFEA does. I am sure it is not always easy to see the benefits of the HFEA's work to your own personal treatment, and I can understand that sometimes we seem like a bunch of faceless bureaucrats who just want to make patients' life harder. But I am sure I speak for all my colleagues when I say that we all want to make IVF a better experience for patients and their families and that we are very committed to increasing the safety and efficacy of IVF. The HFEA has no control over funding issues so the whole sorry situation of NHS funding for fertility services is not something the HFEA can do very much about. But the Expert Group has made some very strong statements about this issue and we know that patient groups like INUK are campaigning for better funding for fertility services.
The Authority will discuss the report in November and early next year and a consultation on possible options for regulation will start in spring of 2007. You, and every other fertility patient, are very welcome to contribute to that consultation process.
I hope that this email helps to address your concerns.
With very best wishes
Charlotte Augst
Dr Charlotte Augst
Policy Manager
Human Fertilisation and Embryology Authority
21 Bloomsbury Street

From: [kitty]
Sent: 19 October 2006 22:21
To: Charlotte Augst
Subject: Single Embryo Transfer

Dear Ms Augst
I am very concerned and disappointed to read that the Expert Group is recommending what seems to be a generic move towards single embryo transfer in an apparent effort to reduce the number of multiple births after IVF.
In addition to the fact that the Group has completely ignored the amount of multiple births resulting from other forms of less intrusive fertility treatment such as Clomid, IUI etc. and their contribution to the Report statistics, it is fundamentally wrong to aim propose the imposition of a blanket set of rules on a procedure which each individual couple affected undertakes for their own individual reasons and to which, and much more importantly, they will respond to individually and with varying degrees of success, if indeed at all.
It should not be the place of the HFEA to dictate how many and to whom embryos should be transferred, but rather that responsibility should lie with the individual consultant alone, acting reasonably, who is treating the individual couple and is fully aware of the case history relating to the infertility in question. He or she alone will know whether the reason for undertaking IVF is purely physiological and /or genetic, male or female factor or indeed unexplained, and whether it is, in their professional opinion, on the facts of each individual case, viable that more than one embryo of good quality (if such indeed exists) is replaced in the cycle concerned.
IVF/ICSI is the "last resort" for many people. It is a procedure that exists to help those couples (including myself and my husband) for whom nature is not enough.  To have twins (the really only realistic number of multiple births which arise,triplets being now so rare) is, and generally will always be viewed, as a "bonus" to those going through IVF. It is wrong for the government to target such a vulnerable and fluid group and veil what is essentially an NHS cost cutting effort in such emotive terms. 
IVF is above all not something which, as Lord Harries in his recent interview with the Sunday Times views as a set of intellectual and moral conundrums to be relished. It is overwhelmingly emotionally, financially and pschologically draining. It is at times humilitating and degrading. It is something which individuals undertake to try and have a family - not just a single child - of their own - a basic human instinct. 
Bearing in mind that "back up" frozen cycles of IVF offer significantly less chance of success than fresh cycles, to further threaten any chance of a single cycle of IVF being successful by imposing an alien governmental blanket quota of embryos per cycle will add only further to the pain and anxiety suffered. This is not a clear cut area where one set of rules fits all. Leave it to the individual consultants and their professional integrity - please stop threatening to add to the stress of an already fraught,difficult, alienating and above all highly personal and uncertain experience.
Finally, perhaps you would be good enough to disclose to me how many members of the Expert Panel, aside from the patient representative, suffer from infertility problems themselves - none I expect.
Yours sincerely,


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