Petition for IVF on NHS in the UK - what you can do to bring about change and improvement, regardless of your view

I recently received a petition to stop the postcode lottery in the UK in relation to how IVF treatment is allocated to those needing it.

http://www.petitiononline.com/freeivf/petition-sign.html

If you support this initiative, please sign the petition. It may help someone you know who needs it and cannot afford it. Of course, not everyone is of the political or religious view that this is a good thing. Each (wo)man can only make their own decisions.

The thing which is saddest, are those who would happily take from the system if they were the man walking in those 'fertility-challenged' shoes, but do not support it from others. Isn't that a double standard?

Here is the challenge to all of us - what are you doing to be sure that there is less of a demand on the NHS for such treatments, to raise awareness of fertility issues? This is regardless of whether you don't think it should be on the NHS in the first place, or do not support such treatment morally - but if that is your view, then this applies to you even more:

• Have you spoken to everyone you know in their twenties and thirties to be sure they are/were properly informed on fertility issues?;
• Have you made sure the older generation are aware of infertility and what it is like for this generation and the next - just keeping it to the closest circle of people to you: this could be your sister, brother, daughter, son, grand-daughter or grandson; let alone a friend of yours or other family relative?;
• If you have the means and have no moral dilemma with such treatments, will you help your children set up a little fund for treatment if they need it but can't afford it, or can't get a loan to cover it?
• Do you know how much fertility treatments (e.g. IVF) cost and how many times people attempt them?
  

If the answer to any of these questions is 'no', you're a perfect candidate to become an advocate for increased (in)fertility awareness and education. We are blessed with a brain and mouth and it is up to us to put them to good use - don't waste your time gossiping - use them to do good in the world and help make it a better place for those we care about.

Silence or thinking it is somebody else's responsibility or problem does not lead to a positive outcome.

AMH Testing - is this a good or a bad thing? One take on the debate across the pond in the UK

http://theafa.typepad.com/theafablog/2010/07/the-amh-test-a-good-or-a-bad-thing-one-womans-take-on-the-debate-across-the-pond.html - see this link to the same on the AFA Blog


There has been a lot of discussion in the United Kingdom media over the last month as to the use of the AMH test. Two new uses are suggested: one is as a predictive tool for women to know when they will hit menopause and to be able to decide therefore when to try for a family; the other is for the National Health Service (NHS) to use as the deciding factor on whether the State pays for IVF treatment or not. Currently age is one of the key criteria applied.

With respect to the latter, some of the concerns are financial and political relating to a person's view as to whether fertility treatment should be paid for by the State or not. (It should be noted that the State discounts monies from each working person's income to contribute to the pot to pay for health coverage for all.) People fear that this will open floodgates to more IVF being provided by the State and in many cases people don't feel that it should be covered in the first place, and that couples should pay for it themselves. The arguments aren't dissimilar to those in the USA regarding how contributions to insurance schemes should be applied.

The other concerns however relate to how the AMH test result will be used by women. Will they rely too much on this result and forget the other factors which may affect their fertility? A woman with a good AMH number may assume she can delay having children into her late thirties and forget that there are other relevant factors – e.g. as she gets older the quality of her eggs reduces, there is a greater risk of chromosomal defects, miscarriages are more of a risk. The best age physically to have a child is between 18 and 30 apparently, and while in today's world it isn't always possible to have children in that bracket, it isn't necessarily a good idea to put off having children much past thirty or thirty five if you can help it. The fear is that over reliance on the AMH result will exacerbate the modern problem of couples electing to delay child-birth later than they should.


So is AMH testing a good or a bad thing?


I don't propose to try and discuss whether it should be used as criteria for determining who gets State paid IVF and who doesn't. That is one for the politicians and medical professionals to decide. My only observation is that fertility is a very complicated issue, and someone with a low AMH isn't always the poor responder, so it is dangerous to be overly simplistic in the evaluation criteria.


In relation to how an AMH test can help women to understand how fertile she is, though, I do think it is a good thing. But with one huge caveat; which is this:


It has to be relayed and given to women in the correct factual context. You can't just say to a woman that she has a good AMH number and allow her to think that she should be fine to delay having a family if she wants to. She needs to be given all the other relevant facts and risks and be told that this is just one indicator as to her fertility. There are many others risks and factors which are relevant and so that she cannot rely only on a good AMH. She has to be told to not ignore all the other risks that come with age – for example if she has fibroids or endometriosis, this could be more of a complication as the years go on. And further, she should be reminded that even if she is absolutely fine it doesn’t rule out that her partner/husband may have issues – male fertility problems are the sole cause of at least a third of cases.


Any initiative which enables women to be more aware of her fertility from early on, as opposed to having an unpleasant surprise when it may be too late, has to be a positive thing in my opinion. But she needs to be made to understand her AMH number in the context of all of the other risk factors that come with age and fertility. And that she is only half of the equation, albeit an important half. And while presently AMH testing seems to be less popular in the US than in the UK, in our modern world of internet, ideas can cross the pond pretty swiftly. So everyone needs to be aware of this as it relates to an issue which applies to all couples, irrespective of their nation. The goal is the same – reducing the number of infertility cases and improving education on fertility.

Breaking the silence on infertility - SELF Magazine

This is an excellent article to read on breaking the silence on infertility and encouraging people to be more aware of the issues relating to infertility and fertility.

http://www.self.com/health/2010/08/breaking-the-silence-on-infertility?currentPage=1

People suffer in silence and the topic of discussing issues relating to (in)fertility remain in the dark ages. This article helps to chip away at that, and shine a little light on the issue.

Thank you for taking the time to read.

What IF? A portrait of infertility

Please look at the following vimeo - http://www.vimeo.com/11214833 which I found today. It has just won a Team RESOLVE Choice Award for best viral video and rightly so.

It is absolutely excellent!

The words she uses to describe her video are wonderful:

My hope is that this video illustrates the "everydayness" of coping with infertility and that by publicly "outing" myself and my struggle with infertility that I can help erase some of the stigma surrounding the subject. I hope I can be a voice for those women and couples who can't speak up or speak out for themselves.

I feel exactly the same about removing the stigma surrounding the subject - discussing fertility and infertility should have no stigma. I wish I had been as eloquent as she is, however, regarding the women who can't speak up or out for themselves - those who suffer in silence, feeling unable to speak about it all. Being silent isn't a sign of selfishness or weakness, it is that the world we live in can make it very hard for us. Ridiculously hard.

So let's all help each other to be stronger and make life a little easier for each other at each stage.

Please share this video clip with all those you know. I love the line in the text below the video. When something is so perfectly said, there is no need to para phrase - I can simply repeat:

Please continue this grassroots advocacy by continuing to share this video online!

Why do we know so little about our own fertility?

Here are the facts: Female fertility in fact begins to decline from late twenties/early thirties (not thirty-five), with the rate of decline increasing at age 35, another drop at age 37, and pregnancy chances significantly reduced after age 40. IVF success rates similarly drop after age 35. This varies amongst women - in some cases it could be sooner, in others later, but the one common theme is that most have absolutely no idea how fertile they are. Men also are a far larger part of the equation than people realize – a third of cases relate to solely male fertility issues.

So what's the biggest surprise? It is the amount of misinformation that exists in society. How often men and women really know very little about their own fertility.

This is reinforced by a University of British Columbia study reported last year in the Journal of the American Society of Reproductive Medicine, which highlighted that while women were aware that fertility declined with age, they were not aware of the extent to which it declined concluding that this lack of education was leading to an increase in the number of unintentionally childless women. Yet fertility seems to be something which even well-informed people are reluctant to discuss for fear of offending. The question is why? Why does this misinformation exist?

Mis-education and misinformation to a large extent comes from the media. They are focused on sensationalist headlines, such as ‘Woman of 50 gives birth to twins’ or ‘celebrity X becomes mother at 45’. They fail to report medical facts accurately, or without spin. They should report the statistical likelihood of such a pregnancy happening with one’s own eggs, to give a real sense of the (low) probability of it happening or if donor eggs were used. They misleadingly give the impression that IVF cures all infertility issues.

Women who have suffered or are suffering from fertility issues can add to the lack of information by not sharing the knowledge they obtained with others. Many suffer embarrassment or shame to admit a problem. Some do not wish to receive negative feedback. Others develop ‘rose-tinted spectacles’ after a successful birth, forgetting their troubles. I was amazed at how many women suddenly shared their stories, but only after you started to tell yours. It is only through sharing honest accounts that we get the correct information and start to really ‘get it’.

People may expect their families to ask about plans for children and talk about such issues. This is not always the case, particularly in this modern world where often parents are scared or do not want to be ‘too involved’ in children’s lives. Today many take the approach with their adult children of, ‘I don’t interfere’. Parents may not share relevant medical information relating to their own fertility. Some feel that they don’t have to, once children are adults. Yet ironically as children they were probably too young to appreciate the information’s relevance.

Assumptions that people make about working women can be very alarming. If they see her working with dedication to her job, they assume she is a career-girl not interested in children, even if she has not been asked or said anything along those lines. Assumptions are something people do often, to somehow ‘classify’ things in their heads, even if without the facts. It’s easier than asking questions.

Men also suffer from this misinformation. Because of it, they can equally delay starting or feel that a woman who talks about starting a family sooner is being ‘paranoid’ or ‘unnecessarily panicky’. Men should understand about their own fertility, and that of women, and vice versa. After all, it is a fifty/fifty equation, isn’t it?

With all these factors bouncing around, what can we do to grapple the issue by the horns and improve awareness?

Education can improve at various levels. Start at school with sex education classes extended beyond prevention of teenage pregnancy, to include knowledge of the changes in fertility with age. Improve the education of GPs - surprisingly, these can sometimes lack understanding on the extent that fertility declines with age. GPs should be required to have fertility conversations with women at contraception checks to ensure they’re properly informed. The same should be done at gynecological checks. Regular fertility checks should be promoted.

Employers should be encouraged to be supportive of women in their more fertile years, so that they feel they can return to work without risk. This needs positive affirmation from employers beyond relying on legislation. It would be good to see employers embrace fertility awareness days in their organizations.

We can encourage people to speak more openly about fertility to foster improved education and awareness and remove the stigma of discussing. In the States, Giuliana Rancic and her husband are pioneers with their openness on their troubles to conceive whilst in the celebrity spotlight. After speaking to some of those who said ‘you have plenty of time’ previously, I was surprised at how receptive and onboard they were to change how they spoke going forward. And even if they aren’t immediately receptive, at least the seed for thought is planted. So we can do it, starting with our everyday exchanges.

Information needs to be relayed in an intelligent fashion. Intelligent people need to be spoken to intelligently. Statements such as ‘You don’t want to leave it too late’, leave only an impression of feeling nagged. People are much more likely to listen if you speak to them with clear facts. For example, that it could take 5 or 6 months to get pregnant for a woman age 30, compared to nearly 2 years closer to age 40. That chromosomal defects increase in your thirties. That miscarriage risks increase with age, being about 1 in 5 at age 35. That IVF success rates similarly decline after age 35.

It isn’t about creating fear amongst people. There will always be a need for IVF for a variety of reasons. But it is about stopping avoidable instances of infertility; to put more people with infertility in the age bracket (below 35) with the best chance of success in treatments. That has to be a good thing – less financial cost to couples, reducing the turmoil that comes with the uncertainty of fertility treatments, and reducing any health side-effects which may come as a result of fertility drugs.


http://theafa.typepad.com/theafablog/2010/07/infertility-prevention-from-a-personal-perspective.html - see AFA blog posting of the same

Why a blog about age and fertility?

There are lots of blogs out there sharing wonderful information about things to do to preserve your fertility over 35, and success stories of women over 40 told they would have a hard time conceiving and carrying term. I read them all - they are truly great sources of information, on herbs and vitamins that you can take, etc. I have learnt so much from them.

But you see, the thing is, women turn to this websites and blogs when they have either decided to have a family or when they have started to have problems. What I want to do, is come at the issue from the other end. Before couples start to try for a family. What do you need to know then?

Having been there myself, what is amazing is how little focus there is on information for men and women in that 'zone' of life. And consequently I want to highlight that area as one of special interest and attention. Education on our own fertility needs a massive spotlight on it because we are letting each other down by not making sure we are all properly educated on basically 'how we work'. How does our fertility change withage. I heard/read somewhere this week that they are predicting that there will be one in four couples childless, very likely unintentionally.

My goal is simple - to try and stop the avoidable instances of infertility out there, so that there are less couples at risk of becoming unintentionally childless.