WHAT EVERY MAN AND WOMAN IN THEIR TWENTIES AND EARLY THIRTIES SHOULD KNOW.

Saturday, August 28, 2010

Is infertility an illness? A perspective and call for increased advocacy for awareness


I was recently told that infertility was not an illness. In the speaker’s mind, infertility therefore did not merit emotional support in the same way as if the person was suffering from an illness.

This gave pause for thought. I hadn’t actually thought about it in those terms. Admittedly, it is not like having a life-threatening condition such as cancer. Without a doubt, however, it is a medical condition, and one which can have far-reaching consequences on the person suffering from it.

What analogies could you use to express what infertility feels like? Could you say that it is like having a tumor on your arm which you don’t know if can be controlled with treatments, or if they will have to cut off your arm? I was told that this could be a bit melodramatic. But I don’t think it is, as emotionally it evokes how a person suffering from infertility can feel - as if a part of them could potentially always be missing. There is a sense of grief. Infertility can also lead in some cases to mental illness – this is a well known fact from time immemorial.

If people are suffering, shouldn’t we be understanding and sympathetic? If the up-and-coming athlete suddenly has a fatal injury that means he can’t run in the Olympics, we would feel for that person and not tell them to ‘just get over it’. While we can’t all have the ambition of running in the Olympics, it is very natural for the majority of us to have the ambition of having a family of our own one day. Therefore, being potentially denied something which is taken as one of the natural and defining events in life, will affect a person to their core.

A dismissive reaction to infertility, however, can be very typical of many people in society.

Religious arguments are sometimes put forward. Religious thinking such as the Catholic Church sees any form of intervention, be it even for the creation of life, as a sin, as they view infertility as a sign from God that the person should look to an alternative in their lives.

Political and financial considerations can influence a person’s thinking on the topic: In the United Kingdom where there is a National Health Service (‘NHS’) (there is a monthly deduction from salaries to contribute to the national healthcare pot), there have been many objections along similar lines to those in the USA saying that insurance companies should not cover fertility treatments because it is not an illness. People react negatively because they do not want to see their monies being spent against fertility treatments when they would rather see it spent against saving lives which they consider more relevant to them. In economic terms what is the opportunity cost of spending on infertility? This is a very subjective evaluation.

There is a general lack of awareness of infertility as an issue: A large amount of the reaction that the man in the street has to infertility comes from the fact that it is not something that people talk about openly. Therefore the man in the street may not actually know what it actually feels like. Or be aware of how common it is. One in eight people in the USA is dealing with infertility. Infertility comes in many forms – PCOS, endometriosis, advancing age, low sperm count, sperm antibodies, miscarriages etc. These are all debilitating to a couple trying to start a family, and sadly conditions that they generally only learn about when they join the infertility world, and not before. So the person who has never been affected by fertility issues, or known someone affected by it, is definitely not going to know about it.

Even if the man in the street knows someone with fertility issues, it is a difficult topic to grapple with emotionally, and it is easier to turn the other cheek or to think of something else. Although it is time to change and bring discussing fertility issues out of the closet.

Human nature cannot be under-estimated: It is human nature for people to make quick judgments on a topic without questioning further as to whether they have all the information, considered all the angles and the legitimacy of the sources. This is even more the case in today’s world which is very much driven by people focusing on the headline and punch-line in a fast paced media environment.

A good example of this is when you read the online comments section on newspaper articles. You will see comments telling people going through infertility treatment to stop being selfish and to just adopt one of the needy children in the world. What people, however, do not realize is what struggles those people have gone through already and what the entire adoption process entails – it is not easy. The numbers of children available for local adoption, happily, are far less than they used to be. International adoption can be an expensive process. The adoption process is long and intrusive. In some cases you are required to maintain contact with the birth relatives (it can be direct or indirect contact). These are all things which the individuals have to come to terms with. Until you walk in another man’s shoes, it is easy to make off the cuff comments.

What would these people say if you told them that instead of having a second or third child, they should adopt and play back their own arguments to them – feed an existing needy or hungry child as opposed to bring another into the world? From an environmental footprint perspective it is said that families should seek to have less children. May be they should have had one less child or even have elected to have no biological children.

It is a different world today to before: My mother recently told me that she had a conversation with my aunt along the lines of ‘what is wrong with the world? Why is there so much more of this today than before?’ This was a very interesting comment. For one, people probably didn’t go to the doctor in those days for such things and just got on with life and accepted their fate as there was nothing to be done. So it was not considered something relevant to discuss, or was swept under the carpet. If we could go back in time with the knowledge we have today I think we would be surprised, for example, at the level of miscarriages occurring.

In today’s world it is a fact that your son or daughter is likely to have children later in life than before. The delayed timing of the child rearing years isn’t necessarily out of choice.

In today’s world it can take many years to meet Mr. or Mrs. Right.

We have created a society where many people spend much of their young lives in secondary and tertiary education in order to gain access to an average to decent job. In years gone by, often that same level job would not have required today’s level of advance study. This, therefore, involves personal debt and more years before young people are able to afford a home for a family.

The cost of housing is expensive and takes a far greater percentage of a person’s salary than it used to, so it can take people many more years to get on the property ladder and be able to put a roof to put over their children’s heads, as they feel responsible parents should do.

Parents today often want to live their own lives once their children are grown up. This means that even if they can, they may be less likely to offer to help their children financially or with childcare. Children know they need to find a way to pay their way on their own, which translates into a delay in child-rearing years. There are those parents, of course, who would love to be able to help their children but cannot do so financially, or due to poor health. And even if parents are willing to help with childcare, they may live far away from their children because their children have had to move to where the work was.

Take even only one of these factors, and you have the lives of many young adults today delaying when they start to try for a family, not out of choice but because it has taken them longer to find their ‘mate’ and build their ‘nest’. And consequently these couples end up with an increased risk of infertility issues. Which can come as an even harder blow to them when they see all their efforts into building that ‘nest’ could be redundant in terms of having biological children.

We need to remind people that we have a collective responsibility for the type of society that we live in today, and the fertility challenges that those of child-bearing age experience today. It isn’t all of somebody else’s making, and nothing to do with them. The person suffering infertility could well be themselves or their son or daughter.

Fertility may not be an illness as we understand the word ordinarily. It isn’t going to kill you physically necessarily. But it is, without doubt, a medical condition with a much higher level of incidence today than it should have and one which people should be supportive of. It can have a very serious and permanent effect on people mentally, made worse by the complications of growing up in today’s world. In November 2009, the World Health Organization in Geneva defined infertility as a disease, which is a great step in allowing people to validate the suffering that many are experiencing and people are ignoring. And people are starting to stand up and make a voice for their message to be heard – two good recent examples are the What IF: A portrait of infertility Video which won an award for promoting fertility awareness with a call for grassroots advocacy and the SELF Magazine Article on Breaking the Silence on Infertility. The man in the street should understand that the increased incidence of infertility is a modern day phenomenon not to be ignored. If people want to see less of this ‘medical condition’, they need to stop being critical or unsupportive. They need to start doing, taking part, speaking to their children and family about this important topic and helping to change society so that we are more supportive and encouraging to young couples. They need to support research aimed at reducing infertility, and funding to help those who need assistance.

Medical condition or not, without doubt, it is an ‘illness’ of our modern world. And it is in our hands whether to change this or not in an enlightened way. Not anybody else’s.

Tuesday, August 24, 2010

Royal College of General Practitioners - their reply to letter

Below is the response from the Royal College of General Practitioners who were similarly approached for improved education on the topic of fertility awareness.

Truth be told I find it frustrating that they take this 'we are aware and have it under control' approach to the issue, when clearly they do not. See my reply to their response below also:

--------------------------------------------------------------------------------
From: Hon. Sec
Sent: Tue, 24 August, 2010 5:39:52
Subject: RE: Letter to Royal College of General Practitioners


Thank you for your letter sent to the Royal College of General Practitioners on 18th August 2010, the content of which has been duly noted. The College does have these issues in our MRCGP curriculum and we appreciate their importance.

Yours sincerely,


Professor Amanda Howe
Honorary Secretary
Royal College of General Practitioners

THE REPLY BACK SAME DAY:

Dear Professor Howe,


Thank you for your reply. While I see that you say that these issues are on the MRCGP curriculum, which is encouraging, from experience as a patient I am able to tell you that the information is not being passed on by GPs in the manner that perhaps you expect or anticipate.

Therefore, my recommendation to you would be to re-visit the teaching of those modules and to issue memoranda to practising general practitioners as to the importance of their pro-activity in this area. Reinforcement of the point as part of GP's continuing professional development training would also be recommended.





Wednesday, August 18, 2010

NHS Choices - reply from the NHS information website

In reply to the letter to the NHS Choices Team in the UK, here is what was received on 18 August 2010:

Thanks for your recent email on NHS Choices fertility content. We aim with this content to provide a balanced and useful introduction to fertility and issues around it.

The fertility content in Live Well is due to be reviewed soon, and I certainly will be mindful of your view that we could do more to highlight the fact that fertility declines with age.

It is not, however, in the power of us at NHS Choices to tell GPs how to practice, so we won't be able to ensure that GPs talk to women about this issue when prescribing the pill.

Thanks for reading NHS Choices.

Kind Regards

NHS Choices Team

AND THE REPLY TO THEM:

Thank you for the reply. Yes the point is to advice people as to how fertility declines with age, but also of the issues affecting fertility that can arise - e.g. endometriosis, polyps, PCOS etc - these can occur earlier and women are very unaware that such conditions exist unless they have had problems or start to try for a family.

Education of all fertility issues is key. Not just addressing infertility when it is already a problem but upfront prevention and detection. Early awareness is key to mitigating the risk and managing problems in an effective manner.

Monday, August 16, 2010

Reply from MPs to Department of Health

Below is the reply from the MPs to the Department of Health.


First up, it is disappointing in that they seem to miss the point that it is also about fertility awareness - they focus on the infertility aspect which makes me fear they continue to miss the point. The reply in other respects is very plain vanilla standard. Non-committal and a simple acknowledgement of the communication.


Is there more that can be done? Yes. We need to continue lobbying. Which is where you all come in. Watch out for the petition which will be circulating shortly. And for right now, a response will be sent to make clear that the point is not just dealing with infertility but fertility awareness - making us more aware of our own biology in advance, so we are properly informed and be pro-active in the steps we take to mitigate the risk.


Bottom-line, the situation is not going to improve - only worsen - with more and more cuts. And with headlines such as this, saying that in the UK if you are unhealthy (e.g. a smoker, or overweight) that you may be denied healthcare in the future, the point becomes all the more relevant. http://uk.news.yahoo.com/4/20100816/tuk-unhealthy-brits-could-be-denied-free-dba1618.html.

Therefore, doing nothing is not an option.


REPLY FROM DEPARTMENT OF HEALTH


Thank you for your emails of 16 July and 22 July to Andrew Lansley, Simon Burns, Paul Burstow and Anne Milton about infertility. I have been asked to reply.

I should explain that, due to the quantity of correspondence received by the Department, it is not possible for Ministers to reply to all letters and emails personally.

In addition to my colleague's previous replies, I can confirm that the Department was interested to read your suggestions and that policy officials are aware of them. However, while the Department is grateful for any submissions from members of the public, it is not possible to guarantee that policy officials will be in a position to enter into dialogue regarding such submissions.

I hope this reply is helpful.

Yours sincerely,

Jonathan Tringham
Customer Service Centre
Department of Health

Tuesday, August 10, 2010

Letter to Department of Education -as sent today

Attention: see attached for distribution list

Date: 10 August 2010

Dear Sirs and Madam

Improving education and awareness on fertility issues

This letter is written to you regarding the serious lack of information and education amongst men and women on the topic of fertility issues and infertility awareness. It affects every couple of child-bearing age. One category particularly at risk is working women. You receive this today in your capacity as MP and office-holder of the Department of Education at the recommendation of the Human Fertilisation & Embryology Authority to enlist your attention and support. This will also be shared with many other relevant bodies, and a letter in similar terms has also been written to the Department of Health.

There is little information readily available to young men and women to inform them of the types of fertility challenges they may face in life: for example, that male infertility relates to one third of cases, the risk of declining fertility with age - the risk of not starting to try for a family in a woman's early thirties at the latest, if they can help it (other issues can prevent this, such as health or lack of a stable relationship).

Fertility information is predominantly on infertility websites that a young person is not likely to turn to as a port of call. Information on the web can be incorrect, misleading or lack the full facts - and yet people place a large, albeit misplaced, reliance on these sources. Doctors and nurses do not talk to their patients on these topics necessarily to ensure they are correctly informed. The media creates a twisted and incorrect perception of the issues often, because it focuses more on sensationalist headlines as opposed to reliable, balanced and well researched reporting. In today's fast paced world, people rely too much on sound-bites and headlines for information. Friends and families can be reluctant to talk on these topics, even if they are well informed, out of fear of offending and not wanting to interfere. It is tragic that out of fear people do not even take the step to ask if someone would like children, and less still be sure that the person knows what they need to know, when they need to know or point them in the direction of getting the right information. Sadly, a lot of stigma still remains around discussing issues of fertility and infertility.

There is a crisis occurring, therefore, in the developed nations of our modern times. Fertility education and infertility awareness is an issue relevant to men as much as women, and something they need to be aware of in good time - which means before they decide to start for a family, as otherwise it may be too late for them to make the correct and informed decisions for their lives.

You may not appreciate the severity of the issue. We would, therefore, like to refer you to the following resources for information:

www.fertilityandage.blogspot.com - promoting fertility awareness & education.
http://www.vimeo.com/11214833 - video promoting infertility awareness
http://www.self.com/health/2010/08/breaking-the-silence-on-infertility?currentPage=1 - article exploring why infertility awareness is still where cancer was 10/20 years ago
http://hannahweptsarahlaughed.blogspot.com/ - infertility advocate from the United States

There is a lot that can be done to alleviate the trauma that many couples are experiencing today in the United Kingdom. Women in their thirties and forties are saying: why are we still treated as teenagers even in our thirties and older when we go for a pill check? Why do so many of us not know the hard facts? Why do those 'in the know' not share? Why isn't this taught in schools and universities?

Educationists along with the medical profession itself can do much to improve the situation with a little effort and at a relatively modest cost. You will see some suggestions in www.fertilityandage.blogspot.com:

1) Improve education at schools making it more than a teenage pregnancy focus. Continue this into university so that young adults are aware;
2) improve education of GPs on this topic;
3) make it a requirement that fertility conversations are had with women at pill checks and pap smears;
4) encourage doctors generally to have conversation with patients in their 20's and 30's - they will need guidance on how to do this correctly and sensitively;
5) produce booklets on the topic made available to men and women in their 20's and 30's;
6) work with the health officials of companies to promote awareness amongst their staff; and
7) promotion of fertility awareness days nationally.

Government is coming under much criticism for spending on IVF. Sadly to an extent Government has allowed the problem to exacerbate. It does not do enough to address up front prevention - seeking to reduce the avoidable cases of infertility. It is not that modern couples do not listen; it is that they are not being given the correct facts to be able to make better and more informed decisions.

If prevention and education was a greater focus area, we would eventually see a drop in infertility rates which would in turn translate into more money in the public coffers and less cases of IVF treatments being needed. People do not know what they do not know and it is very hard for them to make good and wise life choices with respect to when to start trying for a family if they really don't fully understand the risks. There will always be a need for IVF, but at least it will have been controlled to those that really needed it, and will stop this becoming an escalating issue.

In the same way as once upon a time we used to think it was fine to smoke and drink while pregnant, and now know the consequences of doing this, with improved education on fertility we can similarly make inroads to reduce cases of infertility. The Department of Education, as well as the Department of Health, are excellently placed to lead with this, as they have the power to influence change and the gravitas to speak with authority on the topic and bring about much needed improvements. This is a topic that, unfortunately, too many people shy away from discussing in our modern world and which in turn is letting down our sons and daughters. The Department of Education cannot rely on friends and families to have these conversations because they aren’t always happening.

The goal is simple: reducing the avoidable cases of infertility and that correct education becomes just part of each young adult's knowledge tapestry so that they do not have unpleasant surprises later in life. Let's help people move to a world where we reduce these avoidable cases of infertility requiring treatment and of women who are unintentionally childless - which ironically tends to be the better educated echelons of society.

Please work to bring about this change!


DISTRIBUTION LIST


ministers@education.gsi.gov.uk;
Rt Honorable Michael Gove MP, Secretary of State for Education - govem@parliament.uk;
Nick Gibb MP, Minister of State for Schools - gibbn@parliament.uk;
Sarah Teather MP, Minister of State for Children and Families - teathers@parliament.uk;
Tim Loughton MP, Parliamentary Under-Secretary of State for Children and Families -oughtont@parliament.uk;
sthhollanddeepings@btopenworld.com;
John Hayes MP, Minister of State for Further Education, Skills and Lifelong Learning -hayesj@parliament.uk;

Friday, August 6, 2010

Improving education and awareness - letter to Ministers

As some may know, I wrote to the UK Department of Health lobbying for improved education and awareness on (in)fertility issues, and copied the letter also to several fertility organisations. The HFEA has suggested that I also write to the UK Department of Education, so am about to do that. But here is what I am thinking: to do a petition along the following lines, which is pretty much the text of my letter to Ministers. So get ready for the link to be posted soon and take the pledge the support:

We, the undersigned ....

…feel strongly that there is a serious lack of information and education amongst men and women on the topic of fertility issues and infertility awareness. It affects every couple of child-bearing age. One category particularly at risk is working women. You receive this today in your capacity as MP and office-holder of the Department of Health or Education to enlist your attention and support. This will also be shared with many other relevant bodies.

There is little information readily available to young men and women to inform them of the types of fertility challenges they may face in life: for example, that male infertility relates to one third of cases, the risk of declining fertility with age - the risk of not starting to try for a family in a woman's early thirties at the latest, if they can help it (other issues can prevent this, such as health or lack of a stable relationship).

Fertility information is predominantly on infertility websites that a young person is not likely to turn to as a port of call. Information on the web can be incorrect, misleading or lack the full facts - and yet people place a large, albeit misplaced, reliance on these sources. Doctors and nurses do not talk to their patients on these topics necessarily to ensure they are correctly informed. The media creates a twisted and incorrect perception of the issues often, because it focuses more on sensationalist headlines as opposed to reliable, balanced and well researched reporting. In today's fast paced world, people rely too much on sound-bites and headlines for information. Friends and families can be reluctant to talk on these topics, even if they are well informed, out of fear of offending and not wanting to interfere. It is tragic that out of fear people do not even take the step to ask if someone would like children, and less still be sure that the person knows what they need to know, when they need to know or point them in the direction of getting the right information. Sadly, a lot of stigma still remains around discussing issues of fertility and infertility.

There is a crisis occurring, therefore, in the developed nations of our modern times. Fertility education and infertility awareness is an issue relevant to men as much as women, and something they need to be aware of in good time - which means before they decide to start for a family, as otherwise it may be too late for them to make the correct and informed decisions for their lives.

You may not appreciate the severity of the issue. We would, therefore, like to refer you to the following resources for information:

www.fertilityandage.blogspot.com - promoting fertility awareness & education.
http://www.vimeo.com/11214833 - video promoting infertility awareness
http://www.self.com/health/2010/08/breaking-the-silence-on-infertility?currentPage=1 - article exploring why infertility awareness is still where cancer was 10/20 years ago
http://hannahweptsarahlaughed.blogspot.com/ - infertility advocate from the United States

There is a lot that can be done to alleviate the trauma that many couples are experiencing today in the United Kingdom. Women in their thirties and forties are saying: why are we still treated as teenagers even in our thirties and older when we go for a pill check? Why do so many of us not know the hard facts? Why do those 'in the know' not share?

The medical profession and educationists themselves can do much to improve the situation with a little effort and at a relatively modest cost. You will see some suggestions in www.fertilityandage.blogspot.com:

1) Improve education at schools making it more than a teenage pregnancy focus;
2) improve education of GPs on this topic;
3) make it a requirement that fertility conversations are had with women at pill checks and pap smears;
4) encourage doctors generally to have conversation with patients in their 20's and 30's - they will need guidance on how to do this correctly and sensitively;
5) produce booklets on the topic made available to men and women in their 20's and 30's;
6) work with the health officials of companies to promote awareness amongst their staff; and
7) promotion of fertility awareness days nationally.

The NHS in the UK is coming under much criticism for spending on IVF. Sadly to an extent the NHS has allowed the problem to exacerbate. It does not do enough to address up front prevention - seeking to reduce the avoidable cases of infertility. It is not that modern couples do not listen; it is that they are not being given the correct facts to be able to make better and more informed decisions.

If prevention and education was a greater focus area, we would eventually see a drop in infertility rates which would in turn translate into more money in the public coffers and less cases of IVF treatments being needed. People do not know what they do not know and it is very hard for them to make good and wise life choices with respect to when to start trying for a family if they really don't fully understand the risks. There will always be a need for IVF, but at least it will have been controlled to those that really needed it, and will stop this becoming an escalating issue.

In the same way as once upon a time we used to think it was fine to smoke and drink while pregnant, and now know the consequences of doing this, with improved education on fertility we can similarly make inroads to reduce cases of infertility. The medical profession, the Department of Health and the Department of Education are excellently placed to lead with this, as they have the gravitas to speak with authority on the topic and change public perception of it. A topic that, unfortunately, too many people shy away from discussing in our modern world and which in turn is letting down our sons and daughters. Government cannot rely on friends and families to have these conversations because they aren’t always happening.

Our goal is simple: reducing the avoidable cases of infertility and that correct education becomes just part of each young adult's knowledge tapestry so that they do not have unpleasant surprises later in life. Let's help people move to a world where we reduce these avoidable cases of infertility requiring treatment and of women who are unintentionally childless - which ironically can be the better educated echelons of society.

Please work to bring about this change!