May 18, 2011

I Beg to Differ, Max: Infertility is NOT a Social Condition

I saw a curious tweet on Thursday last week from @maxpemberton in my infertility feed on Hoot Suite: @randomtwitteruser It's about IVF and infertility funding in the NHS *gulp* So I clicked to see the conversation and this was the tweet that preceded it:
So when I saw his Telegraph column pop up in my infertility news Google Alert, Infertility is distressing, says Max Pemberton, but it’s a condition the NHS can ill-afford to treat, I of course clicked over to take a read. Boy howdy, I was not prepared for what I read. The crux of Mr. Pemberton's article is that the NHS (the UK's National Health Service) should stop funding all IVF procedures. He goes on then to list the justifications for this argument. His column starts out cautiously, almost tip-toeing towards his argument: "...I thought long and hard about the reaction it [this column] would provoke... It is not my intention to add to people’s grief."

It isn't long though before Mr. Pemberton drops all the nicities and goes for the jugular (emphasis mine):
But is this something that is really a medical problem? Some sociologists argue that the inability to have children is actually a social condition that has been recast as a disease. Society places an expectation on individuals to reproduce and become parents and so childlessness is a status that does not readily fit within society’s cultural norms. Pathologising and categorising it as an 'illness’ is a way of managing this difference from the norm.
*record scratch*

I'm sorry, did you just say my disease is a social condition? Excuse me while I pick my jaw up off the floor.

Besides using 20-year old sociology research as the basis of this particular argument, it's just plain wrong. Despite the World Health Organization's classfication of infertility as disease in late 2009, Mr. Pemberton is of the opinion that infertility is merely a social condition and that parenting is a desire, not a right. He goes on (again, emphasis mine):
While childlessness is distressing, it is not associated with long-term disability, morbidity or mortality. It is not a disease. Rather, it is about people unable to have something that they want. This is not what the NHS is there to remedy.
Mr. Pemberton - Max, can I call you Max? Considering I conversed with you for nearly an hour on Twitter Monday? Right, so...

Max - You've missed the mark on so many levels. Let me break it down for you:

Infertility is NOT a social condition. In our little Twitter tete-a-tete, Max shared with me a study from 1992 by Becker & Nachtigall titled, Eager for medicalisation: the social production of infertility as a disease. If you click over for the PDF, it's a doozy of a study. So I took a read and was dismayed to learn that not only was their interview sample size only 43 couples, but the interviews were conducted in 1984. So the data was nearly a decade old by the time this study was released. Not only that, but seeing as how much infertility treatment and ART have advanced even in just the last decade alone, I can't imagine the gap in treatment advancement in practice between 1984 and 1992. And then there's the bigger issue of using a nearly 20-year old study with 30-year old data (and nearly verbatim from the abstract, I might add) to gauge a medical issue that has undergone radical advancement in the last 20 years.

Infertility IS a global public health crisis. In the United States, infertility is estimated to affect 1 in 8 couples. In the UK, that estimate stands at 1 in 7. In Canada? Try 1 in 6. Globally, in developing countries? The World Health Organization estimates that "1 in 4 ever-married women of reproductive age in most developing countries are infertile because of primary or secondary infertility." [Source.] Infertility is highly treatable, with as many as 80% of patients able to be successfully treated. And yet, in the United States, it's a highly treatable disease that is most routinely denied coverage. Why would you advocate for your country to strip away that same coverage? Socialized healthcare or otherwise, at least the NHS recognizes that infertility is a public health need and provides appropriate coverage.

Infertility IS a quality of life issue. While infertility in general may not be life-threatening, it is life-altering. Regardless of whether it's male or female factor, there exists a disfunction of basic human reproductive capacity. Considering that procreation is perhaps one of the strongest driving biological instincts aside from self-preservation, the inability to conceive or carry a pregnancy to term then disrupts a basic life function. A myriad of other medical issues can then result, most notably mental health consequences. To suddenly take away a benefit or to somehow say a disease is not worthy of treatment only further compounds the impact on an infertility patient's quality of life.

Sadly, many of the Letters in today's Telegraph agreed with Mr. Pemberton's opinion. The fact of the matter is, it's easy to throw the infertility patients under the bus. We're an easy target because so many people see parenting as a lifestyle choice.

But you know what Max?

I didn't choose this. I didn't choose to be unable to have my own children. I didn't choose this disease.

And neither did the 3.5 million people infertility affects in the UK.



UPDATE: This post was selected as a 2011 BlogHer Voice of the Year in the Perspectives category. I am deeply honored and humbled to have been recognized in a field of truly outstanding submissions and bloggers. Please take a moment to click the link and read the posts from the other honorees.

35 comments:

JL said...

Bravo!

Kim said...

You tell him, Keiko! I wish I had your amazing ability to write like that. To basically "shove it" but so nicely and professionally.

Max, you're a moron... and if you ever choose to procreate and it doesn't happen easily for you, we'll be here to pick your ass up and provide support.

Whitney Anderson said...

Good job. I just tweeted him and RT'ed your message.

Mommy-In-Waiting said...

You go Girl! Max-You are an idiot.

Jackie said...

According to webster.com, disability is "lack of adequate power, strength, or physical or mental ability." Maybe some might think I'm stretching a bit here, but a lack of ability to reproduce could fit that. After all, when something comes easily for the "average" person, and doesn't come easily to you, isn't that a disability? Don't we take someone who struggles to read and diagnose them with a learning disability? So if we're struggling to reproduce, don't we in a sense have a reproductive disability? And, well, if his definition of disease is something that can be associated with disability, morbidity, or mortality, then don't we fit?
For most of us, there's something wrong with our/our partner's reproductive organs. That sounds like more than just a "status that does not readily fit within society's norms." That sounds like a medical condition to me.
But there is something I do agree with. Childlessness in and of itself isn't the disease. No, childlessness IS a social condition. The INABILITY TO HAVE A CHILD, however, is a disease. You can't throw the terms around like they're interchangable.
Sorry for the rant. This article really got to me. Thanks for posting!

Sushigirl said...

Good post, but - on a purely factual point - the NHS is UK-wide rather than just English.

The Telegraph is a pile of steaming shite as a whole though. I came across an article a while ago saying it was perfectly acceptable for stag dos to encourage sex tourism in Eastern Europe because essentially, those former commies should be jolly grateful they're getting any business at all.

It's crap that they're picking on IF patients, but as a paper it seems to have a problem with anyone who isn't a white English middle class man!

Esperanza said...

Well said. I'm always impressed with your ability to handle these kinds of people so rationally and even eloquently. I would be slinging mud all over the place but you state our case so thoughtfully and without the malice that would make it unreadable for people who really need to hear it. Thank you.

TeamBabyCEO said...

This jerk doesn't deserve two things: to be called a Doctor (he is a child psychiatrist, btw), nor a response.

As we say in the south, what a Dumas. French pronunciation.

NancyPants said...

Keiko, Thank you for such a well written and thoughtful response. After reading such drivel and getting so worked up, I don't think I could have been so classy as you.

Kristin said...

You tell him!

I am continually impressed with your eloquence when dealing with infuriating people.

Jasmine said...

Following Max's logic, then, Viagra and any other "erectile dysfunction" drugs should also not be covered.

Christie said...

Well said, Keiko, well said.

Christie said...

Well said, Keiko, well said.

Melissa N. said...

This guy has no freaking clue. None. You are so right, Keiko, we did not ask for this. Infertility is a disease, plain and simple - what about the people who become clinically depressed as a result of their childlessness? Are my ovaries supposed to have cysts on them that are affecting my health {hello insulin resistance}? Last I checked, PCOS puts women at a higher risk for certain cancers. Childlessness may not be a disease but the medical complications behind the childlessness certainly are. What an idiot.

Kat said...

I usually lurk but time to post:

Sushigirl has hit the nail on the head. The Telegraph is one of the worst newspapers for this kind of nonsense. I generally ignore everything that it written in it.

The point that the NHS can't afford IVF is valid, because the NHS can't afford lots of things. That's why we have a 'postcode lottery' in the UK, where people in some regions get different treatment than others living 2 miles away. Most regions only fund 1 or 2 cycles as it is.

If you want to read reasonable British journalism on this issue go over to The Guardian 'family' section which in the last week has had well argued articles about waiting too long, and the emotional impact of egg donation.

Megan said...

Keiko, your point about clarifying childlessness as social condition vs. reproductive disability as a disease is phenomenal. So very true, and like so many of your fellow readers I applaud your eloquence and grace in your attempt to enlighten this guy. Bravo!

Jeani said...

I loved how he said since it has nothing to do with morbitity nor mortality. Actually in some cases, it does. I suffer from endo, and have a friend whose endo almost killed her. The endo tied her intestine in knots. Max, do your homework into the disease of infertility. Infertility is the broad spectrum title, just like there are many different cancers and many other diseases that are classified under one heading.

Purplefroglet said...

It's the Daily Telegraph, if they had it their way the NHS wouldn't exist, or at least would just run accident and emergency services (i.e. the part which can't make any profit if it was run privately). They'll make any excuse to do the NHS down, unfortunately in this case they've decided to make the point through infertility (in one particularly impressive case a few years ago I saw a columnist argue against the NHS funding wheelchairs - in case the recipient was faking it). Urgh, it drives me up the wall!

Ashley said...

This is why you're my hero, give em hell girl!

Cherish said...

My jaw also dropped as I read this. I'm sitting here mumbling, "Excuse me" in an enraged tone. I try to forgive a lot of dumb comments people say because they just don't know any better about IF, but this is beyond belief.

aliciamarie911 said...

I can NOT believe that someone had the guts to write that in public, or at all for that matter! It *excuse my language* pisses me off that he would even say that. You're right! We DIDN'T choose this disease. We DIDN'T wake up one day and say, "oh, I think I'll put cysts all over my ovaries so that I can't have kids! NO!

Kerrik said...

Well said!

I have to wonder, as a child psychiatrist, what actually qualifies Max Pemberton to say ANYTHING on the subject of infertility.

Keiko said...

Jackie, you raise an EXCELLENT distinction: Childlessness is a social condition. Infertility is a disease.

Keiko said...

Sushigirl - thanks for the catch on England vs. UK. Sorry, my American is showing ;)

Keiko said...

Jasmine - I actually hashed this out with him on Twitter. He agrees, but the interesting thing was that he wrote about infertility and IVF b/c it's more newsworthy over Viagra & ED.

Keiko said...

Jeanie & Kat - excellent points about the potential for morbidity and mortality. Even my own diagnosis, POF/POI - if left untreated w/o HRT, POI patients can have shorter life expectancy. Scary stuff indeed.

Dawn Marie said...

I'm with Jasmine, and of course you made a beautiful argument, where I would have just wanted to wring his neck. Maybe one day he will find out first hand what it is like to not have a choice. I have found that those types seem to learn the hard way how wrong they were.

*Mandie* said...

Wow, Max is a straight-up idiot. I wish I had more eloquent words at the moment, but after my 50 millionth appointment to treat my PCOS (which is a syndrome that the medical community recognizes, Max!); I'm a little more than tired at the moment.

My infertility is NOT a social disorder! It comes from a syndrome I have which messes up my hormones and makes it nearly impossible for me to ovulate without the help of expensive medications and monitoring.

My life has been completely altered by this disease. If there is anything "social" about it, it's that it has in many ways made it hard for me to lead a normal life - you try having doctor appointments every three to four days and see if your life doesn't get socially disrupted too.

This is the kind of ignorance that just blows my mind. We HAVE to stop complete morons like Max Pemberton from spewing idiocy like this to the millions. We HAVE to stop the spread of heinous misinformation and ancient research. THANK YOU for stepping up for ALL of us and letting people like Max Pemberton know they are just plain stupid.

Anonymous said...

Well, this is an interesting article. Thanks for posting it.

He could have written exactly the same thing for e.g. cleft palate. "While cleft palate is distressing, it is not associated with long-term disability, morbidity or mortality" (it actually does cause disability in some cases, but not in all). So why does the NHS pay for surgery for children born with this "abnormalitiy / natural variation / social condition" (however you want to call it) ?

The question is not so much if we define something as a "disease". You can cast the web wide or small for this definition. In order to do a proper job of arguing his point, he whould need to put out a whole set of conditions the NHS pays for. And then do a thorough analysis what he thinks a community should pay for or not.

A condition that affects 1 out of 8couples ? A condition that results in missing out on so many children, that should have been here but will not make it if we do not pay for them as a community ? All those children, that will also end up paying HIS pension later on ?

How much is spent in tax incentives to increase birth rates in countries like Italy, Germany, France etc. ? I know that this is not the US perspective, but in my home country you get at least 640$ per month during the first year of your child in child education payments (Erziehungs- und Kindergeld). Up to 60% of your former wages, if you worked before having children. So, this is at least half an IVF cycle per child - during his/her first year of life. This is because children are VALUABLE for society. Especially for shrinking populations that want to keep up with pension payments.

If he is unwilling to treat infertiliy out of compassion, or because he does not think it qualifies as a disease, maybe he should sit down and do the calculations. What is an IVF round compared to a lifetime of social security/medicare/NHS contributions of the resulting child ?

Hey, and people that go through treatments to have children, really WANT them. They will likely do a better job at educating fine adults than the average. 1/8 more responsible adults 20 years from now ? Bring them on!

Sorry for the long anonymous rant. I do not have a Google account and usually do not leave comments, but his short-sightedness kind of upset me.

And I wrote this rant because I feel that this argument often is missing in discussions about infertility. Treating infertility is not a one-sided favour. The couples receiving the treatment give something back to the community. They will raise children (hopefully). Raising a child (a consumer, a pension payer, a responsible voter) is worth MUCH more than the cost of an IVF cycle. Society should cover infertility treatments for its own good.

Pensive Pixi said...
This comment has been removed by the author.
Pensive Pixi said...

Totally agree.

He seems to be implying that as infertility is not life threatening, it is not as important. That those who can't conceive should just accept that it's a natural condition.

Well, by that logic, people who develop cancer should just accept it as a "natural" condition - their body telling them they shouldn't live any longer. Should they be denied treatment too?

What about people with serious burns scars or phobias, or amputees? They're definitely not life threatening conditions, so probably shouldn't receive any NHS funding either. In fact, Max should be out of a job, because I'm fairly sure child psychiatry isn't normally associated with "long-term disability, morbidity or mortality".

It's baffling that so many consider the prolonging of life more important than creating new life. And then when we get people to live longer they get shoved in a nursing home and treated appallingly.

Pjjam said...

Well done.

Max seems to have his issues combined when he shouldn't.

There are two separate things here that he doesn't seem to have the intelligence to separate.

The first is whether infertility is a disease. As an IF I am with the WHO - for us this was caused by injury, for others illness or unexplained bad luck. It is not a social disorder.

The other issue is whether the NHS should pay. I'm British and living in NZ and I'm waiting for IVF public funding. I would love for everyone to have access to free treatment, but we live in the real world. Some health authorities don't fund the best cancer treatments and people die as a result. Other authorities don't fund IVF. Others don't invest in new dialysis machines.

For Max to feel the need to discredit the disease in order to defend the idea that IVF shouldn't be funded shows immaturity and a lack of skill in writing discussion pieces. Having read some of his other Telegraph articles, he appears to have a very childish style. Maybe he should work on his SHO career and leave journalism alone for a few years.

I'm dismayed but unsurprised that Torygraph/Telegraph readers support Max's opinions and express those further to the right.

Well argued on your part - thank you

Mummy said...

Excellent blog Keiko, and what an idjit he is!
Years ago when I liven in the UK I read a travel review in the Telegraph about Denmark (my home country) stating e.g. that the Danes feed their kids on hotdogs. Errr? No more than the French feed their kids on frogs legs or the Germans theirs on Sauerkraut. Infuriating.

This really take that up a couple of notches!

Equally infuriating: in Germany (where I now live) IVF works on the 'blame' culture. Approx half of IVF cost is paid by the health insurance of the partner whose fault it is. The other approx half is paid by the couple them selves. Seriously, FAULT? Wouldn't we all be breaking up as couples if we were to consider this a matter of blame or fault?

Thanks for an awesome blog. Please drop by mine, too
Www.bigsisnathalie.blogspot.com

Anne xx

Alec said...

I'm reminded of a film where a journalist admits that it sells more papers when he is negative. That supporting something is where a journalist actually takes a risk. This fellow isn't horrific, just a little spineless.

Nonetheless, it's our job to push back, every time we see or hear this sort of rhetoric. Well done!

Pissed Off Patient said...

Well, if he is going to go there...

No Viagra then, buddy.

M