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World Health Organization Defines Infertility as a Disease

a blog by Pamela Tsigdinos, Feb. 2, 2010

Barren. Unfruitful. Infertile.

These words offers up many shades of gray, don’t they? They certainly did for me, in particular, "infertile." I still remember the first time I saw the term in a brochure in an OB-Gyn office. I was much more naïve and younger then. My brain didn’t know how to process it -- going from “what’s that?” to “oh, not me!”

In time, I became embarrassed and shamed by the word. It wasn’t discussed openly. It was whispered about. Accordingly, I felt guilty about it. Condemned by it.

Society seemed most comfortable keeping the word shrouded in stigma. Until one day -- that being November 30, 2009 -- it was brought out of the closet. Held up under a different light and with the stroke of a pen it moved from a shadowy term with judgment hanging in the balance to an altogether new category:

Infertility = Disease

Yes, it was on November 30 -- just a few short months ago -- when the World Health Organization stepped forward to declare for the very first time that infertility is a disease.

This development didn’t make the newspapers or prime time. It was only in doing some research that I tripped over a press release that apparently got no press attention at all.

Here’s the press release headline, and an excerpt:

WHO Releases Glossary of Terminology in Assisted Reproduction, Defines Infertility as a Disease

The World Health Organization (WHO) and the International Committee for Monitoring Assisted Reproductive Technologies released a new international glossary of ART terminology. Appearing simultaneously in the journals Fertility and Sterility and Human Reproduction, the glossary is an important step towards developing common nomenclature and understanding in assisted reproduction.

Significantly the glossary defines infertility itself as “a disease of the reproductive system defined by the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse.”

The WHO's recognition of infertility as a disease represents a significant milestone for the condition.

As strange as it sounds, my heart raced a bit as I read the announcement. That thing that managed to turn my life upside down wasn’t some self-inflicted, shadowly illegitimate thing. It is a bona fide DISEASE!

William Gibbons, MD, President of the American Society for Reproductive Medicine (ASRM) took the words right out of my mouth with this statement:

“For too long those suffering from infertility have had their condition slighted or even ignored. Insurance companies don’t pay to treat it, governments don’t put adequate resources to study it and consequently patients suffer. We hope that this international recognition that infertility is, in fact, a disease will allow it to be treated like other diseases.”

With such a proclamation, we move that much closer to a new generation of women and men getting respect and help to fight a disease that has too long been overlooked and that now affects, according to a joint WHO-DHS Comparative Report in 2004 -- based on data evaluated up to mid- 2002 -- one in four married women of reproductive age in most developing countries.

I have all new respect for semantics.

If you trying to conceive and haven't yet seen a fertility doctor, feel free to use our free fertility doctor directory, or contact us directly for a clinic recommendation.

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Comments

Dear Pamela, I have been

Permalink Submitted by Andie on Mon, 02/08/2010 - 9:32pm

Dear Pamela, I have been following your blog since reading about you in the NYT. I have been carefully following your thoughts for a couple of years and seeing where you go with your blog. Since I am also a Bay Area resident, I feel like I confront the same "sights" and "scenes" you describe, especially about young mothers in strollers and kids everywhere in our parks, sports fields, etc. I enjoy the complex issues you raise, your ability to articulate difficult emotions and the way you navigate controversial issues. But lady, I have a bone to pick with you. While every one of your readers has been overwhelmingly supportive and sensitive towards you, you have turned your infertility into an endless elegy of "what might have been." I understand that it hurts you and will likely hurt you until the day you die. I understand your life is very empty because a huge part of it will never materialize. I get it. I get the fact that you'll die without having your child bring you grandchildren. I get that you won't be able to buy little socks for your kids or their kids. You won't ever have Mother's Day and your husband won't have Father's Day. You don't need to have presents under Christmas tree for your kids. You don't need to sign anyone up for Little League or get to bring home your kids' artwork from school. I get it. But I also get that you are inflexible on this issue whereas other people have found ways to enjoy motherhood. Your reaction to surrogacy or adoption or anything? "It didn't feel right" or you "wanted to watch your baby grow in you and deliver it." Lady, you have made it IMPOSSIBLE to share or criticize your decision. You have turned anyone who says an innocent thing to you about kids into a rant on etiquette. You have refused to hear out anyone who suffered from infertility and moved on. You have dealt with your problem in such a way that you leave no option on the table. Your blog CAN'T grow past the sadness of the issue and you won't let it. You make everyone sound like ignorant fools who don't know you or your problems. Apparently, you are going down with the ship (which is you) and you'll be damned if anyone tries to criticize you or misunderstand you. I'm not saying you made the wrong decision. But enough with the "might have been." You somehow think motherhood is something so joyful that every mother pities you for not having kids. Apparently, you've never encountered a mother of kids with medical issues who second guesses it all. You've never dealt with autistic kids, depressed kids, obese kids, terminally ill kids, and finally perfectly healthy kids who drop out of school, turn to drugs, alcohol or sex, or turn to suicide. If you are stuck on the milestones of parenthood, you are also completely naive on real parenthood which is accepting major disappointment and pain. It pisses me off that you never really took up adoption or surrogacy. It tells me you don't know shit about kids. You only think of kids in terms of the experience of womanhood and parenthood. Have you ever volunteered at a youth center? Tried to act as a mentor? I've never seen anything in your blog that shows you have real life experience with kids on a one-on-one basis. You just kind of dance around the subject of real kids like it's so painful you start crying and "there Pamela goes." It raises a red flag - you are pretty much determined to do it your way or no way at all. If this is your decision, that's fine. But to go on a rant about people who are "insensitive" to infertility is beyond ridiculous. Someone should face you down - it's about time someone slaps you in the face and tells you to stop the hysteria. Society shouldn't have to bend backwards to understand everyone's personal problems. In fact, society has bent backward to accept any decision you make, whether it's to remain childless or use an alternative route. If anything, we (society) are overly accommodating to your demands to be heard and supported. Pamela, being childless is a choice now. You may not have gotten the whole kids-by-thirty,grandma-by-60 life you wanted, but you could have filled your life with children anyways. You didn't have to spin into overdrive. Andie

Andie, I don't think it's

Permalink Submitted by Community_Claire on Tue, 02/09/2010 - 6:47am

Andie, I don't think it's cool to assume that any of us know what someone else needs to do to resolve her infertility or to criticize any woman for not being at the place WE have decided she should be. Here on our site we SUPPORT each other and if we can't understand where someone else is? If we want to roll our eyes? We keep our mouths shut because it is NOT HELPFUL to condemn someone for not living up to standards we've set for ourselves. We are all of us doing the best that we can. Also Pamela has done a wonderful job of supporting the infertility community through her writing -- her book and her blogs. As a matter of fact, other visitors have nominated her blog to be featured next week! So we know what a great job she's doing to help other visitors to our site. Finally there is no "just adopt" or "just be a surrogate" to resolve infertility. Those are huge huge huge steps that not only create our motherhood but also visit a specific parenting experience on our KIDS. If that's not what we want to do, then it's a valid choice NOT to. It's a valid choice to continue trying even when other people want us to get over it. Sincerely, Claire ------ Need help with our site? Contact me at claire@fertilityauthority.com. I'm happy to help!

I get what Andie is saying.

Permalink Submitted by Suzee on Sun, 07/17/2011 - 2:06pm

I get what Andie is saying. At some point you have to make peace with not only the infertility, but also the decisions you make in regard to what to do about. If god/the universe/your body has a decided that you won't have a baby through the traditional route, then at some point, you move on. Life goes on. Will pamela be fifty years old and writing heartfelt, sincere blogs about how she isn't a mother? Pamela is at risk of losing herself if she can't make peace with moving on. She has a grief process to tackle and perhaps her blogs could reflect that part of her infertify process... Moving on and grieving for what she isn't going to have and then gradually looking forward to the life she can make for herself. We have to overcome our issues in life. I think Andie was expressing concern for Pamela's seemingly inability to switch gears into "o.k I'm not going to have kids, so what do I like, who am I and where do I want to go from here." Suzee

There is a drawback in

Permalink Submitted by brook on Thu, 08/18/2011 - 10:34am

There is a drawback in defining infertility as a disease based solely on "the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse". A lot of insurance plans do not cover fertility treatments, which are often being extended to include any infertility-related diagnostic procedures. So if a woman goes to a doctor for not being able to conceive for more than 1 year, the insurance company or HMO can deny to cover any tests or services aiming at finding out why the woman is infertile. However, infertility is also a symptom of other illness, such as ovarian cancer. The denial of coverage based on infertiltiy being defined as a disease would trump the importance of treating infertility as a symptom of other more serious illness and therefore have negative consequences on women's health in general.

Wish I'd found this when

Permalink Submitted by Tatacalimera on Tue, 08/23/2011 - 8:08pm

Wish I'd found this when written. I know the lovely Pamela IRL and I can tell you that the OP is spot on. Ms. Mahoney cut me out of her life once I finally got pregnant after several years of ART. She's a piece of work, no doubt. I have come to believe it's for the best this woman did not have children. If this is how she handles trauma, I shudder to think how she would handle the challenges of raising another human being. In the meantime, I'm sure Pamela will keep sawing on her victim violin. Those of us who know better won't be listening.

I am glad to stumbly across

Permalink Submitted by Rachel on Fri, 09/16/2011 - 5:42pm

I am glad to stumbly across this blog. I was asked in school to complete a research paper on a controversial issue. I chose Infertility. This has been a struggle for me for over 10 years. PCOS - which is very treatable with birth control. Also very easy to acheive pregnancy with the right treatment. But NOT COVERED. I am not feeling the need to reproduce many children. One or two is fine. How did the state of CA pay for Octo Mom? I can't wait to begin educating myself on this Women's Issue. And begin to advocate for it.

Infertility is clearly NOT a disease!

Permalink Submitted by PASWIM on Sat, 12/17/2011 - 12:36pm

It is totally outrageous to define a natural order of things as a disease. Do you really think that every female on the face of the planet should get pregnant? NO: otherwise this world would be so overpopulated that our earth wouldn't be able to sustain life. If you believe in ecology, evolution, biology, science and well documented facts, PREGNANCY IS NOT A BIOLOGICAL RIGHT NOR SHOULD IT BE. Why do you think physicians prey on women who are desperate to have a baby? MONEY. They don't care about helping people. They care about MONEY. There is a natural and normal part of being unable to have children. "Survival of the Fittest" states that only the strongest survive. This horrible technology only puts many couples in severe financial distress and NEVER GUARANTEES A PREGNANCY OR EVEN A BABY IF IT GETS TO TERM. Furthermore, why should I have to pay for a 45 year old female go through egg donation only to deliver a baby prematurely due to massive complications as a result of her age as this baby ends up with severe problems in the NICU?? This should not fall on society to pay for this nor should it ever be warranted under any situation. If a woman decides on her own accord to wait to have a baby, ( age greater than 40 ), that is her fault. That is not mine and not the insurance companies responsibility! There are no signs and symtpoms of infertility other than couples being sad that they cannot conceive. That is not a symptom; that is a normal response to a difficult issue. The treatment, therefore, should not be ART. Rather it should be adoption or simply seeing a counselor or psychologist. If the female or male becomes severely depressed or psychotic, then that should be the disease that needs to be treated! But to place infertility ( 628.9 ) as a diagnostic code on an encounter form for insurance to reimburse is totally outrageous. IT IS NOT A DISEASE.

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World Health Organization Defines Infertility as a Disease