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How many people have infertility?  

Posted by: Barbara Collura at July 8, 2014 
Category: Infertility Advocacy 

1 in 8 couples have trouble getting pregnant or sustaining a pregnancy.
(Source: CDC, National Survey of Family Growth, 2006-2010.)

How many people in the U.S. have infertility? Simple question, right? Well, it’s not so simple.  Each day we get asked this question by the media, our volunteers and advocates, legislators and others and we want to be sure what RESOLVE is stating is not only correct, but verifiable. So we’ve evaluated the statistics available from reliable sources and want to break them down for you. Before we do that, we want you to think about something as you read this article: How can the infertility community challenge our government to do better for people with infertility? How do we boil all the statistical jargon into a sound bite that works for legislators, the media, and the general public so it helps advance our cause?  And can we please all decide on what infertility really is? If the stats and the definitions are not consistent among our government agencies and the non-profits within the community, how can we fight for the rights of people with this disease?

Read more about how RESOLVE breaks down these complicated stats so we can move the important issues of the infertility community forward.

Source of the data: First and foremost, the source of the data must be credible and verifiable. Ideally the source is a government entity or a source that has been compiling the same data in the same manner year after year. The National Survey of Family Growth (NSFG) was created in 1973 and has been conducted seven times since then. The NSFG gathers information on family life, marriage and divorce, pregnancy, infertility, use of contraception, and men's and women's health. The survey results are used by the U.S. Department of Health and Human Services and others to plan health services and health education programs, and to do statistical studies of families, fertility, and health. The NSFG is administered by the National Center of Health Statistics, which became part of the CDC in the 1980’s. To the best of our knowledge, this is the only data collected in the U.S. that captures the number of people living with infertility. RESOLVE, along with many other professional groups and the CDC, decided many years ago to use the data from the NSFG in our communications since it is the most credible data source out there. While the NSFG has its limitations and is complicated for many to understand, it is the data we are currently using.

Definition of Infertility: In order to give the stats meaning and effectively communicate them to the public we must first make sure the stats match the definition of infertility. What is the definition of infertility? Turns out not everyone uses the same one.

The American Society for Reproductive Medicine (ASRM) says that infertility is “a disease, defined by the failure to achieve a successful pregnancy after 12 months or more of appropriate, timed unprotected intercourse or therapeutic donor insemination.” It goes on to say that earlier evaluation is warranted after 6 months in women over 35 years. The ASRM does not define recurrent pregnancy loss (two or more miscarriages or stillbirths) as infertility.

The World Health Organization says that infertility is “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 NSFG reports two different datasets when they report on infertility.  First, it defines infertility as “When neither the respondent nor her current husband or cohabiting partner is surgically sterile, a woman is defined as infertile at time of interview if, during the previous 12 months or longer, she and her husband or partner were continuously married or cohabiting, were sexually active each month, had not used contraception, and had not become pregnant.”

Then the NSFG uses a second term called Fecundity or Impaired Fecundity which “describes the physical ability (or with impaired, the inability) of a woman to have a child and not simply to conceive a pregnancy. This measure is defined for all women, regardless of their relationship status.” The key differences between “infertility” and “impaired fecundity” is that one (infertility) is generally published only based on married or cohabitating women and is limited to problems getting pregnant, and the other (impaired fecundity) is for all women and includes the inability to carry a pregnancy to a live birth.

Given these two definitions, RESOLVE has chosen to use the statistics associated with impaired fecundity as we believe that definition is more in line with what the general public views as “infertility” – a woman who can’t get pregnant or who can’t carry a pregnancy to term. The NSFG does include one measure of male infertility and it shows that 12% of men aged 25-44 experience some form of infertility.

Date/Timeframe: When was the data collected? The most recent data from the NSFG was analyzed and published in 2013, but it is based on data collected from 2006-2010. Prior to this, the last dataset we had was from 2002, so more recent figures were definitely needed. At this pace, the data on infertility is analyzed on a very inconsistent schedule.

Infertility Services: The NSFG also looks at how many people use infertility services.  This report examines the types of services that a woman or man accessed in their lifetime, including medical advice, testing, medications, and IVF. The data based on the 2006-2010 survey showed that 12% of women aged 15-44 had ever used infertility services in their lifetime. That is 1 in 8 women.

What about other stats? A question we get a lot is “I thought I read that the number of infertile is 1 in 6 couples – why doesn’t RESOLVE use that number?” This number came from a study conducted by researchers at the National Institutes of Health in 2012-2013 which was picked up by the media and quoted widely. For this study, they relied on the same data from the NSFG (though they used the older 2002 data) and employed a different statistical method called “current duration approach.” It basically looks at the answers to the question, “How long have you been trying to get pregnant?” The NIH researchers stated in their study that to their knowledge, “the incidence of infertility in the U.S. is unknown.” They felt that the NSFG definition of infertility to only include married women was too narrow, and the changing sociodemographic data (number of unmarried women, delayed childbearing, etc.) impacts the magnitude and scope of infertility, which older datasets may not take into consideration. When they applied the “current duration approach” methodology, the prevalence of infertility went way up – from 7.0% from the NSFG data to 15.5% (or 1 in 6 couples).

As the authors noted, this study was the “first application of the current duration design for estimating infertility” in U.S. women. It is not the method the CDC is using to determine the number of infertile at this time, but it is worth seeing if it gains authority in the future. Since it is not yet widely adopted as the superior measure of the prevalence of infertility, RESOLVE is not using the “1 in 6 couples” statistic at this time.

Call to Action: If these statistics seem confusing, there is silver lining! A few years ago RESOLVE participated in a meeting at CDC to discuss the need for an “Action Plan” on infertility. In fact, RESOLVE worked hard to get Congress to tell CDC to prioritize and create this “National Action Plan.” The Action Plan has been drafted and was released on July 16, 2014. The Plan calls for the need for a clear definition of infertility and better data on the prevalence of infertility in the U.S. Let’s hope the National Action Plan serves as a call to action for the entire community as well as the CDC.

The Statistics: So when you want to help raise awareness about infertility, we want you to have the facts. Drum roll please…
1 in 8 couples have trouble getting pregnant or sustaining a pregnancy.

More stats to use:

  • 1 in 8, or 7.4 million, women of reproductive age have received help for infertility in their lifetime.
  • 12% of married women have trouble getting pregnant or sustaining pregnancy. 

Additional Resources:

Author’s Note: Many thanks to Lee Rubin Collins and Erin Kramer for their contributions to this blog.

 

 

 

 

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