Breakdown the Infertility Stats and Data   

In the patient advocacy health space, data is KING. Knowing who has a particular disease or condition, knowing how people receive medical care, and knowing the outcomes of that medical care are standard data points for anyone who works in the healthcare field.  Just imagine for a moment if we had no idea how many people are diagnosed with breast cancer each year, how many people die from strokes, or how prevalent Alzheimers’ disease is.  Without this data, we would not have funding for medical research, advances in testing and diagnosis, public health awareness campaigns, or breakthroughs in treatment and cures. I think we can all agree that stats and data is key to so many areas of healthcare. 

As a patient advocacy organization, RESOLVE uses data from trusted sources, and we dig deep into the data to understand how it was collected and what exactly it represents.  For infertility prevalence data in the U.S., our source is the National Survey of Family Growth (NSFG) which is administered by the National Center for Health Statistics at the CDC.  The NSFG “gathers information on pregnancy and births, marriage and cohabitation, infertility, use of contraception, family life, and general reproduction health.”  While the survey is fielded every year, the National Center for Health Statistics reports on key findings every few years.  The most recent data that we care about was collected in 2015-2019 and was posted online in November 2021.  I will share what data the NSFG reports on, and which data points RESOLVE will be using and why.   

But before I do that, a very important announcement was made in early April 2023 by the World Health Organization (WHO). For the first time in 10 years, the WHO released data showing that 1 in 6 people globally are affected by infertility in their lifetime. The definition of infertility they use is: 

Infertility is a disease of the male or female reproductive system, defined by the failure to achieve a pregnancy after 12 months or more of regular unprotected sexual intercourse. 

The WHO stat of 1 in 6 was the result of analyzing studies and surveys from 1990-2021 from across the globe. They had to first analyze mountains of data, find a common definition, then extrapolate the global impact. The Director General of the WHO stated: “The sheer proportion of people affected show the need to widen access to fertility care and ensure this issue is no longer sidelined in health research and policy, so that safe, effective, and affordable ways to attain parenthood are available for those who seek it.”   

Now let’s go back to the data from the NSFG and drill down to what is happening in the United States.  The NSFG reports on 3 areas that are important to our community: 

• Impaired Fecundity
• Infertility 
• Infertility Services 

It’s so important to understand the definitions of each of these 3 data points, which is what we have done at RESOLVE. 

Let’s start with the “Infertility” dataset. On the face of it, this would be the data point that we care about the most.  However, in the NSFG survey, the definition of Infertility is based only on women who are married to men.  Infertility is defined as no pregnancy after at least 12 months of unprotected sexual intercourse with their current husband. The survey asks married women if they have had unprotected sexual intercourse with their husband in the past 12 months, and then asks if they got pregnant.  If they answer “Yes” to sex and “No” to getting pregnant, they fit the “Infertility” definition. The Survey does not ask if the respondents are trying to get pregnant. Given that this definition is only capturing married women and the definition is not adequate, we have chosen at RESOLVE to not use the “Infertility” data set. For the 2015-2019 data, the percentage of “currently married childless women” aged 15-49 who fit the definition of “Infertility” in the NSFG is 19.4%, or 1 in 5 currently married childless women. Again, RESOLVE will not be using this stat. 

We then looked at “Infertility Services.” The definition is someone who has ever received infertility services; “services” can include medical help to get pregnant or to prevent pregnancy loss, and things like advice, tests on the woman or man, ovulation drugs, artificial insemination, IVF or other ART, and other services.  The survey respondents are women of unknown marital status, as well as childless women.  Given this broad definition and dataset, at RESOLVE we have decided not to use this dataset either. For the 2015-2019 data, the percentage of women (unknown marital status) aged 15-49 who have ever received any infertility service is 12.2%, or 1 in 8. Again, RESOLVE will not be using this stat. 

The last dataset is “Impaired Fecundity”, a term that most of us are not familiar with. What does it even mean?  Impaired Fecundity means it is difficult or impossible to get pregnant or someone has problems carrying a pregnancy to term. The dataset is all women, regardless of marital status. This dataset is more closely aligned with our community and what we think of as “infertility”, therefore, RESOLVE is using this statistic. According to the 2017-2019 data, 13.4% of all women aged 15-49, or, 1 in 7 women, have impaired fecundity. Has this changed? The most recent data before the 2015-2019 data was from 2011-2015 and the number was 1 in 8 women. But I caution you to not jump to the conclusion that impaired fecundity is now more prevalent, because in 2015, the NSFG increased the age range from 15-44 to 15-49. We just don’t know how adding women aged 46-49 impacted the data.  We have noticed that some other people have chosen to also use the Impaired Fecundity data, but to use the specific stat from 2015-2019 for “currently married childless women” with impaired fecundity; this stat is 26% of married childless women aged 15-49, or 1 in 4 married women. Given this covers only married women, RESOLVE will not be using this stat. 

I think it is important to stress that RESOLVE doesn’t “love” either the WHO stat or the NSFG stats for our community. There are too many people that are left out of these data points. We need a common definition across the globe and need to collect data that is meaningful.  Given that the CDC and WHO are globally recognized public health leaders, we will use this data until we have something better from another verified source. The good news is the WHO agrees with RESOLVE, saying this in their press release announcing the 1 in 6 stat: 

While the new report shows convincing evidence of the high global prevalence of infertility, it highlights a persistent lack of data in many countries and some regions. It calls for greater availability of national data on infertility disaggregated by age and by cause to help with quantifying infertility, as well as knowing who needs fertility care and how risks can be reduced. 

Well said, WHO! 

As I close, I want to share how RESOLVE will be using the WHO and CDC data. Drum roll please! 

While 1 in 6 people globally are impacted by infertility,  

1 in 7 women in the U.S., age 15-49, have trouble getting pregnant or sustaining a pregnancy. 

Be part of this conversation. Share this content or something you’ve learned from it with your networks.  

Content provided by: Barbara Collura, President/CEO for RESOLVE

Sources: 

National Survey of Family Growth: https://www.cdc.gov/nchs/nsfg/keystatistics.htm#i  

World Health Organization Press Release: https://www.who.int/news/item/04-04-2023-1-in-6-people-globally-affected-by-infertility 

WHO Report: https://apps.who.int/iris/bitstream/handle/10665/366700/9789240068315-eng.pdf