While the country is bedecked in pink for National Breast Cancer Awareness Month, I hope you will take a moment to consider that October is also National Pregnancy and Infant Loss Awareness Month (per a 1988 decree by President Reagan).
- “12.29% of women born today will be diagnosed with cancer of the breast at some time during their lifetime.” (National Cancer Institute)
- “For [healthy] women in their childbearing years, the chances of having a miscarriage… is about a 15-20% chance.” (American Pregnancy Association)
- “More than 25,000 babies are stillborn in the United States each year.” (First Candle)
- “Each year in the United States, about 4,000 infants die suddenly of no immediately obvious cause.” (CDC)
Every October, we find a huge outpouring of support for breast cancer awareness, from races to pink ribbons at ever unlikely place you can think of. That’s great, really great. Hopefully the message of the importance of breast self exams and regular screenings is getting across (such as the Early Detection Plan). Part of me fears it’s more about selling merchandise than the public health message but we have to take the bad with the good.
What bothers me is that, even though pregnancy and infant loss (PAIL) affects as many if not more women (and children) than breast cancer, we see little recognition of pregnancy and infant loss. The public health messages associated with PAIL (such as See Me, Feel Me or Safe to Sleep) are certainly as important as the public health message of early detection of breast cancer. Stillbirth is the largest cause of death in all children under age 14 (and miscarriage rates are even higher).
Despite its devastating effects, PAIL remains hidden – a silent epidemic. Few are willing to speak up about a child that died, or their struggles with recurrent miscarriage. Yet each day that we allow PAIL to be hidden, it means that the grand majority of women don’t know the ways stillbirth and SIDS can be prevented. Just as importantly, it means that women continue to be isolated, thinking they are alone (we are not alone – even celebrities and famous women can experience miscarriage or stillbirth). Thankfully the internet has made it much easier for loss moms to contact each other in forums and Facebook Groups and to express ourselves through blogs and social media – but that doesn’t help when you’re pregnant and you suddenly learn that your baby has no heartbeat and it’s too late to get any prevention information. Or when you buy all the adorable bedding for the crib and don’t find out until it’s too late that that it can suffocate your baby.
While the lack of awareness bothers me, what bothers me even more (both as a loss mom and as a scientist) is the disparity in research dollars. In 2010, 2011, and 2012, the National Cancer Institute spent 631.2, 625.1, and 602.7 million dollars respectively. This does not include all of the money spent by other organizations on breast cancer research, and does not include money spent on breast cancer awareness. The research has been a great success, as 98% of all women who are diagnosed with breast cancer will go on to live a full and healthy lifespan.
Compare this to the amount of research dollars spent on stillbirth – 3 million in 2012. Even when we look specifically at cancers affecting children, the disparity in research funding compared to the number of families affected is shocking.
Breast cancer awareness is great if it means more women are getting screened, but it’s just as important to spread awareness of pregnancy and infant loss.