Yesterday I shared some reasons why moms can’t get help for postpartum depression or anxiety. Or depression or anxiety during pregnancy. Or postpartum psychosis or bipolar disorder. And trust me, so many can’t. Today I want to talk about maternal mental health, and why there’s so little investment in the most common complication of childbirth.
The other day I did some quick back of the napkin research. Bear with me, because I really want you to follow along.
There are 1,000 new cases of Cystic fibrosis each year in the US. In 2013 the Cystic Fibrosis Foundation’s revenue was $405 million.
There are 10,000 new cases of multiple sclerosis each year (in men and women) in the US. In 2013 the National Multiple Sclerosis Society’s revenue was $123 million.
There are 16,000 new cases of lupus each year (in men and women) in the US. In 2013, the Lupus Foundation’s revenue was $17 million.
There are 50,000 new cases of HIV infection each year (in men and women) in the US. The AIDS Healthcare Foundation’s revenue in 2014 was $879 million.
There are 60,000 new cases of Parkinson’s disease diagnosed each year (in men and women) in the US. In 2013 the Parkinson’s Disease Foundation’s revenue was $10 million.
There are 150,000 new cases of epilepsy each year (in men and women) in the US. In 2013 the Epilepsy Foundation’s revenue was $15 million.
There are 221,000 new cases of lung cancer each year (in men and women) in the US. In 2014 the American Lung Association’s revenue was $55 million.
There are 230,000 new cases of breast cancer each year in the US. In 2013, the Susan G. Komen Foundation’s revenue was $325 million.
There are 475,000 new cases of Alzheimer’s disease each year (in men and women) in the US. In 2013-14, the Alzheimer’s Foundation’s revenue was $135 million.
There are at minimum 500,000 new cases of postpartum depression each year in the US among women alone. This number only takes into account women who experience live births, and not those who suffer depression after a perinatal loss such as miscarriage. This is an illness which, when untreated, can have a lifetime of consequences for exposed children. And yet there is not a single nonprofit organization dedicated to maternal mental health disorders in America that I’m aware of, including my own, that has annual revenues as high as $500,000. That’s less than a dollar a mom.
Is that a failing of ours? Partially. I’m very new to the whole nonprofit thing, and I’m learning every day. I know I need to tell the maternal mental health story better. I know Postpartum Progress is making an impact, and we’re working to make sure we have the data to show it. I know we need to get in front of more people, and to recruit the involvement of every person who has ever been affected by these illnesses. We need women, business leaders and policy makers to understand that the lack of awareness and treatment for perinatal mood and anxiety disorders is a HUGE public health issue for women and families. It’s leading to a lot of downstream health problems that could be prevented in the first place.
But I also think the lack of investment is an implied endorsement of the stigma of maternal mental illness. I think companies and other potential funders shy away from PPD. I don’t think people want to accept that new moms might be miserably unhappy, scared and sick, despite the fact that 1 in 7 of us are (or 1 in 4 in high poverty areas). I was once told that most of the companies in the ad network this website was part of didn’t want their ads to appear here because they didn’t want to touch PPD “with a ten-foot pole.” It felt like being punched in the gut … I’m one of the “untouchables” they’re so afraid of. What’s interesting about this is that awareness and treatment for PPD can be a very good story. A great story, in fact. We aren’t searching for a cure. We know how to fix it. We know how to talk to women in a way that makes sense to them and makes it safer to reach out for help. We know what works and what doesn’t. Trained providers know how to treat them. This is something you don’t have to hope you can accomplish if someone could just make that eureka discovery. You CAN accomplish it. Now. Today.
And it’s not just the stigma, which is wrong and ridiculous in this day and age, but I also think people look at all those other illnesses I listed above and think, “But no one dies from PPD, so …” That’s simply not true. Suicide is the second leading cause of death in the first year postpartum. And who knows how many attempts there are. We’re just lucky, if you could call it that, that women happen to be three times more likely to make an unsuccessful attempt at suicide than men.
The illnesses and diseases I listed above are serious, and the people who have them need and deserve every cent of the millions of dollars being spent to raise awareness, provide services and support and conduct research. No question. But when you look at the incidence of these illnesses and then you look at the number of new cases of PPD each year and you know how few get treated and you know how much this affects families, don’t you begin to wonder why the inequity?
I know I do.
Data Sources:
- https://www.womenshealth.gov/publications/our-publications/fact-sheet/lupus.html
- http://www.cdc.gov/hiv/statistics/basics.html
- http://www.pdf.org/en/parkinson_statistics
- http://www.epilepsy.com/learn/epilepsy-statistics
- http://www.lung.org/lung-disease/lung-cancer/resources/facts-figures/lung-cancer-fact-sheet.html
- http://multiplesclerosis.net/what-is-ms/statistics/
- https://www.alz.org/facts/downloads/facts_figures_2015.pdf
- https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/
- http://www.breastcancer.org/symptoms/understand_bc/statistics
Photo credit: ©marine0014/Fotolia
I want to know what we can do as individuals to help raise money. I know the climb out of the darkness does that but what else can we do to help? I would live to donate what I can to help and I am sure my friends and family would also.
Thank you for asking, Yvonne. Climb Out of the Darkness is our signature annual event, yes. But we also have moms who hold bake sales or garage sales and send us the proceeds. They ask restaurants to have a special night where they donate a percentage of proceeds to Postpartum Progress. There are people who donate throughout the year on our donation page here: http://postpartumprogress.org/donate-postpartum-depression-2/ There are people who simply introduce us to others who they know might be able to help. There are lots of ways to provide support.
I also purchase all my items from Amazon through Amazon Smile and they donate a portion of every purchase to Postpartum Progress. Anything helps!
This is stunning; a call to arms. Thank you for sharing this information.
I think for one, calling it “Maternal Mental Health” as you have here sounds less scary and re-frames things a bit. I think it’s more accessible, although we shouldn’t really have to hide this issue. But that’s the reality.
This makes me sad, but mad too. It is certainly a call to arm. Speaking from my PR background, I almost wonder if there’s a bit of a PR stunt here. Could we issue a challenge for organizations and individuals to support maternal mental health? A hashtag campaign like #ISupportMaternalMentalHealth or #WeSupportMaternalMentalHealth (and of course funding). I know the May Campaign has done some good messaging in this regard, e.g. #MomsMatter, but I think there’s opportunity to really challenge people to step up to the plate.
Great way to show how under supported PPD is and how a call for action is needed!! You cannot not deny the numbers!!! Thank you Katherine!!
Thanks for posting Katherine! You put together those back of the napkin numbers is such a compelling way. 100% agree with you on the stigma issue. While the budget of the Los Angeles County Perinatal Mental Health Task Force will be approaching the $1m mark this year, we have experienced the same stigma when raising money for this cause. Our support comes mostly from foundations who understand the link between a mother’s mental health and future outcomes for the child. But in terms of fundraising from other sources, we have experienced the same challenges – corporations in particular don’t want to associate themselves with the issue. On Tuesday next week we will be rebranding ourselves as Maternal Mental Health NOW – issuing an urgent call to action for families, providers and policy makers to create a system of care in LA County through increased capacity to identify and treat perinatal mood and anxiety disorders, increased access to care and stigma reduction. Let’s continue to work together to raise awareness on the national level.