1. Provide the title of your story or series and the names of the journalists involved.
"This Woman Has A Secret: Breaking the Silence on Infertility" by Jennifer Wolff Perrine.
2. List date(s) this work was published or aired.
SELF Magazine, August 2010.
3. Provide a brief synopsis of the story or stories, including any significant findings.
One in eight American couples will experience infertility, and more than a million women undergo treatment for it every year. Yet this remarkably common medical condition is a silent epidemic: Women and their partners often conceal their fertility issues from their closest friends and even their family — nearly two-thirds of those who seek treatment admit to doing so in secret. And the consequences of secrecy — the shame, the sense of failure and humiliation — wreak havoc on infertile couples, especially those who fail to conceive. "This woman has a secret" details the vastness of the infertility industry and explains the consequences of its ongoing secrecy: without openness, there is little financial or political support for research that can improve couples' chances of conception, and a lack of emotional support structures that can salve the consequences of an expensive and emotionally wrenching medical process. Major Findings: " 1.1 million American women undergo fertility treatment each year, and 12 percent of couples will experience fertility problems. " Despite the impact such a process can have on women and their partners, just 5 percent of patients make use of psychological support services, and more than 60 percent admit that they undergo fertility treatments in secret. " Unlike other major health issues, there is no political movement dedicated to improving the fertility landscape. Indeed, fertility patients often wind up divided into two camps — those who succeeded and want to put the experience behind them, and those who failed and may live in quiet shame. " Insurance companies refuse to cover infertility, classifying as an elective procedure akin to cosmetic surgery. " While other health issues, from breast cancer to AIDS, have high-profile advocacy groups, infertility remains shrouded in shame. The Catholic church has even denounced fertility treatments as sinful. " 57% of IVF cycles fail. " Women who have trouble getting pregnant can be as depressed as cancer and heart disease patients. " Pregnancy rates at one clinic increased after several mind/body sessions helped ease depression and anxiety.
4. Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
Both the CDC and RESOLVE sent me drafts of the National Action Plan to address the infertility epidemic in this country. Through footnotes on this document I was able to access obscure but pertinent government-funded research on the impact of various environmental factors on infertility. Dozens of studies on infertility itself, the psychological impact of infertility, the impact of infertility of marriages and personal relationships, and the behaviors of infertility patients. The Vatican's Dignitas Personae. Senate and House bills, including various versions of the Family Building act, focusing on infertility. Also state bills attempting to restrict various infertility procedures. Dozens of infertility message boards and blogs. Data was culled from the CDC, various IVF centers, and pharma studies.
5. Explain types of human sources used.
Some of the nation's leading infertility doctors. Several psychologists specializing in infertility. Various reproductive health experts at the CDC. Members of Congress (Sen. Kristin Gillibrand and Rep. Debbie Wasserman Shultz) who support infertility issues and are helping with various bills to aid patients. An array of advocates including RESOLVE's Barb Collura and Fertile Hope's Lindsey Beck. Most significantly, I spoke with dozens of infertility patients culled through RESOLVE, Pharma companies and Internet message boards. Even though most people who use IVF do not succeed during any given cycle, generally I was introduced to IVF patients who had met with success. But success was not the point of this story; Silence was the point. And the more people fail at infertility treatments, the quieter they become. Thus, I was looking for patients who had failed at infertility and hadn't told their friends or family that they were even trying to build a family — a tall order indeed. Taller still was my request on IVFConnections.com for such a patient who would then let me follow her through her next cycle. That's how I came upon "Lisa and Jack," the only people who responded to that particular request.
6. Results (if any).
The article got readers talking in a national conversation. They posted more than 350 comments at Self.com and our partner, MSNBC.com; wrote at least 30 blog posts; linked to 2,365 Facebook profiles; and made 150 tweets. Each of these comments was read by the staff of the women's health and fertility branch of the division of reproductive health at the Centers for Disease Control and Prevention, who asked Self.com to assist them in gathering public comment for an upcoming National Action Plan on infertility. RESOLVE, a national nonprofit infertility-patient organization, was so impressed with the story, it launched a campaign to promote women with infertility to read it and sign a pledge to become more vocal and involved to ensure that people with infertility get the funding and quality of care they deserve. 500 RESOLVE members took that pledge, about 15% of visitors to the site. "The article is one of a kind," says Barbara Collura, executive director of RESOLVE. "We're doing everything we can to get it widely read and get people talking about it. That's the most important first step," she says. According to Barb Collura, volunteer inquiries tripled in the weeks following publication, "inundating RESOLVE staffers with email and phone requests for opportunities to help raise awareness about infertility. And exponentially more patients (current and former) are actually following through."
7. Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
No.
8. Advice to other journalists planning a similar story or project.
I had a unique perspective into the world of infertility because I am a former infertility patient. I know what it's like to try and to fail. I know what it's like to feel so demeaned that I no longer want to speak. I know what it's like to lie to family members about what procedures I was having and how much they cost because I was so ashamed to never being able to succeed. I also know what it's like to try to talk to people and have them be incredibly insensitive and say cruel and stupid things. It's very important for journalists to approach a subject such as infertility with compassion. One way to do that is to learn the language of infertility before interviewing patients. Understand what various hormones are measured, and what those measurements mean. Also, understand the procedures, and what they mean. Infertility treatment is in no way natural or beautiful — it is horrifically clinical and patients appreciate when others understand the clinical terms without having to once again explain or teach them. Be careful how you speak to infertility patients about your own family. Unsuccessful patients loved knowing that I had seven failed IVF treatments, but their tones and expressions changed when they learned I now had a toddler. Only talk about your own children if they ask. Don't pretend to understand how they feel if you actually don't understand how they feel.