This week, April 20 -26 is National Infertility Awareness Week®. In 1989, RESOLVE: The National Infertility Association founded National Infertility Awareness Week. In the 25 years since then, technology has evolved and the Internet has emerged. Medical advances have been made and there is now a wealth of information about infertility, medical treatments, alternative treatments, support groups, blogs about fertility, social media -- you name it -- all available online. In recognition of the 25th anniversary of National Infertility Awareness Week (NIAW), RESOLVE reached out to experts in the field to get their opinions about what has, and hasn't, changed for people with infertility in the past 25 years.
Public Awareness About Infertility
RESOLVE: Do you think the media has a positive influence on infertility awareness?
Infertility awareness has increased, due in part to the media and pop culture.
"There is a lot more attention in the media -- infertility has become a topic of interest. It gets people's attention. You also see movies and TV shows that address infertility as part of the storyline, that kind of thing. I am glad to see the increase in media attention about the widespread problem of infertility around the world. However, we still have a long way to go in raising awareness and enabling women to feel comfortable sharing their fertility experiences. The more we encourage the public to understand and also talk about their reproductive health, the better it will be for patients and their families who are struggling with infertility." - Michelle Dipp, MD, PhD, CEO and Founder, OvaScience
"I think one of the things is that the media really likes to see the drama and they like to see the happy ending. I think in some ways we do a disservice when we always tie it into a pretty package where everybody has a kid and they end up happily ever after. Because it doesn't always end up like that. They still need to work through their resolution if they are not able to biologically have a child. And so, I think that is one of the things I would like to see more of; that an infertility journey does not always end up with a biological child but that people can still find ways to make peace with the experience and to live a happy life. I'd like to see more in the media about pregnancy loss, about repeated miscarriages, and what happens when you lose a baby and how you go on." - Sharon N. Covington, MSW, LCSW-C, Director, Psychological Support Services, Shady Grove Fertility Reproductive Science Center
"In general, infertility is now a subject that can be talked about. But when I came into the field there was lots of secrecy around the subject of infertility. People would even keep their infertility from their relatives. I remember several patients who came in from out of town to keep the word about their infertility from spreading in their community. Now infertility is a subject that is talked about, people are more open about it, and more knowledgeable. It makes it easier for people to reach a diagnosis because they are more willing to go to their doctor - and know that they should." - Howard W. Jones, Jr., MD, Professor Emeritus, Eastern Virginia Medical School; Professor Emeritus, Johns Hopkins University School of Medicine
Infertility and Public Policy
RESOLVE: One of the biggest advances for RESOLVE in the past 25 years is our work in public policy and infertility legislation. How has public policy and legislation had an impact on infertility awareness?
"Advocating for change in legislation remains difficult. Societal norms have changed dramatically over the past 25 years and legislation is lagging dreadfully behind. In a state like New York which passed the Marriage Equality Act, it still has punitive legislation relating to surrogacy. As a co-drafter of the New York Child Parent Security Act, which provides for compensated surrogacy and brings needed reforms to New York parenting law, I have firsthand knowledge of the struggles one faces to educate the lawmakers about the subject matter and to erase the myths associated with surrogacy and those who participate in third party reproduction." - Laurie B. Goldheim, Esq., President-Elect of the American Academy of Adoption Attorneys
"In 1989 the legislature was not interested in the topic at all. So a constant effort both on the state and national level to make the legislatures aware of infertility - it's definitely been effective. It hasn't been as effective as you would like it to be because the legislative process is extremely slow. And that's a plus and a minus. It's good because it allows what is developed to be worthwhile. The problem is if you are on the receiving end of the legislation, it is painful because why can't it be fixed quickly? But I do think a lot of progress has been made." - Alan H. DeCherney, MD, Chief, Reproductive Biology and Medicine Branch Director, Program in Reproductive and Adult Endocrinology Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health
Accessing infertility treatments remains a financial burden and a barrier to care, and legislation has not helped to support people with infertility afford the care they need.
"The main block for many people is financial. We have not made a lot of progress in getting insurance coverage for the majority of people in this country." - Alice D. Domar, PhD, Executive Director, Domar Center for Mind/Body Health; Director of Integrative Services, Boston IVF; Associate Professor of Obstetrics, Gynecology and Reproductive Biology, Harvard Medical School; Author, Conquering Infertility
Next up, Part 3: "Seeking Support", "Reaching a Resolution", "Thoughts and Hopes for the Future", and our concluding thoughts on what has, and has not, changed for people with infertility in the past 25 years.