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Episode 82 Transcript

Ep 82 Transcript | National Infertility Awareness Week 2023


Welcome to Fertility Cafe, the home for every conversation exploring alternative family building through IVF, surrogacy, egg, sperm and embryo donation. Our host Eloise Drane, alternates episodes between educational shows, covering specific topics and guest narratives for further insight. For a mastery understanding and confidence in all things, alternative family, subscribe to Fertility Cafe.


Hey there, welcome to episode 82 of Fertility Cafe. I’m your host, Eloise Drane.

A lot of people don’t give any thought to infertility, it’s simply not on their radar. National infertility Awareness Week is a movement that was founded in 1989. To change all of that. It’s about empowerment, community, raising awareness, and shining a light on evolving issues surrounding infertility.

Regardless of what you may think you know about the issue, the fact is that anyone can be challenged to have a family, no matter what race, religion, sexuality, or economic status you are, infertility doesn’t discriminate. And as someone who has been an egg donor, a gestational surrogate, as well as a fierce advocate for those in the sphere, who feel stigmatized and unheard, I can say that it’s so amazing to have a national event exploring these issues. National infertility Awareness Week, also known as NIAW, unites millions of people who want to remove the preconceived notions and barriers that stand in the way of building families.

So for those of you who don’t know about it, I’m excited to share a little bit about the background of NIAW, and what you can expect. And for those who follow this event, every year, we’re going to talk about all the upcoming events and how you can check them out and get involved. First, let’s talk about when an AI aw is happening. National infertility Awareness Week is always the last full week of April. So it’s coming up April 23 through 29th of 2023. It was founded as I mentioned in 1989, by the nonprofit group, the National infertility Association, otherwise known as resolve their origin story goes back to 1974 when a group of people met around a kitchen table, all with one common thread. They needed support a resource and people who understood what it was like to live with infertility. It was then that they decided their mission would be to ensure that all people challenged in their family building journey could find a resolution, they have remained an active and relevant force united by advocacy and inspired to act. Before we get into the actual calendar of events. I want to delve first into why events like this are so needed. The fact is that there are several significant barriers to accessing and fertility care. Yes, here in one of the most powerful countries with access to some of the top resources in the world, this remains a glaring problem today. At the top of the list of those issues are race barriers. deeply entrenched racial and ethnic disparities in health that disproportionately impact black women in the United States are also seen in their rates of infertility in access to care. The fact is, black women are nearly twice as likely as their non Hispanic white counterparts to experience infertility, but only half is likely to receive treatment. And like so many other sectors in this country. Unfortunately, the infertility industry is one with a long history of institutionalized racism. I can personally speak to this. I’ll tell you briefly about when I first became interested in becoming an egg donor. I was visiting with my cousin in California, and I saw an ad seeking egg donors. I contacted that agency and asked them if I could be a donor. I didn’t realize at the time that it was possible to be a donor even though I didn’t live in the state of California. Well, it turned out the issue wasn’t about the state. Actually, the issue was that I was African American. They told me black woman didn’t have infertility issues, and they were unsure if I would ever be matched. But should they have anyone interested? They will let me know. I will not to get matched eventually. But my first experience was not the greatest. Nevertheless, it was a life changing experience, knowing that I was helping bring a life into this world and into a really great family. My fascination with the fertility industry only grew and the more I learned, the more I realized there was a vastly underserved population. When I founded family inceptions. In 2008, we were the first surrogacy and egg donation agency in the state of Georgia. And unbeknownst to me at the time, the first black owned agency in the country, apart from racism, another big barrier this industry faces is stigma. There are so many cultures and religions focused on the sacred value of fertility. But the fact is that millions of women around the world struggle with infertility. Part of the cloak of shame that surrounds it has to do with this less than feeling that women in these cultures and in these religions experience unfortunately, in our own country, which some people think is so progressive compared to other countries, there is an undeniable cloak of shame surrounding infertility. This may explain why according to the National Library of Medicine, women trying to conceive have the same levels of anxiety and depression as women diagnosed with HIV, cancer and heart disease. As an agency owner, I see the wrenching emotions people experience every day. It’s real, and it runs deep. And despite the revolutionary changes that have reshaped fertility medicine over the past three decades, one thing remains consistent. Women still insist on blaming themselves, which is really a shame, especially since in 20 to 40% of cases, infertility is due to low sperm count and other male factors. However, regardless of cause, most treatments to enhance fertility require increased effort by the woman. In other words, the burden of coping with and seeking treatment for infertility is most often placed squarely on women. Ironically, this can cause undue levels of stress and anxiety that end up making it harder to conceive. female patients who report high levels of day to day stress are 13% less likely to conceive than women who experience much lower levels. According to a Boston University study published in 2018, and the American Journal of Epidemiology. Sally, this kind of shame and embarrassment can also discourage women from pursuing fertility treatments at all. We’ll get into insurance discrimination in a minute. But first, let’s just talk about the systemic discrimination that exists in this country surrounding same sex couples. issues of discrimination, homophobia, and stigma against the LGBTQ plus community not only impacts self esteem, but they also negatively affect the health and well being of the LGBTQ plus community. When you think about the fact that same sex marriage has only been legal on a national level for eight years, that in itself is kind of mind blowing. Before then it was up to the individual states to determine whether a same sex couples could marry. Taking that history into account explains why the LGBTQ plus community faces such a major uphill battle when it comes to insurance for fertility issues. Last year, in an article in the Washington Post, a reporter interviewed a couple in Brooklyn, Nicholas Masha Pinto and Corey Bearskin about their battle with their insurance company. When the two began dating in 2011. They both felt very much on the same page about a strong desire to have children of their own. But more than 10 years later, the couple now married have not been able to bring this dream to fruition. The reasons they say are discriminatory policies that categorically shut them and other gay male couples from accessing a key fertility treatment in vitro fertilization. Last April Briskman, Amanda Pinto filed a class action discrimination complaint against the city of New York, alleging the city government violated their civil rights by refusing to pay for fertility services that were covered for women and cisgender couples. In the complaint, Briskman said he believed his insurance benefits working for the city would cover some of the costs. The filing with the US Equal Employment Opportunity Commission alleges that the city of New York’s denial of IVF benefits to the couple and other gay male employees constitutes unlawful sex and sexual orientation discrimination. And gay couples aren’t the only ones battling insurance to cover infertility issues. Currently, as of this recording, 19 states require insurance to cover fertility treatments. Statistics show that roughly one in five women have trouble getting pregnant and IVF has become a common path to parenthood for many, but even as demand grows, insurance coverage remains limited 27% of Companies with 500 or more employees covered IVF in 2020, up from about 24% in 2015. NPR recently interviewed a couple Brenda Kaminski and Joshua prett in Florida, which is not one of the 19 states required to cover fertility treatments. Luckily, Prince insurance offered coverage, putting them among the fortunate minority of Americans whose insurance plan covers what we all know is a crazy pricing procedure. Sadly, at the end of the day, the couple paid more than $15,000 for two rounds of IVF, including all medicines. And as is true for the majority of procedures nationally, success rates vary from 12% to 70%, depending on the patient’s age, neither round resulted in a viable pregnancy. Kaminsky expressed that the whole thing has been a nightmare. The stress, she said was unbelievable. The article quotes Dr. Kara Goldman, Associate Professor of Obstetrics and Gynecology at Northwestern University, who states that, quote, infertility is a disease and should be treated as such. And insurance coverage should reflect that. Coverage is often incomplete because people too often don’t see infertility as equal to other diseases. And quote, yes, exactly what she said. So let’s get back to the urgent need for awareness raising events like Nia Aw. And let’s talk about the nuts and bolts of what is going on April 23. Through 29th. And I aw is a series of virtual and live events, whether it’s online or local event, there are a lot of exciting ways you can get involved and show your support for the cause. Attend resolves Advocacy Day, advocacy day in partnership with the American Society for Reproductive Medicine, ASRM is during an AI aw on Tuesday, April 25. This virtual event is a day for the community to come together to talk to members of Congress about important issues like increased access to family building options and financial relief. With the guidance of a team of advocates and resolve staff. You will have everything you need to get started. The Do It Yourself walk of hope is another great event. The walk of Hope represents the infertility journey. A series of small steps each one filled with hope and a reminder that no one on this journey should walk alone. By bringing a DIY walk of hope to your community. You’re raising much needed awareness and funds to support essential advocacy for access to family building options, education and programs to improve the lives of those living with infertility. Several DIY walks up hope are being held across the country hosted by people who want to highlight infertility issues in their local community. funds raised from the walk support resolve programming, check out their site to find out how you can start a resolve walk or fundraiser in your area. All the information will be in our show notes.


National infertility Awareness Week is about empowering you and changing the conversation. There are many ways for you to join the conversation during Nia Aw, one of those ways is through the lens of social media. Help spread the word for Nia Aw 2023 Create an NI aw Instagram real or a tick tock don’t forget to tag at resolve org in your post and use hashtag and I Aw 2023 and hashtag find your voice. This year’s message is to find your voice. Empower yourself and others to help start the NIA aw conversation whether you’re a professional patient or want to support someone you know with infertility and I aw is our time to define what family is for us to own the choices that are the best for us and to come together with a community to bring awareness to the infertility experience. Together we will let the world media and Congress know how infertility and legislation impact our family building. We take our power back when we find our voice among the opinions and unsolicited advice about infertility and family building. We can all elevate our voices and spread the word about Nia W with shareable and downloadable graphics provided in both English and Spanish, including logos, post images, story templates and lots of cool goodies. Again, you can find all of this information in our show notes. Use hashtag and I Aw 2023 and hashtag find your voice as much as possible and tag resolve at resolve org to help make the movement Trent. Every picture tells a story. What is yours during an AW show the daily impact of infertility and the challenges people face to build a family through the lens of your own camera. The NIA W five day challenge is a great way to help spread awareness virtually through the collective voice of social media. It’s an opportunity to share your own personal tie to this disease and how infertility has had an impact on your life, your work and your relationships. Starting Monday, April 24 and ending on Friday, April 28. We’re challenging this community to share a different photo, story or reel for every day using the hashtags the number of the specific day challenge hashtag the NIA w 2023. And hashtag Find Your Voice. Here are some suggestions. Day one for 24 Voices of infertility. While each of our voices may tell a different story they need to be heard. What will you have to say? Share your truth on your feed in a real or story that represents what it’s like to face barriers to access treatment. Live without children, adoption, surrogacy and or third party family building. Let’s share our collective voices of infertility. Day two for 25. Use your voice. How do you plan to use your voice? Talk to lawmakers, ask for coverage at work and family building benefits. Post a picture tag at resolve. org and share how you will use your voice. Day three for 26. wear orange from Orange Socks to an awesome t shirt. Rock your orange to help support and raise awareness during National infertility Awareness Week. Day four for 27 Voices of support. Where do you pull your support from? Who supports you? Is it a friend, a support group or an online community? Elevate voices of support in your life? Day five for 28 Find your voice. There are many ways to find your voice even when sharing your own story openly may not be right for you. Share how you will find your voice after Nia Aw 2023 In a post, real or story. Start a Facebook fundraiser to raise awareness and help support the mission and programs of resolve. Create a YouTube video about your infertility journey and let resolve know about it. Email [email protected] and share your video with us at Fertility Cafe. inform the public by posting an infertility fact today during the week of Nia Aw. Share these facts about infertility on infertility etiquette. Show your support during Nia w by hosting an event. Whether it’s a local event in your area or an awareness event happening online. Let the good folks at resolve know a little more about wear orange. Since 1989 We’ve been rocking orange to help promote infertility awareness. Join the orange movement on Wednesday, April 26. And rock your orange gear to show your support of national infertility Awareness Week. The concept behind wear orange campaign is to help raise awareness about the importance of empowering you in your journey and changing the conversation around infertility. Whether it’s you or someone you know who struggles to build a family where orange if you’re wondering why orange, the color orange promotes a sense of wellness, emotional energy to be shared compassion, passion and warmth. Studies show that orange can create an heightened sense of activity, increased socialization, boost in desperation, contentment, assurance, confidence and understanding. There is actually a complete toolkit that you can download on the site with all the misinformation and stigma attached to the world of infertility. It’s time we take control of the narrative. And I aw is an excellent way to show your support, be part of opening up dialogues, raising awareness and spreading accurate information. So we as a society can have conversations about what’s happening today, and talk about how we can pave a smoother path for tomorrow. Thank you so much for listening. If you found this episode helpful, please rate Fertility Cafe on your favorite listening platform and share this episode with anyone you think could benefit from hearing it. Tune in next week for another amazing episode on Fertility Cafe. Until then, remember, love has no limits. Neither should parenthood.