From Infertility Angst to Fertility Advocate

By TTC Warrior Jennifer Jay Palumbo

I want to talk to you about Risa Levine

Risa Levine is often called an infertility warrior and an “uber” fertility advocate. While her journey did not end with having children herself, she remains dedicated to creating awareness and access to fertility care for those who need it.

Risa became an infertility advocate in 2004 while struggling with her fertility diagnosis. She has served on the board of directors of RESOLVE: The National Infertility Association since 2011. Over the years, Risa has worked hard (typically paying out of her own pocket) to travel to State Capitals, advocacy events, and visiting lawmakers across the U.S. to advocate for federal insurance coverage for treatment. In recent years, she was the lead advocate in getting IVF coverage included into the New York state budget (where she resides), which gave 2.5 million New Yorkers access to fertility treatment.

In 2019, RESOLVE even created a new award, the RESOLVE Advocacy Legacy Award, in honor of her work

At that year’s Night of Hope, a tribute video was presented that included several notable people singing Risa’s praises. The footage included Melissa DeRosa, Secretary to Governor Andrew M. Cuomo, as well as Hillary Clinton.

For me personally – she has not only raised the bar on my own advocacy efforts (as well as my footwear as she ALWAYS wears heels. I suspect her slippers even have some height to them!), but she’s been a mentor to MANY on demonstrating the level of commitment, persistence, and unwavering dedication to “paying it forward” to those who want nothing more to have a family.

I interviewed her on her family building journey, how the trying to conceive community remains the same and how it has changed over the years and what words of wisdom she has for those going through infertility that wants to help others.

Jay: Can you provide a brief overview of your infertility journey?

Risa: I remember that I went off the pill a year after I got married in September of that year. My first appointment with a Reproductive Endocrinologist was on my birthday! My first IUI was the following month, for which I had a positive beta! I was so excited but soon learned what a “chemical pregnancy” was as the numbers failed to rise.

I started IVF and did 9 or 10 cycles after that. Some that almost didn’t make it to transfer. I also did five rounds of IVIg, five co-cultures, had two hysteroscopies, and lots and lots and lots of alternative procedures, treatments, and general witchcraft. Whatever anyone suggested or I found on the internet, I tried!

Jay: How has the infertility community changed since you started treatment?

Risa: So much! When I started, I got my “support” through an anonymous website where we had screen names and didn’t know who we were speaking to.  We shared fertility medication with each other by meeting in public places with handoffs from strangers. We didn’t tell our friends what we were going through. When I started to advocate on my own with legislators, it was almost impossible to get others to join me. Now it’s a badge of honor; it was not then.

Jay: How has it stayed the same?

Risa: Judgment from others, dismissive attitudes about it not being a real problem or disease. And the loss and pain will never change.

Jay: When did you start advocating around infertility rights and access to care?

Risa: Before anyone else! In the summer of 2004, I was already speaking to legislators!

Jay: What were your greatest successes in terms of advocating?

Risa: Getting several bills introduced in Congress because of my efforts. I was also instrumental in getting the CDC to issue a National Action Plan on infertility, being a vital member of the coalitions that ensured the passage of two pieces of legislation in New York to cover IVF and reverse the ban on surrogacy. More importantly, encouraging others to fight for this issue and destigmatizing this disease in and off Capitol Hill in the United States!

Jay: In terms of the global issues surrounding infertility, what advice would you have for anyone interested in becoming an infertility advocate?

Risa: Use your voice. First, learn what the barriers to access are. Second, come up with solutions. Be prepared to change your goals as you learn what is passable or doable and celebrate incremental success along the way. Share your goals w others and recruit them to your cause. Don’t fall for advocacy traps like petitions. Speak directly to those who can effectuate change. And tell your story or the stories of others to keep normalizing what this disease is all about. 

To read more from the brilliant Jennifer Palumbo, click here

 

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