This week, we’re sharing the story of infertility advocate, Risa Levine. Risa’s story is a great example of the work that can be done and the progress that can be made, when you’re willing to stand up and fight for a cause. We hope that it will inspire you, as it has us, and that you might decide to join us at Advocacy Day on May 11th in Washington, D.C.
Elizabeth
Risa’s Levine’s husband proposed to her with the words, “I want you as my wife, I want you as the mother of my children.” They married shortly after and, with Risa living in New York City and her husband in Washington, D.C., they had a commuter marriage for the first year. They both wanted children but Risa stayed on the pill, knowing that trying to conceive wouldn’t bode well for what was already a challenging relationship.
Eventually, Risa’s husband joined her in New York City and a few months into trying to conceive, she made an appointment with a reproductive endocrinologist. Her doctor was confident that a few IUIs was all she would need. Unfortunately, that wasn’t the case. IVF cycle after IVF cycle ensued. “I did my injections at the U.S. Open in the bathroom, I did them in the middle of a Springsteen concert concert, I did my trigger shot with a client in the car. I just pulled down my pants and just popped it in my butt. You name it, I did it everywhere,” Risa recalls.
On the first morning of the 2004 Democratic National Convention, Risa, who was involved in John Kerry’s campaign for presidency, had her blood drawn for the beta results of her first IUI before driving to Boston for the convention. “I got the phone call just as I crossed the Massachusetts border. I heard the magic words, ‘Congratulations, you’re pregnant!’”
Elated, Risa threw back the top of her convertible and blasted Bruce Springsteen for the rest of the trip. Sadly, her repeat beta two days later revealed her numbers were going down instead of up. She was losing the pregnancy. Just wanting to be at home, she left the convention before Kerry and Edwards gave their speeches.
Early on in treatment, Risa started advocating for infertility rights on her own. “I had a lifetime max on my insurance of $10,000. I can’t speak for the rest of the country, but in New York that lasted about 15 minutes. I mean, a hysterosalpingogram and then three consults and you’re dead,” she explains.
Risa went to Washington, D.C. prepared with homemade folders and information packets on infertility. She’d set up a meeting with Anthony Weiner, who had previously introduced the Family Building Act, legislation to mandate infertility coverage on a federal basis. It hadn’t gotten very far and Weiner wasn’t planning on introducing it again. “I said you’ve got to introduce it again. I was aggressive and pretty vocal,” Risa recalls. With her urging, Weiner reintroduced the legislation six months later. “As far as I’m concerned, Risa states, “Anthony Weiner is an infertility hero and I will maintain that to this day.”
Weiner’s office alerted RESOLVE: The National Infertility Association, that Risa was on Capitol Hill lobbying for their issues. RESOLVE’s president, Barb Collura, called Risa and asked her to join their advocacy efforts. So, Risa chaired her first Advocacy Day and continued working with RESOLVE while doing everything in her power to try to get pregnant. She tried acupuncture, Mayan abdominal massages, went to a physical therapist to manipulate her uterus. She traveled to Israel with her family and visited every rabbinic tomb in northern Israel, traveling by armored bus to Bethlehem and, wearing a red bracelet, prayed at the tomb of Rachel, who had also suffered from infertility. She even drank crushed red rubies because there’s a connection between rubies and fertility in the Talmud. She had more pregnancies but none of them lasted. It was a difficult time, made even more challenging with Risa’s husband struggling with depression and alcoholism. “My husband continued with the alcohol binges in and out of my cycles so I was either dealing with him in the hospital or me losing a pregnancy or both. It was just an up and down nightmare of both happening at the same time.”
Back in the U.S., Risa worked with then Senator Hillary Clinton’s office on infertility. “We went through every issue and they were extremely patient, very inquisitive, and they wanted to understand absolutely everything,” she recalls. While Clinton’s office didn’t think it was the right time to introduce the Family Building Act in the Senate, they promised to help. “I didn’t know what form that was going to take but I also know how Clinton operated and her methodology is that if she couldn’t do it legislatively, she always found another way.”
A few months later, RESOLVE received a phone call from the Centers for Disease Control (CDC) after Clinton had called them asking what they were doing about infertility. As a result, the CDC drafted a white paper, establishing a need to study infertility. That paper became the National Public Health Action Plan for the Detection, Prevention, and Management of Infertility. “When the CDC declares something a disease that requires study, it becomes a public health issue and that’s an enormous platform for our advocacy,” explains Risa.
In November of 2007, Risa was mid way through what would turn out to be her last frozen embryo cycle when her husband came home saying he thought there was going to be trouble at work and that she had to either cancel the cycle or he was divorcing her. “It was out of the blue and that was really super traumatic,” she recalls. “He canceled the cycle, then left shortly thereafter for in-patient rehab. I had a friend’s wedding and I couldn’t face it and I went to Iowa instead for Hillary because that’s what I do. That’s how I deal with things. I campaigned. It became about getting Hillary elected” Risa says, fighting back tears.
A couple of weeks passed and things at home seemed like they would be okay until her husband told her he had rented an apartment and would be moving out the following week. Risa expected that their divorce would be amicable but that wasn’t the case. Instead, it took the next two years. The main thing they fought about was the four embryos they still had in storage at Cornell. “My then father in law was adamant that I was not going to have those and he told his lawyer, who told my lawyer, that there was no amount of money that he wasn’t willing to spend to make sure that I didn’t have them.”
Knowing that she couldn’t afford to fight her father in law, Risa made the decision to donate the embryos to Cornell for research, believing that was the only way to make sense of losing them. She hoped that Cornell would be able to use the embryos for something meaningful, whether it was stem cell research, infertility research, or whatever else they chose to use them for. Risa recalls that she had to force herself to sign the consent to dispose of the embryos and that that’s when she broke down. “I’ll never see my children. I lost my kids. The hopes and dreams I had; celebrating their bar mitzvahs and college graduations and first days of school and all of that. There is no getting over that. There’s living with it but there’s no getting over it.”
Risa spent her life’s savings and then some on her treatment, “I don’t have a baby and I’m divorced. So, outcome wise. It’s not an effective use of funds, time, body, money, life in any way. By the time my divorce was final in 2010 I was 48 years old and I was broke and broken.”
Risa continues as an infertility advocate because she hopes that she can make sense of what happened to her by helping other people. She’s frustrated when she sees those in the infertility community build their families and then not turn around and try to help those who are still fighting to build theirs by writing a $10 check to RESOLVE once a year, writing a letter to their legislators, or showing up on Capitol Hill during Advocacy Day.
Risa hopes that through her advocacy work, eventually, nobody will have to go through what she went through. Her next fight will be at the first New York Advocacy Day, Tuesday April 12th in Albany for coverage of IVF and legalized compensated surrogacy and she will be in D.C. again on May 11th, lobbying for family building legislation. “I fight so that people can have success,” she says. “I want them to have success.”