On International Women’s Day, the Westport-based Nest Egg Foundation, HLWF™ Alliance and ProcellaRX co-sponsored a vital talk on protecting and expanding access to fertility treatment. The virtual talk, “Harmonizing Health and Hope,” was timely not only because it occurred on a day that celebrates the gender that bears the brunt of the emotional and physical pain of infertility, but also because it took place three weeks after a controversial law was passed in Alabama that put fertility clinics in the national spotlight.
On February 16, the Alabama Supreme Court ruled that frozen embryos can be considered children under state law. The ruling resulted from a case in which several couples’ frozen embryos were destroyed in a storage facility accident. Though this was a devastating situation for these couples, their lawsuit and the new law paralyzed fertility treatment across Alabama as fears of civil liability cases spread through clinics. Imagine cancer patients who are dependent upon frozen embryos to have children, or women who are prone to ovarian hyperstimulation syndrome, whose uteruses need a rest before embryos are transferred, suddenly having their hopes of a family dashed by lawmakers who know little about the complexities of in vitro fertilization (IVF). The option of freezing embryos has been a giant step forward in reproductive endocrinology, drastically reducing the need to transfer multiple embryos—a practice that led to the risky multiple births we saw in the past with IVF.
The Alabama law added yet another limitation to women’s reproductive choices at a time when the board of the Nest Egg Foundation is determined to increase access to life-changing fertility treatments. During the talk, Dana Gilland and Westporter Dr. Mark Leondires (Co-Founders of Nest Egg Foundation), Ashley Rodon (Nest Egg Foundation’s Executive Director of Advocacy & Impact) and Rashmi Rao (HLWF™ Alliance Founder) covered the challenges and miracles of fertility treatment, the financial barriers, and the need for raised awareness, especially regarding how women can proactively preserve their fertility.
Dr. Leondires is concerned about the direction legislation is going in this country. “Alabama deemed frozen embryos to have personage status, but most human embryos are not viable,” he said. “We only transfer the best embryos or we biopsy them and make sure they are chromosomally normal and don’t carry a lethal genetic condition.” He spoke out at a press conference in Hartford when the Alabama law passed, explaining that “less than 20 percent of extrauterine embryos in a lab can even make a cluster of cells that have reproductive potential.” So, no, cryopreserved embryos are not synonymous with babies, but they are often a vital part of the IVF process that is the only route to having babies for many couples. “There are 9 million people on this planet because of this technology,” said Dr. Leondires, referring to in vitro fertilization. “I have children because of this technology.”
Dr. Leondires has been helping people create their families for 25 years. He is the founding partner of Illume Fertility in Norwalk and founder of Gay Parents To Be. He understands what his patients are going through, which is the kind of compassion Ashley Rodon yearned for when she and her husband, Yankees’ pitcher Carlos Rodon, were struggling to have children. She shared how devastated she was by the miscarriages she experienced and how alone she felt, even with a strong support system in her husband, family and friends. “It was the deepest struggle I have been through in my life,” she said. “At that moment, becoming a mother was my only role and I was so excited for it. I almost felt like my identity was stripped from me.” The couple was scheduled to start fertility treatment when Ashley got pregnant. “I remember holding our miracle, Willow, and thinking, Everyone deserves this feeling of holding this precious human being,” recounted Rodon. “The day I looked in her eyes was the day I said to myself, I’m going to use what happened to me to make a difference in the world.”
In addition to her advocacy for the non-profit Nest Egg Foundation, which provides grants for IVF for those who are unable to seek treatment due to financial need, Rodon and her husband also established the Willow Grant to help others experiencing recurrent miscarriage. The demand for these grants underscores the financial barriers to fertility treatment in the United States. In countries like Denmark, Belgium and Japan, IVF treatment is subsidized. “Here, 2 percent of children are born from IVF; in Denmark, it’s upwards of 10 to 12 percent,” said Dr. Leondires. “Everyone who wants to have children should have access to this.”
Rashmi Rao has observed that “Europe is doing a much better job as far as access to care. It’s not always timely, it may not be the best quality, but that has been my experience in terms of access. And when I say ‘access,’ it also means cost of care.”
“The people struggling might not be who you think,” said Dana Gilland. “They are teachers, firefighters, your neighbors. There are so many people impacted by infertility. The expenses are extraordinary, and the emotional toll is so invisible.”
Dr. Leondires added, “There is a lot of shame and guilt with infertility, which is misappropriated. This is across the board, but for a lot of people of color, it’s even more in the shadows. If you are in a room with ten women and you ask how many have had miscarriages, seven of them will raise their hands. Women are amazing in that they are willing to be open and wrap their arms around each other. So if we can wrap our arms around this problem and just elevate it, more women will seek help.”
A step in that direction is a bill that Senator Blumenthal and fellow Democratic senators are hoping to pass: the Access to Family Building Act. The legislation would establish a statutory right to IVF access for all Americans who need it to start or grow a family. “No one will take advantage of this because going through infertility treatment is so hard,” said Dr. Leondires. He notes that fifteen states have mandated fertility coverage, including Connecticut, and some companies are providing egg cryopreservation coverage for their employees.
Freezing eggs was an experimental technique until 2016 but is now a highly effective route for young women to preserve the fertility of their robust eggs before the inevitable deterioration that aging causes. Women’s fertility is in its prime around age 24, begins to decline more rapidly a decade later, and drops dramatically in the late 30s/early 40s—which these days can coincide with both emotional and financial readiness for parenting. Seeing famous women having babies at 50 can lead to the misconception that it’s not so hard to conceive at that age. Dr. Leondires explained, “Those women are typically using donated eggs. That’s also a viable family-building pathway, which is why I published a book about egg donation (Building Your Family: The Complete Guide to Donor Conception).”
Dr. Leondires advises women to be thinking about their own fertility “certainly by age 35.”
Learn more about Nest Egg Foundation, Inc. and the Willow Grant here: Nest Egg Foundation.
𝐍𝐞𝐬𝐭 𝐄𝐠𝐠 Foundation is a collaborative effort between medical and financial professionals, attorneys and others who care about building families and want to help those who cannot afford fertility treatments.
𝐇𝐋𝐖𝐅 ™ 𝐀𝐥𝐥𝐢𝐚𝐧𝐜𝐞 is a non-profit community of women leaders, who are driving positive change to break down silos and make a real difference in Healthcare, Healthtech, Life sciences Wellness and Fitness HLWF ™ [𝐇–𝐇𝐞𝐚𝐥𝐭𝐡, 𝐋–𝐋𝐢𝐟𝐞𝐬𝐜𝐢𝐞𝐧𝐜𝐞𝐬, 𝐖–𝐖𝐞𝐥𝐥𝐧𝐞𝐬𝐬, 𝐅–𝐅𝐢𝐭𝐧𝐞𝐬𝐬] industries.