Twelve years ago, Rokeya Worthy had one of her ovaries removed because of a cyst. Because she still had one remaining, she figured she’d be fine to carry a child whenever that time came.
But in September, she found out that her remaining ovary also had a cyst, and this time it was worse.
“I could either lose it or they could save it but it would be severely damaged from the surgery to the point that the functionality would drop down to zero,” Rokeya said.
To preserve any chance of carrying a child, Rokeya’s doctor recommended egg retrieval. She was shocked to find out her insurance doesn’t cover it.
“Egg retrieval is looked at as an elective," Rokeya said. "So, me trying to apply for that, it would be denied automatically.”
The process can run more than $10,000. At her doctor’s urging, she turned to GoFundMe.
"I said what if I create a campaign around it," Rokeya said. "And the first two words that came to mind were faith and fertility. Because looking at this journey, you have to have your faith intact in order to deal with the fertility journey that you’re on."
Through her faith and fertility campaign, Rokeya has raised enough for the procedure. Anything more will go to helping other women facing the same fight. But more than money, she wants to raise awareness.
“We didn’t elect to have this happen,” she said. “And I think it needs to be a conversation amongst our lawmakers when it comes to our healthcare policies to have these things in place because, again, nobody ever plans for this.”
“They think, ‘If I need something medically, then surely this is part of my healthcare and my health insurance would cover it,’” said Ana Iltis.
Iltis, who directs Wake Forest University’s Center for Bioethics, Health, and Society, says it’s complicated. She explains it’s natural to think about our healthcare as an individual thing, but insurance is about groups of people.
"We’re talking about tradeoffs among groups of people and coverage for certain interventions may involve increases in premiums, for example, that affect other people or other outcomes like cutting coverage for some other interventions that harm other people," Iltis said.
Iltis says as women are bearing children later and fertility preservation technology advances, there are more conversations about mandating coverage. Right now, 16 states require insurers to offer coverage for infertility diagnosis and treatment. New York became the latest this year.
“And these discussions about what insurance companies should be required to pay don’t really turn on the question of ‘might someone benefit if this were covered,’ Iltis explains. “The answer to that is almost always yes, of course. The question is should everyone in the insurance pool be required to pay for that benefit and are the costs of covering that justified.”
Rokeya says she won’t let what insurance doesn’t do stop her pursuit.
“When you think of insurance, you think you’re covered," she said. "But at the end of the day, I have to go back and rely on my faith and know who I’m covered by and he’s been walking every step of the way.”
Iltis says the stakeholders and decision-makers who would have conversations about changing insurance requirements have to decide whether they cover women who are undergoing medical treatment or if they’d include women who made the choice to delay having children. We checked with North Carolina’s Insurance Commissioner and a spokesperson says those discussions are not happening here, but that could change.
As for Rokeya, she’s raised enough money for her process, and she’s already started treatment. Now she’s putting money into a fund to pay it forward to help other women who are trying to figure out how to fund the process.