Women Who Can't Afford IVF Describe 'Shame' Over Turning to Fundraising
With the skyrocketing costs of IVF and other fertility treatments, more and more would-be parents are turning to fundraising sites in hopes of financing their families. But crowdfunding comes with its own costs.
Nelly Cabrera and her husband, Laz, reluctantly turned to online fundraising this month to help pay for in vitro fertilization (IVF)—after years of struggling to get pregnant and footing infertility treatment bills. Nelly tells Health that they started a GoFundMe—and are already feeling shame and anguish about it. And they're far from alone.
"I felt ashamed to fundraise because I felt like I was broken," she says. "I felt like I was going to be judged because I couldn't afford this...people might be like, 'Well, if you want a baby, you need to pay for it."
Nelly, 34, has been diagnosed with a host of conditions, including natural killer cells and antiphospholipid syndrome. Meanwhile, Laz, 32, has high levels of anti-sperm antibodies and bilateral varicocele. Nelly and Laz are just one couple among the pages and pages of people trying to raise money online while facing what Nelly calls the "mentally, physically and financially draining" journey of infertility.
Insurance companies refusing coverage prevents access to IVF
In the US, 80% of those who have accessed IVF treatment received little or no health insurance coverage for it, according to a recent study by FertilityIQ, a digital platform that tracks fertility benefits. Meanwhile, only 15 US states have passed laws that require insurance companies to cover infertility treatment, and just two states require companies to at least offer coverage. All of this creates a "zip code lottery" for financial access to IVF.
Nelly and Laz, who live in Florida, do not have IVF covered by their health insurance—and were rejected for IVF loans because they had just signed a mortgage weeks before discovering their conditions.
So, they proceeded to spend their life savings, borrow from friends, and dip into Nelly's 401k to scrape together the $20,000 for an IVF round last year. But then, Nelly went on to suffer a chemical pregnancy—a loss she describes as "layer upon layer upon layer" of trauma.
"It was just an agonizing pain in my heart," she said. "I screamed and cried. It wasn't just like a regular loss. It was months and months of getting my hopes up and the dream. And then, on top of that, there's the financial part."
"I was too embarrassed to do [online fundraising] for the first round," Nelly adds. "But because it is now the second time, and we really don't have the money, I had to put my ego and my pride aside...and put my story out there. People don't understand how painful infertility is and that this is a disease—that's why I was so nervous to ask for help and be very transparent about what's happening to us."
IVF success rates are notoriously low; in 2019, just 77,998 women out of 330,773 (24%) successfully gave birth after the procedure, according to the latest research from the Centers for Disease Control and Prevention. Nevertheless, many people will exhaust all possible financial avenues in order to pay the average $12,000 to $20,000 necessary for IVF treatment—even if it just gives them a slightly better chance of having a biological baby.
It's not just the United States
The picture is similar in the UK. Even though couples there can apply to get IVF for free on the National Health Service (NHS), the funding is allocated by different clinical commissioning groups in local areas. These groups are meant to follow the same blanket guidelines from the National Institute for Health and Care Excellence (NICE)—but funding availability and eligibility still varies depending on where you live.
UK resident Carla Sweetman-Kerr tells Health she was "gutted" when she got rejected for NHS funding. The 33-year-old, who suffers from severe endometriosis, applied in two local areas—but her partner Debi, 50, already had two children from a previous marriage.
"We were denied funding on the grounds that I should see Debi's children—who are adults now—as my children," Sweetman-Kerr explains. "I want to have my own child, and we wanted to start a family in our openly gay relationship, but not being able to—it has been a really hard pill to swallow."
The couple both work in nursing and are "not big wage earners," Sweetman-Kerr says. They've spent years struggling to pay for private treatments using credit cards, savings, and refinancing their house. They even traveled to Denmark and Norway, where IVF prices are cheaper than in the UK—but to no avail.
"We were getting ourselves into no end of debt," Sweetman-Kerr adds. "The strain of the bills as they come through adds huge huge stress to the whole thing. When you think you've paid everything, another bill comes through. It adds up."
Like many couples, Carla and Debi eventually turned to a fundraising website since, as Brit puts it, they'd "gotten to the end of the line and had no other option financially."
"It was that point that we said: 'As proud as we are, maybe it's time to ask for a little bit of support,'" Sweetman-Kerr explains.
Sweetman-Kerr adds that she and her partner feared being judged for crowdfunding. "You're not raising money for charity," she explains. "You're asking people to donate money for yourself—and people aren't always inclined to give it to you. You also feel bad for asking."
Their journey has now been put on hold after Sweetman-Kerr received the devastating diagnosis of a brain tumor in June last year. Still, the couple remains hopeful that the tumor will turn out to be benign—and they can, as Sweetman-Kerr puts it, "continue our baby journey a little bit longer."
Minnie Lansell, also in the UK, was left similarly traumatized after the NHS rejected her application for funding, leaving her with no other choice but to share her painful story publicly and raise the £8,000 ($11,000) online.
The 34-year-old began trying for a baby with her husband Simon eight years ago, but one year in, she was diagnosed with Polycystic Ovarian Syndrome, a condition that caused her to put on too much weight to qualify for NHS funding. After years of trying to lose weight and navigate the health service for alternative treatments, the couple decided to pay for IVF privately—but realized Lansell would be 40 before they would have enough saved to pay for it.
Lansell tells Health she'd previously felt that GoFundMe was "for people who are more deserving than me or the people who are more confident than me—for the perfect couples."
"But over time, I've just been worn down," she adds. "The emotional stress of it is just awful. I guess desperation took over a little bit. I've had to get to that point where all other avenues just seem to be closed doors."
Publishing her story online also felt like "an invitation to get trolled," Lansell explains. "I was terrified, and I thought I was going to get people on the defensive, judging me for asking for money."
"Then there's the added pressure that comes with it," she adds, explaining that taking people's money made her feel she must get pregnant, that IVF must work or else. "But we can't make sure I do get pregnant."
She adds that the endeavor also came with the anxiety that if they do become parents via crowdfunding, they would never feel "allowed" to struggle with childcare or complain about sleepless nights, "because we fought so hard for it and asked others to pay for it," Lansell explains.
Crowdfunding is a legitimate option
Despite all the shame, fears, and embarrassment, all of these women who crowdfunded their IVF treatment tell me that the messages of support and donations they've received have helped alleviate the guilt of asking for money in the first place.
They also all agree that their conflicted feelings about fundraising highlight how much society needs to eliminate the stigma around infertility, beginning by teaching young people that bodies may not function exactly like their Sex Ed textbook said.
"Being a mom has always been my absolute dream and passion," says Cabrera, "but we didn't have a clue that we were going to have these problems." She adds that as a woman, it was easy to feel "embarrassed—because it feels like [having kids is] what we're born to do."
The way forward: Increased education and coverage
Cabrera is committed to furthering education about infertility as well treatments such as IVF—and the astronomical costs associated with them. "Because a lot of us could've known about this" earlier, Cabrera explains, "and maybe could've been tested sooner."
"Our bodies don't work the way we're being taught they do," Lansell adds, explaining that it's only those "who want to have a baby and are struggling who really understand this whole world."
Gwenda Burns, chief executive of charity Fertility Network UK, concurs, telling Health that "it is important people have the appropriate information to allow them to make informed decisions about their future. Fertility education is vital... One phrase we often hear from people is, 'If only I'd known earlier.' They feel in retrospect that they would have made different choices had they been more knowledgeable about their future fertility."
In addition to increasing education, we also need to increase access—and that particular onus is on insurance companies in the States and the NHS across the pond.
Burns also calls for "fair equitable access" to three fully funded cycles of IVF in every area of the UK. "Infertility affects around 1 in 6 couples, but access to NHS-funded treatment is very much a postcode lottery," she explains. "This is not only unfair, as it adds financial stress onto an already very distressing situation, but denying access to NHS-funded IVF is associated with health risks and economic consequences."
"Today, too many people do not have any insurance coverage for these medical treatments, including IVF," Barbara Collura, President and CEO of national infertility association RESOLVE, tells Health. She says it's imperative for insurance policies in the United States and elsewhere to cover access to medical treatments for those who need assistance building their family—whether that's single people, people who have had cancer, same-sex couples, you name it.
"Large employers should be offering comprehensive coverage to all their employees," Collura adds, "and we need to pass more state mandates to require the fully-insured market to include IVF coverage."
RESOLVE also urges Congress to pass legislation requiring that federal employees or anyone whose health insurance is provided by the government should have treatments such as IVF included in their cover.
The bottom line? "If all health insurance plans treated this with the seriousness it deserves," says Collura, "no one would need to fundraise online to access the care they need."