Nagging chest pain sent Claudia Hopper, then a junior at Texas State University in San Marcos, to the doctor. Nine years earlier, in 1992, Hopper had survived thyroid cancer, so she knew to pay attention to her health. For the better part of a year, doctors assured the 21-year-old that there was nothing to worry about—that the swelling on an MRI scan of her chest was just inflammation. They were wrong. She was finally diagnosed in 2002 with a rare type of sarcoma, an orange-sized tumor that had grown on her sternum, likely a result of radiation exposure during her previous cancer treatment. In a moment, her life changed from that of a carefree college kid to a full-time patient. Hopper withdrew from her classes, moved home to Austin, and traveled back and forth to Houston for chemotherapy at MD Anderson Cancer Center. During one of dozens of appointments, a nurse mentioned that the aggressive drug protocol necessary to save her life was likely to leave her infertile.
“It was shattering,” she says. “All I’d wanted my whole life was to be a mom.” Freezing her eggs before chemo was an option, but a single round of egg freezing cost about $10,000, plus roughly $5,000 more for hormone injections. (Many patients require more than one round to retrieve enough eggs; doctors advise banking at least ten to fifteen eggs per desired child.) Hopper’s parents were already stressed about all the costs that came with her cancer treatment; the extra expense was too much. So she went ahead with chemo and tried not to think about her fertility. Frequent worry still crept in, though—and not just about whether she would survive. “I couldn’t care less about losing my hair and all the other side effects, but to know I probably wouldn’t be able to have children was just devastating.”
Twelve states mandate that insurance companies cover the cost of fertility preservation (freezing eggs or sperm) for cancer patients. Texas isn’t one of them, but survivor advocates hope that may soon change. State Representative Nicole Collier, a Democrat from Fort Worth, has filed House Bill 389, which would require insurers to pick up the tab. Richardson Republican Angie Chen Button filed a duplicate bill, HB 1649, and San Antonio Democrat José Menéndez put forth a companion in the Senate, SB 447. “I don’t care whose name is on it,” Collier says. “I just want to get this done.”
A breast cancer survivor, Collier says this issue is close to her heart. Though she had already finished building her family when she was diagnosed, she met other survivors who were facing infertility. “When you’re diagnosed, you can’t prepare for how overwhelming it feels, how you have to fight for yourself and for the best treatment,” she says. “No one should face this burden on top of everything else that comes with cancer.”
Collier put forth similar legislation in the 2021 and 2019 sessions, but it failed to advance—due in large part to lobbying from the insurance industry, says Joyce Reinecke, executive director of the nonprofit Alliance for Fertility Preservation (AFP): “The insurers are the primary source of opposition.” (A spokesperson for the Texas Association of Health Plans, an industry trade group, declined to comment for this story.) Lawmakers of all political stripes are usually supportive of the idea, Reinecke says, and often incredulous that the treatment isn’t already paid for. “I’ve had conversations with experts and policymakers who have actually challenged me on the idea that coverage doesn’t exist,” she said. “They’re like, ‘That can’t be right.’ And then I have to explain that, no, really, this is the true state of affairs.”
Because most cancer patients are older, a relatively small number of them are eligible for fertility preservation—about 9 percent of the 1.8 million Americans diagnosed with cancer each year, according to the AFP. As the second-most populous state, Texas has more cancer patients than almost any other. Approximately 137,300 Texans were expected to be diagnosed in 2022, according to the Department of State Health Services. If 9 percent of them are eligible for fertility preservation, that’s 12,357 Texans who could benefit from the proposed legislation. A handful of other conditions, such as rheumatoid arthritis and lupus, can also necessitate treatment that causes infertility. HB 389 would cover those patients, too. These groups make up a tiny fraction of the 7.4 million American women, or one in eight, who suffer from infertility.
Reinecke, from AFP, has 23-year-old twin daughters as a result of the eggs she froze before chemotherapy for leiomyosarcoma, a rare muscle cancer. A gestational surrogate carried the twins on her behalf. She says she and her husband were lucky that they could afford the high cost of these options—a point echoed by Tom Whiteside, another cancer survivor who benefited from fertility preservation. Whiteside’s nine-month-old daughter, Rosemary, was conceived using sperm that he froze prior to starting treatment for Hodgkin’s lymphoma in 2006, at age 26, in Lubbock (he’s since moved to Austin). “My oncologist said I would have a 90 percent chance of sterility,” Whiteside remembers, “and that I needed to bank my sperm.” When he asked how that process worked, his doctor admitted he didn’t know. Feeling overwhelmed and confused, Whiteside turned to Google to find a clinic. He paid out of pocket to freeze his sperm, and estimates that he and his wife have spent about $5,000 to $7,500 on storage fees and IVF. “I was super lucky,” he says. “The coverage, for me, was a nice-to-have, but for most people it would be a need-to-have, and for women it’s much more expensive. It’s crazy that this isn’t covered.”
Freezing sperm is a relatively simple process, requiring only a brief (if awkward) trip or two to a fertility clinic’s collection room. For those who want to freeze their eggs, it’s a grueling ordeal that involves pumping one’s body full of hormones in order to mature dozens of eggs at once. Patients must inject themselves daily in the stomach for about two weeks, alongside making frequent visits to the clinic for ultrasounds and bloodwork. Once the eggs are ready for collection, a patient administers a trigger shot at a crucial time specified down to the minute. Then a doctor retrieves the eggs under anesthesia. Even when insurance covers this process (which it usually does not), the costs for medications are almost always out-of-pocket. Many patients buy the drugs online from abroad or share them in social media groups to save money, though this is technically illegal. Then there are the annual storage fees. In total, the average egg-freezing patient will spend at least $30,000.
Of course, this is all assuming that current IVF procedures remain legal in Texas. After the Supreme Court’s decision overturning Roe v. Wade, some patients rushed to ship their frozen embryos to other states, worrying that an attack on IVF could be next. The process requires fertilizing extra embryos that are later discarded, donated, or used for scientific research; some antiabortion advocates object to this step. Though Texas antiabortion groups have said they’re unlikely to take aim at assisted reproduction anytime soon, lawmakers in Arkansas, Kansas, and West Virginia recently proposed legislation that would ban embryo disposal.
Kaylen Silverberg, medical director at the Texas Fertility Center in Austin (and, full disclosure, my own former doctor), says his practice treats “a couple hundred” cancer patients each year. He describes the work as some of the most rewarding of his career: “I tell every single cancer patient that she is a superhero.” Silverberg says it’s not unusual to meet cancer patients who want to preserve their fertility but cannot pay for it, though the center discounts costs for this group and refers patients to the Livestrong Foundation’s financial aid program. But these discounts aren’t enough for everyone who needs help. “We believe that this is a fundamental right, that everybody who wants to have children should be able to,” Silverberg says. “There is a huge opportunity here for the Legislature to do the right thing for the women of Texas who just want to have their lives back.”
Rijon Charne, who froze her eggs in Houston after being diagnosed with Hodgkin’s lymphoma at age 26, points out that her medication for other side effects of cancer treatment was paid for by insurance. “I didn’t have to worry about if my nausea medication would be covered,” says Charne, who is now an attorney specializing in fertility law. “Why should this be different?” She paid for egg freezing with financial aid from Livestrong and the Walgreens Heart Beat program.
Reinecke draws an analogy to reconstructive surgery for breast cancer survivors, which is covered thanks to federal legislation. “Prior to 1998, when WHCRA [the Women’s Health and Cancer Rights Act] was passed, there was a patchwork of state laws, and eventually it reached a tipping point,” Reinecke says. “We think this is similar.”
Collier isn’t dismayed that the fertility preservation legislation has failed twice. Her bill was referred to the Insurance Committee and now awaits a hearing. “It’s a new day, and we’re seeing bipartisan support on this,” she says. “Texans say they’re all about supporting families and life. So this should be a no-brainer. . . . Hopefully, the third time will be the charm.”
Claudia Hopper, who couldn’t afford to freeze her eggs, was lucky. Though cancer treatment did seriously harm her reproductive health, she was eventually able to have three children after undergoing multiple surgeries and rounds of IUI (intrauterine insemination) as a patient of Silverberg. Still, if egg freezing hadn’t been out of reach financially, “I absolutely would’ve done it in a heartbeat,” she says. “It would have been one less thing to worry about, when we were already so worried about saving my life.”