The fight to keep parenthood possible

Cancer survivors have advanced fertility preservation for everyone

Lindsay Beck on her wedding day (to Prince Charming!) with the doctors that saved her life.

It was 1999 and Lindsay Beck was fresh out of college. Dot com companies were booming and the future was limitless. Everyone she knew was hustling, writing business plans, and raising dollars.

On a Friday afternoon she went to her doctor for a canker sore on her tongue. He did a quick test and offered pain medication that Lindsay declined—she had a marathon to run that weekend and didn’t want anything to dull her senses.

On Monday the doctor’s office called. They asked Lindsay to come in again and this time, they said, bring someone with you.

“Obviously, as a doctor, you know what it means when they say to bring someone,” she told me when we spoke a couple weeks ago “But I was 22. I didn’t.”

She had “carcinoma of the tongue”— a rare, aggressive, potentially deadly cancer.

Survivors often describe confrontations with mortality in dissociative terms. There was immediate talk of tactics. Surgery and radiation would be needed. Perhaps chemo too. But as the colossus of American medicine descended on her, Lindsay strained to imagine the aftermath. Who would want to kiss her with tongue cancer? How would she meet Prince Charming? Would she ever have kids?

Her clinicians found her concerns perplexing. They were focused on helping her live. But Lindsay was focused on what gave her life meaning.

Grasping at hope

Cancer journeys progress in fits and starts, a lot of hurrying followed by a lot of waiting. Lindsay was given radiation to shrink the tumor followed by an operation that removed a portion of her tongue. The result, to her relief, was remission. For the moment she escaped cancer and kept her fertility intact. But just a few years later, as sometimes happens, the cancer crept back. This time, her clinical team told her that chemotherapy would be unavoidable.

Chemo side effects are generally familiar. Cancer medicines attack rapidly dividing cells indiscriminately, including cancer cells, but also hair (hence the baldness), bone marrow (hence the sensitivity to infection), and the lining of the gut (hence the nausea). Less publicly visible are the impacts to cells that produce sperm and eggs. Lindsay’s chemo was likely to cause permanent damage to her ovaries.

Again, her thoughts turned to her future. She did not want to be sterile. Lindsay told her doctors that she would not start treatment unless they could promise her a way to have children some day.

“Everyone was up in arms. My doctor called me back, like, you can't do this. We want you alive in five years to have a baby. You can't forego your best chance of survival. You go from 50/50 odds, to 90/10,” said Lindsay. But she held firm. Her oncologist, at a loss, told her to look into whatever it was Lance Armstrong had done.

At the time, Lance Armstrong was almost the same age as her and had become a national icon. After being diagnosed with metastatic testicular cancer, Armstrong went on to beat his cancer and win the Tour de France seven consecutive times. He also miraculously fathered multiple, adorable children. Glossy photos of him with his new baby plastered every magazine. Armstrong, it turned out, had banked his sperm.

In a whirlwind, Lindsay called every fertility clinic she could find in the Bay Area. On her fifth call, to Stanford, she found a physician who had just been approved by the FDA for a clinical trial with cancer patients. Eleven days later, in hard-won kismet, her eggs were frozen.

Arresting time

For generations, reproductive-age women have been acutely aware of the so-called “biological clock” ticking slowly at first and then suddenly faster. For cancer patients this acceleration is radical, compressing what they thought was years into mere weeks.

My friend Dr. Pietro Bortoletto is the co-lead of the oncofertility program at Boston IVF. He tells me that the moment he is notified of a reproductive-age person with cancer there is a “SWAT” team that breaks through the notoriously complex scheduling systems of his fertility clinic to ensure they are seen right away, even if it means staying well after hours. He tells me, “it’s not uncommon for a patient diagnosed with cancer on a Monday to begin their IVF cycle on a Friday.” Everyone understands that time is of the essence.

It’s worth noting that time is of the essence for many women without cancer as well, albeit on a different scale. When Lindsay froze her eggs the procedure was experimental and rare, but between 2010 and 2015 the number of egg freezing cycles ballooned by 880% in the U.S. Today, tens of thousands of women in the United States choose to freeze. Some of them have cancer. But the majority do not have an urgent medical need. They simply want freedom from the clock.

Two years ago Marcia Inhorn, a Yale anthropologist, interviewed 150 women who made this choice. She captured her observations in a book titled Motherhood on Ice dedicated “to all the thirty-something single women still hoping for partnership, pregnancy and parenthood.” Using meticulously collected data, she pushes back on the assumption that their choice is rooted in a desire to put careers before families. Instead, she shows–provocatively– how women are increasingly “left stranded" by a lack of available or suitable partners to have children with.

Regardless of the anthropological reasons for the spike in demand, it is made all the more remarkable by the high willingness to pay. Egg freezing is expensive. Each cycle costs $20,000, and it may take multiple cycles to get enough eggs. Storing the eggs can run $1000 a year. Using those eggs in the future is another $5000. All-in, a person paying out of pocket to have children via egg freezing can easily spend $50,000 or more.

Because 96% of health plans do not cover egg freezing for non-medical reasons it simply isn’t affordable for many people. In recent years, as many as 40% of global employers have stepped in to offer fertility benefits–including egg freezing–on their own. In fact, I’ve been surprised by the number of employers across industries I’ve spoken with who lead with egg freezing as an essential benefit to recruit and retain talent.

But there remains a cruel irony. Cancer survivors helped advance fertility preservation from experimental to mainstream, and from afterthought to societal trend. Yet for many cancer survivors, ineptitude within the American health system continues to put parenthood out of reach.

Fertile Hope

In waiting room after waiting room during her treatment, Lindsay looked around at young peers and asked: did you freeze your eggs? Without exception, she was met with looks of shock. In 2006, only 26% of young women with breast cancer reported they were counseled about their fertility options. In 2023, that number grew but was still just 41%. Parallel research suggests that when counseled, one in five women with breast cancer would modify their treatment, even choosing less effective methods or forgoing treatment altogether to protect their fertility.

For all of the cancer survivors who never got a chance to pursue parenthood, Lindsay founded an organization she called Fertile Hope. She coined the term “oncofertility” and changed medical guidelines to make fertility counseling a standard part of discussing cancer treatments. Then she created the first “Adolescents and Young Adults” designation within the American Cancer Society. And she persuaded the National Cancer Institute to introduce an Office of Survivorship—to advocate for that crucial, magnificent “beyond” of life after cancer. (In a beautiful full circle story arc, Fertile Hope was ultimately acquired by Livestrong, the cancer advocacy nonprofit founded by none other than Lance Armstrong).

But progress in medicine did not automatically translate into progress in the health system. In 2014, Amanda Rice was in her thirties and working at a hedge fund in New York when she learned she had breast cancer. Unlike Lindsay, her doctors counseled her about fertility preservation, and she was less certain she wanted to be a mom. Still, given her profession and actuarial brain, she approached the decision to freeze her eggs like a “long dated call option,” which I loosely interpret to mean she knew she wanted to maintain the possibility.

When Amanda called her insurer to approve the procedure, they informed her she didn’t qualify because she wasn’t technically infertile yet. It was a catch-22: insurers would only cover her care if she carried an active infertility diagnosis, but she could only get that diagnosis if she allowed the treatment to sterilize her…at which point fertility preservation would be useless.

“That moment was the absolute worst part of my treatment. I guess I was living in la la land my whole life, but I couldn't fathom that somebody wouldn't do the right thing and would use a cruel loophole to deny me care,” Amanda told me.

Eradicating this loophole became the basis of her own organization, Chick Mission. Since its founding, Chick Mission has tirelessly convinced 18 states to mandate insurance companies cover treatment for oncofertility patients.

Today, look at a map of fertility legislation across the nation and you’ll see that 22 states plus the District of Columbia have passed some kind of law requiring private health insurers to cover fertility care. Ideologically, the states offering coverage could not be more different—both Oklahoma and Massachusetts mandated fertility preservation coverage for people with cancer in the same 2024 legislative session. For several of these states, extending coverage to patients with cancer is their first concerted effort at protecting fertility for all people.

Growing need

Last month, a shocking report from the American Cancer Society ate up headlines. Cancer rates are declining among most demographic groups. But among reproductive-age women, cancer is actually on the rise.

Breast cancer rates have inched up every year since 2014 with more women being diagnosed at younger ages. Likewise, cervical and uterine cancer have become more common. And uterine cancer is the only cancer for which survival has actually decreased over the past 40 years.

To make sense of this I spoke with Dr. Rebecca Miksad, the brilliant and ebullient Chief Medical Officer of Color Health. Color is a physician-led virtual cancer clinic that (like Maven) partners with employers to make populations healthier. Earlier in her career, as an academic physician, Rebecca was prolific with many more ideas than could fit into a single NIH grant. When mentors encouraged her to shrink her ideas down, she instead sought an environment she felt would allow her to move faster.

While serving as the Head of the Research Unit at Flatiron Health, Dr. Miksad’s team cracked a fundamental challenge in oncology: detecting when cancer is getting worse. Her key contribution was a novel method to back-calculate the intuitions oncologists have about when a person’s cancer is heading in the wrong direction–a concept coined “real world progression,” now used by the U.S. Food and Drug Administration as well as the European Medicines Agency.

When I asked Dr. Miksad to help me parse why cancer rates are going up in young women, she applied the same incisiveness: “Why is it happening? That is the million dollar question. But what I want your readers to know is, number one, it is not women's fault.”

She speculates that exogenous estrogen in the environment and our food may be a contributor: “The onset of menstruation is getting younger, and menopause is occurring later. So the total estrogen exposure during your lifetime is much higher, which can drive estrogen-related cancers such as breast cancer,” she said.

Her focus at Color, she told me, was to ensure we can act faster to prevent and manage cancer in the first place.

The whisper networks

Acting faster requires a more coordinated and responsive way of providing care, something our plodding brick and mortar health system perennially struggles with. An advantage of digital health is the ability to connect people to care quickly, to show up when they need and expect you to. At Maven we prioritize making sure members can meet or message with expert clinicians, often within an hour, no matter where they are, any time of day. And like Color, we deploy tests to support upstream diagnoses and action, and when necessary, we refer people for the in-person care they require.

But in-person care is where the system continues to break down. Despite phenomenal progress by advocates, half of the time newly diagnosed cancer patients still do not receive appropriate fertility counseling. When they do, referrals to fertility care are haphazard. Again and again the IVF doctors I spoke with told me they found oncofertility patients simply through word-of-mouth. Finding care and getting it paid for is dependent on a “whisper network” of hidden resources.

Maven’s fertility medical director, Dr. Wael Salem, told me: “A lot of times I'm just going out to cancer centers, giving my card and saying, if there's ever a patient that needs help with their fertility, call me, text me, I will get them in quickly.” Front-desk receptionists are trained to fit in oncofertility patients after normal hours. And because insurance plans in half of states still do not cover preservation, most clinics save a secret stash of leftover IVF medications specifically for them. It’s hard not to marvel at just how much of this infrastructure exists for no reason other than basic decency.

Basic decency is always appreciated but when the stakes are this high, better systems are preferred. Platforms like Color and Maven can help REIs and oncologists collaborate with greater ease, but more fundamentally, we need a health system that recognizes that saving lives is necessary but insufficient. Lindsay understood this intuitively when confronted with mortality in her early twenties: we all have goals other than simply living longer. What mattered most was meaning, connection, and fulfillment. (Of course parenthood isn’t the only pathway to fulfillment—but that’s a choice we all deserve to make for ourselves.)

Lindsay did end up meeting her Prince Charming and is now the mother of four children.

Recently I’ve been indulgently posting proud dad content of my eight year old’s skiing skills. Yesterday she texted, “Love your family ski stories on IG! … My only caution for you is when they fall in love with it early... they get really good and really fearless. Buckle up!!”

She followed this up with a video of her 16-year-old launching off a boulder and joyfully completing a full backflip. Personally, I think that fearlessness was probably just inherited from Lindsay herself.

What my team is reading, building, and thinking against:

• One of the most poignant reminders of how much building a family can mean to people is captured in Paul Kalanithi’s memoir When Breath Becomes Air. Paul was a neurosurgeon in his thirties whose life was cut tragically short by metastatic lung cancer. He wrote that neither he nor his wife Lucy believed that the purpose of life is to avoid suffering. And so, towards the end of Paul’s life, they decided to have a child.

  “Don’t you think saying goodbye to your child will make your death more painful?” Lucy asks him.

  “Wouldn’t it be great if it did?” he says.

  You can read the stunning excerpt from Paul’s memoir about his decision to start a family here. I also must say, the holiday card I receive every year from Lucy and her daughter Cady, usually with beaming sun-drenched faces, is among the greatest sparks of joy.
  

• You can follow the phenomenal work of Amanda Rice’s hyper-productive team at the Chick Mission here. Right now, they’re laser-focused on bills in New Jersey, New York, and Georgia.

• One of the best articles I’ve read on global declines in fertility appeared in the New Yorker this week. In it, author Gideon Lewis-Kraus asks economist Nicholas Eberstadt for an explanation. His response is awesome:

  
  “Anyone who offers a confident explanation of the situation is probably wrong. Fertility connects perhaps the most significant decision any individual might make with unanswerable questions about our collective fate, and so a theory of fertility is necessarily a theory of everything–gender, money, politics, culture, evolution. The person who explains it deserves to get a Nobel, not in economics but in literature.”

• It’s important to continue tracking the impacts of recent disruptions in global health. Tabinda Sarosh, the CEO of Pathfinder International told me this week that each day since the USAID funding freeze 352 women are not receiving critical antenatal care, 1,004 women will end up giving birth outside of a facility, and 1,081 will not receive critical postpartum care.
  
  Domestically, TPM recently confirmed that the CDC has ended the Pregnancy Risk Assessment Monitoring System. Since 1987, the system collected data on maternal behaviors, experiences, and health outcomes before, during, and after pregnancy. Maven uses PRAMS to benchmark our own impact. When I was a professor it was an essential tool that helped me explain and address the rising cesarean rate. I fear that without PRAMS, the U.S. is at increased risk of poor outcomes and worsening disparities. And I hope that USAID funding, CDC monitoring systems, NIH support for researchers, and so many other pillars of public health and science can be restored before long.