When Victoria Dzorka learned that she had Hodgkin lymphoma in January 2017, she sat down to write out her questions for the oncologist. At the top of the list was a concern about how the treatment might affect her future fertility.
Dzorka had just watched her sister go through treatment for another cancer, and cried with her after doctors told her the treatment might leave her infertile. So Dzorka, 25 and newly married, knew firsthand that infertility was a potential side effect of cancer treatment. She wanted to explore ways to preserve her ability to have biological children before starting chemotherapy.
The best way to hedge against the ovary-aging effects of chemotherapy, the fertility doctor told her, would be to squeeze in an in vitro cycle before her treatment and make embryos with her husband’s sperm. The catch: The IVF cycle had to start the next business day, and she needed to show up with $15,000 in cash.
Dzorka was a grad student with no income in Roseville, California, and she knew she personally couldn’t come up with that kind of money. Dzorka’s mother, while supportive of Dzorka’s wish to have children, also couldn’t afford the price tag.
Dzorka’s life was on the line, and cancer treatment couldn’t wait while she tried to raise funds for the IVF procedure. She decided to go ahead with the chemotherapy after assurances that the fertility doctor would do everything to help her conceive after her cancer was treated.
Her six-month chemotherapy regimen is over and she’s continuing to recover. Specifically, Dzorka, now 27, is waiting on word from her doctors about a clean bill of health, which would give her the clearance to start trying to have a family.
But until that happens, she said, knowing that it might be difficult for her to become pregnant in the future makes it hard to watch other people in her life move forward with pregnancies, birth and parenthood. She especially hates fielding those seemingly innocuous questions, commonly aimed at young married couples, about when she plans to have children.
“You’re always reminded of the potential that [fertility] has been taken,” she said. “I can pretend that I’m fine and that I don’t think about it and that I am totally accepting of one or the other realities, but obviously I would prefer to not have had to make that decision.”
Anywhere from 20 to 70 percent of people who undergo cancer treatment will be rendered infertile by chemotherapy or radiation, and those who are treated with surgery that removes organs like the ovaries or testicles are rendered sterile. This range of potential effects on fertility means that some will struggle to conceive, and might never be able to have genetically related children or carry a pregnancy to term.
Several studies comparing the IVF results of cancer patients who do IVF either before or after chemotherapy demonstrate how crucial it is to bank eggs or embryos before undergoing treatment that can be toxic to the sex organs. For instance, women who did IVF after chemotherapy were more than five times more likely to have the cycle canceled due to a complete lack of ovarian response to the fertility drugs, compared to those who never had chemotherapy. Another comparison showed that women who did fertility preservation before cancer treatment produced more eggs and embryos than those who did IVF after cancer treatment.
Experts say that cost is the most significant barrier between cancer patients and fertility preservation. On GoFundMe, a platform people use to raise money for personal goals, 73 campaigns mention the phrase “fertility preservation” in their appeal for money ― a drop in the bucket compared to the approximately 70,000 reproductive-age people who are diagnosed with cancer every year.
While treatment for infertility is expensive, it is sometimes covered by insurance. Fertility preservation generally is not, explained Barbara Collura, president and CEO of the nonprofit infertility advocacy group Resolve. For men who want to save sperm, collection and storage cost only a few hundred dollars. But for women, freezing eggs can cost $10,000 or more.
This means most female cancer patients of childbearing age in the U.S. are faced with the prospect of having to rapidly raise thousands of dollars to freeze eggs or embryos before chemotherapy begins ― usually within days or weeks of a cancer diagnosis, itself a disorienting and expensive life event.
As a way to fix this oversight, fertility advocates like the Alliance for Fertility Preservation and the group that it co-founded, the Coalition to Protect Parenthood After Cancer, have begun lobbying state legislatures to change the definition of infertility to include people about to undergo cancer treatment. These bills, which have already become law in Rhode Island, Connecticut and Maryland, amend pre-existing infertility treatment mandates to include people who technically are not infertile, but who will be rendered so by cancer treatment.
Why insurance companies don’t typically cover fertility preservation
Insurance coverage for infertility in general is extremely spotty in the U.S. Fifteen states have passed laws that require private insurers to cover or offer coverage for infertility diagnosis and treatment ― though not all of them require insurance plans to cover in vitro fertilization, the gold standard of infertility treatment.
Fertility preservation is even less likely to be covered, for a number of complex reasons. First, egg freezing was considered experimental until 2012, when the American Society of Reproductive Medicine named it a standard infertility treatment, and insurance companies tend to shy away from covering experimental treatments.
And only about 5 percent of new cancer diagnoses in the U.S. are among people ages 15 to 39 ― those most likely to need fertility preservation ― meaning this was a small patient population that may have flown under the radar for a long time.
Finally, people diagnosed with cancer don’t meet the medical definition of “infertility,” which is the inability to get pregnant after a year of unprotected sex. Instead, in the eyes of insurers, they are merely about to become infertile. This technicality precluded fertility preservation coverage in states that mandate infertility treatment coverage. To expand infertility coverage to include cancer patients, legislators in Connecticut, Rhode Island and Maryland amended their laws to include people for whom fertility treatment is a medical necessity.
New York and Delaware are also debating similar legislation, and a bill in Illinois has passed both houses and is on the governor’s desk for consideration. At the federal level, Sen. Cory Booker (D-N.J.) and Rep. Rosa DeLauro (D-Conn.) have introduced legislation that would require private insurers, as well as some government plans, to cover infertility treatments in general, including for people about to undergo cancer treatments.
While good news for infertility advocates and cancer patients, these state amendments, if passed, would still not guarantee universal coverage of fertility preservation procedures. State insurance mandates only apply to private health plans that are fully insured, as opposed to self-funded health plans run by corporations, or people who buy insurance individually. And of course, they don’t apply to federal health plans like Medicaid or Medicare.
This means that only about a quarter of the people in Connecticut and Rhode Island will have the new benefit. In Connecticut, about 54 percent of the population gets health insurance through an employer, and of these, about 50 percent have coverage from fully insured plans and thus would benefit from this law. In Rhode Island, these numbers are 51 percent and 53 percent, respectively.
Cancer patients on a federal health plan wouldn’t have access to this fertility preservation procedure ― something that Booker and DeLauro’s bill addresses by mandating coverage for people who get their care from Tricare (the military benefits program), the Veterans Administration or the Federal Employees’ Health Benefits Program.
Medicaid is not included in the proposed legislation. This may be due to Medicaid’s historical role as a short-term, safety-net insurance plan for the poor, according to Sara Rosenbaum, a law professor at George Washington University’s Milken Institute School of Public Health.
“Medicaid is not going to pay for poor women to have more children,” Rosenbaum said. “I just think that the sense of Medicaid among most policymakers is that it’s a [short-term] gap program.” While Medicaid coverage has expanded, it’s very difficult to get and stay on it. Most adults who have Medicaid are off it in three or four years.
The new legislation faces resistance from the insurance industry, which has voiced concerns about costs. But insurance policy experts say there’s likely little reason to worry, given the small projected increase to insurance policy fees every month.
America’s Health Insurance Plans, the insurance industry’s largest lobbying group, says it is reviewing the impact of legislation in Rhode Island and Connecticut, according to spokeswoman Cathryn Donaldson. She expressed concern about the recent trend in a statement to HuffPost, saying it could increase premiums for consumers.
But Dr. Peter Hollmann, director of the Executive Master of Healthcare Leadership Program at Brown Medicine and former chief medical officer of Blue Cross & Blue Shield of Rhode Island, says it’s unlikely these laws would noticeably drive up premiums, because of how few people would use them and how relatively inexpensive the procedures are.
“This is just not the type of thing that’s going to add up,” Hollmann said. “The number of people that are going to work on infertility treatment is going to be a pretty small number of people.”
Indeed, a 2017 study commissioned by the Maryland Health Care Commission to analyze the effect of a fertility preservation mandate estimated that about 2,000 people in Maryland ages 10 to 44 may become infertile after a medical treatment every year ― and that efforts to preserve their fertility would cost each insurance holder an extra 24 cents per month.
Sperm collection costs an average of $500, according to the Maryland study, while an IVF cycle, which women can do to preserve their eggs or create embryos with a partner, costs an average of $12,400, according to the American Society for Reproductive Medicine.
The fertility preservation laws, however, do not mandate coverage for the long-term cost of storing eggs, sperm and embryo, which can cost several hundred dollars a year.
How fertility preservation can change the experience of cancer treatment
Because the laws are still so recent, there isn’t any official data on how many people have taken advantage of the new benefit. But anecdotal evidence from fertility centers in the two states where the laws have taken effect suggests that patients are benefiting from the new coverage.
Compared to the first quarters of the past two years, there has been no change in fertility preservation consultations or cycles at the Center for Advanced Reproductive Services, Connecticut’s largest fertility clinic, according to CEO Paul Verrastro.
“Although having the [law] is a good thing ― and it certainly puts people at ease a lot sooner ― we had pretty good utilization before the change went into effect,” Verrastro said of his clinic, which offered deep discounts and financing plans to cancer patients before the state mandate was on the books.
In Rhode Island, where the law has been in effect since July 2017, referrals for consultations and egg retrieval cycles have increased three- or fourfold, according to Dr. Eden Cardozo, who works at the Women and Infants Fertility Center.
Before the law went into effect, cancer patients would be referred to Cardozo’s clinic, which is the only fertility clinic in Rhode Island, but then would decline an initial consultation upon learning that their insurance wouldn’t cover the appointment. This is what initially spurred Cardozo to help craft the legislation.
The fruits of Rhode Island’s legislation can be seen in Thomeeka Speaks’ case ― a major contrast to Dzorka’s story.
The 22-year-old Rhode Island resident had no means to pay for a cycle of egg freezing in between her chemotherapy cycles for acute lymphoblastic leukemia. Speaks, who is the youngest of five children and an aunt to five nieces and nephews, knew she wanted to be a mother one day, and didn’t hesitate when doctors asked if she wanted to take the time to freeze her eggs. Because of the new state amendment, her cycle was fully covered.
Speaks said the coverage was so streamlined that she didn’t have to chat with the insurance company once, or deal with any logistical problems. In fact, she was surprised to learn that the state legislature had only recently changed the law to make sure fertility preservation measures were considered a standard benefit for cancer care.
The movement to ensure fertility preservation access for cancer patients continues nationwide, and is being led by the people most affected. After her treatment, Dzorka decided to write her graduate thesis on oncofertility preservation issues, and testified before the California Senate health committee in favor of SB 172, a bill that would have required insurance companies to cover fertility preservation treatment when medically necessary.
That bill died in the state Senate, but the fight isn’t over. Advocates still hope that fertility preservation coverage can be achieved by other means besides crafting legislation, in California and elsewhere. For instance, the fertility preservation coalition is also trying to approach different state insurance commissioners directly to see if coverage can be achieved without a state law, and they hope to attract the attention of larger cancer advocacy organizations to shed more light on the issue.
Dzorka thinks these laws are vital ― not just for women who struggle to afford the fertility preservation, but for cancer patients who are never even asked if they want to consider fertility treatment in the first place. Making fertility preservation a standard part of cancer treatment will help to make care more equitable in general, and less reliant on a doctor’s personal judgment about someone’s ability to pay.
“There are women who maybe look different than me, or come from a different background than I did, whose doctor may have made an assumption about them,” she said. “[That] they weren’t worthy of that conversation, or just assumed that they wouldn’t even be able to pay ― so why even bother to talk to them about their fertility?”
CORRECTION: A previous version of this story incorrectly indicated that Paul Verrastro was a doctor, and misstated his title as COO of the Center for Advanced Reproductive Services. He is the company’s CEO.
- This article originally appeared on HuffPost.