Roshni Kamta remembers that spring day two years ago when she left for work on her usual crowded New York City subway line, carrying precious cargo. Inside the light white bag, which she stored inside the refrigerator at work, were her egg freezing supplies — syringes and the hormone medications she would inject into her body at work to maintain her medicating schedule.
Fertility preservation wasn't something that Kamta, then just 22 years old, had ever thought about, let alone planned for. But a shocking breast cancer diagnosis a few months earlier had transformed everything. After some quick decisions, she found herself poised to undergo an egg retrieval procedure days before embarking on cancer treatments.
These treatments — radiation, surgery and some types of chemotherapy — can damage fertility. Yet procedures to preserve fertility can exceed $15,000. Fertility advocates say only 10 states mandate that insurance companies cover these costs for patients whose medical treatments will likely render them infertile. The result is that many cancer patients are stuck with crushing out-of-pocket costs in the brief time they have before starting treatments.
The barriers to access amount to a stressful financial burden for nearly 88,000 young adults the American Cancer Society says are diagnosed with cancer in the U.S. every year. That's where Kamta, now 24, found herself in 2019. She said her insurance company denied her coverage after her diagnosis.
"Cancer wasn't my choice," she said. "I had no control over this, and now they were telling me they can't help me with something for the future? Just the way they word things in their policy made me angry."
Kamta turned, as many do, to her only option for aid — a nonprofit. She applied for and was approved for a grant by The Chick Mission, a New-York based organization that pays the full cost of fertility preservation procedures for women with cancer. The Chick Mission has plans to expand its program with 100 need-based grants in six states for women under age 40 who are newly diagnosed with cancer. All told, after negotiating lower rates with clinics, it expects to spend $650,000 on the grants.
Advocates aren't sure how many nonprofits like it exist, and they say the need far exceeds the availability of aid. Joyce Reinecke, executive director of the Alliance for Fertility Preservation, notes that some other organizations — including Team Maggie For A Cure, based in Georgia, and Fertility Within Reach in Massachusetts — also offer financial aid. But most don't cover the full cost of treatment.
In 2004, the nonprofit Fertile Hope became the first nonprofit to offer financial assistance to cancer patients. It was later acquired by The Livestrong Foundation, a cancer charity that now administers the program under the name "Livestrong Fertility" and has become one of the leading organizations that provide free or discounted services and medications. Greg Lee, Livestrong's president, says the charity has saved 14,000 couples about $76 million in costs.
While noting that these organizations can serve as a lifeline for the fortunate, advocates say that a system of dependence on a web of far-flung nonprofits is far from an ideal solution for cancer patients.
"Needing to know how to apply for a grant or crowd fund for your healthcare is not what our country should be doing," said Cynthia Pearson, executive director of the Washington-based advocacy group National Women's Health Network. Yet "sometimes it's important for people to step in and make a difference right away when that individual woman can't wait for a system or policy change."
That was Amanda Rice's reason for launching The Chick Mission in 2017 while undergoing treatment herself for breast cancer. The organization emerged from her own stress-filled frustrations with her insurer, UnitedHealthcare, which informed her, she said, that she didn't meet its standard definition of infertility. She said she was told that to qualify for coverage, she needed to try for six months to become pregnant.
At the time, Rice was on the verge of a divorce and couldn't afford to wait that long for her cancer treatments.
"I can't stop for six months and try to have a baby," she said.
Her anger and anxiety would boil over, she said, and lead to depression.
Tracey Lempner, a spokeswoman for UnitedHealthcare, didn't comment on Rice's specific case. But she said in a statement to The Associated Press that in states that don't mandate coverage of fertility preservation, the insurer offers "customers the choice to include coverage for fertility preservation as part of their benefit plan."
Lempner said UnitedHealthcare regularly reviews its coverage "to ensure it is consistent with other plans in the market." Starting in July, she added, "fertility preservation will be available as a standard benefit" on certain UnitedHealthcare plans.
For now, many insurance plans in the United States don't cover fertility preservation for young cancer patients. Because the costs are so steep, Mindy Christianson, the medical director of the Johns Hopkins Fertility Center, says some of her patients have declined the procedures.
"A lot of the studies have shown that women and girls later on regret not doing fertility preservation," she said.
For Rice, who was diagnosed with cancer three times since 2014, two insurance coverage denials that she says she received left a psychological scar. She paid to freeze her eggs, and launched The Chick Mission with her eyes fixed on grants and advocacy.
The Chick Mission has received some support from foundations but is seeking an institutional donor. Most of its funding comes from grassroots donations amounting to $5,000 or less. With that money, it has helped women freeze at least 1,000 eggs. At least one woman, Rice said, has given birth.
"This is the insurance policy for them that their insurance wouldn't cover," she said. "We have a few more that are out of treatment, that are married and that are looking to start their families. And I think we will have more babies to come this year or early next."
The Chick Mission also works within a coalition of other organizations to advocate for state laws that would mandate that insurance companies cover such costs for cancer patients.
New York enacted such a law in 2019, though advocates say it isn't expansive enough because it applies only to large insurers' policies. The Chick Mission seeks to help women who fall through the cracks in that state — as well as in New Jersey, California, Colorado and Illinois. It has also extended its reach to Texas, where a similar bill is in the works, said Tracy Weiss, a cancer survivor who serves as the group's executive director.
As Reinecke sees it, momentum is on their side. She has seen an increase in support since 2017, the year Connecticut became the first state to pass a coverage mandate.
"People started to jump in and give support and help us," Reinecke said. "I do think going forward as a coalition of cancer and reproductive organizations has been helpful. It does make asking for this coverage easier over time."
With that in mind, advocates are holding out hope of helping enact a federal mandate one day.
"The ultimate goal of The Chick Mission," Weiss said, "is to be out of business."