Nonprofits mobilize to protect the fertility of cancer patients

0

Roshni Kamta remembers that spring day two years ago when she left to work on her usual crowded New York subway line, carrying precious cargo. Inside the clear white bag, which she stored in the fridge at work, were her egg freezing supplies – syringes and the hormonal drugs she would inject into her body at work to maintain her treatment schedule. .

Preserving fertility was not something Kamta, then only 22, had never thought of, let alone planned. But a shocking diagnosis of breast cancer a few months earlier had changed everything. After a few quick decisions, she found herself on the verge of having an egg retrieval procedure days before embarking on cancer treatments.

These treatments – radiation therapy, surgery, and some types of chemotherapy – can affect fertility. Still, procedures to preserve fertility can exceed $ 15,000. Fertility advocates say only 10 states require insurance companies to cover these costs for patients whose medical treatments are likely to render them infertile. The result is that many cancer patients are faced with overwhelming costs in the short time they have before they begin treatment.

Barriers to access represent a stressful financial burden for the nearly 88,000 young adults who, according to the American Cancer Society, are diagnosed with cancer each year in the United States. This is where Kamta, now 24, ended up in 2019. She said her insurance company refused coverage after her diagnosis.

“Cancer was not my choice,” she said. “I had no control over it, and now they were telling me they couldn’t help me with anything for the future?” Just the way they phrase it in their policy made me angry.

Kamta turned, as many do, to her only aid option – 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 intends to expand its program with 100 needs-based grants in six states for women under 40 who have recently been diagnosed with cancer. In total, after negotiating lower rates with the clinics, he expects to spend $ 650,000 on grants.

Advocates don’t know how many nonprofits like this one 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 assistance. But most do not cover the full cost of the treatment.

In 2004, the nonprofit Fertile Hope became the first to provide financial assistance to cancer patients. It was later acquired by the Livestrong Foundation, a cancer charity which now administers the program under the name “Livestrong Fertility” and has grown into one of the leading organizations providing free or over-priced medicine and services. reduced. Greg Lee, chairman of Livestrong, said the charity saved 14,000 couples about $ 76 million in costs.

While noting that these organizations can serve as a lifeline for the lucky ones, advocates say that a system of reliance on a network of remote nonprofits is far from an ideal solution for cancer patients.

“Needing to know how to apply for a grant or a crowdfunding for your health care is not what our country should be doing,” said Cynthia Pearson, executive director of the Washington-based National Women’s Health Network advocacy group. Yet “sometimes it is important that people step in and make a difference immediately when this individual woman cannot wait for a system or policy change.”

This is why Amanda Rice started The Chick Mission in 2017 when she was undergoing breast cancer treatment herself. The organization emerged from its own stress-filled frustrations with its insurer, UnitedHealthcare, who informed it, she said, that it did not meet its standard definition of infertility. She said she was told that to be eligible for coverage, she had to try for six months to get 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 spill over, she said, and lead to depression.

UnitedHealthcare spokesperson Tracey Lempner did not comment on Rice’s specific case. But she said in a statement to The Associated Press that in states that do not require fertility preservation coverage, the insurer offers “customers the choice of including fertility preservation coverage.” as part of their social benefits plan ”.

Lempner said UnitedHealthcare regularly reviews its coverage “to ensure it is consistent with other plans in the market.” From July, she added, “fertility preservation will be available as a standard benefit” on some UnitedHealthcare plans.

At this time, many insurance plans in the United States do not cover fertility preservation for young cancer patients. Because the costs are so high, Mindy Christianson, medical director of the Johns Hopkins Fertility Center, says some of her patients have refused the procedures.

“Many studies have shown that women and girls later regret not having done fertility preservation,” she said.

For Rice, who has been diagnosed with cancer three times since 2014, two denials of insurance coverage she says she received have left a psychological scar. She paid to freeze her eggs and started The Chick Mission with her eyes focused on grants and advocacy.

The Chick Mission has received some support from foundations but is looking for an institutional donor. Most of its funding comes from local donations of $ 5,000 or less. With this money, he helped women freeze at least 1,000 eggs. At least one woman, Rice said, has given birth.

“It’s the insurance policy for them that their insurance wouldn’t cover,” she said. “We have a few others who are not receiving care, who are married and looking to start their families. And I think we’ll have more babies coming this year or early next year.

The Chick Mission is also working within a coalition of other organizations to advocate for state laws that would require insurance companies to cover these costs for cancer patients.

New York enacted such a law in 2019, although advocates say it is not broad enough because it only applies to the policies of large insurers. The Chick Mission seeks to help women falling through the cracks in this state – as well as in New Jersey, California, Colorado and Illinois. It has also expanded its reach to Texas, where a similar bill is in the works, said Tracy Weiss, a cancer survivor who is the group’s executive director.

For Reinecke, the momentum is on their side. She has seen her support increase since 2017, when Connecticut became the first state to adopt a coverage mandate.

“People started to step in, support us and help us,” Reinecke said. “I think going forward as a coalition of cancer and reproductive organizations has been helpful. This makes it easier to apply for this coverage over time.

In this spirit, the defenders remain hopeful of one day contributing to the adoption of a federal mandate.

“The ultimate goal of The Chick Mission,” Weiss said, “is to be bankrupt.”

___

The Associated Press receives support from the Lilly Endowment for coverage of philanthropy and nonprofit organizations. The AP is solely responsible for all content.

Share.

Leave A Reply