Angela Thomas thought her breast cancer diagnosis and the double mastectomy that followed were the most traumatic things she would ever experience.
Then, when the 32-year-old actress sought fertility treatment so she could have a baby after the cancer care was finished, her insurance company refused to pay.
“Trying to figure out … how I am going to finance this has been more stressful and more difficult than the actual surgery,” said Thomas, who is being treated at the University of Southern California’s Keck Hospital. “It is really daunting and extremely upsetting.”
Thomas didn’t need chemotherapy, which can affect fertility. But her doctors told her she shouldn’t get pregnant for the next five years, while she was on a cancer-related medication, and that having a healthy baby could be harder in her late 30s.
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About 70,000 people between the ages of 15 and 39 are newly diagnosed with cancer each year, and many risk infertility as a result of chemotherapy, radiation, and other treatments. There are a growing number of options to preserve fertility, but they can cost tens of thousands of dollars and are usually not covered by health plans.
“It is not cheap for anybody, but for a young adult this is really tough,” said Pam Simon, a nurse practitioner and program manager at the Stanford Adolescent and Young Adult Cancer Program. “They have just started their career and cancer has thrown a big wrench into that. Not having this covered is a big deal.”
California state Sen. Anthony Portantino proposed legislation this month that would require insurers beginning in 2018 to cover fertility preservation services when necessary medical treatments may cause infertility. Covering this type of care is the “right thing to do” for young patients, many of whom are facing life-threatening diagnoses, Portantino said.
“You should think about getting healthy,” said Portantino. “You shouldn’t have to worry about losing your fertility.”
A similar bill passed both houses in 2013 but was vetoed by Gov. Jerry Brown, who wrote that he did not want to mandate additional benefits given the “comprehensive package of reforms that are required by the federal Affordable Care Act.”
Legislators across the nation also have proposed bills in recent years to make it easier for patients facing fertility-threatening treatments to get such care. Legislation has been introduced in New York, Hawaii, Connecticut, and elsewhere.
The California Association of Health Plans has not taken a formal position on Portantino’s bill, but spokeswoman Nicole Kasabian Evans said the insurers’ trade group believes it is a bad time to mandate such coverage. “There is a lot of uncertainty in our health care system right now and we shouldn’t be adding costs until we know more about the changes that are coming our way,” Evans said.
Medical technology is expanding quickly, giving patients a growing number of choices to preserve their fertility, said Laxmi Kondapalli, a Colorado-based reproductive endocrinologist and cancer and fertility expert. The most common procedures are freezing eggs, sperm, or embryos, she said.
There also are experimental treatments such as freezing part of the ovarian tissue, but they haven’t produced many successful pregnancies.
Access to treatment varies based on where patients live and what kind of insurance coverage they have, Kondapalli said, and many patients have to pay at least some of the costs out of their own pockets. The expenses include collection and storage for both women and men. Women have the added expense of drugs that stimulate production of the eggs as well as ultrasounds, blood tests, and medical visits. Kondapalli said she would like to see more states requiring insurers to cover this kind of care.
“The financial burden can sometimes be overwhelming for patients, especially when they are starting to think about undergoing chemotherapy, radiation, and cancer surgery,” she said.
Alison Loren, an associate professor at the University of Pennsylvania’s Perelman School of Medicine, noted that insurers have no problem paying for wigs when patients lose their hair, or for implants when patients need breast tissue removed.
“Those are well-recognized complications of cancer therapy,” said Loren, who treats patients with leukemia and does bone marrow transplants. “So is fertility, and it should be covered.”
Medical providers don’t always talk to patients about their options, she said. Oncologists and others feel bad telling their patients they have cancer. Adding that they also may not be able to conceive is a “tough message to send,” she said.
A survey showed that less than half of US doctors informed cancer patients of childbearing age about fertility preservation, according to a 2011 study. Among the reasons is that doctors worry patients might not be able to afford the procedures.
The American Society of Clinical Oncology issued guidelines in 2006 to urge providers to talk about fertility preservation with cancer patients and to refer them to specialists. Even having the conversation about fertility options can help reduce stress and worry, said Loren, who helped update the guidelines in 2013.
“When people are diagnosed it is such a whirlwind,” she said. “There is a long to-do list. On that to-do list should be to discuss fertility.”
Several nonprofit organizations, including the Livestrong Foundation, help pay for the medications and procedures. Advocacy groups such as the Alliance for Fertility Preservation also work to raise awareness and help improve access to care.
Joyce Reinecke, the executive director of the alliance, was 29 years old when she was diagnosed with cancer. Before beginning treatment, she decided to freeze embryos composed of her eggs and her husband’s sperm. Reinecke said she and her husband were fortunate they could afford the treatment, which cost more than $10,000.
“If we were not able to pay for that, it would have been devastating,” said Reinecke, who now has 16-year-old twin daughters who came from those embryos.
Reinecke said young patients simply can’t refuse cancer treatment that could save their lives, even if it poses a serious threat to their fertility. “To have to give up the opportunity to have biological children when there are methods of intervention that can prevent that loss is not fair,” she said.
Thomas, the actress, received help from two nonprofits to cover some of the costs, but she still has to come up with nearly $4,000 of her own money.
She said it’s as if she needed the permission of her insurer to have kids someday — and they said no.
“It is disappointing and hurtful that I have to even ask,” she said.
This story was originally published by Kaiser Health News.