The box reminded Ruby Barnes each time she returned to her Bountiful home. As she climbed the steps through the garage, she saw the label, “Ruby’s baby clothes.”
Barnes, 38, had collected the outfits while working retail jobs since she was 16. All she’d ever wanted to be was a mother. But after she was diagnosed with stage 3 rectal cancer in October 2018, doctors quickly put her on a course of chemotherapy and radiation, which would likely affect her fertility.
“Finding out I had cancer was scary," Barnes said. “Finding out I couldn’t have kids was astronomically more devastating.”
For many young cancer patients, “they see it as kind of a double hit,” said Dr. Joseph Letourneau, medical co-director of the University of Utah’s oncofertility program with Dr. Douglas Fair. “Each of those conditions, infertility and a new cancer diagnosis, have an extreme amount of distress associated with them.”
In the past, patients may not have learned their fertility was impacted until after finishing treatments. But as cancer survival improves, the goal of the U.'s program, which was created in 2018 and merges the fields of oncology and fertility, is to provide patients information upfront so they can take any steps they may need.
The program — the only one in Utah focused on the patient care, education and research of oncofertility — is a collaboration with the Huntsman Cancer Institute, Primary Children’s Hospital and Intermountain Healthcare.
Letourneau and Fair estimate that 1,200 people ages 15 to 39 years old are diagnosed with cancer in Utah each year and potentially have to think about possible effects to their fertility. That number is probably closer to about 1,500 when factoring in younger children.
Cost is “one of the biggest barriers to [fertility] care,” Letourneau said, especially for women. Women can spend between $10,000 and $15,000 on egg freezing, while sperm banking ranges between $500 and $1,000, plus hundreds of dollars in yearly storage fees, according to the nonprofit Alliance for Fertility Preservation.
While some states require insurance companies to cover fertility treatments for cancer patients, Utah does not. Letourneau estimates that less than 10% of Utah insurers cover this. Most people have to pay thousands of dollars out of pocket.
“Many people use most or all of their savings to pay for just their oncology treatment,” Letourneau said. When you factor in fertility costs, “it’s something that people generally want to do” but can’t “because they can’t afford it."
Barnes would have had to pay $16,000 out of pocket for a surgery to move her reproductive organs out of the path of her radiation treatment. She then faced thousands of dollars for fertility treatments and medicines later on. She ultimately made the agonizing decision against trying to preserve her fertility before starting treatments.
But if insurance had covered the procedures, Barnes said, “I would have done it.”
‘Without a baby and in debt’
Questions about cancer and fertility vary from person to person, Fair said. Radiation in some parts of the body will have no effect, while radiation in the pelvis or certain parts of the brain “will have extremely detrimental effects on your fertility,” he said.
About 90% of patients of the U.’s oncofertility program have cancer, while the rest have a medical condition and need treatments that put them at risk for infertility, Fair said, such as sickle cell anemia or lupus.
Amanda Jensen, of Sandy, was diagnosed in December 2018 with aplastic anemia, a condition in which the body stops producing enough new blood cells. “It’s not a cancer, but it’s basically treated like one,” she said. Jensen underwent chemotherapy before a bone marrow transplant.
Before doing that, doctors talked to Jensen, who’s 26, about her risk of infertility. “I’m a single mom of a 5-year-old, so that just crushed me. I want to be able to have kids still,” she said. Jensen qualified for some discounts for her medications, but she’s still paying off the $11,000 tab for her in vitro fertilization treatments. That’s been tough to do, since she was unable to work during her illness.
Barnes felt pressure “to make all these life-changing and lifesaving decisions in just a matter of weeks” after being diagnosed. Rather than taking the costly fertility route, she happily considered adoption as an alternative, but she worried about her chances with her history of a cancer diagnosis.
She struggled with the decision, but Barnes couldn’t justify paying thousands of dollars for something that may not work. Her cancer treatments were already draining her savings, and if the fertility treatments failed, “then I’m there without a baby and in debt.”
“I decided that I just have to move forward and save my own life, which is just a hard enough decision on its own, because, for me, losing the opportunity to have children made me feel like I wouldn’t have a purpose in life,” Barnes said through tears.
Barnes vividly remembers her first radiation appointment. She laid down on a table, and the medical staff made sure she was comfortable before leaving the room. Then, Barnes heard the machine start up. She tried not to move, but she “could feel the tears pooling up in my ears.”
“That was probably the most tragic day of my life," she said, “because … it felt like I was attending the funeral of my children.”
Now cancer-free, Barnes is thankful for the “incredible” medical staff who she said saved her life. But that memory from her first radiation treatment lingers.
“Here I am. Great, I’m still alive, and I’m super grateful for that,” she said. “But now I have to sort of recalibrate everything in my life because I had planned on having kids. I had a trajectory in mind. And now it’s completely been taken away from me.”
‘Integral part of cancer treatment’
When a person has breast cancer, “we, as a society, have decided that our insurance companies will help to pay for the reconstruction of the breast,” Letourneau said. Or, if a person loses a limb from a tumor in their extremities, insurance covers a prosthesis, according to Fair. The same should go for fertility preservation, they argue.
National medical groups, including the American Society of Clinical Oncology and the American Society of Reproductive Medicine, “have all published policy statements affirming that discussion about fertility preservation is an integral part of cancer treatment,” according to Fair. And 10 states require some sort of insurance coverage of fertility treatments for cancer patients, said Joyce Reinecke, executive director of the Alliance for Fertility Preservation.
One of the biggest barriers to expanding coverage has been resistance from insurance companies and states to the idea of a mandate, Reinecke said. But Fair and Letourneau hope Utah will join the list.
“In Utah, it’s a very family-centric culture,” Fair said, and this is an issue he feels a lot of people here could support. “We have a lot more patients we need to reach. And we need to make, [for] the ones that we do reach, the care a lot easier to get and less burdensome."
Barnes and Jensen agree. “I don’t understand why insurances don’t cover it because it’s like I didn’t choose to have this disease,” Jensen said.
By sharing her story, Barnes said, she hopes she can help make treatment more affordable so other people don’t have to experience what she went through. If she’s able to do that, it “will definitely help me heal,” she said.
“Cancer is nasty enough as it is and terrifying anyways," Barnes said. “And it would be really nice if fertility was taken seriously.”