When Alice Crisci was only 31 years old and working as a management consultant in Los Angeles, she was diagnosed with breast cancer.
Then, just as that was sinking in, her doctor gave her more bad news: It was highly likely that chemotherapy would leave her infertile.
Crisci had always wanted to have children. But the chemotherapy, radiation and surgery could destroy her eggs and compromise her reproductive system.
Plus, she was about to spend years on powerful anti-tumor medications — taking away from her prime years for getting pregnant. Her doctors were eager to schedule surgery and start chemotherapy, and she needed to plan quickly.
Her 2008 diagnosis kicked off a flurry of research and high-stakes decisions.
“I had to decide on surgery, decide on the type of reconstruction, decide on the type of treatment in terms of chemo and the follow-up, and decide on fertility preservation, decide on a sperm donor,” said Crisci, who is 41.
“It's not just so simple as to do a lumpectomy or a mastectomy. Do I do a single or a double? Do I do fertility preservation or not? Do I do eggs alone or eggs and embryos? Do I split my cycle?”
A lifetime of big decisions
It's like this for a lot of cancer patients in their childbearing years — a lifetime of big decisions crammed into a couple of weeks, while oncologists urge them to hurry up, schedule surgery and begin chemo.
It used to be that cancer patients gave up on having children of their own, but with technological advances in reproductive medicine, there are options now. Many younger patients go through treatments to preserve their fertility; they extract eggs, bank sperm and freeze embryos.
But when cancer patients want a chance at parenthood, who pays for the expensive treatments?
Many states are considering legislation to require insurance companies to cover fertility preservation for cancer patients. California has so far left these decisions up to health insurance companies and state regulators. Patient advocates and doctors say that’s not fair to vulnerable cancer patients who want a chance at parenthood.
Crisci was determined to get through her cancer treatment and become a mom someday, but there was more bad news — the cost. Her insurance would pay for the surgery and chemo, but not for the hormone injections, egg extraction and the yearly fees for storing materials until she was healthy enough to try for a baby.
For men who get cancer, preserving sperm is just a couple of thousand dollars. But when it comes to reproduction, human anatomy isn't fair.
“It was a $20,000 expense I put on a credit card," Crisci said, adding that it was never even a question to her whether or not to take the financial risk.
When Crisci told her live-in boyfriend they had to work fast to freeze embryos, he balked, and they broke up. Now, she also had to choose a sperm donor too.
Crisci was lucky. She had health insurance and a good salary to pay back the debt she took on for fertility treatment. But she and other cancer patient advocates worry about how other young women just starting out in life without savings or credit will come up with the money needed for these treatments.
“Those costs are high for anyone — IVF, fertility treatments. It’s a challenging time, even more challenging financially,” said Joyce Reinecke, executive director of the Alliance for Fertility Preservation, a national organization based in the East Bay. “For a young person who maybe hasn't been working that long or is in college, it’s not feasible. They don’t have that choice to make if they don’t have that money.”
Reinecke was just married when she found out she had cancer. Now she has twin teenage daughters who are graduating from high school, but she remembers how daunting it felt to be fighting a deadly disease and trying to plan for a future she might not have.
For a long time, insurance companies didn’t cover infertility, or even consider it a disease. Now, the same treatments that preserve a cancer patient's fertility are often still lumped together with elective treatments paid for out of pocket.
Luxury vs. quality of life
“People saw this, I think, in part as more of a luxury thing whereas we see it as kind of part of one of the core values in medicine. We're trying to help people's quality of life — their ability to have a family,” said Dr. Joseph Letourneau, a reproductive medicine specialist at UCSF’s Center for Reproductive Medicine.
Patient advocates and doctors say insurance coverage and regulations need to catch up with medical technology and cover fertility preservation for cancer patients.
“This is medically necessary, and these services now, such as sperm banking and egg freezing, are really standard medical procedures and they are part of the standard of cancer care,” Reinecke said.
She has worked to pass laws that require insurance companies to cover fertility preservation. She has succeeded in three states (Maryland, Connecticut and Rhode Island), but not California.
Reinecke said signing fertility preservation coverage into law would give all cancer patients, not just the rich ones, an equal chance at fertility treatments.
In Sacramento, three fertility preservation bills were introduced in the state Legislature. One made it as far as Gov. Jerry Brown's desk in 2013, but he vetoed it, saying he was reluctant to mandate any new insurance benefits just as Obamacare was coming into effect.
Appeal and hope
After the most recent attempt last year, patient advocates decided to give up on new legislation and instead try to use existing regulations to get fertility preservation covered.
“This is a basic health care service that is medically necessary and therefore is covered. Then, whether an individual patient or not is entitled to that coverage, based on the medical facts of their case, is what's at hand,” Reinecke said.
State regulators say when insurance companies deny coverage, patients can file an appeal with the California Department of Managed Health Care in Sacramento, which regulates HMOs to make sure medically necessary basic health care services are covered. This appeals process, called an Independent Medical Review, requires patients to just fill out an online form.
Filing an appeal is free, but it still requires patients to pay thousands of dollars out of pocket for fertility preservation treatments, and hope they get reimbursed later by their insurance companies.
Time-sensitive appeals are supposed to be expedited and completed within a week, but doctors like Letourneau say it usually takes a couple of months to get a decision. Letourneau said when he walks patients through this process, he spends a lot of time on the phone with them trying to ease their worries about cancer treatment, fertility choices and financial risks.
So far, the handful of Californians who have filed these appeals have won. But they still have to wait even longer for their insurance company to reimburse them.
Letourneau said the appeals process if flawed because it serves only patients who have the time, money and savvy to try to overturn their insurance company’s decision. He worries about the many cancer patients who can’t afford to try or may not even know that an appeal is an option.
“Their cancer provider might look at them and say, ‘Gosh, I don't want to provide them the false hope that they could go freeze their eggs when it's going to be an out-of-pocket expense of $8,000 and I know they don’t have that.’ So why bring it up?” he said.
Oncologists and reproductive specialists are working together to serve patients, Letourneau said, and he’s hopeful that better coverage would mean more patients choose to treat their cancer more aggressively — that they’ll feel better about taking anti-tumor medication longer, knowing there’s hope they can still get pregnant later on.
The Department of Managed Health Care stands by the appeals process, declining to answer questions about the many cancer patients who don’t have the time or money to file an appeal.
'Cancer Patients Often Don't Have Time'
A couple of months is an eternity when you’re treating cancer, according to Dr. Adams Dudley, a health policy expert with UCSF.
“For people who don't have those resources, you might not be able to count on hope, and you might then just not be able to have children, and that's just wrong,” Dudley said.
Patients shouldn’t be forced to choose between fighting cancer aggressively, the chance to have children and going into debt to preserve their fertility, he said.
Dudley argues that leaving these decisions up to state regulators and a slow-moving bureaucracy isn’t fair to the vast majority of patients who don’t have thousands of dollars to risk on the chance of bearing their own children someday. And it means that everyone who'd benefit from extracting eggs isn’t getting the chance to do so, he said.
“The problem with this appeals process is that it takes time, and cancer patients often don't have time. Particularly the kinds of cancers that people of childbearing age get can be really aggressive, really terrible things that you need to get into and treat right away,” Dudley said.
The delay in covering an effective but expensive treatment is common in the field of reproductive health, Dudley added.
“If there were a new treatment that allowed you to have some really good outcome in almost any other disease, there wouldn't be an issue of whether or not it would be covered. We’d just cover it. We wouldn't say, ‘Oh, there are new chemotherapies that really improve your survival from cancer, but you can't have them because they’re too expensive.’ We don't do that generally. But we tend to treat reproductive health and mental health differently,” he said.
Dudley said state regulators and politicians should realize that the way insurers — governed by state regulators — treat reproductive health and fertility preservation has a huge impact on the lives of cancer patients.
A happy ending for Alice
For Alice Crisci, going into debt to pay for fertility treatment helped her get through the dark, lonely moments soon after her diagnosis. With each expensive injection of hormones, she was banking on the fact that her body still worked and that she would beat cancer, resume a normal life and eventually have a baby.
“The injections were a little bit painful, but I was in control. I was the one who got to do it. Nobody was doing it to me. And I felt like I was stimulating life force,” she said.
Crisci's story has a happy ending. She’s an entrepreneur living in San Carlos, and single mom to a curly-headed 4-year-old named Dante.
“I named him Dante because it means enduring. We certainly endured a lot to get to be together,” she said.
Crisci and other advocates want other cancer patients to have a chance at parenthood, too.
Since January, they’ve been pressing state regulators to issue a formal letter telling insurers that California considers fertility preservation to be medically necessary and therefore should be covered.