Infertility After Cancer: The Great Fight For Insurance Coverage

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Viridiana Hernandez was 23 and about to graduate from California State University with a degree in social work. She was sick that day, as she had been for the past year. First, they thought she was pregnant, maybe she had acid reflux, doctors sent her for a kidney stone operation but found nothing. She woke up every day feeling nauseous, fatigued and just off.

The night of her celebratory family graduation dinner, she threw up all over her new shoes.

"It was horrible because they were the cutest shoes ever and I couldn't even celebrate graduating because I was so sick,” Hernandez, now 28, said.

Shortly after the shoe debacle, she scheduled an appointment with a doctor, who sent her for an ultrasound. The ultrasound technician informed Hernandez that her ovary was enlarged and could be a tumor. She was rushed to the hospital where she would stay for the next two weeks dealing with the diagnoses of nearly stage two ovarian cancer.

The surgery happened extremely quickly, in about two days time. Her doctor insured her he would remove the cancer completely, at any cost -- but he did have one concern. Because Hernandez was so young, he wanted to at least try to save one of her ovaries so she wouldn't have to go into early menopause and crush her dream of one day having a child.

"I remember opening my eyes and hearing the doctor say I still have an ovary, that was such a great feeling,” Hernandez recalled.

Hernandez, now 28, is completely cancer free and ready to find love and start a family, but her journey will most certainly not be easy.

Viridiana Hernandez, at a FCancer/First Descents retreat at the Ace Hotel and Swim Club in Palm Springs.

After cancer, there are many factors that can affect a woman's ability to become pregnant. In Hernandez's case, she only has one ovary and also suffered from polycystic ovarian syndrome, which affects her ability to produce estrogen. In most cases, no matter what cancer a woman might have, fertility is tampered with when undergoing certain treatments.

Chemotherapy and biologic or immune therapies and radiation are meant to kill the bad cancerous cells. But often times, it kills the good cells as well, the one's we need in order to conceive a child.

Dr. Heather Kun, cancer research specialist and Executive Director of FCancer, an organization dedicated to early detection, prevention and providing support to those affected by cancer, explained it best:

Chemotherapy drugs can damage eggs just like it's damaging cancer cells. It sometimes is not able to just target the cancer cells, it's also targeting your ovaries and where the eggs are. It will therefore make those eggs not provable to produce a fetus. In terms of radiation […] high energy rays can also damage a woman's ovaries.

According to Kun, over 10 percent of cancer patients are in their reproductive years. This is extremely important because over 80 percent of those people are now living past the cancer diagnoses and are looking to move on with his or her life.

There are tons of options out there for women suffering from infertility, but there's just one (monumental) problem: Insurance companies don't cover infertility caused by cancer.

My insurance won't pay for infertility treatments, so what now?

Treatments such as IVF, egg freezing, ovarian tissue freezing, and other procedures like ovarian suppression, in which drugs are used to stop your ovaries from producing eggs so the eggs don't get damaged, can cost upwards of five thousand dollars, and the majority of cancer survivors will end up paying out of pocket for those treatments.

These procedures usually need to be done before a woman has her cancer surgery, as they are a means of fertility preservation. As Hernandez's diagnoses happened so suddenly, her only option now is to undergo IVF, which she says she simply cannot afford.

"It's frustrating because you never expect to have to deal with this. It's not one of those things you have to think about planning for. You plan to save up money to pay rent or car loans, but you can't plan for cancer and how you're going to have a child,” she said with tears in her eyes.

Hernandez is not alone. In fact, there are currently only 15 states that have enacted some type of infertility insurance coverage law, and none of those states mandate infertility coverage for cancer patients.

The main reason for this is because fertility treatments for cancer patients are deemed as “elective procedures” by insurance companies and the federal government. Yet, if we look at other procedures for post-cancer patients such as reconstruction surgery, one could argue procedures like breast augmentation due to breast cancer is an elective procedure, as a woman could technically live her life without breasts and be healthy.

Dr. Kun thinks the only way to combat unfair infertility laws is to get the states to mandate, first around fertility and then around cancer-related fertility.

She said,

Unfortunately because of how our health care system works its state-based. The states have to get behind it and then the insurance companies will follow.

Alternatively, Barbara Collura, president/CEO or RESOLVE: The National Infertility Association believes the problem lies in the fact that people are not advocating for this coverage in a concerted way.

“The infertility community has done a poor job of gathering data on coverage and costs and having an open dialog with insurance carriers,” Collura said. “Fertility preservation is not being advocated for strongly enough and until that happens, I don't think we will see widespread coverage.”

There is currently no federal legislation fighting to get coverage for women specifically dealing with infertility due to cancer; however, there is a bill in New York aimed at improving the infertility mandate to allow coverage for IVF.

Most states reconvene their state legislatures in January 2016.

How can we fight for change?

Collura thinks there is one option that men and women should be utilizing more: advocating with their employer to demand coverage.

She wants to bring everyone together – health care professionals, patient advocates, employers and insurance carriers to work through the issues and get infertility covered.

Collura thinks,

If the customers of insurance companies – i.e. employers – demand the coverage, they will do it. And I think there are cost-effective ways to offer infertility insurance coverage that is the standard of care.

Hernandez, who helps out at the FCancer organization in an attempt to give back, says she's hopeful for the future and is looking into other options like adoption.

Though she would love to undergo IVF treatments, she just doesn't have the means.

She explained,

I know people who take out loans to do IVF. They go into debt to have a child, but then they have to raise that child. There are women out there like me that just can't do that.