Protecting Parenthood for Cancer Survivors

MELISSA MELI didn't undergo fertility preservation before cancer treatment because of the expense. - BEN HIDER

When Melissa Meli received a diagnosis of breast cancer earlier this year, her boyfriend’s mother was the first person to suggest — gently — that she look into freezing eggs before starting chemotherapy that could make her infertile. Meli’s oncologist agreed, and a few days later, Meli met with a reproductive specialist while her boyfriend was deployed. Aside from having breast cancer, Meli, who is under 40, was in good health, and the doctor said fertility preservation would take just a few weeks.

Then Meli was taken to another room, where a staff member at the clinic outlined the associated costs: $11,000 to retrieve the eggs and $1,000 per year to store them, none of which was covered by insurance. A possible grant might cover $4,000 to $6,000, and paying out of pocket would bring a small discount. Meli, a singer and actress who lives in New York City, didn’t have the money. Furthermore, she and her boyfriend hadn’t decided if they would have children.

“We thought about asking people to help with the money,” she says, “but that felt like too much pressure to eventually have a child. I was afraid if I started a GoFundMe to raise money that I would feel beholden to my family and friends to have children. It would put a lot of pressure on us, and I decided not to do it.”

These are the choices that many younger patients with cancer face — going into debt, raising money or forgoing fertility preservation. That’s because few insurance plans cover these procedures, even in states with infertility mandates. A host of nonprofit organizations and advocates are working to change these laws, state by state, in a movement that is gaining momentum.

THE REALITY OF TREATMENT

Each year, approximately 70,000 adolescents and young adults between ages 15 and 39 receive cancer diagnoses, but not all undergo treatments that affect fertility. According to the New England Journal of Medicine, between 20% and 70% of patients with cancer are rendered infertile every year.

One study from the University of Pennsylvania found that women who underwent in vitro fertilization (IVF) after treatment were five times more likely than those who’d never had chemotherapy to have a cycle canceled due to a complete lack of ovarian response to fertility drugs. Patients can bank sperm or eggs for future use — if they can afford it. For men, the relatively simple process costs less than $1,000, but storage takes another $150 to $400 per year. For women, the price tag for the procedure is $10,000 to $15,000; storage, $300 to $500 per year. Even the initial consultation can be costly.

Meli, who received her insurer’s preapproval for her appointment with the fertility specialist, was still charged more than $1,000.

THE OBSTACLES

The lack of insurance coverage for people like Meli troubles Dr. Eden Cardozo, who works in reproductive endocrinology and infertility at Women & Infants Hospital in Providence, Rhode Island. “We were getting referrals from oncologists,” Cardozo says. “But we were finding that patients were canceling appointments or not showing up, and when we looked more carefully, we realized they didn’t have any coverage to see a fertility specialist. It would be several hundred dollars to come for the initial consult, and so they weren’t even getting through our doors.”

These initial appointments are crucial whether or not patients pursue fertility preservation, according to Cardozo, who is also an assistant professor at the Warren Alpert Medical School of Brown University. “There’s literature that shows that even just having that initial consult results in reduced long-term regret,” she says. “It improves physical and psychological quality of life. Even if all they do is come have that initial meeting, it’s so important for these patients to know that somebody is looking out for them on the other side of cancer and to give them hope that they can have a family and there is a future for them on the other side of this.”

The impact of those high costs cannot be underestimated, says registered nurse Rosemary Semler, a fertility nurse at Memorial Sloan Kettering Cancer Center in New York City who meets with young cancer patients every day. “It’s devastating for patients who can’t afford preservation,” she says. “The uncertainty is difficult. There is no way to predict the effects of treatment, and patients have no idea if they will be able to attempt natural conception.”

Grants are available through Livestrong (livestrong.org/what-we-do/program/fertility), Heart Beat (ferringfertility.com/paying-for-treatment/save-on-your-medication/ heart-beat-program) and other financial aid programs for young adults, but these resources are limited. The funds are a “huge help,” Semler says, but, especially for adolescents and young adults, the remaining $7,000 or $8,000 can still be “prohibitively high.”

Financial problems are cited as the biggest obstacle to fertility preservation for women, but there are other roadblocks, too. “Many times, we see patients who ultimately don’t pursue fertility preservation,” Cardozo says. “Often, it’s because it isn’t financially feasible, but sometimes they don’t have the time prior to their cancer treatment, it’s too emotionally overwhelming with everything else going on, or they’ve already completed their family building.” Sometimes, early on, a patient doesn’t realize that fertility preservation is an option. According to American Society of Clinical Oncology guidelines, oncologists should initiate this discussion with patients. However, many doctors are unaware of this or reluctant to bring up the issue when they think the patient can’t afford it.

This phenomenon has been dubbed “wallet biopsy” by Joyce Reinecke, executive director of the Alliance for Fertility Preservation, a group that strives to connect patients, oncologists and fertility specialists, and a founding member of Stupid Cancer, Resolve and the Coalition to Protect Parenthood After Cancer. “The wallet biopsy happens when there’s an assessment made, whether it’s conscious or not, about which patients can afford these services,” Reinecke says. “This assessment informs whether they have the conversations. I don’t know that fertility preservation is discussed in a thorough or supported way with these patients, or in a way that makes the patients feel like these are real options for them.”

THE ADVOCATES

When Cardozo realized that patients weren’t making it into her office because they didn’t have insurance coverage, she decided to take action. She and Dr. Ruben Alvero, director of the Women & Infants’ Fertility Center, met with the hospital’s legal and communications teams to draft a bill that would make it mandatory for insurance companies to pay for fertility preservation for patients who are likely to become infertile due to cancer treatment. Cardozo championed the bill, even testifying before the Rhode Island House of Representatives and Senate, until it passed and was signed into law in July 2017.

Meanwhile, as Cardozo and her team worked on changing the law in Rhode Island, Melissa Thompson led the charge in Connecticut.

MELISSA THOMPSON helped pass a fertility preservation bill in Connecticut - PHOTO BY DANIELLE ROBINSON CALLOWAY

In 2015, just after giving birth to her first child, Thompson learned she had breast cancer. Fertility preservation was important to her, and, even though she needed to start chemotherapy, she decided to freeze embryos. The night before her egg retrieval procedure, the insurance company called to say the $12,000 fee would not be covered. Her doctor removed 22 eggs the next day, and weeks later — in the midst of chemotherapy — Thompson put the $12,000 charge on her credit card. “I was cornered,” Thompson says. “I needed to do it, and I couldn’t fathom why it wouldn’t be covered. By the time I was healthy enough to look at my appeals letter, the time period to file had closed.”

Connecticut has a mandate stating that infertility treatments must be covered for people struggling to get pregnant. However, at the time, the definition of infertility involved a healthy individual who could not conceive or sustain a successful pregnancy during a one-year period.

Because Thompson was not healthy and had not been trying for 12 months to conceive, she was not covered. However, if she had not retrieved eggs and had tried to get pregnant after finishing chemotherapy, the procedure would have been covered but likely unsuccessful. That didn’t make sense to her.

After making a few calls, Thompson got in touch with Matt Lesser, a state representative and cancer survivor who had introduced the bill in 2014. Thompson and Lesser worked together to change the law. Their bill passed and was signed into law in June 2017.

“It was an unbelievable experience and one of the proudest moments of my professional career,” says Bryte Johnson, the Connecticut director of government relations and advocacy for the American Cancer Society Cancer Action Network, who supported the bill. “You’re lucky to see advocacy power like that once in your career. Melissa Thompson took a bill that never went out of committee and got it through the entire process without a single no vote. That’s unheard of. There’s something to be said for unstoppable tenacity.”

THOMEEKA SPEAKS had insurance coverage for her fertility preservation under a bill passed in Rhode Island. - PHOTO BY PETER GOLDBERG

The passage of these laws and similar ones in Maryland and Delaware was helped along by numerous nonprofit groups and individual advocates: the Alliance for Fertility Preservation, Resolve, the American Society for Reproductive Medicine, the American College of Obstetricians and Gynecologists, the Ulman Cancer Fund for Young Adults and Shady Grove Fertility in Maryland, the Oncofertility Consortium at Northwestern University in Illinois, and patient advocate Christie Gross in Delaware.

Many are members of the Coalition to Protect Parenthood After Cancer, a group of nonprofit organizations that work behind the scenes to gain support for bills like these and planned to meet in early September to set priorities for 2019. Although advocacy has been successful in these four states, others lack such legislation. Similar laws have been proposed in several, and even at the federal level.

According to Erin Kramer, the government affairs manager of the American Society for Reproductive Medicine, Rep. Rosa DeLauro, D-Conn., and Sen. Cory Booker, D-N.J., introduced a federal bill (HR 5965 and S 2960) that would require insurance plans that cover obstetrics to also cover infertility treatments such as IVF. However, Kramer isn’t optimistic about such bills passing in the current political climate.

THE OPPOSITION

Kramer says opposition has been voiced at the state and federal levels by antiabortion groups, which testify against these bills on the grounds that life begins at conception. “Some organizations are opposed morally to reproduction with medical assistance,” Kramer says. “There are bills pending in Congress that would declare life beginning at conception, and this could impact embryos that have not yet been transferred to a woman’s body, and fertility preservation could get wrapped up in this issue.”

There has also been resistance from insurance carriers. According to the New England Journal of Medicine, lobbyists claim that IVF techniques are experimental or that infertility coverage should not be mandated because the condition is not life-threatening.

Kramer counters that these techniques have been used for 40 years. Plus, insurers cover many other non-life-threatening procedures for survivors of cancer, such as breast reconstruction.

Some critics argue that this coverage would significantly raise insurance rates. However, the Maryland Health Care Commission found that, in 2017, there were 2,000 people in Maryland who could become infertile due to medical treatment, and fertility preservation coverage for those patients would cost each insurance holder an extra 24 cents per month.

Not all insurance plans refuse or oppose this coverage. For example, Blue Cross Blue Shield of Rhode Island has covered fertility preservation services since before laws were enacted. However, Blue Cross Blue Shield policies vary by state.

THE FUTURE

After the law was enacted in Connecticut, Sen. Alice Forgy Kerr, a Republican, introduced a similar bill in Kentucky, with support from Thompson.

“Kentucky has the highest rates of cancer in the country, and it’s a conservative state. I wanted to go to a place where the political values and processes were different than Connecticut,” Thompson says. “What we’ve seen is that, at the core of the legislation, there is a commonality and a shared humanity that sees no party or side of the aisle. This bill is about protecting a vulnerable population, looking toward the future and giving young people the opportunity to live the life they’d hoped for.”

The bill passed the Kentucky Senate and the House Health and Family Services Committee but was not called to the House floor for a vote before the session ended. Thompson is hopeful for its passage in the coming year.

After the Rhode Island bill was passed, Cardozo and her colleagues saw an increase in the number of patients undergoing fertility preservation. However, even the new law doesn’t cover everyone — patients with government-issued insurance still don’t have coverage. “After the bill was passed,” Cardozo says, “we had nine patients actually do fertility preservation cycles, and all nine had private insurance coverage.”

One of those patients was 22-year-old Thomeeka Speaks, an aunt of five who is looking forward to motherhood and received a diagnosis of acute lymphoblastic leukemia in early 2018.

“The staff at the Fertility Center called my insurance company to guarantee everything would be covered,” Speaks says. “They handled it for me prior to starting the preservation, giving me one less thing to worry about.”