How a Breast Cancer Survivor Changed the Law for Fertility Preservation
In July 2015, Melissa Thompson gave birth to her first child, and within a few days, she began suffering from high fevers and was struggling to breastfeed. Her doctor diagnosed her with mastitis and prescribed antibiotics. When the problems persisted, Thompson was sent to a breast surgeon, and six weeks after her daughter was born, she was diagnosed with breast cancer. Tumors were blocking her milk ducts.
“It was difficult to juxtapose and reconcile the happiness of new life and the fears of mortality at the same time,” Thompson told HealthCentral in a phone interview.
Thompson soon discovered that her treatment would jeopardize her chances of becoming pregnant again, but she also learned that Connecticut is one of 15 states where fertility insurance coverage is mandatory. She was pre-approved to begin the process of egg retrieval and daily hormone injections.
But two weeks later, the night before her scheduled egg retrieval, the insurance company called to tell her the procedure would not be covered after all. Thompson couldn’t fathom why this was, but felt she had to go ahead with the plan. The next day, Friday, her doctor removed 22 eggs.
The following Monday, Thompson had a mastectomy and soon discovered she’d need chemotherapy. When she was finally able to focus on the issue of her denied fertility charge, the appeal period was over. Furthermore, the fertility clinic was ready to send her bill to collections and she was forced to put the $12,000 charge on her credit card.
“I just did what I had to do,” she says. “But when I did look at the charge, I couldn’t understand why it wasn’t covered.”
A problematic definition
Thompson later learned that the definition of infertility in Connecticut was, “a presumably healthy individual who is unable to conceive or produce conception or sustain a successful pregnancy during a one-year period.” She was denied coverage because she had cancer and was not “healthy.”
To Thompson, this seemed wrong. If she had not done the retrieval procedure to preserve her fertility, but had proceeded right into chemotherapy and then tried to get pregnant for a year after treatment, insurance would have paid. However, by then, success would be less likely. Overall it would cost the insurance company more to pay for fertility services after her treatment than before.
Thompson called the hotline for the onco-fertility consortium out of Northwestern University, and they encouraged her to call her state representative. Soon, she was connected with Connecticut state Reps. Caroline Simmons and Matthew Lesser.
Lesser, a young cancer survivor who underwent fertility preservation himself, had proposed a law to provide fertility treatment insurance coverage for cancer patients four years in a row. Thompson and Lesser agreed to work together.
Thompson, who has an MBA from Columbia University and a background in economics, combed over the details of Rep. Lesser’s bill, correcting errors and making changes. By the time she was finished, she had an 82-page thesis of guidelines and fiscal analysis, and she showed up to the public hearing on February 7, 2017, with two big boxes that contained 30 copies.
In a phone interview with HealthCentral, Rep. Lesser said Thompson clearly knew more about this topic than any other person in the room.
“Then she met with every single legislator that had a say in it,” he says. “There were folks who’d never supported any insurance mandate ever and she went up and made a case and had a thorough and nuanced understanding of health insurance policy and lined up the votes.”
Even so, the bill died seven times and was resurrected in creative ways until it passed through appropriations - 30 ‘yesses’ to 0 ‘nos’ - only to get hung up again. In the end, Thompson and Lesser solved the problem, not by imposing a new mandate, but by changing the definition of infertility. The patient no longer had to be deemed “healthy,” and it would be covered for anyone after 12 months of trying or by “medical necessity.”
“Between sharing her own personal story and her command of the issues, nobody had anything they could say against it,” Rep. Lesser says. “I’ve never seen anybody get applause in front of a committee before, from the committee members. That violates all the rules of decorum, and yet the committee members applauded.”
Taking the fight to protect fertility to other states
After Melissa’s Law to Protect Fertility Preservation passed in Connecticut, Thompson went to the Women in Government (WIG) conference and shared her experience. There, 13 state legislators, senators, and representatives approached her to talk about passing similar bills in their own states.
Thompson chose to pursue Kentucky next, partly because it didn’t have an IVF mandate at all and partly because it was Republican-controlled. Her goal was to find a state as different from Connecticut as possible to provide a guide for people working in other states.
Filed by state Sen. Alice Forgy Kerr, Melissa’s Law to Protect Parenthood After Cancer is scheduled to have its first public hearing in February 2018.
“Patients don’t realize the power they have to make change,” Thompson says. “There is no substitute for authenticity, and you can’t argue with someone who shares their stories and feelings. And as patients we see when there are certain elements of care that seem wrong. Sometimes when the status quo isn’t right we can challenge it. If you keep asking questions, there may be an opportunity to make change.”
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Katherine Malmo is an author and adoptive mom who was diagnosed with inflammatory breast cancer 12 years ago. Her memoir, “Who in This Room: The Realities of Cancer, Fish, and Demolition,” was published in 2011 and a finalist for the Washington State Book Award. These days, she follows a strict health regimen and describes herself as “self-sustaining high maintenance.” You can follow her on Twitter @katherinemalmo or Facebook or visit her website, katherinemalmo.com.