Advocacy Superheroine

By Jon Franke

Think about a time when you were faced with adversity, or a situation that seemed unfair. What did you do? If you’re like most of us you made some noise, maybe complained a little bit, maybe even gave someone a piece of your mind. Then, maybe you dropped it, and went on with your life. This is perfectly rational. When this adversity includes a cancer diagnosis while raising a newborn, simply “going on with your life” might seem like the only option.

Melissa Thompson didn’t see it quite that way.

After Melissa’s daughter Poppy was born, she thought things were as they should be for a first-time mom—chaotic, joyful, and exhausting. Notably however, within days of giving birth, Melissa started getting very high fevers every night and had trouble breastfeeding. She was diagnosed with mastitis—an infection of breast tissue that causes swelling, tenderness, and redness. Despite antibiotics, the unrelenting symptoms through the first and second course of medication became undeniable. Finally, she was referred to a breast surgeon after her physician explained that there could be excessive inflammation or an abscess.

After an ultrasound, the surgeon again diagnosed Melissa with mastitis and advised she cease breastfeeding—even lightheartedly writing “Cabbage – STAT” on an Rx pad, as frozen cabbage leaves are often used to help stop milk production. Melissa was reassured throughout this process that everything was fine, and there was “nothing to worry about”. Nevertheless, a biopsy was standard procedure.

Days later, with a five-week old Poppy asleep in her arms, Melissa felt the vibration of a push notification on her phone: Reminder, your oncology appointment is tomorrow at 9 a.m. It was a total shock. Until that moment, she did not have an oncologist.

With no family history, no genetic link, and no palpable lumps, the biopsy showed that Melissa had stage 3 breast cancer.

Both raising a newborn and fighting cancer are often independently described as full-time jobs—both journeys, while different, are more difficult, draining, and complex than any 9-5 job. These two combined presented an agonizing juxtaposition of the joy of new life and the fear of mortality.

Melissa is an entrepreneur by background, and on top of these major life events, she maintained her leadership in healthcare technology startups, a field she entered with the hopes of improving efficiency in healthcare systems and by extension, helping people live happier, fuller, and healthier lives.

Seeds of a Law

After receiving that fateful notification of her impending oncology visit, Melissa returned to the

surgeon’s office where they discussed surgery and treatment options. On top of everything else cancer takes, Melissa learned of a lesser-known side effect of treatment – infertility. She faced yet another loss, but this was one that would affect her beyond what she hoped would be just a chapter in her life that she would call cancer.

The drugs that would save Melissa’s life would also take away her chance of ever giving birth to another baby. Barely treading water in a deep pool of unfair, this realization threatened to pull her under.

Reproductive technologies have come far. There are often treatments available to newly diagnosed cancer patients, both male and female, including cryopreservation—freezing eggs, sperm, or embryos in the hope that after the cancer has been treated and is in remission, the healthy, cryopreserved material can be used in IVF and dreams of a future family can be attained.

In Melissa’s case, the procedure was initially authorized for coverage by insurance, so she went forward with the hormone treatment for ovarian stimulation. However, the day before her egg retrieval procedure, her health insurance called to reverse their prior authorization when they learned Melissa “had cancer, not infertility.”

This was one indignity too many.

So, the owner of three full-time-plus “jobs”, decided to take on another one, sprung from the love of her daughter and her hope for the future: changing the current policy by enacting legislation to guarantee insurance coverage for fertility preservation for those facing medical interventions, like chemotherapy, that could take away already fragile and traumatized patients’ hope for the future or incent them to compromise their own treatment.

“The insurance reversal was a huge eye-opener for me,” she said. “I went through with this treatment because I believed it was covered. Ultimately, I did not get a choice—just a $12,000 bill. If the authorization mistake was not made and I was asked if I wanted to incur that medical debt or forgo future family-building options? It would have been an agonizing decision.”

While she did not have the choice, she did realize that other cancer patients did. She added:

“After learning it’s cancer, we quickly have to decide if we want more children (or any children), and also if that large medical bill is something we could deal with while also trying to save our own lives.

If given that choice, I would have asked my physicians if there was a less toxic treatment option available that would allow me to retain my fertility options, not incur the untenable expense, and still be viable enough to cure my cancer.

The notion of having to choose my preferred mix of bad options felt very wrong to me, especially in a state that would cover multiple rounds of IVF after my chemotherapy was over, when I was by their definition infertile. This would also be when, despite interventions, the known likelihood of pregnancy would be reduced to possibly none at all.”

Melissa learned that her home state of Connecticut mandated IVF coverage, but only for “healthy” individuals. In fact she uncovered the reality that not one state required that insurers provide fertility preservation coverage, despite known impending infertility. Options could be saved, but states were not accommodating people in their ability to survive a devastating medical diagnosis and also have a future.

“If you have an issue, more than likely someone else has that issue,” she says. “This gives other people permission to tell their story, too.”

Melissa’s story, and the story of getting this bill passed, isn’t all sunshine and lollipops, though. It is an incredible understatement when Melissa says “It wasn’t easy,” before quickly adding, “but it was incredibly rewarding.”

Anyone that has dealt with infertility knows that the specific language used in treatment, and in coverage plans, can have great effects. This bill was no different. In fact, it doesn’t specifically mention cancer at all. Instead, in the form it was ultimately passed into law, it provides infertility treatment coverage for all “medically necessity.” This was a particularly rewarding element of the legislation for Melissa.

Despite the bill not helping her personally (as it is not retroactive), it will not only help people who will be in the same situation she faced, but more inclusively, will provide coverage to people with other medically indicated needs for infertility.

How a Bill Becomes a Law

Entering a capitol building can be daunting. Nevertheless, the public is welcome and Melissa believes, “everyone should testify at a hearing for something. It was a fascinating experience.”

In fact, citizens trying to make a difference are the people who most belong. You see, “legislators are human,” Melissa explained. “Once I shared my story and my thoughts on changing the laws to meet the needs of the citizens of Connecticut, there were no walls of ‘them and me’. They really listened, empathized, and stood true to their words. I presented the argument from my personal experience, but broadened my testimony to address known issues I knew were on the legislators’ minds: costs and stakeholder pushback. My allotted three minutes to speak was the result of many months of working through potential issues in advance.”

It was not only the result of working behind the scenes, but some connections that ended being remote lifelines. Before the hearing, Melissa connected with Davina Fankhauser, co-founder of infertility advocacy non-profit organization, Fertility Within Reach. Davina has advocated successfully for legislation in Massachusetts and together, they spent invaluable time detailing strategies before the hearing. Davina introduced Melissa to Kate Weldon LeBlanc, Executive Director of RESOLVE New England and Lisa Rosenthal, Patient Advocate, Reproductive Medical Associates of Connecticut (RMACT). Melissa connected with Kate in advance of the hearing to discuss strategy, process, and what to expect, and Kate gave Melissa confidence she needed for the hearing. Lisa edited Melissa’s testimony, providing her keen eye for speechwriting. On the day of the hearing, Melissa was slotted to speak at the very end of the day. Throughout the day, as she got increasingly nervous, she was emailing the “New England Trio” with updates, photos, and questions. “Even though I was physically alone, because of them, I never felt alone.”

The reaction to her testimony, which was balanced between her personal experience and her training in business and economics, was overwhelmingly positive.

Even the Insurance Committee, which arguably had to be the toughest sell, proved to be human. “After I testified before the Insurance Committee, at least half of them came up to me and told me a story of someone they knew who would be helped by the proposed legislation, many looking wistful.”

Of course, personal connections can only get you so far. The legislation also had to be fiscally sound. If Melissa could answer that question, the bill just might become a reality. With an MBA from Columbia Business School, diving deep into the analytics didn’t scare her like it would many of us. So, she set out to prove that providing this coverage was a good financial bet, as well.

Melissa’s strategy was brilliant in its simplicity.

Get to No

“I tried to get as many no’s as possible,” she says, “so I could see where the real barriers were to enacting this change.”

As the only person who testified without a lobbyist or legislator to represent her or be by her side for support, Melissa sought out this pushback on her own. Her first target? Ranking Member of the Insurance Committee, Representative Robert Sampson (R- Wolcott). After her testimony, she approached Representative Sampson outside for his thoughts. Predictably, he said that there would be almost no possibility he could support it should it be another mandate or present a cost to the state, as the state was already under fiscal duress.

Melissa’s sights were set. She believed if she could satisfy the challenges put forth by Representative Sampson to support her legislation, his buy in would go a long way and she could also capture the support of much of the Republican Party.

Fast forward another month and Melissa had cracked the cost formula. With the professional protocol recommendation, as well as the ethical and moral arguments on her side, it was time to get in front of legislators again, this time in a much bigger venue. As her bill was being debated, as she continued cancer treatment, she spent four full days, 15 hours each, in the Galleries and hallways being literally in front of legislators’ faces (politely). “I wanted to make sure they didn’t forget me, my story, or forget how important this issue was, knowing that they had hundreds of issues to consider,” she said.

Much of debates take place in caucus, behind closed doors. At this point, Melissa had come into a supportive circle of lobbyists from the American Cancer Society, Ferring Pharmaceuticals, and Memorial Sloan Kettering. With these “insiders” now by her side, information became more transparent. She was able to address dissension before it surfaced broadly, and ultimately, through the coordination and support of many state agencies, legislators, advocates, and lobbyists, the bill hit the floor for a vote.

The speakers supporting her bill on the House floor were Republican Minority Leader Themis Klarides (R- Derby), Representative Matthew Lesser (D- Middletown), a cancer survivor himself and the lead sponsor, and Democrat Majority Leader Representative Matthew Ritter (D- Hartford). It was perfectly bipartisan.

The voting board lit up in green lights as the bill passed unanimously, 148-0, to great applause.

The same occurred a week later on June 2, 2017, late in the evening in the Senate. The bill passed with two standing ovations and the vote was unanimously favorable, 36-0. Melissa was given an honor that only one other non-legislator has been given on the Senate floor. With Lieutenant Governor Nancy Wyman by her side, Melissa was given the opportunity to bang the gavel indicating the bill’s passage.

On June 20, 2017, Connecticut Governor Daniel Malloy signed the bill, enacting “Melissa’s Law for Fertility Preservation.”

With the tireless advocacy of one individual who wanted to enact a change to help the lives and families of future cancer patients, Connecticut became the first state to require insurance coverage for fertility preservation for medical necessity.

What’s Next

Now that we know Melissa a bit, we also know that resting on her laurels is not in her DNA. Within days, she took the bill on the road as she boarded a plane to Las Vegas to the Women in Government Foundation—an opportunity to proliferate the legislation nationally that could not be missed.

Since her Law’s passage, Rhode Island became the second state to pass legislation to ensure coverage for cancer patients’ fertility preservation coverage. Knowing Melissa’s tenacity—and that this type of fertility coverage is much needed, cost effective for insurers, and the right thing to do—other states are likely to follow.

As for Melissa, she recently sent an update:

“This summer Poppy turned two. Her favorite bedtime books of the moment? I Dissent: Ruth Bader Ginsburg Makes Her Mark by day, and Goodnight Stories for Rebel Girls. She is a busy toddler who proudly leads the way (and her mom), wearing a Wonder Woman dress, complete with a red cape. Poppy is a delight (and I am lucky).

Knowing that years from now, months from now even, a patient will come along just like me and not face the issue and choices I did, is still so satisfying. After January 1, 2018, the next patient will have coverage—and hopefully will have no idea the battle it took to get to that place. The thought of that future is fantastically rewarding. I hope everyone has an opportunity to have a ‘Poppy’, should he or she wish.

I am now working on new legislation to further policies for reproductive access and parity, and will also work state by state to proliferate Melissa’s Law to expand insurance coverage nationwide.

I also hope to impart the reality that I was just one person with a deep sense that something was not right and a strong will to fix it. It was amazing and meaningful to learn that one person truly can be a catalyst for change.”

Jon Franke is a freelance writer and editor living in Newton, MA.

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