WASHINGTON – Personal advocacy can be more effective than even a legislative champion when approaching policy changes at the state level.
Gregory Twachtman/MDedge News
That was the message Matthew Lesser (D), deputy majority leader of the Connecticut state senate, told attendees at the National Comprehensive Cancer Network policy summit examining the impact of state policy on access to cancer care.
Mr. Lesser framed the advice around his own battle with cancer, a diagnosis that came with a need for immediate surgery within 36 hours. His diagnosis came with a recommendation for fertility preservation before he started treatment. And while the action for men is relatively inexpensive, he found after the fact that it could cost upwards of $15,000 for female cancer patients to undergo fertility preservation, and it was something insurance usually did not cover.
He made it a personal legislative priority to get a law on the books preventing insurance companies from restricting fertility coverage for those undergoing cancer treatment.
Mr. Lesser said he tried four times to get the bill passed but it failed to gain any traction. Then, in 2017, as he decided it would be his last attempt at getting a law passed, an advocate stepped up.
“This time something different happened,” he said. “We did the usual thing. We had a public hearing. Anybody can come up and speak. We don’t know in advance who that’s going to be.” A 32-year-old single mother battling advanced breast cancer, Melissa Thompson, “showed up at our public hearing and told her story.”
And it was her testimony, and persistent advocacy that followed, that won over the state legislators.
“Her story was incredibly powerful,” he recalled. “But for some of my more hard-nosed colleagues, stories aren’t enough. They want to see dollars and cents. They want to know the facts and the figures, and Melissa, a former Goldman Sachs analyst with an MBA from Columbia School of Business, was able to lay out dollars and cents argument much better than a lot of health professionals have been able to do.”
Her testimony was so powerful that Mr. Lesser said it was the only time he had seen a committee give an ovation to a witness.
Ms. Thompson followed up her appearance before a state committee with outreach to leadership on both sides of the aisle.
“Melissa changed the way we talked about the issue, and partly because this one person, this one Connecticut resident, reached out to every single member of the State senate,” he said. “She recorded a little video that she played to the 36 members of the state senate. She went and talked to Republican and Democratic leaders. She told her story. And she wouldn’t give up.”
And her work paid off, as H.B. 7124 passed with no dissenting votes in both chambers of the Connecticut state legislature, and was signed into law in 2017.
“This wasn’t something I did,” Mr. Lesser said. “It’s not something I could have done. I tried to do it and failed. But it does show the incredible power of individual advocates on the state level.”
The reason he thinks individual advocacy has a lot more impact on the state level is one of size and resources.
“Because state [governments] are so small, the power of individual advocates is enormous,” he stated. “Because we are so understaffed and so underresourced, compared to our colleagues on the federal level, that personal connection is magnified in importance.”
Mr. Lesser recalled other examples of how personal advocacy in Connecticut that have moved legislation in a bipartisan fashion in ways that would likely have otherwise failed without a voice outside the legislative body telling a personal story, including breast cancer imaging screening for women with dense breasts and raising the age for tobacco purchasing to 21.