Nikki Massie was born three weeks early and still weighed in at nearly nine and a half pounds. “God bless your mama,” I told her, and she laughed the way you laugh at a story you’ve told a hundred times. That early arrival was the first chapter of a lifelong relationship with weight that would eventually carry the Baltimore mother of two from a hospital bed at St. Agnes to the board chair at the Obesity Action Coalition (OAC), the nation’s only organization that speaks exclusively on behalf of people living with obesity.

"This month, Massie wrapped up her final convention as OAC board chair — her two-year term officially runs through January — closing it out at the organization’s Your Weight Matters Convention in Orlando, a gathering of hundreds who come together each year for education, advocacy, community and, as she describes it, a rare kind of freedom. 

The Surgery That Changed Everything

Massie had tried Weight Watchers, keto, South Beach — “all of the things,” she said. It was watching her two young daughters, then 9 and 6, that pushed her toward a different path. “I wanted to be that mom who played sports with them and ran around the playground,” she said. In January 2008, she underwent gastric bypass surgery at St. Agnes Hospital, but not before insurance hurdles still familiar to many Baltimoreans today: a six-month waiting period, a mandated weight-loss target, and an insurer that treated the surgery as elective. She lost 155 pounds over two years — and then hit a wall no one had prepared her for.

“It became very glaringly obvious to me that obesity is not treated the same way as other health problems,” she said. “Nobody knew how to help me.” Her surgeon and her primary care physician barely communicated, she said. At the time, bariatric surgery itself was viewed as the last resort — “the end of the road,” in her words — and prescribing medication to patients after surgery wasn’t yet common practice.

The Convention That Changed Everything

That gap in care led Massie to the OAC. She still remembers the late Rob Portinga, a friend who heard she couldn’t afford her first convention in 2013, and paid for a hotel room so she’d simply have a bed waiting. What struck her most wasn’t the science, though there was plenty of it — it was smaller things, like a welcome bag listing the macros of every meal served, for a room full of people who food-logged their every bite. “Those people get me,” she remembers thinking. She later won the OAC’s Member of the Year award and joined the board in 2015.

Lived Experience as a Tool

Under Massie’s leadership, the OAC has leaned hard into a core belief: that people living with obesity belong in the room where decisions about their care are made. She remembers early advocacy panels where researchers presented data and patients like her spoke afterward — to silence. “Nobody ever had any questions for me at first,” she said. That has changed. OAC members now sit on research advisory panels, address audiences at Obesity Week, and have met directly with drugmakers including Eli Lilly and Novo Nordisk. “You can make the best treatment out there, but if it doesn’t work within somebody’s life, it’s not going to work,” Massie said.

What Baltimore Should Know

The OAC, now roughly 90,000 members strong nationally, has had a visible presence in Baltimore for years through the BMore Healthy Expo, typically held each March at the Baltimore Convention Center. Massie said the organization stays “treatment agnostic” — supporting surgery, medication, or behavior-based approaches, as long as they’re safe and evidence-based. That matters most right now around GLP-1 medications. Massie is candid about their promise and their pitfalls: high cost, thin insurance coverage, and a fast-growing market of unregulated compounded versions where, she said, “there isn’t even a guarantee that you’ll know how much of the active ingredient is in” what you’re taking. Her advice: start at obesityaction.org for vetted information and a directory of obesity-informed clinicians — the same one her daughter used to find her own doctor.

No One-Size-Fits-All

Researchers have identified more than 40 known causes of obesity, Massie noted, yet treatment has largely lagged behind that complexity. “We’re getting to a time where my obesity treatment and your obesity treatment and a third person’s obesity treatment might be completely different,” she said. What hasn’t changed is the sense of belonging she still feels at convention. “The people there see you for who you are,” she said, “not as anybody’s flaw.” For a few days each year, people get to shed the bias and stigma they carry everywhere else and simply be themselves.

As Massie’s term as chair winds down this coming January, her message to Baltimore is simple: obesity is a chronic disease, not a character flaw, and there is no single path through it. Whether the way forward is surgery, medication, or the kind of writing-as-healing this column has long championed, help — and a community that has walked the road before — is closer than it looks.