Esophageal Cancer Action Network: Turning Tragedy Into a Life-Saving Mission

Following the death of her husband in 2008 from stage 3 esophageal cancer, Mindy Mintz Mordecai was angry and frustrated. She believed her husband, and thousands more like him, might have never died had they been aware that reflux disease could cause cancer and understood the little-known symptoms of reflux disease.

With the support of a board of directors made up of top physicians, business leaders and families that who been impacted by the disease, Mordecai founded the Esophageal Cancer Action Network (ECAN) in 2009.

ECAN’s mission is to save lives by making Americans aware that reflux disease can cause cancer, promoting early detection, supporting medical innovation to prevent, detect, treat and cure esophageal cancer and linking patients and families to compassionate support.

“Every 36 minutes, another American will die of esophageal cancer,” said Mordecai, whose daughters were just nine and twelve when their father died. “But this is a preventable disease, and by increasing awareness and promoting early intervention, we are saving lives.”

ECAN reports that the type of esophageal cancer caused by reflux disease has increased more than 600 percent since the mid-1970s. Among American men, esophageal cancer is the fastest increasing cancer diagnosis and the eighth cause of cancer death. Only one out of five diagnosed with this disease will survive five years. That’s because most cases of esophageal cancer are diagnosed at late stages when treatment is rarely effective.

About three million Americans currently have a condition known as Barrett’s Esophagus, the precursor to esophageal cancer, ECAN explains. But more than half of those patients are not aware they have the condition because Barrett’s Esophagus, like the early stages of esophageal cancer, causes no symptoms. That’s why the organization urges those with symptoms of reflux disease — like persistent heartburn, cough, sore throat, hoarse voice or choking upon lying down – to see their doctor so they can get checked.

But most Americans don’t realize that reflux disease can cause cancer. A poll conducted in March 2017 for ECAN by Ipsos, one of the world's leading market research firms, found that 86 percent of Americans don’t know that reflux disease can cause esophageal cancer. It also found that less than half of Americans associate reflux with any symptoms besides heartburn.

“We believe it’s important for everyone to be able to recognize reflux symptoms because they are often the only timely warning patients will have that they are at risk for this deadly cancer,” said Mordecai. Her husband frequently choked upon lying down at night but never realized he had reflux disease until a six-centimeter tumor in his esophagus kept him from swallowing.

ECAN hopes to put its message in the hands of many more Americans at risk for esophageal cancer when it files a Citizens Petition with the Food and Drug Administration in May. The petition will seek labels on over-the-counter reflux medications warning of the cancer risk posed by reflux and explaining that medication does not eliminate that risk.

The most common symptoms of esophageal cancer include trouble swallowing, weight loss and chest pain—like pressure. Other possible signs are hiccups, vomiting and bone pain. But by the time patients experience these symptoms, the cancer has usually progressed to a stage that is nearly impossible to cure. That’s why ECAN’s awareness message is so important.

If patients catch their condition early, they have a dramatically improved chance of survival. In fact, patients diagnosed with Barrett’s Esophagus, the precursor to esophageal cancer, can usually be treated with new outpatient procedures and never go on to develop cancer.

Esophageal cancer most often develops in men, and that risk increases with age, but women and younger people are at risk as well, especially if they have persistent reflux. Patients who once had heartburn that went away on its own or have a family history of esophageal cancer or Barrett’s Esophagus are also at increased risk.

ECAN has developed a Guide for Patients that helps patients understand their risks and prepares them to discuss the topic with their healthcare provider. The guide is free; download it online at news.ecan.org/PatientGuide.

Through ECAN’s efforts, April has been formally designated as Esophageal Cancer Awareness Month across the United States and is now recognized by groups, associations and companies around the world.

ECAN has even enlisted some star power to share its message. ECAN partnered with the estate of film icon Humphrey Bogart — whose life was cut short in 1957 by esophageal cancer — to launch Screenings for Screenings in 2013 at the First Annual Humphrey Bogart Film Festival in Key Largo, Florida. Every year at the Festival, before each film is screened, a movie trailer produced by ECAN featuring Bogart’s son, Stephen, encourages viewers who may be at risk to get checked for esophageal cancer. In 2015, Jeff Foxworthy starred in a short “you might be redneck if…” comical public service announcement for ECAN telling viewers that reflux disease is no laughing matter.

Over the last eight years, ECAN has sponsored and supported nearly 200 fundraising and awareness events from coast to coast, including comedy shows, galas, dance events, walks, runs, bike and motorcycle rides, golf tournaments, speaking events, even art shows.

“We are doing all we can to make awareness that reflux disease can cause cancer as well-known as the need to wear sunscreen when going outside,” said Mordecai, a former television journalist and lawyer.

ECAN is also dedicated to advocacy in support of medical research funding. ECAN successfully advocated with the National Cancer Institute to include esophageal cancer in its groundbreaking genome mapping project. The journal Nature published the important results of The Cancer Genome Atlas project in esophageal cancer in January 2017.

Currently based in Baltimore, ECAN is the only national non-profit advocacy organization dedicated to increasing awareness of the link between reflux and cancer.