As we work to end a deadly but preventable cancer, we see significant opportunities to save lives. But so far, progress has been slow, and it needn’t be that way.
Mindy Mintz Mordecai
President and CEO, Esophageal Cancer Action Network
Over the past 16 years, I’ve had the honor of leading a community of concerned citizens known as the Esophageal Cancer Action Network (ECAN). We are dedicated to the end of esophageal cancer, an often-neglected cancer usually caused by acid reflux that leaves disproportionate tragedy in its wake. Although considered a rare cancer because it accounts for only about 1% of cancer cases in the United States, esophageal cancer causes more than 2.6% of U.S. cancer deaths.
Esophageal cancer is the fastest increasing cancer among American men, and one of the deadliest. In recent years, the type of esophageal cancer caused by reflux disease has tripled among younger patients, and they are often diagnosed at hard-to-treat late stages.
Facts about esophageal cancer
- Most cases of esophageal cancer in the United States are caused by acid reflux.
- Reflux symptoms include heartburn, chronic cough, sore throat, hoarse voice, choking when lying down, and erosion of tooth enamel.
- Only about 1 in 5 patients diagnosed with esophageal cancer will survive five years, largely because it is usually discovered at late stages when treatment is rarely effective.
- When treated at early stages, esophageal cancer survival rates are dramatically improved.
- Esophageal cancer can be prevented if its precursor, a condition called Barrett’s esophagus, is detected and treated.
- Barrett’s esophagus causes no symptoms. In fact, many patients will get a false sense of security because their reflux symptoms often go away when they develop this condition.
- Only 14% of Americans know that reflux disease can lead to cancer.
Glimmers of hope
When I lost my husband to esophageal cancer in 2008, no new therapies for this deadly cancer had been approved in decades. Since then, we’ve seen targeted therapies and immunotherapies added to the arsenal available to battle this insidious — but preventable — disease. The survival rate continues to tick up. Still, even if caught at its earliest stage, survival rates remain below 50%.
ECAN is proud that its advocacy played an important role in laying the groundwork for immunotherapy for esophageal cancer patients, and our advocacy continues to increase federal research funding for this deadly cancer by about $5M each year.
The pharma, device, and diagnostics industries have developed tools that could dramatically reduce the devastation caused by esophageal cancer. However, we’ve learned that smart people with ingenious solutions may not be enough, especially if those tools don’t reach patients.
Minimally invasive screening tests that can accurately identify if a patient is at risk for esophageal cancer before cancer develops should have changed the game years ago. That’s because if Barrett’s esophagus is discovered, it can be treated and eliminated, stopping cancer before it starts. However, millions of Americans with Barrett’s esophagus today are unaware they have the condition.
That’s true even though different versions of these minimally invasive tests have existed for more than a decade. Patients in the United Kingdom have easy access, but it’s not readily available to American patients. Most insurance doesn’t cover it. Most Americans are unaware that reflux disease can lead to cancer, and that number includes many doctors.
Next steps
To take advantage of the spectacular opportunities we have to save the lives of thousands of patients each year, we must continue to increase public understanding that reflux disease can cause cancer, so patients can advocate for themselves. We must also ensure that healthcare providers become aware of the risk factors leading to esophageal cancer and are easily able to refer patients for testing when warranted. We also need to push to make minimally invasive testing available to and affordable for all patients at risk for this deadly cancer.
We need to move forward now. An American dies of esophageal cancer every 36 minutes. Every day we delay, lives are lost.
