Esophageal Cancer Action Network Inc

Esophageal Cancer is the fastest increasing cancer diagnosis among American men. The type of Esophageal Cancer (Esophageal Adenocarcinoma) that is increasing at such a rapid rate is caused by Reflux Disease or GERD (Gastroesophageal Reflux Disease). Most Americans are unaware that GERD can lead to cancer. ECAN commissioned a survey in 2017 that found that only 14% of Americans are aware that GERD can lead to cancer. ECAN seeks to increase public understanding of the symptoms of GERD (beyond heartburn) and the risks posed by GERD. GERD causes the precursor to Esophageal Adenocarcinoma which is called Barrett's Esophagus a condition that causes no symptoms and is rarely detected. But when it is, Barrett's Esophagus can be eliminated, preventing patients from developing Esophageal Cancer. today, most Esophageal Cancer is detected at late stages when treatment is rarely effective. ECAN is working to change that. Early detection saves lives because survival at earlier stages of Esophageal Cancer is much higher than later stages and, as noted above, when caught at its precancerous state, cancer can be prevented.

ECAN works tirelessly to raise awareness of the link between reflux disease and Esophageal Cancer. We began Esophageal Cancer Awareness Month and conduct robust outreach and programming to promote awareness through publications, media outreach, events, partnerships and continuous public education efforts. ECAN also filed a Petition with the Food and Drug Administration to get cancer warnings placed on all over-the-counter heartburn remedies so that those most at risk would be informed that their need for these medications could indicate a risk for a deadly cancer and, further, that taking the medications will not eliminate that risk, The FDA denied ECAN's Petition in October 2018 but provided guidance that may allow for further research and refiling of the Petition at a future date. ECAN has also advocated for language to be included in federal Appropriations bills that would direct the Centers for Disease Control to develop a plan for increasing awareness about the link between Reflux Disease and Esophageal Cancer.

ECAN also advocates for increased research funding and focus to find improved methods to prevent, detect, treat and cure Esophageal Cancer. ECAN is a founding member of the Deadliest Cancers Coalition, which has advocated increased research funding and focus for cancers with a survival rate of less than 50%. ECAN was successful in gaining inclusion of Esophageal Cancer in the only cancer research fund controlled by Congress, the Department of Defense's Peer-Reviewed Cancer Research Program *PRCRP) for Fiscal 2020. Both chambers of Congress have included Esophageal Cancer in the PRCRP for 2021. ECAN is currently working to maintain Esophageal Cancer's access to the program in 2022.

In addition, ECAN provides vital information to patients about treatment options and the latest research developments. As part of this effort, ECAN works to provide patients with easy-to-access information about clinical trials in Esophageal Cancer, Barrett's Esophagus, and Reflux Disease. ECAN's website has a Clinical Trials Portal with a search engine to discover clinical trials for which they may qualify. ECAN also hosts webinars with some of the nation's top experts in the prevention, detection, and treatment of Esophageal Cancer.

ECAN is fortunate to have a Board of Directors comprised of world-renowned physicians who focus on Esophageal Cancer along with business leaders and professionals who have been affected by Esophageal Cancer. The organization currently has a full-time President and CEO along with two full-time staff members who are responsible for Marketing efforts and Operations. ECAN also has a part-time staff member who handles most administrative duties.

ECAN's base of support is wide and strong considering that Esophageal Cancer is a rare disease that affects about 18,000 Americans annually. Only one out of five of those diagnosed will survive five years. Most don't survive for 12 months. But given those circumstances, ECAN has been able to build a base of support that exceeds 15,000 and reaches about 50,000 each week through its social media efforts.

ECAN was successful in convincing the National Cancer Institute to include Esophageal Cancer in its cancer genome mapping project known as The Cancer Genome Atlas (TCGA) when it originally did not intend to include it. The result was important findings that provide the basis for important studies that support FDA approval of the first immunotherapy for patients with the most common type of Esophageal Cancer in the US.

ECAN successfully advocated with the U.S. Congress to include Esophageal Cancer in the multi-million-dollar Peer-Reviewed Cancer Research Program of the Dept. of Defense for the first time in history. In 2020, both chambers of Congress have voted to include Esophageal Cancer in the program in FY 2021 and ECAN is preparing its campaign to maintain access to that program for Esophageal Cancer researchers in 2022.

ECAN hosts webinars with the leading experts in the prevention, detection, and treatment of Esophageal Cancer and is developing plans to host the first national conference to bring together patients, families, caregivers, healthcare providers, industry leaders, and advocates to teach, learn and collaborate for the benefit of patients at risk for Esophageal Cancer.

In addition to starting Esophageal Cancer Awareness Month, which is now observed by organizations and corporations across the nation, ECAN has provided resources for supporters to share its life-saving message throughout the nation - and in other countries as well. ECAN has developed partnerships with high-profile supporters to increase the traction for its awareness message. ECAN has partnered with the Estate of Humphrey Bogart (who died of Esophageal Cancer) for a public awareness campaign that includes public service announcements that are shared in many venues, including prior to every screening at the Humphrey Bogart Film Festival. ECAN was fortunate to gain the support of comedian Jeff Foxworthy for its No Laughing Matter event in 2015 and Foxworthy also starred in a public service announcement for ECAN based on his trademark "You might be a redneck if... " jokes.

Through a partnership with Smart Patients, ECAN now has a Clinical Trials Portal on our website that provides patients with information about Clinical Trials in general and an easy-to-access search engine to find Clinical Trials in the United States in Esophageal Cancer, Barrett's Esophagus and Reflux Disease. As part of its partnership with Smart Patients, ECAN also provides an online support platform for Esophageal Cancer patients.