Getting heard in advocacy

Nov 13, 2019
Getting heard in advocacy

Getting heard over the noise of more well-known, well-understood disease areas can be difficult for patient advocacy groups.

But when wider society isn’t aware the people you represent even exist, it’s particularly difficult, Jon Florin, Executive Director at No Stomach For Cancer, which marks its 10th anniversary this year, points out.

“Gaining attention is a big challenge,” he adds. “Other cancers have garnered most of the media attention for many years, and there are millions of dollars being poured into awareness campaigns. We don’t have those resources, and that’s inherent to the disease itself.”

Low awareness and late diagnosis

Gastric cancer is the fifth most common type of cancer worldwide, with 1.03 million new cases diagnosed in 2018, and the second leading cause of cancer death, according to Globocan.

As Jon says: “Before a patient or a family can even catch their breath, they are preparing for the end of life. The majority of folks diagnosed with gastric cancer don’t live past 12 months. That is our community. Stomach cancer patients do not live long enough to speak or fundraise on our behalf.”

There is a little bit of shame involved in stomach cancer in that some people wrongly assume that it’s the result of a bad lifestyle. Instead, the main issue and cause of stomach cancer is H.pylori infection which, if left unchecked, causes chronic gastritis and can, in turn, lead to stomach cancer.

To have something so categorically cause and effect should mean it’s easier to diagnose. However, it’s also easy to dismiss as a symptom of some other digestive issue, whether that be IBS, food sensitivity, or anxiety.

This challenge only makes No Stomach For Cancer, which has raised more than $550,000 for research over the past decade, more determined than ever to get the word out.

Getting the word out

“It’s about daily communications and interactions with the patient community and families, and having good relationships with researchers,” adds Jon.

“We meet with key opinion leaders and influencers to keep reiterating that stomach cancer is the second leading cause of cancer death in the world.”

It’s not just about spreading information, but fighting misinformation, he points out.

Stomach Cancer Awareness Month

“Early on, we trademarked ‘stomach cancer awareness month’ so we can protect its integrity, and not allow people or organizations to profit from it,” Jon says, adding the group is planning social media and billboard campaigns for this year’s event in November.

“We encourage people to co-ordinate awareness activities, and when they ask permission to use the brand, we provide materials free of charge. Wristbands, infographics, risk management information: these are all things we provide as part of our outreach and education.”

Gaining mainstream media attention remains a challenge, he reveals, but says the organization is working hard to change this. “Our mission is to help patients around the world better navigate their journey from diagnosis to survivorship and, beyond that, to continually advocate through government channels and with other like-minded organizations. We want to do whatever we can to facilitate and move the needle forward in terms of advancing treatments and options for patients and their families.”

Getting heard in advocacy

Author

Jon joined NSFC in the Spring of 2015. He comes from a diverse background in marketing and customer service. His most important goal as the Executive Director is to bring stomach cancer to the forefront of the public view and increase the media’s attention to the disease. This is no small task, as stomach cancer is often disregarded as a public health issue although there are one million new cases diagnosed each year.

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