An estimated 10,000 Americans died from gastric cancer in 2015, yet just 0.23 percent of the National Cancer Institute’s research budget was dedicated to the deadly disease.
Much more needs to be done to raise awareness and understanding of the condition, which is often diagnosed at stage four with a five-year survival rate of just four percent, say the team at No Stomach for Cancer.
“The current patient experience is not a good one – many patients are sent out of the emergency room or consultation room with a prescription for antacids or proton pump inhibitors and told ‘call me in a few weeks’,” says Jon Florin, Executive Director at the group, which has raised more than $500,000 for research since it was formed 10 years ago.
“In many cases, the symptoms of stomach cancer are confused with conditions such as IBS or food sensitivity, and this contributes to a delay in diagnosis, treatment, and access to clinical trials.”
“We have to make people more aware of the need to ask the right questions,” Jon explains. “At No Stomach for Cancer, we encourage people to advocate for themselves and push back hard when the doctor or nurse practitioner says ‘take this antacid or proton pump inhibitor and call me in a few weeks.’ These could help symptoms subside for a while, but we tell patients to ask their care team whether root cause testing, such as the test for H.pylori would be appropriate. Also, we tell patients that questions about family history are important.”
Jon adds: “Most gastric cancer clinical trials are happening outside the US. People need to get to these studies quickly because most of them don’t have a lot of time.”
Making trials ‘person centered’
No Stomach For Cancer links with partner groups to open pathways to trials in other countries. But it also believes searching for and applying for studies could be more patient-centered.
“There are hundreds of different websites and dozens of mobile apps where people can search for clinical trials, but we need to give them the easiest tools and educate them,” Jon observes, adding that one site returned entirely different results for the searches “gastric cancer” and “stomach cancer.”
Jon says his dream is to work with one or more pharmaceutical companies to develop an online “one-stop-shop” of available clinical trials and treatment options.
Ultimately, stakeholders need to work together to identify and diagnose gastric cancer patients in the early stages of the disease and introduce them to clinical trials as soon as possible, he adds.
“The earlier the potential patient can be identified, the better the outcome. If the clinical trial recruiter cannot connect with the patient, it’s too late – they will not have enough patients to develop their drugs, and survival will never improve.”