Jim Weiveris' journey into advocacy for people with neuroendocrine cancer began in the late 1990s. His first wife, Susan, began to experience vague symptoms, like debilitating stomach pain, that the doctors couldn't diagnose. Finally it was suggested the pain might be related to her gall bladder. Scans were ordered and revealed liver metastases that eventually led to a diagnosis of gastrointestinal neuroendocrine tumor (NET) in 2000.
"At that time, we had never heard of carcinoid. There was nothing on the Internet about it, and our doctor didn't know much either," Weiveris says. "Right then, we saw a real need for education and an opportunity to get involved."
Jim and his wife, who passed away from her disease in 2003, helped cofound the NY Metro Carcinoid Support Group for patients and caregivers in the New Jersey/New York metropolitan area. The number of patients and caregivers quickly grew, and soon Jim helped form a separate New Jersey Carcinoid Cancer NETwork, which he continues to oversee today. Jim is sharing his 2013 Warner Advocacy Award with the New Jersey Carcinoid Cancer NETwork and the Carcinoid Cancer Foundation.
To this day, the ongoing need for education is "why I'm in it," Weiveris says, and is the key reason for him receiving the Warner Advocacy Award this year.
"New patients come to us like deer in the headlights," Weiveris says, which is to be expected. "We teach them about informing yourself and taking care of yourself – not having a pity party. It's important for each person to be their own advocate."
Jim believes that sharing experiences helps patients and caregivers learn about handling their problems and facing their disease. The New Jersey Carcinoid Cancer NETwork holds 8 or 9 regular meetings a year, along with an annual conference and various other events, like parties and barbeques. Telephone and e-mail support are available around the clock. Jim and his second wife, Cyndi, field many of the inquiries, usually spending an hour or more on a phone call with a newly diagnosed patient. Jim has even accommodated requests to accompany people on their doctor appointments.
Jim's relationships with NET experts also allow him to act as an information conduit for community practitioners and oncologists. Health care professionals attend many of his meetings along with patients, providing great opportunities for conversation and learning.
"Doctors are getting better at making the diagnosis, mainly because more of them are willing to say, well, maybe this could be a NET," Weiveris says. Jim is also actively involved in the North American Alliance for Patients with Neuroendocrine Tumors (NAAPNET), which brings advocacy leaders together from around the United States.
Friends also cite his computer savvy and penchant for forming quick and meaningful relationships to educate others about both the medical and social aspects of neuroendocrine cancer. In the early 2000s, Jim began working with a team to videotape conferences and events and share them with others who could not physically attend – an idea that may seem commonplace now but was novel at the time.
"Not everybody shows up to every meeting," Weiveris says of his support group. "But that's the greatest thing for these patients: when they're too busy living their lives to make a meeting."
Novartis Oncology and Patient Advocacy provide support to patients through an array of programs and services.
The NET Alliance is a Novartis Oncology initiative working to help improve outcomes for patients with NET.