The Caring Ambassadors Program, Inc. (CAP) is a national nonprofit organization that provides information, referral to resources for personal support, and public advocacy for people at risk for or living with lung cancer or hepatitis C.
Lung cancer is still the leading cause of cancer deaths nationally, causing an estimated 157,300 deaths in 2010. A lung cancer diagnosis also frequently leads to patients being stigmatized. The common question asked of people with lung cancer—“Did you smoke?”—carries a judgmental jolt of blame. However, former smokers and even people who never smoked also get lung cancer. When someone who has never smoked gets lung cancer, the stigma can create different “camps” in the patient community and dilute efforts to organize and work together toward a cure. CAP agrees with other patient-focused organizations that nobody “deserves” lung cancer, particularly when products that cause most lung cancer are both legal and strongly addictive.
CAP is based in Oregon City, Oregon, and offers national programs built on the “we’re all in this together” approach of its founders. To maximize its services and effectiveness, CAP’s staff works together through a virtual office. Cindy Langhorne, CAP Lung Cancer program director, is enthusiastic about CAP’s Lung Cancer Program and its commitment to providing accessible, accurate information about the disease, treatment options, and supportive care resources to as many people as possible.
“We try to do a lot with today’s technology,” says Cindy. “Our website, lungcancercap.org, social networking, and e-mail really increase our reach, compared to the days of telephone hotlines.”
The program’s newsletter, Choices and Hope, is available online, and Cindy posts and emails weekly “E-News” about lung cancer topics, and compiles a monthly review of relevant medical literature. Medical Writers’ Circle features articles by lung cancer clinicians, including oncology nurses and oncology social workers. Brenda Wilcox, RN, BSN, OCN®, wrote an inspiring and informative piece about the role of the patient navigator.
Lung cancer patients and their families and friends express appreciation for this vital information. One grateful person wrote to say, “The CAP Lung Cancer Program was there for me and my family when we needed them most. They helped us to understand lung cancer and what to expect each step of the way. Thank you.”
Lung cancer survivor Roberta “Birdie” Urban, a Caring Ambassador and member of CAP’s board of directors, knows the importance of understanding one’s treatment options. She recalls knowing, “I might not make it through the surgery. But the other choice was to do nothing. I wanted to try!” Cancer-free for 8 years, she shares her story of hope on the CAP Lung Cancer website. Other features on the website include sections on supportive care, complementary healing, information for children, and links to many useful resources.
“There’s always more that we want to do to expand our services,” Cindy says, “We are in the process of producing an online book, Lung Cancer Choices, 1st Edition, similar to the Hepatitis C: Choices in Care book on CAP’s Hepatitis C site.”
As with other nonprofit organizations, CAP cultivates donors and applies for program grants, a continuing and essential task. Corporate donors help support either specific projects or ongoing operations. Private donations often arrive with notes to honor or memorialize people with lung cancer. Cindy finds that recruiting and coordinating volunteers to help with outreach and event planning also takes energy and time. “It’s a lot of behind-the-scenes organizing,” says Cindy, “and our volunteers’ efforts really multiply our effectiveness.”
CAP attends major conferences, such as the annual meetings of the Oncology Nursing Society and the American Society of Clinical Oncology, and networks with other organizations. For example, Cindy is the current chair of LungCAN, an action-oriented national coalition formed in late 2009. LungCAN consists of 24 member organizations that work to increase awareness of lung cancer and work collaboratively on initiatives that better the lives of those at risk for and living with lung cancer. “We encourage cooperation across our respective areas of focus,” explains Cindy, “and on the LungCAN site, we highlight each other’s events.”
As CAP’s Lung Cancer Program evolves, it remains true to its formative vision. “CAP believes strongly in the power of people working together, and that by doing so, we will make far more significant advances than could be made by any group or discipline working on its own.”
Want OncLive Nursing to feature your advocacy group? Email Jason Broderick