This year alone, about 220,000 people will be diagnosed with lung cancer in the United States. The disease accounts for more than a quarter of all cancer deaths and is the leading cause of cancer death among both men and women.
Yet the stigma and misinformation surrounding lung cancer have proven hard to dismantle, leaving many people diagnosed with the disease unsure of where to turn for help. CONQUER teamed up with the Bonnie J. Addario Lung Cancer Foundation to look at some of the resources available for those dealing with a recent lung cancer diagnosis.
An oncology nurse navigator is one of the most valuable resources available to patients. Scott Santarella, President and CEO of the Addario Lung Cancer Foundation, notes that navigators are more than just knowledgeable—they’re an empathic source of guidance and a non-biased third party for their patients.
“The nurse navigator or the nurse working with the patient’s doctor can provide guidance through the medical setting,” he says. “A navigator can often provide guidance relevant to the person’s particular needs, which is invaluable right after a diagnosis.”
In addition to working closely with their doctors and nurse navigators, many patients turn to the Internet for research and networking.
Santarella encourages people to be careful about the information they find online. He recommends the Lung Cancer Foundation of America and the Lung Cancer Alliance for reliable information about lung cancer.
The Patient Advocacy Foundation is a good place to look for information about access and coverage for medications. Individual pharmaceutical sites also provide good information about targeted treatments for patients with a genetic link to lung cancer and may also provide resources for people who need financial assistance to afford their medication.
In addition to these resources, the Addario Lung Foundation website provides the following unique services and resources for patients and their families:
The Patient Portal
“The Patient Portal is specifically geared to provide your average person with a good understanding of the disease,” Santarella says. “It provides contact information for people who want to reach out to our office for guidance, background information on the genetic testing we offer, and basic information that people can use to empower themselves after a diagnosis.”
Community Hospital Centers of Excellence
“Most patients are seen at community hospitals, which may or may not have a strong lung cancer program,” he says. “Some patients have a hard time finding an expert at the local level, which is the reason we created our Community Hospital Centers of Excellence program to identify hospitals that practice a multidisciplinary approach to lung cancer care.”
The Addario Lung Cancer Foundation is in the process of identifying hospitals that meet 15 process metrics proven to increase survivability and overall quality of care. Hospitals and cancer centers that meet these standards are eligible to join the Centers of Excellence Program.
“Our goal is to have 60 to 70 Centers of Excellence by the end of 2018, so that many lung cancer patients will be within a three or four-hour drive of one of these centers,” Santarella says. “We’d also like to work with private practice groups and larger health systems down the road.”
The Lung Cancer Foundation Mobile App
The Lung Cancer Foundation app includes the ALCF’s patient handbook, information on Centers of Excellence, a glossary of relevant terms, patient treatment data tracking, and information about clinical trials and genomic testing.
“The app is great for when you’re seeing your doctor and you need all of your information right at your fingertips,” Santarella says. “We’re finding that older people diagnosed with lung cancer are being supported by their 30- to 50-year-old children, who are using the app to help their parents.”
The app is available for free through Google Play or the iPhone app store.
The Living Room
The Living Room is a monthly, live-streamed educational support group for patients. The educational component features experts from around the world who talk about specific issues related to lung cancer. It also provides patients and caregivers the opportunity to connect and learn from each other.
“Over 700,000 people from 143 countries have tuned into our video library that houses all of the Living Room sessions,” Santarella says. “Obviously the need is there. It’s become one of our best resources.”
Each Living Room support group is about two hours long and available online after the session is over. The ALCF also produces a more digestible 20-minute version that includes the educational segment.