Lung Cancer Treatment to Benefit from Voice of Patients

Washington, D.C. (January 9, 2014)

Learning More About Lung CancerAt the end of December, the Food and Drug Administration (FDA) released its “Voice of the Patient Report: Lung Cancer”, the latest step in the Patient Focused Drug Development Initiative (Initiative) focused on better incorporating patient voices in the review and approval process for lung cancer drugs and diagnostics.  This is good news for lung cancer patients and their caregivers, because it means the FDA will factor in patient preferences and experiences with treatments as they make decisions about future lung cancer treatments and diagnostics. The American Lung Association is proud to have played a significant role in FDA taking this new, closer look at lung cancer treatment from the patient’s perspective.

Following an intense effort led by the American Lung Association, urging FDA to include lung cancer and other lung diseases in this Initiative, in April 2013, the FDA announced lung cancer would be among the 16 diseases in the first phase in the Initiative. Idiopathic pulmonary fibrosis was also included.

In June 2013, the FDA held its meeting on lung cancer. The American Lung Association engaged directly with FDA in order to ensure FDA heard directly from lung cancer patients and caregivers about the symptoms and side effects lung cancer patients’ experience, the daily impacts on patients’ lives, and patient perspectives on current approaches to treatment. In August, the Lung Association submitted its comments with the results from an extensive patient survey it conducted.

This FDA “Voice of the Patient” report summarizes the input provided by patients and patient representatives, including a number of American Lung Association volunteers, who participated in the meeting as well as the comments submitted to the docket, which largely supported the perspectives shared by participants at the meeting.

The report revealed the impact lung cancer has on patients’ lives varies widely and is often dependent on the stage of the disease, side effects from treatment and personal responsibilities. Patients shared that it is difficult to distinguish between symptoms of the disease and side effects of cancer treatments but identified fatigue, breathing difficulties, and chronic pain as the most significant symptoms affecting their daily lives – all of which are consistent with the findings from the American Lung Association’s patient survey.

While patients and their families are appreciative of the advances in lung cancer treatments, it is clear that treatment takes a tremendous toll on their lives. Patients take a range of medications to manage their symptoms and treatment side effects, with mixed effectiveness. Many report finding non-drug therapies such as nutritional changes, complementary medicine and supportive interaction to be valuable.

The results of the FDA report reiterated that lung cancer treatment decisions are highly individual. A number of factors influence a patient’s treatment decisions including family perspectives, age, overall health and financial considerations. When speaking about the tradeoffs between quality of life and prolonging life, according to FDA, the majority of patients appeared to value prolonging life. However, many other participants indicated that maintaining a good quality of life is equally as important as, or even more important to them, than prolonging life – which is also the finding of the Lung Association’s patient survey.

Participants acknowledged that priorities may change over time and noted that making treatment decisions is complicated by the pressure they sometimes feel to do whatever they can to prolong their life. They stressed the importance of support from family and loved ones during this time.

The Lung Association’s goal has been to empower and mobilize lung cancer survivors, and their families and caregivers in the drug development process and looks forward to working with the FDA as it implements the results of this report to ensure that patient needs and views are taken into consideration as they review new drugs and diagnostics.

The American Lung Association has a wide array of information and resources for lung cancer patients and their caregivers.  You can learn more about lung cancer here, find support and help in making treatment decisions at Facing Lung Cancer: Support From Day One, join one of our online or local support groups.