P.O. Box 24083, New York, NY 10017 www.LungCAN.org

September 15, 2016

Steven D. Pearson, M.D., M.Sc., FRCP
President
Institute for Clinical and Economic Review
Two Liberty Square, Ninth Floor
Boston, MA 02109

RE: Treatment Options for Advanced Non-Small Cell Lung Cancer: Effectiveness and
Value – Draft Evidence Report

Dear Dr. Pearson:

The Lung Cancer Action Network (LungCAN), an association of 501(c)(3) nonprofit organizations advocating for and serving the lung cancer community, requests the invaluable patient voice be represented in the evaluation of cancer drugs that may ultimately benefit patients.

Moreover, LungCAN and our member organizations respectfully request that experts in the field of lung cancer be included in that analysis and that the process remains transparent throughout. We specifically request appropriate peer-review by lung cancer specialists (such as oncologists and thoracic surgeons) who are not associated with ICER or the pharmaceutical industry.

We strongly encourage ICER to continue to reach out to stakeholders, particularly patients, advocacy organizations and lung cancer clinicians, as they undergo the process of creating the model and in order to best represent how treatments are being used and what patients value. We are able and willing to assist in this process to help ensure that ultimate recommendations continue to provide access to proper care, based on the unique needs of each patient.

A primary and necessary consideration is the dramatic pace of change in the field of lung cancer diagnosis and treatment. This includes multiple treatments, sequencing of drugs, and combinations in development. The “standard of care” is rapidly evolving, including driver mutations and the use of biomarkers. The evaluation in comparing treatments, must therefore take into account how medicine is being practiced now and in the future. Given the recent introduction of immunotherapy in the treatment of lung cancer, and the lack of long-term data, it would be premature to conduct a meaningful review, and thus make a value recommendation on this class of agents.

It is also imperative to recognize that lung cancer is not one disease, but rather a collection of many subsets of disease, giving health care providers the ability to tailor and personalize treatment regimens so that patients get the highest value drug for their cancer. Differentiation by histology and subpopulations should be addressed in order to allow for on-going personalized medicine, as well as reflect the changing treatment environment and biology of the disease.

Finally, in addition to quality-adjusted life year, other measures of quality, reflecting patient values and improving care must be considered. LungCAN looks forward to working with ICER to integrate perspectives of patients and families impacted by lung cancer in each step of the analysis to ensure they truly benefit from a more personcentered, affordable and goal-directed care.

Thank you for the opportunity to comment. If you have any questions, please feel free to contact us at info@lungcan.org.

Sincerely,

Bonnie J. Addario Lung Cancer Foundation – www.lungcancerfoundation.org

Caring Ambassadors Program, Inc. – www.caringambassadors.org

Free ME From Lung Cancer – www.freemefromlungcancer.org

Janet Freeman-Daily, lung cancer patient/activist at https://grayconnections.net/

To Dusty Joy Foundation (LiveLung) – www.LiveLung.org
Lung Cancer Alliance – www.lungcanceralliance.org

Lung Cancer Circle of Hope – www.lungcancercircleofhope.org

Lung Cancer Foundation of America –www.lcfa.org

LUNGevity.org – www.lungevity.org

Lung Cancer Initiative of North Carolina – www.lungcancerinitiativenc.org/

Rexanna’s Foundation for Fighting Lung Cancer – www.rexanasfoundation.org

Upstage Lung Cancer – www.upstagelungcancer.org