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Immunotherapy: What patients are hearing—and how to guide their expectations

August 27, 2018

    Editor's note: This popular blog was republished on Oct. 2, 2018.

    With over two thousand new immunotherapy agents in clinical and pre-clinical development and the expanding adoption of newly approved treatments, such as CAR T-cell therapy, cancer patients are inundated with promises of new "miracle" drugs. While dramatic advancements in our understanding about cancer biology and treatment are touted in the media, research from Cardinal Health suggests that only 40% of oncologists see precision medicine as a game-changer, while 57% of oncologists believe that it's too soon to predict the long-term impact of precision medicine.

    This is not to say that applications of precision medicine, such as immunotherapy, are not worthwhile or exciting for patients and providers. Immunotherapy offers an additional treatment option for many patients who have exhausted other traditional treatments, and it has even "cured" patients with advanced-stage disease. However, research suggests that immunotherapy treatments available today would benefit only about 15% of patients with advanced cancer.

    For cancer programs and providers, the challenge is navigating conversations with patients who have read the headlines, but who don't fully understand what does and does not apply to them. Here are two common misconceptions you can start addressing with patients.

    Patient misconception 1: Immunotherapy will cure my cancer

    Cancer patients aren't just learning about emerging treatments from their oncologists. Media coverage, television and social media ads, and online patient communities all help spread information on immunotherapy–often without adequate coverage of the potential risks and limitations. Cancer programs need to ensure their patients are informed of the risks and benefits that accompany precision medicine. Additionally, cancer centers must also be prepared to respond to patients who want immunotherapy in spite of a lack of evidence for their specific disease. Cancer programs can manage patient expectations by educating them about the complexities of precision medicine, and by addressing topics such as eligibility criteria and genomic testing.

    How oncology programs are providing access to precision medicine

    For example, Intermountain's Precision Genomics Cancer Research Clinic created a library of educational print and virtual reality materials on precision medicine that is available to all patients—and metastatic patients are automatically referred to this resource. Through this clinic, patients also have access to a team of medical oncologists, nurse navigators, and support staff poised to help inform their decisions and interpret results of genomic testing.

    How Intermountain overcame 2 key barriers to precision medicine

    Even with an understanding of the often serious and harmful potential side effects, the advances of immunotherapy can leave patients hoping for something more: a cure. However, only a small fraction of cancer patients stand to benefit from immunotherapy, and determining which patients will benefit is hard to predict. Providers must be prepared to discuss conversations about immunotherapy by grounding patient expectations and distinguishing between remarkable treatment advances and the promise of a cure.

    Use this cancer program resource compendium to help your organization encourage shared decision making

    Education on precision medicine shouldn't stop with patients. Cancer programs should consider strategies to educate their communities on the topic. Updating the cancer center's website or blog with basic education on the principles of and eligibility for precision medicine can solidify your cancer center's status as a trusted source of information for innovative treatments, while tempering unrealistic expectations for what these "miracle" drugs can and cannot do. Cancer programs can also incorporate education on precision medicine into ongoing community screening and prevention efforts.

    Patient misconception 2: Finding the right treatment was the main issue—my insurance will take it from here

    The cost of immunotherapy can be shocking for many patients, with PD-1/PDL-1 checkpoint inhibitors costing an average of $154,800 per year. Importantly, the sticker price of new drugs doesn't even fully capture the total cost for patients, which may include job loss and subsequent loss of insurance, child or elder care, or transportation and lodging.

    The cost of cancer treatment can have an outsized negative financial impact if patients are not informed of their financial obligation before treatment. Cancer centers should help patients understand their financial responsibility, tap into all available assistance from drug manufacturers, and develop realistic payment plans. This is best practice for all cancer patients, but particularly important for those receiving expensive precision medicine therapies.

    How cancer providers are addressing disparities and financial barriers

    The current focus on developing new targeted therapies and immunotherapies means it will play an increasingly large role in oncology in years to come. It's critical that cancer programs develop strategies now to encourage education, productive research, and meaningful conversations with patients on the benefits and risks of these therapies.


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