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Helping Cancer Patients and Caregivers Navigate Immunotherapy Treatment
Claire Saxton, MBA; Joanne Buzaglo, PhD; Sue Rochman, MA; and Alexandra Zaleta, PhD
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Produced by Nicole Beagin and Laura Joszt

Helping Cancer Patients and Caregivers Navigate Immunotherapy Treatment

Claire Saxton, MBA; Joanne Buzaglo, PhD; Sue Rochman, MA; and Alexandra Zaleta, PhD
Patients, caregivers, and providers need education on immunotherapy treatment, support in patient-provider communications as well as support in mitigating the financial impact of immunotherapy treatment.
Cost of Care

No discussion of immunotherapy would be complete without mentioning the total cost of new cancer treatments. The summit underscored the high degree of distress patients experience around the cost of cancer in general, and immunotherapy treatments, in particular, even within the context of a clinical trial. As many have previously noted, the total annual cost of care for immunotherapy and other novel treatments can exceed $100,000.6 The patient burden, through co-payments and co-insurance, can be tens of thousands of dollars. When patients do not have access to or do not know how to access patient assistance programs, these costs can quickly contribute to what is now widely referred to as the financial toxicity of cancer care.7  

CSC’s Support Services for Patients and Caregivers

In June 2016, CSC launched its Frankly Speaking About Cancer Clinical Trials program (www.CancerSupportCommunity.org/ClinicalTrials). This landmark education series aims to build awareness among patients and caregivers about the importance of clinical trials as a viable treatment option. This program will be especially important for patients as the number of new, experimental immunotherapy treatments increases.  

CSC provides services that can help patients and caregivers understand and manage their treatment, mitigate distress, and get help assessing and managing cancer costs. These include:
 
Table. Education Programs and Information Created for Cancer Patients and Caregivers (see PDF at the end of the article).

Conclusion/Future Directions

Analysis of survey data and immunotherapy workshop evaluations, along with insights from CSC’s Immunotherapy Summit demonstrate that patients, caregivers, and even primary care and emergency healthcare providers need education on immunotherapy treatment. This education needs to be bolstered with patient–provider communication support and tools to ensure that patients, caregivers, and all healthcare team members are working together to improve patient health. Finally, patients and caregivers need referrals to psychosocial support and educational resources, like those available from Cancer Support Community, to help them understand their disease and treatment, reduce distress, manage the total cost of care, and improve quality of life.    

Over the next few years, findings from clinical trials that are now underway will shed light on the increased impact of immunotherapy on cancer—from prevention through treatment. In preparation for potential advances as well as inevitable setbacks and disappointments, new content needs to be developed to help cancer patients and caregivers navigate immunotherapy treatments. CSC is very close to releasing immunotherapy content for 3 additional tumor types, material in Spanish, and video testimonials from patients and caregivers who have experienced immunotherapy treatment. Our quantitative data and qualitative insights reinforce the need for more content to be distributed to additional patients and caregivers, as well as the need for continued improvement of this content over time.  

CSC is also engaging in conversations with policy makers and other patient advocacy organizations on the impact of the total cost of these treatments on patients as our healthcare system braces for changes. This is a time in cancer care where high hopes meet unknowns. As we move forward, it will be critical to include the voices of cancer patients and caregivers in the development of new immunotherapy educational programs, as well as in finding solutions to the impact of systemic changes.



Claire Saxton, MBA, is senior director, Education, Cancer Support Community.
 
Joanne Buzaglo, PhD, is senior vice president, Research and Training, Cancer Support Community.
 
Sue Rochman, MA, is contractor for Cancer Support Community as well as an independent health writer.
 
Alexandra Zaleta, PhD, is director, Research, Cancer Support Community.

ADDRESS FOR CORRESPONDENCE

Claire Saxton, MBA 
734 15th Street NW, Suite 300 
Washington, DC 20005
 
E-mail: csaxton@CancerSupportCommunity.org
REFERENCES
  1. The Cancer Moonshot Blue Ribbon Panel Report 2016. National Cancer Institute website. https://www.cancer.gov/research/key-initiatives/moonshot-cancer-initiative/blue-ribbon-panel/blue-ribbon-panel-report-2016.pdf. Published October 2016. Accessed December 28, 2016.
  2. ClinicalTrials.gov. Search Immunotherapy and Cancer. https://clinicaltrials.gov/ct2/results?term=cancer+immunotherapy&recr=Open. Accessed December 28, 2016.
  3. Timeline of Progress. Cancer Research Institute website. http://www.cancerresearch.org/our-strategy-impact/timeline-of-progress/timeline-detail. Accessed December 28, 2016.
  4. Frankly speaking about cancer. Cancer Support Community website. http://www.cancersupportcommunity.org/frankly-speaking-about-cancer. Accessed January 11, 2017.
  5. Amsellem M, Suarez R, Wilson C. Informing and empowering cancer patients about immunotherapy: a psychoeducational workshop addressing needs in an emerging field. Presented at: 2016 American Psychosocial Oncology Society 13th Annual Conference, March 3-5, 2016, San Diego, CA. 
  6. Carroll J. New immunotherapies for cancer yield exciting results but high cost. Managed Care website. http://www.managedcaremag.com/archives/2013/10/new-immunotherapies-cancer-yield-exciting-results-high-cost. Published October 2013. Accessed January 11, 2017.
  7. Financial toxicity and cancer treatment (PDQ)-health professional version. National Cancer Institute website. https://www.cancer.gov/about-cancer/managing-care/financial-toxicity-hp-pdq. Updated December 14, 2016. Accessed December 28, 2016.
PDF
 
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