Patient Advocacy Organizations and Cancer Care

Laura Cannon, PharmD MPH
Clinical Assistant Professor and Oncology Pharmacist
The University of Texas at Austin College of Pharmacy
and Dell Medical School Livestrong Cancer Institutes
Austin, TX

Chelsea Gustafson, PharmD BCOP
Oncology Pharmacy Specialist
Community Health Network—Community Regional
Cancer Centers
Kokomo, IN

At HOPA’s 2019 Annual Conference, a survey was conducted during the patient outreach breakout session to better understand pharmacists’ utilization and awareness of patient advocacy organizations as they provide resources to their oncology patients. Attendees at that session heard from a panel of representatives about a number of advocacy resources available. Panel members included a patient and also representatives of the Leukemia and Lymphoma Society (LLS), the Pancreatic Cancer Action Network (PanCAN), and the Society for Immunotherapy of Cancer (SITC).

Patient advocacy organizations work to ensure that oncology patients have access to a variety of services: education, financial assistance, support groups, and clinical trial availability. They often provide the extra support for patients and their caregivers that may be difficult for hospitals and clinics to provide. Each organization offers unique services. As an example, LLS offers copay assistance programs and a patient aid program that provides support for patients by giving financial assistance for expenses that occur as a result of cancer treatment. Outside of various forms of financial support, LLS offers educational webcasts on specific types of blood cancer and potential treatments, support groups for patients and caregivers, and the opportunity to become a part of the LLS community. PanCAN offers education on molecular profiling and personalized cancer treatment, as well as information connecting patients to clinical trials. PanCAN also provides personalized one-to-one support for patients and caregivers through its Patient Central program. SITC offers sources for free and reliable immunotherapy education on multiple cancer types and access to a patient resource guide for those receiving immunotherapy. These are just a few examples of how connecting patients to advocacy organizations can provide access to supportive care for both the patient and the caregiver beyond the scope of the healthcare system.

Our survey results identified a need for increased awareness of the resources available through patient outreach organizations. The majority (74%) of the 156 survey respondents said they had referred patients and caregivers to these organizations in only 20% of cases or fewer in the previous 6 months. Advocacy organizations are best known for giving patients access to copay assistance and free-drug programs, and our results support the notion that many of us access organization websites only for these reasons. When these resources were used for reasons other than locating financial assistance in obtaining medications, the purpose was likely to be finding information on local support groups and clinical trial availability. Lack of knowledge was identified as the number-one barrier to the use of patient advocacy resources, followed closely by time constraints in the work environment. In addition, some respondents indicated that making such information available was outside the pharmacist’s job responsibilities.

These results highlight an important opportunity to expand awareness of patient advocacy organizations to pharmacists and other members of the healthcare team in order to improve support for patients and caregivers and give them greater access to resources. As integral members of the healthcare team who often spend a significant amount of time on patient education, pharmacists may be the first members of the team to recognize a patient’s need. Understanding the role of advocacy organizations gives us the opportunity to fulfill those needs for our patients and their loved ones. The survey results also underscore the importance of a team-based approach to cancer care. As pharmacists, we can step in to educate our healthcare colleagues on the value of connecting patients to cancer advocacy organizations and their numerous resources.

In addition to providing patient education on the value of these advocacy organizations, pharmacists can become more involved as volunteers for these organizations or even members of their paid workforce. As pharmacists, we can offer a unique perspective to these groups and should consider involvement in their leadership and steering committees. These opportunities allow us to expand into nontraditional roles in the field of oncology pharmacy and challenge us in new ways that will ultimately help us provide better patient care. They also allow us to expand our provision of patient care on a national or even international scale.

Our survey results indicated that 30% of respondents have experienced a time during their practice when they could not find a resource they wanted to use. Respondents identified resources such as transportation, interpreter services, local and online support groups for patients and caregivers, complementary and alternative medicine, and copay assistance, many of which could be provided through cancer advocacy organizations. Our survey results indicate that not knowing about the valuable resources available to patients through advocacy organizations is common in our profession. In fact, neither of us was aware of the abundant resources offered by these organizations until we became involved with HOPA’s Patient Outreach Committee. The survey demonstrates that our organization and those in our profession have a tremendous opportunity to expand awareness of patient advocacy organizations and their resources. Until now, this need was not in our view, and we are excited for the opportunity to learn more about using and educating others on these valuable resources for patients.

Visit the websites of these advocacy organizations to become familiar with the resources they provide:
Leukemia and Lymphoma Society—
Pancreatic Cancer Action Network—
Society for Immunotherapy of Cancer—