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& Outreach

Strengthening the Community
Community is stronger than cancer is not just a tag line; it is our guiding principle. In 2021, we expanded our community to include more patients, caregivers, and healthcare professionals, than ever before, and advanced their interests before Congress and regulatory agencies.

Working with Advocates

In 2021, the Cancer Policy Institute’s grassroots advocacy efforts led to over 55 Cancer Support Community and Gilda’s Club advocates meeting with 73 congressional offices from 20 states, including six member-level meetings, and sending nearly 4,000 letters to Congress on issues important to the cancer community.

Working for Patients

We convened an Externally-Led Patient Focused Drug Development Meeting (EL-PFDD) on cancer cachexia, a stressful and frightening condition that causes weakness, muscle loss, and drastic, unintentional weight loss prior to diagnosis or during treatment. EL-PFDD meetings enable patients and families to share their experiences directly with the FDA and other stakeholders and help lead to the development of more effective patient-centered policies and protocols.
In addition to our work with Cachexia, to gain a better understanding of the costs associated with the implementation of step therapy, we launched Phase 1 of a two-phase study, which will analyze commercial claims data to determine if step therapy achieves savings or increases cost burdens to the health care system and patients.
“There are urgent needs in cachexia. This includes expanding education and increasing evidence, resources, and insurance coverage for supportive medical nutrition and physical therapy.”
Dr. Jose Garcia, MD, PhD

Working with Universities

We launched CSC U at the University of Georgia. This new initiative serves a population often overlooked by traditional cancer support organizations: students impacted by cancer (either living with it personally or with a family member who has been diagnosed). The program builds awareness, provides education, and encourages social activities to help them bond over shared knowledge and experiences.
"Having a CSC U on campus lets young adults know they aren't alone in their battles."
Sai Sanjana Darsipudi, B.S. Biology, (Pre-Med Track), University of Georgia, class of 2023
And to reach the AYA community, who are in a class of their own when it comes to dealing with the complications of a cancer diagnosis, we created a special podcast series, “Young and Diagnosed,” which features young people who share their inspiring stories and insights with honesty and candor. Our second episode, featuring advocate, Jacqueline Smith and actor/dancer, Evan Ruggiero, recently won a gold medal Digital Health Award.

Working for Physicians and Health Professionals

Even before the pandemic, doctors and other healthcare providers were being tested by a number of stressors that impacted their emotional well-being and, by extension, patient care. For oncologists, the situation was especially dire. In June 2020, an American Society of Clinical Oncology survey revealed that 45% of its member respondents reported experiencing signs of burnout. Our own research, led by the Institute of Excellence in Psychosocial Care, confirmed these findings and also discovered that “providers of color" experienced lower levels of compassion satisfaction compared to other racial groups. To address this growing concern, we developed a seven-part online workshop to help practitioners survive and thrive in their “new abnormal” while rediscovering the calling that drew them to medicine in the first place. The First Aid Toolkit covered such topics as understanding the role of burnout, compassion fatigue, and moral distress on personal and workplace wellness and offered tips on developing fortitude, team building, and fostering self-compassion. The series will continue in 2022 and focus on issues of health equity in oncology.

First Aid Toolkit Series
Webinars on Burnout-Prevention and Treatment

“I am going to have my interns view the session. I have already noticed the panic is less...I am pausing to breathe and have realistic human expectations.”
First Aid Kit workshop participant
Rounding out our focus on burnout, we produced a special Frankly Speaking episode “Running on Empty,” where two experts, Joseph Stern, MD, and Dan Shapiro, PhD, shared their insights and approaches for recognizing and overcoming it.

Care During Covid

The pandemic’s ongoing impact on people with cancer prompted CSC to organize the COVID-19 and Cancer Coalition, a group of nearly 40 key cancer key oncology thought leaders and stakeholders. This coalition has worked to understand the current and ongoing impact of the pandemic on the lives of cancer patients and survivors, who have found it challenging to receive necessary health care and support services during long periods of isolation and social distancing.
As the pandemic grinds on, we continue to study its short-term and long-term impact on patients' physical, financial, and emotional well-being. In the past year, we have also developed new resources to advance patient care, health equity, and member education.
"Researchers report that nearly 10 million cancer screenings were missed in the US during the pandemic."

Working for Caregivers

CSC has been a recognized expert in caregiving for over four decades, surveying the landscape and contributing to a greater understanding of the challenges faced by this often overburdened and under-resourced population. In 2021, our Research and Training Institute invited them to share their insights in its updated Cancer Experience Registry. This survey captures the views of both patients and caregivers over time and allows for a unique look at the paired relationship between the two, providing critical insights into cause-and-effect relationships between key aspects of the cancer experience and patient outcomes.
"If I can help others in the future, I want to do that—even if it’s just by answering a few questions.”
CER Participant

Patients and Caregivers - Why We Tell Their Stories | 2021 Annual Celebration

Working for All

CSC has over 175 locations worldwide, including 52 licensed network and healthcare partnerships, providing a broad array of free programs, support groups, navigation help, and classes online and in person.
"For every one cancer patient, there are at least three others impacted by the diagnosis—spouse, partner, child, caregiver, employer.”
Sally Werner, CSC, Chief Experience Officer
Last year, we set up new partnerships with the Indian Family Health Clinic (IFHC), Great Falls, MT and CSC at the University of Georgia and opened new network sites in Massachusetts, Durango, CO and Washington, D.C.
Our annual leadership conference was held virtually again this year, bringing nearly 300 leaders together for camaraderie, information-sharing, and networking. Over 150 participants also gathered at our first virtual Development Conference to learn the best practices for running and funding a small nonprofit in order to maximize its free service offerings.
"Gilda’s has had an extraordinary impact on my recovery and continued positive attitude. It’s not just a place. It’s a mindset."
Terry, diagnosed with laryngeal cancer