More than 200 coronavirus-specific calls and live chat messages have come into the Cancer Support Community’s (CSC) Cancer Support Helpline, 1-888-793-9355, since mid-March.

Calls to these centers are coming in from patients experiencing delays in their primary and potentially curative oncologic surgery. Others have not yet been diagnosed with cancer, but biopsies, mammograms or other tests have been put on hold. Many survivors are worried they are at increased risk of serious complications or death due to COVID-19.

Coronavirus concerns make it clear: This is a very difficult time to be a patient with active cancer, or a survivor.

“People are in stressful and sometimes physically painful situations,” said Dawn Sittauer, a program director at Fred Hutch, the contractor who oversees the CIS.  “The ability to get regular cancer care, or enroll in a clinical trial, is very challenging. Cancer is always a burden, but there is a very great burden on many patients right now.”

People answering the phones, chats, and emails for oncology patients and survivors are particularly vital right now. They provide connection to those who are isolated, offer the opportunity to be heard for all, and provide real assistance. While support line staff can’t offer specific medical advice, they can provide accurate, science-based information and suggestions to help address, as much as possible, the complex problems patients and their caregivers face.

For example, they can provide names of alternate hospitals, nearby clinical trial sites, or experts who can provide answers. For survivors worried about increased risk of COVID-19 complications, they can share factors – such as type of cancer treatment, when it was administered, and patient health status – that may impact COVID-19 risk. Support line staff can provide relevant information for them to discuss with their physician.

SWOG’s patient advocates have always been active, even outside of our group, and I am grateful for the extra help they provide:

- SWOG patient advocate committee Vice Chair Hildy Dillon leads CSC’s program and education services, including the CSC Helpline team – which extended their hours to cover weekends during this crisis, and created an emergency fund for people on active cancer treatment. 

- SWOG myeloma advocate Jack Aiello has answered COVID-19 questions for Patient Power, and helped interview an infectious disease doctor about COVID-19 for Curetalks.

- Advocate Chair Rick Bangs has worked with fellow SWOG members to craft a COVID-19 FAQ for the Bladder Cancer Advocacy Network.

- Digital engagement advocate Jonathan Sommers is taping videos about cancer and COVID-19 and posting them to YouTube.

- Breast advocate Elda Railey, one of the co-founders of the Research Advocacy Network, has started a Friday online discussion group about COVID-19 and cancer trials.

- And Marcia Horn, our advocate for rare cancers and early therapeutics, has been triaging calls as CEO of the International Cancer Advocacy Network, helping late-stage cancer patients manage their care.

Thanks to all the people and groups suggesting resources and offering support to our patients during this crisis.

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