Aspects of Advocacy Support 
Head and neck cancer advocacy groups play a unique role in supporting patients with cancer at the individual, community, and national level. From cancer prevention through screening events to advancement of the field by increasing research funding, these organizations are instrumental in all phases of cancer care. Just as our healthcare system has adapted to the current COVID-19 climate by shifting efforts towards urgent medical needs, HNC advocacy groups have also prioritized providing individual level support to patients during this crisis. This has included offering educational resources to keep patients informed in regards to COVID-19, providing psychosocial support in the face of uncertainty, and assisting financially with costs of general living and care.
Professional organizations and HNC advocacy groups have responded promptly to concerns of patients by publishing numerous web-based articles, webinars, and podcasts to accurately inform patients of the impact of COVID-19.  General precautions regarding symptoms of COVID-19, best practices to reduce exposure and infectivity, and cancer care in the context of a pandemic have been the focus of many HNC advocacy groups. For example, the THANC (Thyroid and Head And Neck Cancer) Foundation has released helpful suggestions on how to handle changes in appointments or surgery as well as contingency plans in case of possible COVID-19 infection11THANC Foundation. Coronavirus (COVID-19): 15 Tips for Thyroid, Head and Neck Cancer Patients. https://thancfoundation.org/news/coronavirus-covid-19-15-tips-for-thyroid-head-and-neck-cancer-patients/. Published 2020. Accessed April 29, 2020.. Additionally, this organization has provided thyroid cancer-specific information, as often the medical management of thyroid cancer may be impacted by COVID-19xii. Both the HNCA and the THANC Foundation have given specific precautions for patients with tracheostomies or laryngectomee patients to reduce the risk of infectionxii,22Head and Neck Cancer Alliance. Navigating the COVID-19 Crisis: Resources for Patients, Survivors and Caregivers. https://www.headandneck.org/navigating-the-covid-19-crisis/. Published 2020. Accessed April 29 2020..
The HNCA has also worked to recognize and educate about psychosocial issues of HNC patients during a pandemic, especially those with concomitant psychiatric diagnosis such as major depressive disorder, anxiety disorders, or post-traumatic stress disorder. Highlighting these issues not only normalizes the psychological distress patients may face, but also provides succinct, yet helpful tips to them.
Many advocacy groups are committed to continuing all aspects of support as COVID-19 allows. Online forums have provided an avenue for patients to foster virtual relationships with other survivors. For example, ambassadors on HNCA’s Inspire blog have been actively posting messages of support and ways of coping to aid in elevating morale. Call lines have been kept open to provide patient and caregiver guidance during this time of crisis. Survivor matching programs also pair cancer survivors with newly diagnosed cancer patients to foster personal relationships that provide support and direction. Interestingly, representatives from Support for People with Oral and Head and Neck Cancer (SPOHNC) have noticed patients not only calling in to ask about specific concerns regarding COVID-19, but also to relay their feelings of isolation, anxiety and stress, placing advocacy group representatives in a position to help console and reprieve. This organization has also noticed that relatives of newly diagnosed cancer patients are calling in to “apply” for their loved ones to be matched with a survivor, as concerns about the vulnerability of family members with HNC during this period of social isolation are heightened. In response, SPOHNC has noted that over 100 HNC support groups are now connecting through video-sharing platforms and Facebook rather than in-person, with similar sessions also being hosted by branches of the HNCA.
Multiple financial assistance programs are also being utilized during this time of increased economic distress. The HNCA has provided gas cards to help patients afford transportation to and from office visits or treatment. Industry partners have also collaborated with the HNCA to provide waivers for drug costs during COVID-19 and to provide direct patient assistance through HNCA’s gas card program. Plans are underway to release a COVID-19-related webinar to help navigate HNC patients through these financially difficult times. The HNCLF provides financial assistance to low-income HNC patients nationwide to help with the costs of nutritional supplements, medical supplies not covered by insurance, copays, transportation, lodging, and dental care. Additionally, CancerCare, a general oncology advocacy group, has been targeting patients specifically undergoing active treatment who have been affected by COVID-19 to offset costs of general household expenses, transportation, childcare, and medication33Cancercare. Coronavirus (COVID-19) Resources. https://www.cancercare.org/coronavirus. Published 2020. Accessed April 29, 2020..
This wide variety of programs is meant to support HNC patients and their caregivers not only during treatment but also as they continue into survivorship. Additional work is underway to formally evaluate the needs and concerns of those reaching out to these organizations with the goal of being able to better serve them in the future.