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.