Challenges Faced by Advocacy Organizations
In addition to the increased need to provide ever-evolving support to their community, advocacy organizations also face many direct and indirect challenges to the development, implementation and funding of their programs.  One primary service offered by many cancer advocacy groups is the organization of local awareness events and support groups.  Such meetings in the past have served as valuable opportunities to increase public knowledge of HNC and for survivors and caregivers to support and learn from one another during the challenging time of cancer treatment and survivorship.  As the HNC population is a group that is in large part more vulnerable to respiratory diseases such as COVID-19, increasing care must be taken when organizing such gatherings.  Regular in-person meetings are no longer appropriate in the current climate of social distancing.   However, while technologies like teleconferencing may allow many professions to continue regular and productive interactions, many HNC survivors may not have the resources or familiarity with these platforms to be able to fill this void.
In addition to the disruption of smaller local meetings, larger national programs have also been impacted.  One primary example is the 2020 Oral and Head and Neck Cancer Awareness Week.  This annual event, hosted by the HNCA, is designed to raise public awareness of the signs and symptoms of head and neck cancer as well as ways of preventing the disease.  Each year, between 200 and 300 screening and awareness events are held worldwide. Common venues range from community health fairs to large scale screenings at professional sporting events.  Due to the challenges inherent with social distancing, screenings this year have been postponed or converted to media-based awareness campaigns.  Consequently, the ability to garner focused attention and resources for the cause has been blunted.
An additional prominent program to be impacted is the inaugural Head and Neck Cancer Survivorship Symposium, that was to be held in Chicago, IL, this July immediately preceding the 2020 International Meeting of the American Head and Neck Society (AHNS).  The theme of this meeting was “Survivorship Through Quality and Innovation,” and such a pairing was to provide a unique opportunity to join providers with their patients on a larger scale to not only educate, but also learn from them and better understand their needs and priorities.  While plans remain underway to convert aspects of the symposium to an on-line format and potentially hold an in-person session in conjunction with the 2021 AHNS meeting, the loss of the current event is still significant and impactful.
Another consequence of the current crisis has been a reduction in funding of these not-for-profit organizations.  The HNCLF, for example, was forced to cancel its flagship annual in-person “Masks for Aid” fundraising event, and convert its development efforts on-line. The HNCLF’s other fundraising initiatives have also been postponed or rescheduled due to safety concerns related to COVID-19. Overall, they are expecting a significant reduction in philanthropic gifts this year. With the profound overall societal and economic impact of the pandemic, a sharp decline in general donations to these advocacy groups is anticipated.  Moreover, with shifts being seen in many aspects of health care, industry support through educational grants and general sponsorship may also be reduced.
Lastly, these groups, by their scope and nature have a limited number of paid and volunteer staff, all of which are subjected to the same pressures that impact the general public at-large such as the risk of infection to themselves or their family, transitions to home/e-learning for education of children, and layoffs of family members resulting in personal financial strain. However, while all of these obstacles are significant, by experiencing them, advocacy organizations are able to better understand and relate to their communities and develop programs designed to support them.