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\begin{document}

\title{The Role of Head and Neck Cancer Advocacy~ Organizations During the
COVID-19 Pandemic}



\author[1]{Michael G. Moore, MD}%
\affil[1]{Indiana University School of Medicine}%


\vspace{-1em}



  
  \date{June 15, 2024}


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\selectlanguage{english}
\begin{abstract}
The COVID-19 pandemic has had a significant impact on many aspects of
head and neck cancer care.~ The uncertainty and stress resulting from
these changes has led many patients and caregivers to turn to head and
neck cancer advocacy groups for guidance and support.~ Here we outline
some of the issues being faced by head and neck cancer patients during
the current crisis and provide examples of programs being developed by
advocacy groups to address them.~ We also highlight the increased
utilization of these organizations that has been observed as well as
some of the challenges being faced by these not-for-profit groups as
they work to serve the head and neck community.~%
\end{abstract}%



\sloppy


Flora Yan, BA\textsuperscript{1}, Erika Rauscher,BS\textsuperscript{2},
Amanda Hollinger, MPA\textsuperscript{3}, Mary Ann Caputo,
BA\textsuperscript{4}, John Ready, BS\textsuperscript{5}, Carole Fakhry,
MD, MPH\textsuperscript{6}, Cherie-Ann O. Nathan, MD\textsuperscript{7},
Chris Leonardis, MS\textsuperscript{4}, Danielle Yearout,
MS\textsuperscript{8}, Terance T. Tsue, MD\textsuperscript{9}, Terry A.
Day, MD\textsuperscript{10}, Michael G. Moore, MD\textsuperscript{11}

\textsuperscript{~1}Medical University of South Carolina, Charleston, SC

\textsuperscript{2}The Thyroid and Head and Neck Cancer Foundation, New
York, NY

\textsuperscript{3}The Head and Neck Cancer Alliance, Charleston, SC

\textsuperscript{4}Support for People with Oral and Head and Neck
Cancer, Locust Valley, NY

\textsuperscript{5}Foundation for Voice Restoration, Greenville, CA

\textsuperscript{6}Department of Otolaryngology-Head and Neck Surgery,
Johns Hopkins School of Medicine, Baltimore, MD

\textsuperscript{7}Department of Otolaryngology-Head and Neck Surgery,
Louisiana State University Health Sciences Center, Shreveport, LA

\textsuperscript{8}The Head and Neck Cancer Living Foundation, Overland
Park, KS

\textsuperscript{9}Department of Otolaryngology-Head and Neck Surgery,
University of Kansas School of Medicine, Kansas City, MO

\textsuperscript{10}Department of Otolaryngology-Head and Neck Surgery,
Medical University of South Carolina, Charleston, SC

\textsuperscript{11}Department of Otolaryngology-Head and Neck Surgery,
Indiana University School of Medicine, Indianapolis, IN

~

Corresponding Author:

Michael G. Moore, MD

Department of Otolaryngology-Head and Neck Surgery

Indiana University School of Medicine

1130 W. Michigan Street

FH 449

Indianapolis, Indiana 46202

Phone: (317)362-3846

Email: {mooremg@iu.edu}{}

~

Running title: Head and Neck Advocacy during COVID-19

~

Key words: Head and Neck Advocacy, Not-for-profit, COVID-19, Head and
Neck Cancer Support

~

Word Count: 4,095

~

~

\textbf{}

\textbf{~}

\textbf{Abstract}

\textbf{~}

The COVID-19 pandemic has had a significant impact on many aspects of
head and neck cancer care.~ The uncertainty and stress resulting from
these changes has led many patients and caregivers to turn to head and
neck cancer advocacy groups for guidance and support.~ Here we outline
some of the issues being faced by head and neck cancer patients during
the current crisis and provide examples of programs being developed by
advocacy groups to address them.~ We also highlight the increased
utilization of these organizations that has been observed as well as
some of the challenges being faced by these not-for-profit groups as
they work to serve the head and neck community.~



\textbf{Introduction}

The global COVID-19 pandemic has had a significant impact on all aspects
of society, with a large burden falling on members of the healthcare
community. With hospitals focusing on those ill from COVID-19, cancer
patients have the potential for delay or reduction in care as clinical
resources have been compromised.~Few populations have felt the effects
of these changes more than those being evaluated or treated for head and
neck cancer (HNC) as the multidisciplinary requirements for this
population includes dental, medical, otolaryngology-head and neck
surgery, and radiation and medical oncology, among others. The mucosal
nature of many of these cancers results in significant concerns about
aerosolization of viral particles and the potential for delays in care.~
In an effort to minimize infection transmission and conserve the limited
supply of personal protective equipment (PPE), health systems have
instituted policies that encourage social distancing such as
postponement of elective surgeries and outpatient clinic visits,
elimination of hospital visitors, and rapid adoption of alternative
means of care such as telemedicine and drive-thru testing.

Multiple societies and organizations involved in head and neck cancer
care across different specialties, including otolaryngology-head and
neck surgery, radiation oncology, dentistry, speech/swallowing
pathology, and medical oncology, have promptly issued management
algorithms to guide clinical care during this pandemic11Givi B, Schiff
BA, Chinn SB, et al. Safety Recommendations for Evaluation and Surgery
of the Head and Neck During the COVID-19 Pandemic. \emph{JAMA
Otolaryngol Head Neck Surg} . 2020 Mar.\textsuperscript{,}22Bartlett DL,
Howe JR, Chang G, et al. Management of Cancer Surgery Cases During the
COVID-19 Pandemic: Considerations. Ann Surg Oncol. 2020 Apr; doi:
10.1245.\textsuperscript{,}33Marron JM, Joffe S, Jagsi R, Spence RA,
Hlubocky FJ. Ethics and Resource Scarcity: ASCO Recommendations for the
Oncology Community During the COVID-19 Pandemic. J Clin Oncol. Apr 2020;
doi. 10.1200/JCO.20.00960.. The shift of focus away from non-urgent
conditions has been instrumental in creating a united effort to combat
infection. However, there is little precedent for navigating oncologic
care during such times. These abrupt changes in management may leave
cancer patients undergoing active treatment frightened, uneasy, and
isolated. Given the higher rates of emotional distress, cancer and
treatment impact on daily living, and mucosal exposures seen in head and
neck cancer patients, these individuals appear to be particularly
vulnerable to the fear and anxiety produced by the on-going public
health emergency44Wu Z, McGoogan JM. Characteristics of and Important
Lessons From the Coronavirus Disease 2019 (COVID-19) Outbreak in China:
Summary of a Report of 72 314 Cases From the Chinese Center for Disease
Control and Prevention. \emph{JAMA.} 2020;323(13):1239-1242..

Even in normal circumstances, let alone in this current climate, HNC
patients often are in need of guidance to alleviate their concerns and
many advocacy organizations have been proactive in providing support
through various platforms such as news articles, webinars, and financial
assistance. In addition to meeting patients' needs, advocacy groups also
play roles in providing patient education and raising public awareness,
moderating call lines and chat forums, sustaining research through
public or private funding, and representing the HNC community on
legislative boards. ~ This timely and important special communication
provides an outline of the issues being faced by HNC patients and
caregivers during the COVID-19 pandemic and some of the programs that
have been developed by advocacy organizations to address them. This
unprecedented collaboration among a variety of organizations and
advocacy groups also provides critical information on how the current
crisis has impacted the utilization of these groups and the unique
challenges being faced as they work to offer needed services to their
communities.

To capture up-to-date, relevant information on the impact of COVID-19 on
head and neck advocacy organizations, representatives of six prominent
North American head and neck cancer advocacy groups were contacted to
ask for participation by providing their respective groups' experience
during COVID-19. Semi-structured interviews were then conducted via
phone and email communications with all responding organizations to
identify: changes in volume of people in contact with their organization
(including website traffic, social media engagement, support phone line
volume and email communications), changes in observed patient concerns,
changes in HNC advocacy group programs, and challenges faced by advocacy
organizations during the COVID pandemic. Five out of six invited
organizations participated in interviews. Information obtained from
these communications is qualitatively summarized in the discussion
below.

\textbf{Patient Concerns~}

Head and neck cancer patients have many concerns surrounding the impact
of COVID-19.~ These individuals may experience more psychosocial
morbidity than non-HNC patients due to perceived disfigurement and the
inability to speak and eat properly11Howren MB, Christensen AJ, Karnell
LH, Funk GF. Psychological factors associated with head and neck cancer
treatment and survivorship: evidence and opportunities for behavioral
medicine. \emph{J Consult Clin Psychol.} 2013;81(2):299-317.. This may
leave these patients even more vulnerable to the uncertain nature of
changing treatment paradigms and mandates of social isolation.
Additionally, given the immunosuppression resulting from treatment as
well as HNC-specific sequelae such as having a tracheostomy or a
laryngectomy stoma, HNC patients are an at-risk population for COVID-19
infection. As such, worries that are natural to arise from the COVID-19
pandemic may be heightened in this group. These anxieties may manifest
as concerns regarding both the acute risk of COVID-19 infection as well
as its impact on their cancer treatment. The current environment may
make many patients wary of any healthcare environment for fear of
infection. This, coupled with the inability to proceed with care
alongside family members, has even led some patients to avoid treatment
altogether of their cancer22Sharma, A. The Surge after the Surge:
Anticipating the Increased Volume and Needs of Head and Neck Cancer
Patients after the Peak in COVID-19. \emph{Authorea.} April 29, 2020.
DOI: 10.22541/au.158817694.45399774.

Additional concerns of HNC patients revolve around accessibility and/or
delay of treatment. Uncertainty regarding medical, personal and social
issues are already prevalent in a cancer patient's life and the current
climate exacerbates these concerns. Management for HNC now requires
reassessment of risk and benefits of treatment during the COVID-19 era,
and alterations from standard practice, such as foregoing adjuvant
chemotherapy, may occur. A point of concern therefore is how changes in
overall management may affect patient outcomes.~ This sentiment was
recently reflected in a statement by a HNC patient on the Head and Neck
Cancer Alliance's (HNCA) Inspire patient forum, and is echoed by many
others:

``My fear is that we, cancer patients, will not get the best treatments,
if any. If all doctors and nurses are mobilized to help infected people
who will treat us?''

This patient concern is not unfounded. A recent survey of more than
1,200 cancer patients and survivors by the American Cancer Society
Cancer Action Network (ACSCAN), found that 27\% of patients in active
treatment experienced delays secondary to COVID-19 precautions, and 13\%
of those did not receive any information on rescheduling of
treatment33American Cancer Society Cancer Action Network. COVID-19
Pandemic Impact on Cancer Patients and Survivors.
https://www.fightcancer.org/sites/default/files/National\%20Documents/Survivor\%20Views.COVID19\%20Polling\%20Memo.Final\_.pdf.
Published 2020. Accessed April 29, 2020.. In this same assessment, over
40\% of active treatment patients felt that the response to COVID-19
would decrease access to care.~ Prioritization of HNC treatment,
although necessary to triage most high-risk cases, may leave certain
groups unattended. Ambassadors to the HNCA, who lead group-discussions
with HNC survivors, have noticed that many patients are worried they
aren't being considered a priority anymore. This may include those
receiving symptomatic or palliative care, or those with low-risk
pathologies such as low-grade salivary cancers or differentiated thyroid
cancers44Spicer J, Chamberlain C, Papa S. Provision of cancer care
during the COVID-19 pandemic. \emph{Nature Reviews Clinical Oncology.}
2020..~ Especially in the survivorship period, HNC patients may be at
higher-risk for compromised physical and psychosocial well-being55Sterba
KR, Zapka J, Armeson KE, et al. Physical and emotional well-being and
support in newly diagnosed head and neck cancer patient-caregiver dyads.
\emph{J Psychosoc Oncol.}2017;35(6):646-665. and may suffer
disproportionately from discontinuation of maintenance oncologic care.

Many support groups also have had to cancel meetings due to the
shelter-in-place requirements. This leaves many patients with limited
contact with those having similar post-treatment issues. These support
groups, especially for laryngectomees, provide important information on
how to cope with a new ``normal.'' These individuals often feel isolated
due to limited vocalization options making personal interactions
difficult. As a result, alternative portals, like video-conferences,
have been instrumental as they offer a chance to have some safe social
communications.

In addition to concerns regarding treatment and the associated recovery,
those in the post-treatment or survivorship phase may worry about the
fear of recurrence, as in-person follow-up visits usually entailing
scoping procedures or surveillance imaging may be indefinitely
postponed. Head and neck surgeons may suggest visits be held by way of
telemedicine and may order surveillance imaging if in-person
examinations cannot be completed. However, these virtual visits lack a
detailed physical exam, and patients scheduled for imaging may find
these services inaccessible. In fact, the recent ACSCAN survey reported
20\% of patients whose care has been impacted by COVID-19 were unable to
undergo imaging in the post-treatment context\textsuperscript{vii}.

Another patient concern may be the added logistical challenges that now
accompany their care. HNC patients have a higher financial burden
compared to other cancers and often are of lower income and educational
levels, with poorer baseline health status66Massa ST, Osazuwa-Peters N,
Adjei Boakye E, Walker RJ, Ward GM. Comparison of the Financial Burden
of Survivors of Head and Neck Cancer With Other Cancer Survivors.
\emph{JAMA Otolaryngol Head Neck Surg} . 2019 Mar;145(3):239-249.. This
has been observed by advocacy groups, as the majority of phone calls to
the HNCA have been regarding financial ability to afford treatment
itself and transportation to medical facilities. Baddour et al
hypothesized that over 60\% of HNC survivors may be impacted by
COVID-19's strain on the economy, especially as it has forced many into
temporary unemployment77Baddour K, Kudrick LD, Neopaney A, et al.
Potential impact of the COVID-19 pandemic on financial toxicity in
cancer survivors. \emph{Head Neck.} 2020 Apr; doi: 10.1002/hed.26187.
{[}Epub ahead of print{]}. Similarly, the aforementioned ACSCAN survey
also revealed that 38\% of respondents felt significant financial strain
during this COVID-19 era, with 50\% of patients with annual income
\textless{}\$30,000 expressing concern regarding how to afford
treatment\textsuperscript{vii}. Moreover, although Medicare covers most
items for laryngectomees, they do not always provide reasonable
reimbursement to hospitals and clinics for materials such as in-dwelling
speech prostheses. Those impacted patients therefore have to pay out of
pocket for covered items that some facilities refuse to provide. It is
clear that economic hardships not only affect access to treatment, but
also can significantly impact mental health and decrease overall quality
of life.

The Head and Neck Cancer Living Foundation (HNCLF) provides financial
assistance to low-income HNC patients for treatment and recovery
expenses. Since COVID-19, this patient population has experienced even
greater barriers to care as social services and discount providers are
less available than ever before. For example, HNC patients often require
immediate oral healthcare before and after treatment. Low-income
patients often depend on local dental partners that offer discounts or
even local dental schools for assistance. Many of these clinics, dental
schools and local dental providers have closed or significantly reduced
their services in response to COVID-19, leaving these patients with
fewer options for care and greater need for support.

Lastly, the primary advocate of HNC patients, besides themselves, may be
their family members or friends, serving as caregivers. Unfortunately,
social distancing precautions have limited outside visitors to treatment
facilities at which patients may receive care. Many HNC patients
undergoing treatment or requiring work-up will have to do so by
themselves. Often, these individuals also require transportation support
to and from appointments. Social distancing guidelines have impacted the
availability of volunteers willing to provide transportation support,
therefore affecting the ability of the patient to access the care they
need. Patients are now challenged with finding safe transportation and
navigating their care alone. This isolating effect may make coping with
cancer during the COVID-19 era all the more difficult.~ The exact impact
this has may differ on an individual level and can also depend on what
phase of their cancer journey patients are in, and future investigation
is needed to best characterize concerns and develop patient-centered
strategies to alleviate them.

\textbf{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-19\textsuperscript{xii}. Both the HNCA and the THANC Foundation
have given specific precautions for patients with tracheostomies or
laryngectomee patients to reduce the risk of
infection\textsuperscript{xii,}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.

\textbf{Increased Utilization / Interaction with Advocacy Groups~}

As previously mentioned, COVID-19 has led to the cancellation of
in-office visits, with a shift towards telemedicine encounters. Many
ancillary and rehabilitation therapy visits, such as
speech-language-pathology (SLP) appointments, are also being delayed.
Additionally, shelter-in-place orders and social distancing precautions
have prevented many HNC patients from attending regularly scheduled
support groups. The increased detachment related to social isolation and
lack of contact from regular support groups has led many patients to
turn to HNC advocacy groups as a primary source of information regarding
their concerns on how their care will be impacted.

This shift in information gathering has been demonstrated by increases
in visits to websites of advocacy groups and the number of views of
relevant web pages. The THANC Foundation, for example, offers a
comprehensive head and neck cancer guide that touches upon all aspects
of care, from diagnosis to treatment to survivorship
(www.THANCguide.org). From March 28 to April 26, 2020, they noticed
increases in users (71,686 vs 66,472), new users (69,806 vs 64,667),
sessions (79,069 vs 74,188), and page views (101,447 vs 96,818) compared
with the month prior. One of their COVID-19-specific information pages
likewise has had 1,507 unique visits in the last month alone.~As
patients are not able to see their doctors regularly, they may be
turning to online guides for sources of information.

Additionally, there has been an increased number of phone calls, emails,
and messages on social media platforms contacting these organizations. A
SPOHNC representative has noticed that phone calls are more frequent and
lengthy, increasing from an average of 15-20 minutes to 30-35 minutes
(exact data not available). Many patients are also phoning in outside of
regular business hours to voice their general anxieties and concerns.
Similarly, the UK Macmillan Cancer Support group has noticed an uptick
in volume, with over 30\% of incoming calls involving COVID-19-related
concerns11Mayor S. COVID-19: impact on cancer workforce and delivery of
care {[}published online ahead of print, 2020 Apr 20{]}.\emph{Lancet
Oncol} . 2020;S1470-2045(20)30240-0. doi:10.1016/S1470-2045(20)30240-0.

Advocacy groups also moderate many web-based survivor forums on which
HNC survivors can relay their general experiences, questions or comments
as well as engage with other HNC survivors. Examples include the Inspire
platform forum led by the HNCA as well as a Facebook group led by
SPOHNC. Both forums have seen large increases in activity. In fact, the
HNCA Inspire forum has had a jump in new membership from 30 new users a
month, to roughly 55-60 new monthly users over this past March and April
of 2020.~Moreover, COVID-related posts on the HNCA Facebook site were
viewed by twice as many people (average of 1,200 per post compared to
the pre-COVID average of 600 per post), with the average COVID-related
post engagement (comments, likes or shares) being 14.5\% versus 4\% for
non-COVID-related posts on this account. The need for support during
treatment has also increased, with higher utilization of gas cards seen
by the HNCA along with a rise of requests for transportation and lodging
support through the HNCLF.

This increased utilization of advocacy organizations highlights their
important role in the lives of people affected by HNC. As the pandemic
evolves, these groups will undoubtedly continue to refine their
resources in an effort to best meet the needs of those they serve.

\textbf{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.

\textbf{Conclusions}

The COVID-19 pandemic is having a profound impact on HNC patients,
creating tremendous anxiety and uncertainty for many individuals
undergoing treatment or surveillance for their disease. With the current
changes occurring in healthcare, the role of HNC advocacy organizations
is becoming increasingly significant, as these groups are being turned
to for information and support. Despite numerous challenges with program
funding and implementation, these groups continue to find ways to offer
services to their communities. Further work is necessary for these
organizations to learn about the evolving needs of those they serve in
order to best refine programs to support them in the future.

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