Head and Neck Cancer: Patient Advocacy and Support

Head and neck cancers, a clinically complex cluster of potential malignancies, account for approximately 4% of all diagnosed cancers in the United States. Although advances in treatment have increased survival rates for patients with cancers of the mouth, throat, voice box, nose, sinuses, and salivary glands, these sometimes-overlooked forms of the disease impose specific and significant physical, emotional, and psychosocial burdens. For example, patients with head and neck cancer can experience alterations in facial and neck appearance as well as dental problems and challenges with eating and speaking. Amid this disease landscape, advocacy organizations including Support for People with Oral and Head and Neck Cancer (SPOHNC) and Massachusetts Oncology Patients, Survivors, and Supporters (MOPSS), are committed to supporting patients as they navigate the care continuum.

With more than 100 chapters throughout the country, SPOHNC is dedicated to raising awareness and meeting the needs of patients with oral and head and neck cancer through its resources and publications. Through its website and newsletters, SPOHNC delivers head and neck cancer research and policy updates, spotlights survivor stories, and shares recipes and occasional snippets of poetry. In recognition of April as Head and Neck Cancer Awareness Month, SPOHNC recognized the survivorship journey of 2 members through its #lifeAhead campaign. Katie Drablos was one of them.

Navigating Survivorship

Drablos, a dancer, teacher, and choreographer, is a survivor of tongue cancer. Her treatment included surgery to remove her tumor, tongue reconstruction with tissue from her arm and artery, removal of her lymph nodes, a tracheostomy, a leg graft to fill in the missing tissue from her arm, 30 rounds of radiation, and chemotherapy. She took 6 months leave from work following treatment as she focused on healing her mind and body.

“Finding people, fellow survivors, like at SPOHNC, having people to lean on, to make art with, to commiserate with, to cry with, to hold your hand, is a huge part of the healing,” Drablos says. She credits the organization’s newsletters and support with making her feel less afraid to ask questions, and facilitators like Frank Marcovitz make that possible.

Marcovitz is a facilitator for SPOHNC’s Syosset, New York, chapter, and a survivor of laryngeal cancer. He describes his malignant biopsy result as a “gut punch.” “I was working as a property manager at the time, and when I told my staff, I broke down,” he says. The solidarity he found in the patient perspectives shared at his SPOHNC chapter, was a beacon of support as he underwent radiation therapy and ultimately a laryngectomy. Now he pays it forward.

“We support each other. We tell people you will get through it; there’s light at the end of the tunnel,” Marcovitz says as he tells his story, before outlining travel plans with his wife, which include a bucket-list trip to Alaska and a second honeymoon in Hawaii. “Know things do get better, it’s a new beginning; it’s a new normal. But that new normal can be a very full life.”

Advocating for #lifeAhead

The frequent exclusion of dental care from traditional health insurance coverage undermines the quality of life for patients with head and neck cancer and without care, can exacerbate treatment-related dental issues. Understanding this, MOPSS aims to bridge the gap between medical and oral care through raising awareness, education, giving, and support initiatives. Further, the organization advocated for and helped raise support behind Massachusetts Bill H.1094. The bill mandates insurers to provide coverage for dental procedures relating to or resulting from a medical condition for which coverage is already provided, and it recently moved to the Joint Committee on Health Care Financing as it progresses through the state legislative process. Enactment of the legislation could amplify MOPSS’ impact exponentially and if Massachusetts serves as a bellwether, inspire other state lawmakers to develop similar policies.  

By providing a forum for patients, survivors, caregivers, and health care professionals to connect and share their experiences, organizations like SPOHNC and MOPSS offer vital support throughout the cancer journey. Their advocacy shines a light on practical issues such as advances in research and the criticality of access to dental care, policy changes, and the marshaling of resources to address those challenges. But through the community and solidarity they foster, they also reveal the light at the end of the tunnel—the new normal—for patients on the path of head and neck cancer.

ACCCBuzz encourages you to explore SPOHNC and MOPSS to deepen your understanding of their work, explore additional resources for the patients you serve, and hear firsthand the stories of patients and survivors like Katie and Frank.   

To find more tools and resources related to head and neck cancer, visit the head and neck cancer page.

ACCC’s Multidisciplinary Approaches to Head & Neck Cancer education program is made possible with support by EMD Serono. 

More from ACCC

• Preventing Head and Neck Cancers: The Importance of Oral Health Screenings
• Head and Neck Cancer: Understanding Gaps in Insurance Coverage
• Tackling the Dental Coverage Gap: Empowering Patients with Head and Neck Cancer