Destigmatizing the Most Stigmatized Diseases

One cancer that experiences high levels of stigma is head and neck cancer. That’s why this Head and Neck Cancer Awareness Month, I’d like to acknowledge the stigma they may face, and ways the biopharma industry can work to alleviate it. 
 

Each year, about 68,000 people in the U.S. are diagnosed with squamous cell carcinoma of head and neck (SCCHN), often referred to more simply as head and neck cancer. These cancers of the larynx, throat, lips, mouth, nose, and salivary glands account for nearly 4% of all cancers in the United States.¹

Head and neck cancer is often linked to perceived lifestyle “vices” like smoking and drinking. Additionally, treatment for head and neck cancer may include surgery that leads to removal of the eye, part of the jaw, nose, ear or skin – a visible disfiguration that can be jarring. Due to these factors, it is regarded as one of the most stigmatized cancer types.² New patients seeing the results of this disfiguring surgery on other patients may be less likely to seek help, which can lead to delayed medical treatment and worse outcomes (i.e., surgery and the negative impacts of surgery). And if patients undergo surgery, there may be negative psychological impacts – ranging from depression to self-stigmatization - stemming from the visible disfiguration and body changes.²

The impacts of stigma extend beyond patients into public policy, research, and advocacy. Raising awareness for stigmatized illnesses can be difficult, as community leaders may be reluctant to advocate for these patient populations. This leads to notoriously low levels of research expenditures, as well as advocacy organizations struggling to build a strong constituent base. However, I believe there are ways to alleviate this discrimination: 

1. Invest in research to advance the science and treatment options. Investing in research in stigmatized spaces has the potential to create a positive ripple effect with the broader public. That’s why EMD Serono continues to explore potential new therapeutic approaches in stigmatized diseases, with hopes of changing the standard of care to improve outcomes and experiences for these patients and their loved ones. 
2. Engage with the community to build trust and awareness around the importance of diagnosis and securing care. Advocacy is critical to educating and supporting and can lead to earlier diagnosis and care. But biopharma companies engaging directly with patients who have stigmatized diseases helps build that trust, too. For example, a patient-directed approach to include both patient and caregiver perspectives in clinical trials can help benefit patients, their communities and public health. 
3. Educate physicians on the important role they play in eliminating stigma. Healthcare professionals can help by creating a comfortable environment when treating patients with stigmatized diseases, opening the door to transparent, genuine communication about challenging topics. For example, HCPs can normalize certain health questions (e.g., about smoking and drinking) as “standard of care,” directly advising that as part of the conversation, they are not meant to stigmatize but rather paint a full picture of health. 

The complete elimination of disease stigma requires collaborative efforts across society. But with concerted effort and dedicated research in stigmatized spaces like head & neck cancer, we can gradually make steps to improve the treatment landscape for all. 

REFERENCES

¹ Cancer.net. Head and Neck Cancer: Statistics. https://www.cancer.net/cancer-types/head-and-neck-cancer/statistics#:~:text=How%20many%20people%20are%20diagnosed,with%20head%20and%20neck%20cancer. Accessed March 18, 2024.  

² Tseng, W et al. (2021.) Stigma, depression, and anxiety among patients with head and neck cancer. Supportive Care in Cancer. 30. 1529–1537. https://link.springer.com/article/10.1007/s00520-021-06550-w