April is Head and Neck Cancer Awareness Month

By Pamela Tom | HPVANDME Founder

At HPVANDME, we strive to do more than make people aware of HPV head and neck cancers. We must generate a giant wake up call for people to learn about HPV throat cancer now—because it’s been on the rise “at least four- to five-fold” over the past decade. The CDC reports an estimated 20-thousand cases of HPV-related throat cancer cases every year.

When famous people get cancer, the public listens. In this age of social media and fascination with fame, celebrity becomes perhaps the most effective way for more people to learn about HPV throat cancer and how to prevent it—quickly. HPV stands for the human papillomavirus. 

The Who’s Who List of (HPV) Oropharyngeal Cancer 

This year, PEOPLE magazine is celebrating its 50th anniversary. Over the decades, readers have gorged themselves on celebrity news and rosters of “the most beautiful” and “the most intriguing” people. Fans like these lists because they want to see if their favorite stars make the lists. Or maybe, it’s just human nature to be curious. 

When celebrities get sick, such news also sells magazines. On September 13, 2010, actor Michael Douglas made the PEOPLE cover. The headline, “The Fight of His Life – Health Crisis Battle”—with the subtitle, “The actor opens up about his throat cancer …” (Base of tongue cancer is often referred to as “throat cancer.”) The news marked the first time that many of us had heard of HPV and that it could cause throat cancer. However, any reference to HPV did not make the cover.

Like Douglas’s wife, Catherine Zeta-Jones, I was frustrated by multiple cancer misdiagnoses; in our case, the doctor kept saying my husband simply had post-nasal drip and sent him home—three times. We had to insist on a referral to see an ENT in order to get a proper diagnosis. 

But unlike Zeta-Jones, I did not feel any embarrassment when I later learned about the association between HPV throat cancer and oral sex. Most people who get HPV cancer were likely infected at least 15 years prior, according to Johns Hopkins Medicine.

While most people’s own immune system will clear a HPV infection within two years (sometimes with no symptoms); others with compromised immune systems may harbor the virus for years. Only years later, sometimes decades later, HPV can emerge as cancer.

The Power of a Public Platform

For my husband and I, the need for people to know about HPV cancer prevention and the early symptoms of HPV throat cancer eliminates any fear of criticism or judgment, both unwarranted. Cancer, any kind of cancer, is cancer. 

Most of us are not famous nor do we have publicists telling us not to talk about HPV. Ironically, the people who hold the platform to make more people aware of HPV’s relation to six cancers often don’t want to talk about it. Of course, we must respect individuals who want privacy about his or her personal health issues. (Think Kate Middleton’s recent request for privacy while she undergoes cancer treatment.)

At the same time, not using one’s platform becomes a lost opportunity because HPV infection can be prevented with the HPV vaccine. To me, that’s worth taking the spotlight. 

Furthermore, HPV throat cancer is perhaps the singular disease that many patients feel embarrassed about. In contrast, several famous women have spoken openly about their cervical cancer, also caused by HPV. They speak out to encourage other women to get screened. HPV anal cancer awareness efforts found a brave advocate in actress Marcia Cross who uses her platform to try to destigmatize HPV and anal cancer, co-founding the HPV Cancers Alliance. Cross’ husband is also a HPV throat cancer survivor. 

Just look what happened when actress Angelina Jolie wrote about her decision to have a double mastectomy to reduce the chance of developing breast cancer. In a 2013 New York Times opinion article, Jolie, said, “I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer. It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options.”

Awareness of HPV throat cancer will grow. We must continue to seek accurate, evidence-based information while promoting awareness.

Other Diseases: No Stigma

HPV cancer advocates watch other diseases make headlines, get segments on talk shows, and we yearn for the same attention and acceptance. Most importantly, we long for more widespread education about the HPV vaccine. It is safe and effective against six HPV cancers. 

Imagine if we had a Michael J. Fox who puts himself front and center to find a cure for Parkinson’s disease. The Michael J. Fox Foundation has raised billions of dollars for research. 

Similarly, Christopher Reeve, the iconic Superman actor, brought a major boost of attention to curing paralysis. In 1995, when Reeve suffered a spinal cord injury that left him paralyzed, he reached out to the American Paralysis Foundation (APA) which began as a grassroots effort. By lending his platform to the APA, Reeve infused the cause with the “superpower” ability to scale, raise money, and educate others. The organization is now known as the Christopher and Dana Reeve Foundation. 

In 2009, Farrah Fawcett died from anal cancer thought to be caused by HPV. Today, the Farrah Fawcett Foundation conducts fundraising for HPV cancer research. 

To better illustrate the dearth of famous HPV throat cancer patients using their platforms to build awareness, here’s what we found. When announcing their battle with throat cancer, these celebrities made the HPV connection public; however, the second set of celebrities, below, illustrate how many also remain silent about whether HPV likely caused their cancer.

Martina Navratilova (2023)—World Tennis Champion

Arthur Sadoun (2022)—CEO, Publicis

Rhod Gilbert (2022)—Comedian

Rob Paulsen (2016)—Voice Actor, Pinky and the Brain

Bruce Dickinson (2014)—Vocalist, Iron Maiden

Michael Douglas (2010)—Actor, Director, Producer

The HPV connection, if any, has not been publicly disclosed in these oropharyngeal cancer cases:

HPV Cancer Prevention: An 18-Year Campaign

Awareness about HPV cancer prevention began when the FDA approved HPV vaccine for girls in June 2006. In 2009, the CDC recommended vaccination for boys. In 2014, the vaccine, aka Gardasil, expanded from a four-valent to nine-valent vaccine, providing protection for more HPV strains. In 2018, the FDA approved use of the vaccine for people 27 to 45 years old. 

Undoubtedly, the vaccine’s history evolved over the past 18 years and helped protect a larger portion of the population. Yet vaccination rates remain low. Furthermore, vaccination declined during the COVID-19 pandemic. It appears unlikely that we will reach our goal to reach an 80 percent vaccination rate among 13 year-olds by 2026.

What does this mean? HPV cancers will persist. About 20,000 new cases of HPV-related throat cancer will be diagnosed each year. And in the US, HPV remains the #1 sexually transmitted infection, or STI. 

• HPV-related throat cancer is now the most prevalent HPV cancer in the US, surpassing incidents of cervical cancer. 
• The CDC says almost every sexually active adult will get HPV at some point in their lives. 
• Most people’s immune systems will clear the virus, those who retain the virus may develop cancer. 
• HPV throat cancer affects mostly men, in their 50’s and 60’s, and many won’t see it coming without more education.

Screening Challenges for Throat Cancer

There is no Pap smear equivalent for oropharyngeal cancer screening. However, an ENT specialist may use an endoscope to view the tonsil/base of the tongue/throat areas. 

“The only people who can know for sure (if they have HPV cancer) are females, who can have their cervixes tested. For males, there’s no way of knowing unless you develop an HPV-associated cancer or benign condition like a wart,” says Dr. Anuja Kriplani, head and neck oncologist, Memorial Sloan Kettering Cancer Center.

Educate Yourself and Others about Early Symptoms

We work to build awareness because:

• Early detection = better prognosis for survival
• Early detection = possibly less harsh treatment protocol

Like any cancer, understanding the symptoms of HPV-related oropharyngeal cancer can make all the difference. Early symptoms include a persistent sore throat, difficulty swallowing, pain in the throat or neck, constant coughing, hoarseness, lumps in the neck or mouth and changes to the voice. If your doctor does not suspect cancer but one or more of these symptoms persist, see a head and neck specialist who may examine you more closely.

Learn about HPV throat cancer.