There was no privacy when I was told I might die.
In November, I complained about a sore throat during my annual physical with my primary care physician. She saw nothing of concern. By early February, that sore throat had become unbearable, a sharp pain radiating up my neck and into my right temple. An urgent care doctor gave me a steroid shot and sent me on my way. A dentist extracted a tooth he thought might be the cause.
Still, the pain persisted. Sharp. Constant. Dreadful. Finally, at the urging of my closest friends, I went to the emergency room – not because I thought I was in immediate danger, but because I had exhausted all other options.
It was there, sat in a crowded hallway blinded by both fluorescent lights and excruciating pain, a nurse practitioner told me bluntly: “I believe this is cancer.” A biopsy proved him correct; I was diagnosed with stage two HPV+ oropharyngeal cancer. I am only 39.
As I was suffering through chemotherapy and radiation, a startling study published by the American Medical Association was released. Far from being a random case of HPV-associated cancer, I am part of a concerning trend in Appalachia. HPV-associated cancer incidence “increased significantly faster in Appalachia vs. non-Appalachia between 2004 and 2021,” the study found, “…highlight[ing] the need for targeted efforts to improve HPV vaccine uptake and encourage adherence to evidence-based screening guidelines for HPV-associated cancers in Appalachia.”
To put this bluntly: The type of cancer I had is more prevalent in Appalachia than the rest of the country, but far too few folks – patients, yes, but more crucially medical providers – seem aware. Three medical professionals failed to see the cancer that a nurse practitioner noticed when first examining me.
Had I not gone to the emergency room that fateful night in February, it is very likely my cancer would have spread, and my chances of survival would have been substantially lessened. Even now, with no evidence of disease and six months post-treatment, I shudder to think of how differently this could have gone.
Reading this study while cisplatin was pumped through my veins was, in turns, validating and infuriating. On the one hand, I was not alone: Lots of people, right here in my home region, were developing the same cancer without realizing we were at higher risk. On the other hand, I felt failed by the medical establishment, including doctors and dentists I’d entrusted with my health.
Appalachia being failed by the medical establishment is nothing new, but the “why” behind our HPV cancer rates is not difficult to explain.
The HPV vaccine was first recommended for girls and women in 2006 and for boys and men in 2011. I was then 25 and never once offered the HPV vaccine, despite being honest with my doctors about being a sexually active gay man, which put me, unknowingly, at a higher risk for HPV related cancers. Routine STI screening never detected my HPV because it is not something STI testing typically screens for, so I was carrying the virus that would try to kill me without ever knowing it.
Skylar Baker-Jordan was diagnosed with stage two HPV+ oropharyngeal cancer when he was only 39.
I am hardly alone.
“Due to a common misconception that the virus only poses risks to women,” a 2021 study in the peer-reviewed journal Viruses found, “vaccine coverage is suboptimal among men in many countries.” Only four percent of boys globally have received a full course of the vaccine (compared to 15 percent of girls), with rates in the United States varying between 4.9 percent and 31.7 percent, far lower than that of American girls also aged between 9 and 21. This, despite the fact that about 10% of men have oral HPV, which is believed to cause between 60 and 70 percent of the oropharyngeal cancers in the United States.
This problem is compounded here in Appalachia, where vaccine uptake is generally lower than the rest of the nation. A 2023 study found a pattern across coalfields on both sides of the Atlantic, with both Appalachian and Welsh coalfields much less likely to receive the Covid vaccine. “Experiences of extractive capitalism and deindustrialisation may have led, understandably, to lower trust in authorities,” the authors report, citing that lack of trust as one of many factors resulting in lower vaccination rates.
HPV and cancer are not, or at least shouldn’t be, political footballs. Yet it bears mentioning that our current Health and Human Services Secretary, Robert F. Kennedy, Jr., risks exacerbating the problem.
A notable vaccine skeptic, Kennedy and his colleagues in the Trump Administration are fanning the flames of vaccine hesitancy by openly questioning longstanding vaccine schedules. He has also questioned the efficacy of certain vaccines, including the hepatitis B vaccine for newborns which, since it was first recommended in 1991, “is credited with having reduced acute hepatitis B infections in US children by 99% from 1990 to 2019, preventing more than 500,000 childhood infections,” according to the BMJ, a peer-reviewed journal produced by the British Medical Association.
The danger of Kennedy’s unscientific claims cannot be understated.
The Lancet reports that his “influence could parallel the troubling trends observed in Florida under Surgeon General Joseph Lapado,” who has openly and repeatedly questioned vaccine efficacy and whose tenure has seen a precipitous fall in childhood vaccine rates. Furthermore, Kennedy himself has been blamed for a 2019 measles outbreak in Samoa in which 5700 people were infected, and 83 people died in an island nation of only 200,000 people.
Kennedy and his ilk have not yet taken aim at the HPV vaccine, but there is no reason to think they mightn’t. This would be a disaster for Appalachians. Our region is already skeptical of the medical establishment – and given the way we’ve been exploited by the opioid industry, failed by medical monopolies, and sickened by extractive industries, who can blame us?
But the lack of access to information, education, and treatment that many folks in other parts of the country take for granted, is a point that goes back to my opening sentence: Finding out such devastating news in a hospital hallway instead of a private examining room is not unusual in my neck of the woods. Demand for healthcare outstrips supply.
I had no idea I was at a higher risk of HPV+ cancer – not as a gay man, and not as an Appalachian. Had I known, had I been vaccinated at an early age, I may have spared myself nearly a year of living hell. I finished chemo and radiation in June, but I was on a feeding tube – unable to swallow because of the radiation damage to my throat – until early November. I still can’t taste most things, and foods I loved before (like pizza) are often too spicy for me to handle. My energy is still depleted, with typical daily activities exhausting me even now.
We need a massive public health education campaign for both the public and medical providers, emphasizing training to recognize HPV-related cancers and the higher prevalence of this cancer across the mountains. We must ensure boys are being vaccinated at the same rate as girls. We must rebuild trust in the medical establishment from the bottom up.
The misinformation coming out of the Trump Administration must be countered through evidence-based messaging and trusted community leaders: local government officials, respected educators, even clergy and church health ministries have a role to play. HPV+ cancer is preventable with a simple vaccine. Appalachians deserve to know this truth.
Ignorance cost me more than I ever imagined. I lost income. I lost my apartment. And I damn near lost my life. What I did not lose, however, is my dogged determination. The costs of HPV+ cancer to our region must be publicized. All my radiation burns and weeks of chemo-induced vomiting and hospitalizations will have been worth it if just one young Appalachian man reads this and thinks, “screw RFK, Jr., I’m getting vaccinated.”
The post Commentary: HPV Cancer Rates Are Higher in Appalachia. Wish I Had Known. appeared first on The Daily Yonder.
