When Greg, a 50-year-old doctor in New York City, first began experiencing the symptoms of anal cancer caused by the Human Papillomavirus (HPV), he was misdiagnosed with stomach flu by his doctor and was treated with antibiotics. Like many gay men, Greg wasn't aware of the link between his cancer and America's most common sexually transmitted infection. "I had heard that it had been an issue but I didn't know how much it should be checked—or anything about the treatment," he tells me over the phone.
After Greg, who is HIV positive, was first misdiagnosed, his doctor, who specializes in HIV-positive patients, then sent him for a colonoscopy instead of a rectal exam. "Colonoscopies aren't an effective way of testing for precancerous anal cells," Greg says, adding that he's "one hundred percent sure" the cancer was visible at the time of his colonoscopy. But it wasn't until his doctor finally recommended a rectal exam a few months later that the cancer was caught. "Being a physician, I was able to move things very fast. But if I had been a common patient, the treatment could very likely have been too late."
HPV can cause cervical cancer, anal cancer, oral cancers, and rarer cancers in the genital region. The Centers for Disease Control and Prevention (CDC) note that men most at risk of contracting HPV-related cancers are HIV-positive men, and men who receive anal sex. Researchers estimate that HIV negative men who have sex with men (MSM) are 20 times more likely to be diagnosed with anal cancer than the general population, with a rate of about 40 cases per 100,000 people. HIV-positive MSM are up to 40 times more likely to be diagnosed with the disease. However, Perry Halkitis, the director of the Center for Health, Identity, and Behavior & Prevention Studies at New York University, says there is a serious lack of awareness when it comes to the link between gay men's health and HPV. "It's a missed opportunity for the public health community," he says.
There is a serious lack of awareness when it comes to the link between gay men's health and HPV.
In the past decade, aggressive health campaigns have emphasized the importance of women getting vaccinated against HPV; a study released in February found that since the vaccine was introduced in 2010, there has been a 64 percent decrease among women aged 14 to 19 in the strains of HPV that the vaccine covers. "The women's cancer community has all these races, pink ribbon events, and TV speeches, and everyone knows to get breast exams and the cervical cancer pap test," says Greg. "But there's no motivation or movement in the gay or HIV-positive community to bring awareness to anal cancer from HPV—it's virtually ignored." As a result, gay men are not getting vaccinated for HPV nearly as often, which is contributing to higher rates of anal cancer.
Despite the fact that teenage boys are just as able to receive the HPV vaccine as teenage girls are, in 2014, only 22 percent of boys aged 13 to 17 had received the recommended three doses (compared to 40 percent of girls).
"It's a tragedy when we have a vaccine that can prevent cancer and people aren't getting it," says Dr. Stephen Goldstone, a surgeon in New York City who specializes in HPV and anal disorders. "We are vaccinating [people] as teenagers (and up to 27 years old) to catch them before infection—to prevent cancer when they are in their 40s and beyond."
One reason for this gap in coverage is due to fear mongering from social conservatives like Michelle Bachman, who in 2011, while campaigning to become President of the United States, suggested a link between the HPV vaccination and the development of mental illness. "There's a woman who came up crying to me tonight after the debate. She said her daughter was given that vaccine," Bachmann told Fox News. "She told me her daughter suffered mental retardation as a result. There are very dangerous consequences."
"It's a tragedy when we have a vaccine that can prevent cancer and people aren't getting it."
Despite a lack of scientific evidence to back up her claim, Bachman's words can do damage. "A parent may go to a doctor's office and say, 'Bachman said this,' so they don't want their child to get the vaccine," says Dr. Goldstone. "It causes irreparable harm, and some of these people who believe this are doctors. Just 'cause you're a doctor doesn't mean you're not an idiot."
James Hart, a 60-year-old concierge on the Upper West Side, contracted anal cancer from HPV in 2008. "I was upstate visiting some friends, and I got a call from my doctor saying that the test came back with abnormal cells that could possibly be cancer. And I was standing in a line, going 'cancer?'" Hart recalls.
Hart, who is HIV-negative, says he showed no signs of cancer, and frequently went for STI check-ups. It was only when his doctor, who he found through the Gay and Lesbian Yellow Pages, identified pre-cancerous cells during a colonoscopy. "Because he was a gay doctor, he was aware of the issue. If he hadn't turned the scope around, I probably wouldn't have known I had cancer until much later on."
At the time of his diagnosis, Hart was "completely in the dark" about the relationship between HPV and anal cancer. "Nobody ever mentioned it to me; I'd never heard of it," he says.
This lack of awareness may be due, in part, to a lack of research surrounding gay men and HPV. In 2011, the Federal Drug Agency was presented with enough research to approve a cervical pap test and an HPV test for women, giving doctors the green light to check women's cervixes for pre-cancerous cells or cancer-causing strains of HPV—a main reason for the significant drop in cervical cancer and the number of cervical-cancer related deaths. But there is no approved screening test for HPV-related diseases in the male population because of the lack of available data to present to the FDA. Now, there is debate in the medical community about proper screening methods.
"Anal pap smears are controversial because there are a lot of false positives," says Dr. John Rescigno, a radiation oncologist at Mount Sinai Beth Israel Cancer Center. "They may lead to an over-diagnosis and over-treatment problem."
Dr. Goldstone says anal pap smears are less effective as a screening tool than cervical pap smears because of all the folds in the anal canal. A lesion hidden in a fold may not be captured on the swabs. "Ten to twenty percent of patients with benign [anal] pap smears will actually have a precancerous area," says Dr. Goldstone. In spite of this, he adds, a lesion that was missed during the first screening could be detected at your next. "While this might be scary, we must remember that it takes years for a precancerous area to become cancer."
"Clearly, we need better screening tools," says Dr. Goldstone. But for now, he says anal pap smears are the best option.
The effectiveness of HPV testing was first tested on women; men were excluded even though there was common understanding of the negative effects HPV has on gay men's health. Unfortunately, the exclusion of gay men and other minorities from health research is not uncommon, according to Farzana Kapadia, a professor at New York University who specializes in sexual health. "It's one of the biggest problems in research," she says. A 2013 study found that African-American women were less likely to benefit from available HPV vaccines that prevent cervical cancer for similar reasons: they tend to be underrepresented in the clinical trials.
A 2011 report by the Institute of Medicine found that researchers need more data about the health of LGBT individuals, improved methods for collecting and analyzing data, and an increased participation of sexual minorities in research.
Perry Halkitis is trying to change this. He and his team are conducting the first large-scale longitudinal study that follows a new generation of young MSM and documents their patterns of risk for HIV, herpes, HPV, syphilis, gonorrhea and chlamydia. The HPV component began last fall and, to date, 151 MSM have been tested. "We're trying to provide data that proves that if you have exposure in the butt or mouth, the possibility of developing irregular cells which may later turn into cancer is high," says Halkitis. "Our aim is to show that gay men face many health problems in 2016—not just HIV. The knowledge we have from the 1980s is not necessarily appropriate for a new generation."
Other than getting vaccinated, the most effective way to combat the anal cancer epidemic is for doctors to conduct annual rectal exams on gay men to detect pre-cancerous cells. "Anal cancer is a treatable cancer if it's caught in its early stages. Every MSM should be getting a rectal exam every year," says Dr. Goldstone, the anal cancer specialist. "It's one of the oldest diagnostic tools we have. You can feel these cancers when they're there, but so few doctors are conducting these exams because they're not yet recommended or because the doctors are uncomfortable doing them."
Moreover, patients often lie about their sexual history and sexual orientation because of the rampant homophobia that still exists in America. "If a young man experiences internalized homophobia, he's not going to tell his doctor that he's receiving anal sex," says Dr. Goldstone."[Doctor's] don't know who's at risk if [they] assume every guy in [their] office is straight."
Tony Feher, a 60-year-old sculptor who has been living in New York City's East Village for 34 years, found out he had developed anal cancer from HPV last summer. Currently undergoing chemotherapy, he believes the focus need to be on young people. "There's an unfortunate nostalgia in the older gay community that looks back on the high point of activism in the 1980s," he says.
"I'm old enough now that what's gonna come down the pipe for me will come. But we can't forget about the young people."
All of the experts interviewed for this story agreed that all young men under 27, regardless of sexual orientation, should be vaccinated for HPV. Even if someone has already contracted one strain of HPV, it's still important to get vaccinated because it can protect against other cancer causing strains. "If you're under 27," says Dr. Goldstone, "you should march yourself to the doctor and get vaccinated right now."