Raising HPV and anal dysplasia awareness: how we used a ‘first booty’ narrative to touch hearts and minds

HIV Australia | Vol. 10 No. 1 | June 2012

Mark Hubbard outlines how first-person narratives can deliver health promotion messages to gay men in an culturally appropriate way.

Our story begins in the 1980s. Andrew, 25, has just relocated to a big city to seek his fortune:

‘Last week I described how Andy discovered sex with me and how he went about discovering his gay self. I’m Andrew’s anus, and I have HPV. Eventually, Andy and I discovered that we were shacking up with other viruses as well. 

I believe we could all help anuses stay healthier if we’d bring the subject out of dark nether regions and into the light of day. Most gay guys are fairly informed about HIV, but far too many know far too little about HPV (the human papillomavirus). Experts tell us that most people have been exposed to HPV, which can sometimes cause genital warts or lead to anorectal cancers.’ 

This excerpt is from Andrew’s Anus, a first person, or rather ‘first booty’ narrative series I wrote for the LifeLube.org blog to raise awareness about HPV, anal dysplasia, and rectal health.

Despite being personally affected, it took a while for HPV to become an advocacy priority for me. That’s partly because scientific understanding has remained incomplete and consensus elusive.

I believe that all advocacy must be grounded in human understanding. Any serious effort must be informed by the real world experiences of individuals – what happens to us, how we cope, and what we learn.

Lifelube.org had been established to deliver entertaining and engaging wellness information for gay and bi men. Jim Picket, the director of prevention advocacy and gay men’s health at the AIDS Foundation of Chicago, was editing the blog in 2007 when he read my posts on a gay men’s health e-list and encouraged me to contribute.

I am by no means a professional writer, particularly in terms of discipline. Mostly I write when I feel passionate about issues or experiences. Over time I came to realise that the sharing of personal stories was what made the blog effective and popular.

‘It was summertime and the Pet Shop Boys’ second big hit Opportunity was Andy’s theme song. It was playing at the club when he went out the night before leaving town. Andy was really pumped about his new job working for two up-and-coming gay entrepreneurs. He shook his moneymaker (and me) on the dance floor like there was no tomorrow. 

Andy was ecstatic in his new life – for a while. He loved his job, the city was really happening, and he met a hot new beau within a few days of arriving. The guy was a fish packer (seriously!) and built like a brick shithouse. Andy worshipped Patrick’s Soloflex body and Patrick really loved “poking” me, as he called it. Andy loved that too, but he had to say no as often as he said yes just to keep from wearing me out.’ 

I grew more and more worried about my own HPV history. There was increasing concern about the emergence of pre-cancerous lesions in HIV-positive individuals. What most activists considered the best care – screening by high resolution anoscopy – could not be found in my region. I brought in an expert to speak to consumers and staff at the local HIV clinic, but change was not forthcoming.

I knew I was going to write something about these challenges, but just couldn’t decide what or how. One night, as I was sitting with my ageing Dad at the dinner table in the suburban ranch house where I grew up, inspiration hit me.

My parents’ house is full of Readers’ Digest magazines, some decades old. I remembered that its editors commissioned articles designed to help people understand their bodies with titles like ‘I’m Joe’s Liver’ and ‘I’m Jane’s Uterus.’ That the story would be based on my own experiences had been a given. Writing as ‘Andrew’s Anus’ would give me the courage to open up, ignore taboos, reject stigma, and celebrate the anus and rectum as valid centres of sexual pleasure.

‘I’m tired of worrying about a couple of pre-cancerous spots in me, and Andy’s downright pissed about the obstacles he’s faced trying to get the right kind of care for me. He says part of the problem is that people aren’t comfortable talking about things like anuses, rectums, and butt sex. I’m damned determined to change that, so I’m telling my story. 

Andy and I have been fuck buddies forever. We discovered we liked having sex about the time he learned to drive. I’ve been with Andy through decades of ups and downs, good times and bad times, lovers and tricks.’ 

The more I personally encountered barriers to competent anorectal care, the more motivated to write I became. Community awareness and understanding was severely lacking. HPV disease was reported to be progressing more rapidly in HIVpositive individuals. Maddeningly, there were still no national guidelines for screening and treatment.

As I began to write, it became clear that Andrew’s story was not just about HPV, but about HIV and hepatitis B too. Although he’d sometimes experienced good care, Andrew faced discrimination, medical malpractice, and barriers to access. Medical vignettes were intertwined with relationship, substance use, and coming of age storylines, and the series seemed to become a microcosm of everything LifeLube had been about since its inception.

‘At his next visit, Dr. Johnson checked Andy (and me) out more thoroughly. He noticed some swollen glands on the back of Andy’s neck and a cluster of warts on me. Both were indications that something might be up with Andy’s immune system. He hadn’t even known I could get warts, much less that they were caused by a virus that could stick around for decades.

The doctor told Andy the swollen glands were a sign of infection. “It could be a number of things, including the virus that causes AIDS,” he said. Because he had no treatment to offer and because discrimination was nearly certain, Dr. J. didn’t recommend getting a test. Instead he advised Andy to act as if he (and everyone else) was infectious – just in case. His colleague examined me carefully and recommended outpatient surgery to remove the warts.’

I soon realised I had too much material for one post and began thinking in terms of a few instalments. I became conscious of the need for technical accuracy. I approached three trusted colleagues. Ross Cranston MD FRCP is a respected researcher and provider in the field. Jeff Huyett MS APRN BC is a nurse practitioner who has been providing anorectal care for a couple of decades. Jeff Taylor is a research advocate on the drug development committee of the AIDS Treatment Activists Coalition and a community representative to the AIDS Malignancy Consortium. All are advocates for gay and bi men’s health and all three agreed to review installments for accuracy.

Both Jim and I had begun to use Facebook in our advocacy and organising work. Together we leveraged public and personal email lists as well as Facebook groups and messages to generate interest. In addition to record setting traffic, our efforts yielded articles and links on other websites and blogs, including Adam4Adam.

I participated via Skype in a live webcast on the topic as part of a regular regional wellness show for people living with HIV/ AIDS. Educators and recruiters from respected clinics wrote that they would use the series as a tool. Most gratifying personally were notes from guys who declared ‘that’s exactly my story!’ The seven instalments written to date remain among the most visited posts on the site.

After Andrew’s initial anal wart outbreak is resolved and he achieves relative stability in terms of his HIV and hepatitis B, the series leaps into the new millennium and begins to address current issues around anal dysplasia. We follow Andrew’s Anus just to the point of making an appointment for a first high resolution anoscopy.

The series is currently on hiatus; planned future installments will relate how Andrew’s Anus is screened and treated for high grade lesions. The series may also be used to increase awareness about the pressing need to fund a definitive randomised clinical trial that can be used as the basis for national standards.

Advocates and educators around the world know the value of using culturally relevant storytelling. Their efforts range from comic strips to theatrical performances and novellas. Some are the product of extensive development efforts that include expert review, workshops, focus groups and other forms of community guidance. Andrew’s Anus reminds us that authenticity is key, and that this strategy is a good fit for grassroots initiatives at any scale.

Mark Hubbard is the educational liaison for the [USA] Tennessee Association of People With AIDS and the convener of the HIV Empowerment & Action League.

He has been sponsored to attend the Conference on Retroviruses and Opportunistic Infections (CROI) for the last four years and was sponsored to attend the recent Microbicides 2012 Conference in Sydney, where he gave a presentation on ‘Andrew’s anus’. The entire Andrew’s Anus series can be read at http://lifelube.blogspot.com.au/search/label/andrew’s anus