Positive Life NSW surveyed a total of 1,660 people living with HIV and gay, bisexual men (GBM) via an anonymous online questionnaire, to assess awareness of, screening for, and prevention of anal human papillomavirus (HPV) infection and anal cancer in NSW, Australia. Survey results were intended to inform development of education resources to raise awareness of anal cancer in at-risk NSW populations, clinicians and service providers. The survey was conducted in the context of rising numbers of people living with HIV being diagnosed with anal cancer.

Findings:

The survey highlighted that compared to the general population, HIV positive GBM, HIV positive non-GBM and HIV negative GBM, are at substantially increased risk of anal cancer. HIV positive GBM have a 50 fold risk when compared to the general population. 63% of anal cancers are diagnosed late and require treatment with chemo/radiotherapy, and in some cases radical surgery. Recovery from chemo/radiotherapy and surgery is often protracted and extremely challenging for the individual treated for anal cancer. Despite the increased risk of HPV-related anal cancer, HIV positive and HIV negative GBM demonstrated poor levels of awareness. Two thirds of HIV negative/unknown GBM and half of HIV positive GBM underestimated their risk. Rates of screening for anal cancer were also poor. Only a third of HIV positive men and about one tenth of HIV negative/unknown men had received an anal cancer examination (DARE). Of particular concern was the low proportion of older GBM who had received a DARE (~19% of men aged 45–54 years and ~32% of men aged 55 years and older). Rates of HPV vaccination were also poor. Less than 9% of men aged 18–24 had received HPV vaccination. The role of doctors is crucial in educating PLHIV and GBM about anal caner and the need for regular screening. However, our survey demonstrated poor levels of doctor-patient communication about anal cancer, with the majority of men never having discussed anal cancer with their doctor.

Recommendations:

• State and territory PLHIV organisations, AIDS Councils and their peaks (NAPWHA and AFAO), prioritise the resourcing, development and distribution of education resources that increase awareness of, and screening for anal cancer in Australian PLHIV and HIV negative GBM.
• State and territory PLHIV organisations, AIDS Councils and their peaks (NAPWHA and AFAO) work with ASHM to educate doctors about the need for anal cancer screening in PLHIV and GBM, particularly in GBM living with HIV over the age of 50 years.
• Positive Life, with support from NAPWHA and Femfatales, develops and implements a community-based electronic national survey targeting HIV positive women: 1) to raise awareness of HPV related cancer, including anal cancer, and 2) to assess awareness of risk and knowledge of symptoms suggestive of HPV related cancer, experience with screening and HPV vaccination.
• A working group is convened to: 1) advocate to state and territory health departments for the free provision of HPV vaccination to GBM aged ≤ 26 years at sexual health clinics around Australia, 2) develop education resources to promote self and partner administered DARE in PLHIV and GBM, 3) progress pathology and cytology item numbers for anal cancer diagnostic tests, 4) increase doctor and patient awareness of HPV related anal cancer in PLHIV and GBM via conference presentations, publications and training, and by peer led education sessions at NAPWHA members meetings and the Treatment Outreach Network.