A community perspective: On Human Papillomavirus (HPV)-related cancer among women and, trans and gender diverse people

Positive Life NSW & Femfatales, April 2019

Authors: Liz Sutherland, Lance Feeney, Katya Samodurov

Human papillomavirus (HPV) is a common virus which can be passed through skin to skin contact during sexual activity. Evidence to date shows that women living with HIV are 3 to 6 times more likely to develop cervical cancer than the general female population. They are also at greater risk of developing anal, vaginal, oropharyngeal and vulvar cancers.

There are other groups who may have a higher but preventable risk because they are often left out of the conversation about HPV and related cancers. Trans men are less likely to be up-todate with Pap tests to screen for cervical cancer. Furthermore, several studies have highlighted that trans and gender diverse people, and lesbian and bisexual cis-gendered women are often disregarded as not being at risk.

Positive Life and Femfatales developed a cross-sectional study to:

• Assess awareness and knowledge of HPV infection and risk for 4 HPV-related cancers (cervical, vaginal, vulvar, and anal) among women and, trans and gender diverse people in Australia;

• Assess the knowledge gaps to inform the development and implementation of population-specific educational resources to increase community and healthcare professional awareness of HPV and related cancers;

• Assist with the prevention of morbidity and mortality by increasing screening, early detection and treatment of HPV-related cancers, and;

• Assess rates of HPV vaccination in women and, trans and gender diverse people

KEY FINDINGS:

1. The results from this survey highlighted a lack of awareness of risk, prevention,
symptoms, and early detection of HPV-related vaginal, vulvar, and anal cancers.

2. Approximately 28% of HIV-positive respondents were unaware that a vaccination
against HPV exists and 71% of HIV-positive respondents had not been vaccinated
against HPV.

3. Over half (60%) of HIV-positive respondents believe their risk of anal cancer was either‘about the same’, ‘lower’, or ‘much lower’ than the general female population’s risk.

4. While all HIV-positive respondents had screened for cervical cancer at some point in
their lives, 91.7% had never had an anal examination for anal cancer.

5. Among HIV-positive and HIV-negative but immunocompromised respondents who had undergone staging or treatment for either cervical, vaginal, or vulvar cancer, none had ever screened for anal cancer.

6. Of the HIV-positive respondents who do not receive screening reminder notifications, none were aware of the new 3 yearly National Cervical Screening Guidelines and changes.

7. Qualitative responses indicated that respondents generally preferred having clinician-initiated conversations with female doctors or nurses who were non-judgemental, non-dismissive, clear, and made them feel comfortable.

8. In an open-ended short-answer question, more than 25% of qualitative respondents felt that more awareness and normalising talking about HPV in the public realm would help increase their chance of detecting HPV-related cancer early.

Needs analysis survey for People Living With HIV in SA

Positive Life SA & SAMESH, October 2018

We are undertaking a community needs assessment to guide the work of this organisation and the wider HIV sector in South Australia. We want to give people living with HIV in South Australia an opportunity to have a say in our future and help to shape HIV services.

This online survey is an important part of this process. It will also help to guide closer cooperation and collaboration between existing HIV services, identify any gaps in service provision, and create new strategies to address those gaps.

This survey asks your opinions about issues you think should be a priority for Positive Life SA and the HIV services sector. Your responses are strictly confidential. Workers involved in this survey are bound by strict policies regarding privacy and confidentiality.

Completing the survey should take less than 5-10 minutes. 

This survey will close on NOVEMBER 30th 2018.

Positive Voices community forum

Positive Life SA & SAMESH, August 2018

Are you a person living with HIV in SA? We want to hear from you about what would benefit PLHIV.

Find out more about the important role people living with HIV have in prevention,
as well as the barriers and enablers to care.

Presenters:
Kath Leane – PositiveLifeSA / Femfatales
John Rule – NAPWHA
Jane Costello – PLNSW / Kirby Institute
Craig Cooper – PLNSW

  • Tuesday September 11, 2018, from 6 – 9 PM, at 57 Hyde Street Adelaide
  • FREE entry, refreshments provided
  • RSVP (08) 7088 5300 or email samesh-enquiries@samesh.org.au

Download flyer: Positive Voices Forum

 

Survey for all women and anyone with a cervix: HPV-related cancer awareness

Positive Life in partnership with Femfatales, the National Network of Women Living with HIV, 2018

All women and anyone with a cervix in Australia, both HIV-positive and HIV-negative, are invited to take an online, anonymous survey about awareness of HPV and related cancers.

Positive Life NSW in partnership with Femfatales, the National Network of Women Living with HIV, has developed a survey to assess levels of HPV-related cancer awareness among women.

The results of this survey will help them better understand how they can support women to prevent HPV-related cancer and how they can support women in recovery from HPV-related cancer. The responses will also assist in the development of targeted educational resources for immunocompromised women and women living with HIV, who are three times more likely to develop cervical cancer. No identifying information will be collected.

The online survey will take approximately eight minutes to complete. If you require a hard-copy of the survey, they can mail some to you with reply paid envelopes: please feel free to contact Katya on (02) 9206 2178 or at KatyaS@positivelife.org.au

Disclaimer – the responsibility for the ethical aspects of this survey are with the organisation Positive Life NSW. SHINE SA accepts no responsibility or liability for the survey.