Current cervical cancer guidelines clearly state that screening should be offered to all people with a cervix over the age of 25 who have ever been sexually active; however, the LGBTQIA community have consistently been, and remain, under-represented in screening and over-represented in cancer statistics.
Sexual or gender minority status is not routinely collected in official morbidity and mortality data sources, so there are no published data on cervical cancer incidence and mortality among gender and sexually diverse people. Various studies suggest the prevalence of cervical cancer may be slightly higher in lesbian and bisexual women than in heterosexual women, however, there is no consensus and study populations vary considerably.
Reported rates of cervical cancer screening are variable among lesbian and bisexual women. Hyde found the overall screening rate was lower for lesbian and bisexual women than the general population in Western Australia,1 but an earlier sample of lesbians in Australia found similar screening rates to the general population.2 The 2016 Sydney Women and Sexual Health (SWASH) survey showed women who had never had sex with a man were 2.5 times more likely to have never been screened, compared to those who had ever had sex with a man.3
Reasons for this under-servicing include: misinformation about perceived risk among both patients and clinicians; the impact of discrimination and negative experiences of healthcare on people who need screening; and overall lower utilisation of sexual and reproductive health services by LGBTQIA people. Barriers to screening are even higher for transgender patients than for cisgender lesbian and bisexual women.4
A 2016 survey of LGBTQIA people with a cervix by PapScreen Victoria found that 23 per cent had never had a Pap test; 28 per cent said ‘I don’t think I need one’; and 20 per cent were concerned about homophobia and transphobia.5
Gaps in the knowledge of clinicians is explained, in part, by a lack of training and the paucity of appropriate, population-based data. However, clinicians’ personal beliefs about sexual or gender orientation may also be pathologising and form a major barrier to patient disclosure within consultations.6 Cervical screening is more common in women who have disclosed their sexual orientation to their clinician than those who have not.7
Human papillomavirus transmission and risk
The presence of cervical dysplasia in lesbian women who have never had sex with men has been documented since the early 1980s.8 An Australian study found no difference in the prevalence of abnormal cervical cytology and cervical intraepithelial neoplasia between women who had sex with women and controls, including women with no history of male partners.9
The Australian National Cervical Screening Program acknowledged the need to encourage lesbians to have cervical cancer screening in 1995, and the ‘Lesbians Need Pap Smears Too’ campaign was launched in Victoria the following year. However, a Western Australian study showed that lesbian and bisexual women continued to encounter healthcare workers who believed screening to be unnecessary for them.10
Human papillomavirus (HPV) transmission occurs through contact with infected genital skin, mucous membranes, bodily fluids and skin-to-skin contact with the genitals or anus of an infected person. Therefore, sexual activities between women, that may include genital rubbing, digital penetration or sharing devices, are risks for HPV infection and cervical cancer. In addition, women who have sex with other women are rarely motivated to use barrier protection.11 12
While evidence for transmission of HPV between female sex partners clearly exists, clinicians must also understand that a significant number of women who have sex with women (WSW) have also had sex with men, and many continue to do so.13 This is especially true of older women who are much more likely to ‘come out’ later in life. The median number of lifetime male sexual partners may also be significantly greater for WSW than controls.14
Co-factors in HPV infection
Several co-factors are known to increase the risk of persistent HPV infection and lesbian and bisexual women may experience higher rates of these, especially higher body mass index scores, alcohol intake and smoking history.15 Bacterial vaginosis (BV) rates are higher in lesbian and bisexual women, and BV is known to increase risk of other STIs.16
Uptake of HPV vaccine
It stands to reason that, if lesbian and bisexual women are an under-served group at risk for HPV infection, their uptake of the HPV vaccine may also be lower than the general population, especially voluntary uptake among older cohorts prior to routine vaccination in Australian schools. Australian data suggests significant demographic variation in HPV vaccination uptake, but it is not specific to LGBTQIA people.17 The 2016 SWASH survey found that over half (57 per cent) of young women aged under 27 years (who would have had access to free vaccination) had received at least one dose, but only 29 per cent reported completing three doses. This reported coverage is much lower than that for surveys of the general population, where over 50 per cent of eligible women believed they had the full three doses.18
Cervical screening for trans men and intersex people
Intersex people are born with physical or biological sex characteristics that are more diverse than stereotypical definitions for male or female bodies. While there are many underlying anatomical and physiological causes of intersex conditions, the clinician needs to understand that the intersex person who presents to them may need cervical screening, prostate examinations or mammograms; some people may need a combination of these.
The Darlington Statement19 states that ‘national screening programs and computerised systems must recognise the needs of people born with intersex variations.’ The clinician must be prepared to screen the organs that are present to reduce cancer risk. The same applies to the needs of transgender people.
There are many transition pathways for female to male transgender people. Some will choose only to alter their gender presentation. Others will choose a medical transition using masculinising hormones and others will choose surgical interventions, but genital reconstructive surgery is less common among trans men than in people transitioning from male to female. Many trans men will have intact female reproductive organs and external genitalia that may or may not be affected by exogenous hormones. Apart from cervical screening, they may also need advice on controlling vaginal bleeding and contraception.
The incidence of cervical cancer in trans men is unknown. Cervical screening should continue according to standard guidelines if a total hysterectomy has not been done. However, collecting cervical samples by traditional methods may be difficult, as vaginal examination is often unacceptable if there is dysphoria about natal genitalia and vaginal penetration may never have occurred. Testosterone may cause atrophic vaginal changes and cervical samples have higher rates of unsatisfactory cytology.20 The introduction of HPV testing as the primary screening tool offers benefits to transgender men, especially the potential for self-collection of specimens.21
The Australian and New Zealand Professional Association for Transgender Health (ANZPATH) offers training in the care of transgender patients. Clinics, such as the AIDS Council of NSW (ACON) Check OUT Clinic in Sydney, or Thorne Harbour Health Equinox Gender Diverse Health Service in Melbourne, now provide free, culturally appropriate services to anyone with a cervix.
LGBTQIA people frequently report negative healthcare experiences, which leads many people to conclude it is better not to disclose their sexuality or gender identity. However, disclosure improves the patient-clinician relationship and has been shown to have a positive impact on the health of LGBTQIA people. Positive disclosure results in greater patient satisfaction and an increased likelihood of accepting routine screening.22
In order to ensure all patients have access to appropriate screening, clinicians need to create a safe therapeutic environment that encourages disclosure. While facilitating disclosure should ideally be a shared responsibility between patient and doctor, in reality, the power lies in the hands of the clinician.
While a large proportion of LGBTQIA people have positive healthcare experiences, many feel their clinicians are uncomfortable, prejudiced or overtly condescending after disclosure of their sexual orientation. Many people fear that disclosure may lead to mistreatment or denial of care. It is not uncommon for transgender people to report being denied care because of their transgender status.23 Non-disclosure for fear of discrimination also leads people to conceal other important clinical issues, such as depression, sexual abuse, abnormal vaginal bleeding and intimate partner abuse.24
A systematic review of the healthcare experiences of Australian women who identified as LGB found that major concerns included:
- Assumptions of heterosexuality
- Communication barriers (for example, provider discomfort)
- Poor provider knowledge
- Lack of LGB-specific resources and referral networks.25
For people who are transgender or intersex, access to clinicians who are knowledgeable about their specific health issues is one of the most reported barriers to care.
McNair and colleagues26 found the majority of LGB women preferred to be asked about their sexual orientation by their doctor, but almost all of the doctors preferred to be told. Many doctors believed non-disclosure created an optimal patient-doctor relationship, through ‘colour-blindness’ or ‘treating everyone the same’, but very few of the women shared this view. This attitude demonstrates not only a lack of understanding by doctors of the barriers to care experienced by LGBTQIA patients, but also denies patients the opportunity of having their specific health needs addressed.
Clinicians need to be vigilant about identifying people who are not up to date on cervical cancer screening or who have not followed up after an abnormal screening result. Simple ways of facilitating disclosure and creating a supportive environment include:
- Positive acknowledgement when a patient discloses
- Using gender-neutral language and asking screening questions that do not discriminate against any individual or group
- Incorporating routine questions about sexuality and gender identity and asking all patients, regardless of sexual preferences or identity. For example, ‘Do you have a partner? Is your partner male or female?’ or ‘What are your preferred pronouns?’
- Not making assumptions about gender identity, sexuality or sexual preferences. There is significant diversity in sexual preference and behaviours among the LGBTQIA community. Gender identity does not define one’s sexual orientation
- Providing resources and referral options that are LGBTQIA-friendly, including displaying LGBTQIA symbols and health promotion materials, having inclusive intake documentation, and non-discrimination policies for all staff.
Improving health outcomes for LGBTQIA people is a simple combination of good medical practice and patient-centred care: find out who the person in front of you is and treat them with respect, sensitivity and humility. Don’t make assumptions, commit to learning what you need to know and don’t be afraid to ask questions.
- Service accreditation (The Rainbow Tick): www.glhv.org.au/LGBTIQ-inclusive-practice.
- ANZPATH Trans, gender diverse and non-binary (tgdnb) online training module: www.anzpath.org/education/.
- Wavelength, a free open access medical education resource on lesbian, gay, bisexual, transgender, intersex and queer (LGBTIQ) health: www.wavelengthmeded.org/.