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January 2020

Women feel ‘dirty and shamed’ by HPV diagnosis

As cervical screening across the UK moves to testing for human papillomavirus (HPV) first, new research* has uncovered worrying levels of stigma and misunderstanding around the virus. Despite eight out of ten people having HPV at some point in their lives, if told they had the virus, one in five would feel embarrassed and one in ten dirty.

The new method of testing in cervical screening means many more women will be told they have HPV. Jo’s Cervical Cancer Trust is concerned that gaps in understanding could mean that what might be considered a simple HPV diagnosis could actually have a damaging effect on the lives of women.

Calls to the charity’s Helpline about HPV have already risen 50% over the past year. This is expected to rise significantly as more women are tested for HPV. Jo’s Cervical Cancer Trust is calling on health professionals to be prepared for increases in questions from patients and is encouraging open conversation. It is running its #SmearForSmear campaign during Cervical Cancer Prevention Week (20-26 January) to end the myths and stigma about HPV and get the facts out.

The charity is concerned that calling HPV an STI is fuelling the emotional response to the virus and is encouraging a change in language. It is launching a new resource for healthcare professionals on talking about HPV. Designed for those working in primary and secondary care, the resource covers how people may feel about HPV, questions to be prepared for and ways to talk about the virus.

In most cases HPV resolves spontaneously, but sometimes it causes cells to change, which, if untreated, could develop into cervical cancer. Testing for HPV is a more accurate test than cytology and is estimated to prevent almost 500 extra cervical cancers every year.

Jo’s Cervical Cancer Trust wants to reduce the shame and stigma associated with the common virus. Its new research found a third of women (33%) consider HPV a taboo topic and almost four in ten (39%) would not want anyone to know if they had it. The psychological impact of a HPV diagnosis was also noticeable, with 35% claiming it would affect their mental health.

While findings were similar across all ages, they were more pronounced among young women.

Further findings:

  • Only 54% know you can get HPV from protected sex
  • 24% haven’t heard of HPV and only 16% think it’s common.
  • 48% would be surprised if they were told they had HPV in smear test results with 48% unsure what HPV has to do with smear tests
  • High numbers feel worried (35%), upset (24%) and scared (23%) when thinking about the virus
  • Just 26% feel comfortable talking to their friends about HPV and 26% would feel awkward telling a healthcare professional

Robert Music, Chief Executive, Jo’s Cervical Cancer Trust, said: ‘No one should feel ashamed about having HPV. We must normalise the virus to reduce the emotional impact of diagnosis and ensure people know where to get trustworthy information and support. This means stripping away the stigma and getting the facts out. Smear tests are the best protection against cervical cancer and we want women to understand what their results mean, instead of having to navigate myths.’

GP Dr Philippa Kaye added: ‘HPV is complicated, but it’s so important that women understand what it means to have the virus, especially how common it actually is. We need to smear myths such as HPV being dirty or a reflection on someone’s sexual behaviour. Testing for HPV in cervical screening is a fantastic change which will save lives by preventing even more cervical cancers.’

*Survey of 2,034 Women aged 18 and over. Collected between 9 and 12 December 2019 by Censuswide on behalf of Jo's Cervical Cancer Trust