Exclusive: Private At-Home HPV Testing Is A “Worrying” New Trend

Private companies are selling HPV testing kits and vaccines online in what experts are calling a "worrying" emerging trend in the private sector. Health experts such as The Eve Appeal (the leading UK national charity funding research into and raising awareness of the five gynaecological cancers: womb, ovarian, cervical, vulval and vaginal) have told Refinery29 that these kits are being "mis-sold" and companies are profiting from young women and people with cervixes’ anxieties about their gynaecological health. 

HPV stands for human papillomavirus. This is the name of a very common group of viruses which are, generally, symptomless. Barrier methods of contraception, like condoms and dams, are recommended to reduce the risk of genital HPV infection. Around 80% of people will catch it at some point in their lifetime. It can affect anyone, regardless of their gender or sexuality. It does not cause any problems in most people but some types can cause genital warts or cancer. Cancers linked to high-risk HPV include cervical cancer; however, having HPV does not necessarily mean you will develop cancer.

This association, however, is the reason that cervical screening is recommended for women, trans men, non-binary and intersex people with a cervix who are between the ages of 25 and 64. 

Understandably, for this reason, HPV causes particular concern among young women and people with cervixes. Yet it is still shrouded in mystery and stigma. The virus was little-discussed until around a decade ago when, in 2008, a vaccine was rolled out to girls on the NHS for the first time. It was then the subject of an entire episode of Lena Dunham’s HBO hit Girls, called "All Adventurous Women Do", which aired in 2012. In it, Hannah (Dunham) is confused as to what HPV actually is and initially misunderstands her gynaecologist. The Eve Appeal told Refinery29: "Many private companies are using the common myths around HPV to jump on people's fears and anxieties to try and sell tests and vaccines irresponsibly and dangerously."

Household name Superdrug is one of the pharmacies selling tests. On their website they note: "The human papillomavirus (HPV) is the most common sexually transmitted infection in the world, and is the leading cause of cervical cancer." They then go on to say that "getting tested regularly for HPV helps you to catch an infection early, before the virus spreads or develops into cancer." They direct people who get a negative test (meaning they do not have the virus) to the HPV vaccine, which they also sell.

So far, Refinery29 has also seen evidence of other private health companies and pharmacies doing the following online:

- Advertising HPV tests to be bought after sex with a new partner or unprotected sex.

- Advertising HPV tests to be bought and used every time after sex like a normal STI test.

- Advertising the HPV vaccine for as much as £500.

The Eve Appeal says that all of the above is "irresponsible", particularly because it reinforces stigma surrounding casual sex, automatically linking it to the virus. The Royal College of Obstetricians and Gynaecologists (RCOG) agrees. 

Dr Edward Morris, president of the Royal College of Obstetricians and Gynaecologists, explained why:

"It is worrying to learn that some websites are profiting off of women’s fears and insecurities by promoting paid-for HPV home testing kits. We are concerned that many of these testing kits do not offer any follow-up support to users, and are not regulated or controlled by the NHS," he told Refinery29. 

He added that RCOG understands that women do have concerns about their health and want to access these tests for reassurance. However, he stressed that "regular smear tests are the best way to monitor any cell changes and presence of HPV."

"Routine cervical screenings are conducted freely, and women are invited every three to five years depending on their age. We would encourage everyone to have their smear test when contacted, and to speak to a healthcare professional about any questions or concerns they may have," he added. 

When approached for comment, Superdrug told Refinery29:

"Superdrug sells an easy to use HPV swab test to give people a simple and accessible option to test themselves for HPV. If the test result comes back negative, people may then want to protect their health by considering getting vaccinated against HPV." 

"If the test comes back positive we advise women who are infected with high risk strains of the HPV virus that they are more likely to develop cervical cancer than those who do not carry the virus, therefore it is important that they arrange to see their GP. Testing positive may simply mean you need to have slightly more regular smear tests, but you should always discuss these results with your GP. We make it clear that simply testing positive for a high risk HPV type does not mean that they will develop cancer and that in fact most women become infected with at least one strain of HPV at some point in their lives. In the vast majority of cases, the infection clears within a few months without causing any symptoms or damage. The at-home HPV test is not a replacement for the NHS smear tests which are carried out by a healthcare professional."

As Superdrug acknowledges, part of the problem is that a positive HPV test does not automatically indicate the presence or even risk of cancer so these tests could be causing anguish where it is not needed. 

Therein lies the rub. We know, anecdotally at least, that some people do not feel listened to by their GP when they discuss their reproductive and gynaecological health. This makes it easy for private companies to step in and appear to offer better care. But in the case of HPV, that care may not be better as it is not properly supported by the NHS with the correct information and follow-up appointments. 

The Eve Appeal said: "If you order an HPV test and it comes back positive, you cannot get a cervical screening test on the NHS unless you are currently due one, so there is no appropriate follow-up or next steps for people with cervixes who take the test and often no proper one-to-one discussion to explain the results."

They added that more awareness is needed about HPV and what it actually entails, even when it comes to how the NHS approaches this issue. "Result letters (sadly even NHS ones) can be confusing and lead to more anxiety," they added. 

Moving forward, Dr Morris notes that home testing for HPV may be available on the NHS with the appropriate follow-up and support. 

"There is currently a trial happening in England where around 30,000 women are being offered HPV home testing kits for free on the NHS. The RCOG fully supports this trial and believes it will encourage more people to be screened and therefore be identified for follow-up care. Women who have HPV in their self-sample will be asked to have a standard smear test taken by a healthcare professional and follow-up screening or treatment can then be offered as required," he said. 

Refinery29 asked the Medicines and Healthcare products Regulatory Agency (MHRA), which is sponsored by the Department of Health, whether they had concerns about this proliferation of online tests for HPV. They said:

"Medical devices and diagnostic tests, including sample collection kits which are placed on the market in the UK must be UKCA and/or CE marked by the manufacturer of the kit and registered with MHRA. More information about the legal requirements for manufacturers can be found here. MHRA does not provide general advice on which medical devices or tests should be used. We recommend members of the public refer to guidance on specific health conditions, including HPV, on the NHS website: Health A to Z - NHS (www.nhs.uk). If people have concerns about any new or existing health condition they should consult their GP."

They added: "Patient safety is our highest priority. When concerns about the safety of medical devices and tests are brought to our attention we review and take action where necessary."