An OB-GYN’s perspective on HPV self-collection

What do we know about HPV and its relationship to cervical cancer?

Human papillomavirus (HPV) is the known cause of almost all cases of cervical cancer and nearly all women will be sexually exposed to HPV in their lifetime. It’s often not possible to know the exact instance when the virus was transmitted as the virus can go through periods of being undetectable (and likely harmless) and detectable. It’s common to have an HPV infection and most people with a healthy immune system can keep the infection under control, often to undetectable levels after a recheck one to two years later.  However, in some cases the infection persists at clinically validated levels and in these situations, it’s important to monitor it so we can prevent any precancerous changes (dysplasia) from eventually becoming cancer.  Catching and treating this disease early when the prognosis and outcomes are very good are critical to preventing it from becoming cancer.

What’s your perspective on the World Health Organization's goal to eliminate cervical cancer by 2030?

The World Health Organisation (WHO) has three goals aimed at eliminating cervical cancer by 2030. Because cervical cancer is nearly 100% preventable with vaccination, screening and treatment, the goals focus on those three areas.  When I saw patients in the United States, where cervical cancer rates were relatively low compared to other parts of the world, I viewed cervical cancer through a local lens. I was laser-focused on caring for the women in front of me and following guidelines. Joining Roche broadened my perspective on the global barriers to cervical cancer elimination. While the U.S. still has many challenges, with over 50% of new cancers occurring in unscreened or rarely screened women, the global picture is far more severe in the number of women who have not been screened. Worldwide, two out of every three women aged 30–49 have never been screened for cervical cancer, and the WHO recommends that 100% of women be screened at least twice in their lifetimes (by age 35 and again by age 45) with a high-performance HPV test to understand their risk. The highest burden is in low- and middle-income countries.1 This highlights the urgent need for new, globally scalable solutions for a cancer that is highly preventable through vaccination and screening.

As a practicing physician, how did you view cervical cancer elimination?

It was one of many things I addressed with patients. I focused on following guidelines and recommendations, which was the right thing to do, but on another level, I had not given a lot of thought to how to reach people who were not getting screened in the first place. Now I know there’s much more to HPV screening and cervical cancer elimination than following guidelines. As a clinician, I wasn’t always sure how to reach the people I wasn’t seeing — people who never made it to the office in the first place or skipped screening altogether.

What makes talking to patients about human papillomavirus (HPV) so challenging?

Talking about  HPV can stir up a lot of questions and emotions. Patients often ask questions like “Does this mean someone’s cheating on me? Did I do something wrong?” or “How do I tell my partner?” Those questions can be tricky to address in a short appointment, and they often carry a lot of stigma. But I realize it’s crucial to make time for these conversations to improve awareness and remove the shame. Over 34% of U.S. adults are unaware of HPV, and over 37% are unaware of the HPV vaccine.2 We need to find ways to bring people up to speed about HPV and help them feel empowered with the information, rather than shamed.

What could help clinicians educate patients about HPV?

The American Cancer Societyand American Sexual Health Associationhave great resources. There are many global groups, too: the World Health Organization’s International Agency for Research on Cancerand professional groups like the International Papillomavirus Society (IPVS) through its multilingual AskAboutHPV.orgwebsite. Advocacy groups such as Cervivor, the American Sexual Health Association, and HPV Cancers Alliance are doing incredible work in educating the public.

What is HPV self-collection and how is it changing cervical cancer screening guidelines?

Self-collection is the option for patients to collect their own vaginal samples for HPV testing. At the moment in the U.S., self-collection is approved in healthcare settings and at home in a select number of states. However, it will be important to think about ways to make self-collection even more accessible. Guidelines are one pathway to address the accessproblem. In the U.S., for example, the U.S. Preventive Services Task Force (USPSTF) plans to add self-collected HPV testing to its recommendations for cervical cancer screening,3 and the American Society for Colposcopy and Cervical Pathology (ASCCP) already released its first-ever guidelines for incorporating self-collection into clinical practice.4 This isn’t just a national trend; the practice is already well-established in many countries around the world, like Australia and the Netherlands, which are making significant progress toward elimination.

Do physicians have concerns about self–collection?

Yes. Here in the U.S., many clinicians worry that self-collection will lead to a decline in pelvic exams, causing other diseases to be missed. I understand their concerns. A pelvic exam is a comprehensive health check and an opportunity to speak to a clinician in real time. A lot of things go into it — examining the vulva for abnormalities, a bimanual exam to check for ovarian masses or pain. Clinicians are concerned that, if patients miss out on pelvic exams, there could be an uptick in disease and a missed opportunity to have other conversations around their health.

Does self-collection replace the pelvic exam?

No, it doesn’t.

So the pelvic exam is not going away?

Correct. The pelvic exam is not going away. Self-collection is just a new and alternative option for HPV screening for individuals who have been dissuaded from getting screened in the past.

So, self-collection isn’t for everyone?

Exactly. It’s not for every patient or every situation. It’s intended to reach people who are put off by traditional screening for a variety of reasons and may otherwise go unscreened. It's also a way to avoid subjecting patients to discomfort so they can have more positive experience during their visit with their clinician. And, if someone is experiencing symptoms or has had a complicated screening history, seeing a clinician is the preferred option.

What causes patients’ reluctance to visit the clinic for screenings?

A lot of things might cause patients to be reluctant to screen. They include trauma, cultural beliefs, economic hardship, gender dysphoria and culture. Transportation issues, language obstacles and fear of the results can also be major deterrents. Self-collection brings testing directly to the patient, rather than having to be seen by a clinician. It offers a discreet, more comfortable way to overcome these barriersand ensure more people are screened.

Is self-collection safe and accurate?

Yes. There is significant data and science that shows self-collection is reliable. A 2018 meta analysis combined the results of studies comparing self-collection with clinician-collected samples and found that self-collected samples showed strong agreement with the clinician-collected samples when detecting precancers.5(See graphic.) Study after study has shown that women can safely and accurately take their own sample when given proper instructions.6

How does self-collection work?

A clinician provides the self-collection kit and instructions. The patient goes to a private space, like a bathroom, to collect a sample. The sample is then sent to the lab for testing to detect cancer-causing HPV types. Once the sample is passed from the patient to the clinic staff, it goes to the lab and is processed in exactly the same way a clinician-collected sample would be. This videoprovides a play by play.

What have you heard patients say about self-collection?

I recently conducted an informal survey about self-collection among a group of cervical cancer survivors. I asked them: What worries you about self-collection? Their answers were: “Is it accurate? Will I hurt myself by doing it?” and “What if I follow the instructions incorrectly and the result is not reliable?” These were their three main fears, and these are questions patients are likely to ask their clinicians. I’m confident that clinicians can reassure patients that self-collection is very accurate. Studies have shown that many women have positive experiences using the self-collection device, and there are built-in features of the test that ensure it’s done correctly and the results can be trusted.5

How can clinicians learn more about self-collection?

Around the world, healthcare systems are successfully managing self-collection, and they’ve created blueprints for how to do it. Australia and the Netherlands, which are close to eliminating cervical cancer, have integrated self-collection into their screening programs. A program in Peruhas shown that self-collection works, even in remote areas along the Amazon. These early adopters have paved the path so others can benefit from what they’ve done. (See resources graphic.)

I’m interested in introducing self-collection in my practice. What should I do?

If you’re interested in bringing self-collection to your practice, talk to your laboratory partners and look through the resources that professional societies, such as the American Cancer Society and the Enduring Consensus Cervical Cancer Screening and Management Guidelines Committee through ASCCP have published. Most global health organizations and professional societies support this option and are actively working on implementation strategies.7, 8 Self-collection isn’t a future possibility; it’s happening now, and it’s a vital tool to reach the WHO’s cervical cancer elimination goals.