“Did you know we can prevent a cancer?” How talking about cervical cancer could help to eliminate it

Your book, Enough, is a rallying call to eliminate cervical cancer. Why did you decide to write it?

Even before finishing medical school, I started seeing the devastation caused by cervical cancer. During my career, I’ve also seen amazing tools evolve to help prevent it and been involved in global discussions about eliminating it. But I can remember sitting in one of these meetings and thinking, where are the women who have been impacted by this disease?

I wanted to write a book that takes the voices of these women and wraps around it information about cervical cancer, HPV and screening, to try to put a face to this disease. 

One of your chapters asks, ‘What is a woman worth?’ What is your answer?

Every time I deliver a diagnosis or hear about another woman dying of a preventable cancer, I can’t help but ask this question. I want someone to tell me how the lives of more than 340,000 women a year aren’t worth saving. I’m not only asking about their value as beloved mothers, daughters and friends.

From a financial perspective, it is very cost-effective to spend healthcare dollars on preventing cervical cancer. WHO has calculated that every one dollar spent on cervical cancer screening in low resource setting returns 26 dollars to the economy, because you keep women in the workforce, and because of all the unpaid labour women do that keeps societies running.

There’s also the intrinsic value of women to our societies. When children lose their mother, they are less healthy, they do worse at school, they marry earlier, they don’t get vaccinations. It also creates economic turmoil for the family, because women are often the major workforce unit, if not the only earning unit. We can do better at keeping them alive by preventing a preventable cancer.

You’ve worked in various lower income countries as well as the US. What are the main differences in their approach to cervical cancer and its impact on women?

Cervical cancer is hard to talk about everywhere, but I think it’s even harder to talk about in cultures where basic knowledge about it is low, and sometimes there’s not even a word for cervix.

In some of the lower income cultures I’ve worked in, nobody talks about anything below the belt, and women may feel like they need to get permission for things like a pelvic examination from their husbands, who may not understand why this is important. So, there needs to be a different approach to spreading the word and educating women.

Clearly, different tools are available. Running a pap smear programme is extremely difficult and expensive, so the tests are different in lower-income countries – the most common being visual inspection with acetic acid, even though we’re hoping to switch more to HPV DNA testing.

Another difference is the scarcity of pathologists and labs that can process biopsies, which makes it very difficult to even do a biopsy and get a diagnosis.

The other big elephant in the room is HIV disease, which is much more prevalent in the lower-income countries I’ve worked in. It is much harder to treat precancer in women with HIV, and their progression to cancer is faster.

Are there any similarities?

I think cervical cancer is a stigmatised disease everywhere, and many cultures, including the US, have a hard time talking about sex and its relationship to disease, which is damaging for women. Having the vast burden of unpaid work also makes it extremely hard for them to prioritise their own care, and their own selves, over those of others, which can delay them seeking help.

In the book, you describe your excitement at hearing about the results of the first major clinical trial for a cervical cancer vaccine in 2003. Why do you think vaccines have yet to deliver the happy ending that you imagined?

I think part of the initial challenge was messaging. Perhaps we should have started out by calling it the anti-cancer vaccine, rather than the HPV vaccine, because people had to make the link between what is HPV, how do you get it, and what does it cause, and therefore get the vaccine, which is more difficult than ‘this is a vaccine that prevents cancer’.

This messaging about HPV has clashed with some religious groups, who believe girls don’t need it because they should only have one sexual partner. But a woman can only have one partner her whole life, and unless her partner has also only had one partner, she can be infected with HPV. This is a virus that causes cancer; actually, six cancers. Why wouldn’t you want to protect your child against six cancers?

What do you say to parents when they express concerns about the vaccine?

I am empathetic, because misinformation is rampant, and social media rarely amplifies a positive story. My plea is to examine your information sources: stories are important, but you also want to look at data.

We have given 200 million doses of this vaccine globally; 100 million doses in the US. It has been tracked so carefully because of all these concerns, by so many global safety agencies, and there has never been a consistent pattern of any serious, long-term side effects. Yes, it gives you a sore arm, and you might feel tired, but people are used to that.

I might also tell them a story about someone like Morgan, who I describe in my book. At 14, she turned down the vaccine because she didn’t want a shot, she didn’t understand it. At 24 she got cervical cancer, and now she’s permanently infertile, she never got to have children and has long-term side effects from the radiation treatment. What she wouldn’’t give to go back to her 14-year-old self and say, ‘Take this vaccine.’

The long-term consequences of cervical cancer treatment aren’t often discussed, and I found your chapter on this particularly harrowing and eye-opening. Why did you decide to write about this subject?

Nobody wants to walk around talking about how ‘my vagina was damaged from radiation, and it is very difficult for me to have sex for the rest of my life’, but I don’t think you can get a full picture of why we want to prevent this disease, unless you understand the impact of this disease.

Cervical cancer does have a high cure rate, and if you’re lucky enough to get it found early and you can have surgery, you may have lost your fertility – that’s a big deal – but you may not have the long-term effects of radiation therapy, or complex and disfiguring surgery with life-altering consequences. 

There is hardly any way to get treated for this cancer that doesn’t involve some long-term change in how women relate to themselves as beings, and how society relates to them as beings.

It is a nod towards the ferocity and passion of cervical cancer survivors that they are willing to share their stories, so that people understand what this is like and that they don’t need to go through this. 

What else can women – and men – do to help raise awareness of this issue?

Firstly, we can be peer-to-peer educators and advocate in our own circles. Discussions on the sidelines of soccer matches or when you’re hanging out with your friends about HPV or the vaccine can be powerful, and it’s something we can all do.

Even the question, ‘Did you know we can prevent a cancer?’ is provocative enough to get a conversation going.

Some of us might post on social media, and here we need positive messages and positive stories, because the negative ones are the ones that get such traction.

Some might choose to ask what our schools are teaching about HPV, and is it accurate? Since almost every sexually active person will acquire HPV, are they talking about how to take care of yourself, so it doesn’t cause you harm?

Each time you make yourself available to talk about cervical cancer, you are helping to influence the trajectory of this disease.

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Linda Eckert is a professor of obstetrics and gynaecology at the University of Washington in Seattle, and an internationally recognised expert on immunisation and cervical cancer prevention. Her book, Enough: Because we can stop cervical cancer, is published by Cambridge University Press.