Change Maker

Barbro flag 25 Jan rev

We, Network Against Gynaecological Cancer, are a patient organisation. Started in 2007, we have about 1,600 members, representing all gynaecological diseases, not only cervical cancer or those related to HPV. Our founding principle was that no woman should die from a gynaecological cancer. We believe that knowledge saves lives. That has been our sort of mantra or vision.

During the past fifteen years, we have taken on a variety of ambitious HPV projects, and I am proud of the success we have helped to achieve.

  • We lobbied for girls to receive the HPV vaccine in schools. And we now have it.
  • We didn't have a boys’ vaccination programme, and two years ago we got one.
  • In Sweden, women had to pay for their own pap smear. Not anymore.
  • Our focus these days is on the World Health Organization’s goal to virtually eradicate cervical cancer. We have been lobbying, together with HPV experts, to get all women in Sweden born between 1994 to 1998 to get the HPV vaccine and an HPV test at the same time. Currently, about 80+ percent of girls are vaccinated in schools. Slightly less for boys in school.

Normally, people should be vaccinated before they're sexually active. But the next best thing is to vaccinate anyone under the age of 30. We are working very closely with Professor Joakim Dillner of the Karolinska Institute, an HPV authority in Sweden and the architect of the eradication programme. This is an ambitious project, financed by the state, and it has the support of all 21 regions in Sweden. Sweden has a fantastic health registry, and virtually everyone is included. So the state knows: if a woman has received the HPV vaccine; if a woman has had a recent pap smear for cervical cancer, and the result; if they haven’t had the test, the system calls on them several times to do it.

We have had HPV testing for many years in Sweden, but it was only for women 30 years of age and older. Then the government expanded the programme to include women 23 years of age and older. The HPV test is much more practical and safer than a pap smear, as the tests are analysed by a machine. The test can be done at home, at a woman’s convenience. They don't have to travel. They don't have to take time from work. The sample can simply be mailed to the testing lab. We lobbied for this, and it has now been implemented as part of the cervical cancer eradication project: all women who get the HPV vaccine, get an HPV home testing kit.

Whether it’s an HPV test or a pap smear, we say that every woman should be screened regularly – even if they have been vaccinated – because the HPV vaccine is not 100% percent effective. In the future, with an even more effective vaccine, together with the HPV test, a woman who is HPV negative will need very few screenings during her lifetime.

Cervical cancer was not something I had thought much about years ago. Then a dear friend died of the disease. Then another friend discovered she carried the gene for ovarian cancer, and she asked me if I could join this Network Against Gynaecological Cancer. I had led other organisations in the past and possessed a certain skillset of use to the group. I also had a keen interest in this type of advocacy. I am a breast cancer survivor, so I know something about cancer.

A large part of every campaign we launch is patient advocacy. We write debate articles. We contact parliamentarians with any type of influence, in all political parties. We were side-lined during Covid, but we are back and working hard.

Communications is our most effective tool. In this latest cervical cancer eradication effort, we try to explain to women how we can actually eliminate HPV cancers; that the spread of the HPV virus – like COVID and polio – can be stopped with a vaccine.

It's a combination of facts, and patient stories: providing a human touch that resonates. Regardless of the objective, we always begin with the same communication roadmap – and we follow it religiously.

In essence, it consists of:

  1. Stating a clear vision and aim for the campaign
  2. Setting clear, specific goals that can be measured
  3. Describing the tactics – how to communicate (tone) and what to communicate
  4. Defining the target audience
  5. Identifying the best platforms to use
  6. Crystallising the main, most impactful messages
  7. Highlighting what we accomplish each year – and what we didn’t

I believe that we have been effective influencers. Together with the strong collaboration of medical authorities and respected members of the community, we have made eradicating the HPV virus in Sweden a realistic objective.

To find out more about our HPV Action Network, its history, its co-chairs Prof. Daniel Kelly OBE and Margaret Stanley, Immediate Past-President, International Papillomarvirus Society (IPVS), click here. We also thank our past co-chair Rui Medeiros, President, European Cancer Leagues (ECL).

Also, don't hesitate to check out our HPV Testimonies project here.