All eyes on Ovarian Cancer: 8 May

Expert

Clara MacKay, World Ovarian Cancer Coalition, Canada

Medicom interviewed Clara MacKay, who is CEO of the World Ovarian Cancer Coalition), a not-for-profit organisation that is registered in Canada. With the World Ovarian Cancer Day, which will be held on 8 May, the organisation raises awareness on ovarian cancer [1]. MacKay explained how the World Ovarian Cancer Coalition brings the world together to pay attention to this hard-to-treat cancer.

Medicom: Could you tell me about the World Ovarian Cancer Coalition and the importance of this organisation?

“We work with a network of about 200 patient advocacy organisations worldwide who share our commitment to improving survival and quality of life for anyone impacted by ovarian cancer,” said MacKay. “Over 300,000 people worldwide are diagnosed with ovarian cancer each year and approximately 200,000 people die of the disease. The 5-year survival rates are not encouraging: In high-income countries, it is about 36% and in lower-income countries, it is much worse.” MacKay said that ovarian cancer is the most lethal of women's gynaecological cancers. She added that the incidence and mortality are set to rise significantly between now and 2040. “The number of people diagnosed with ovarian cancer will increase by about 40%. The most significant element of that burden will be in lower-income countries and regions unless we do something significantly different than what we are doing now. It is estimated that 4 million women will die from ovarian cancer between now and 2040 if we don't do any better. That is what drives a lot of our advocacy work, closing the gap between high- and low-income countries. It reflects right back to our World Day campaign strapline, which is ‘no woman left behind’ or ‘no person left behind’ [1].

Medicom: Could you tell me about World Ovarian Cancer Day?

MacKay continued to explain that the work of the World Ovarian Cancer Coalition falls into 3 strategic pathways. “The coalition developed out of an effort to start a World Ovarian Cancer Day, which was launched in 2013. The response to that campaign was so encouraging and positive, indicating there was an appetite for a global network. Raising awareness for ovarian cancer, and World Ovarian Cancer Day in particular, remains an important pillar of our work.”

World Ovarian Cancer Day will be on 8 May. “We have a month lead-in period where we start to warm things up and then, as the month goes forward, we intensify our campaign. In 2013, there were about 30 advocacy organisations involved and we estimated to reach 50,000 people in that first year. Last year’s campaign reached almost 30 million people worldwide in over 50 countries, in about the same number of languages. It is not so much a reflection of our success as it is a reflection of our passion and commitment within the community. A World Day will join patients, patient advocacy organisations, clinicians, and ministers to raise awareness of ovarian cancer, its symptoms, and the risk factors.”

“There will be messages for everyone,” continued MacKay. “Whether you're a health minister or you're a person who's concerned about ovarian cancer or living with ovarian cancer. The messages mainly focus on symptoms, risk factors, the importance of family history, and access to treatments. The campaign has really been driven by our partner organisations on the ground,” emphasised MacKay. “They made some very different but very impactful initiatives, such as securing billboards in Times Square and Piccadilly Circus around the day, creating public service announcements, and the Italian partner organisation even had a feature in the Italian version of Vanity Fair. This year we are starting an ambassador's programme, announcing 2 very high-profile influential women from Nigeria and Kenya and the US who are going to be working with us. All we ask is that people share the same hashtag, which is #NoWomanLeftBehind, or #NoPersonLeftBehind, because that's how we know that the campaign is rolling out effectively.”

Medicom: How are you providing and using evidence in the field?

The second strategic pathway of the World Ovarian Cancer Coalition is about providing original evidence around the experiences of those who are living at risk of or with the diagnosis of ovarian cancer. “We've done some very large pieces of work, including the large ‘Every Woman’ study that we published [2]. We drew on the experiences of 1,500 women from 44 different countries, assessing what they knew about ovarian cancer before their diagnosis, right through to the level of support that they felt they needed and received as part of their care. The findings have been published widely, including in peer-reviewed journals and importantly, are not just used by the coalition, but by our member organisations, set country level to advocate. In this way, we are aiming to fill in the evidence gaps. As a global organisation, we felt we needed to look at the experiences of people in middle- to low-income countries,” continued MacKay. “Therefore, we’re performing a study in 24 low- and middle-income countries, working together with the International Gynecologic Cancer Society. They are networking us into an amazing network of clinicians and patient advocates, who will help us to highlight the challenges in their settings. So our approach is very much about involving people on the ground who are living the experience and are committed to driving change in their own setting and about observing how they use the information that we generate.”

Medicom: How do you create capacity for support?

MacKay said that the third strategic pathway lies underneath both of these things and is about helping to build capacity for supporting the member organisations. “We are trying to make ourselves as useful as we can be to those that we work with,” she clarified. “Sometimes this is very basic. For example, we asked one of our groups in Africa what we could do to make the biggest difference for them. They replied: ‘Creating a template for my newsletter would transform my life.’ We're happy to do this and to do bigger pieces of work as well, like providing evidence in a way that can be used at a national level.”

Medicom: How can doctors or medical professionals participate in World Ovarian Cancer Day?

“It can be as simple as going to the website of World Ovarian Cancer Coalition, or finding our social media. We have discovered that LinkedIn or Twitter are used for talking to healthcare professionals, whereas Facebook is often more for advocates. Importantly, medical professionals can support their local groups by giving them a shout out on World Ovarian Cancer Day. It just takes 1 post and you're adding your voice to the 28 million that are out there speaking. I think it's about using the day to really show that there is a global tidal wave of support and an ambition for ovarian cancer.”

Medicom: Do you have any last comments that you want to share with physicians, caregivers, and the like?

“There are 2 things I would like to say. One is that we are really encouraged by what we are seeing in ovarian cancer in terms of the development of new treatments. But I think we need to ensure that women are diagnosed as quickly as possible so that they are well enough to access and tolerate treatments and that they can participate in clinical trials. In this way they can live longer and with a better quality of life. We feel very strongly about making sure that everyone who is at risk of or living with a diagnosis has access to the best treatments possible. There is no room for delay,” MacKay emphasised.

Related Articles