October 14, 2020
Rallying the Global Community to Tackle Inadequacies for Women with Ovarian Cancer
CEO at World Ovarian Cancer CoalitionGuest
Teckro is partnering with the World Ovarian Cancer Coalition to support its global initiatives to improve quality and access of care for women with ovarian cancer. Guest blogger Clara MacKay, CEO of the World Ovarian Cancer Coalition, explains why a sense of urgency is needed for ovarian cancer – a deadly cancer that is often caught when it’s too late.
When the World Ovarian Cancer Coalition launched The Every Woman Study™ in 2018 we closed a significant gap in the understanding of the experiences of women living with ovarian cancer. With more than 1,500 women from 44 countries contributing to the research, the study remains the largest review of ovarian cancer from the point of view of those living with the disease.
The study identified many issues including how the lack of awareness on both the part of women and clinicians can lead to unnecessary delays in diagnosis. It also showed that there are significant variations between countries on all fronts with regards to access to specialist treatment, including genetic testing and crucial clinical trials.
Because of this, many women are missing out on treatments that have the potential to improve survival and quality of life. The study also found significant shortfalls between what women need and what they receive in terms of information, as well as emotional and practical support.
Introducing the Global Ovarian Cancer Charter
The Global Ovarian Cancer Charter is an important next step for the Coalition. With six key global goals, the charter is a rallying cry for anyone with an interest in improving survival and quality of life for every woman diagnosed with ovarian cancer.
The six global goals are:
- Ovarian cancer must become a global priority. Ovarian cancer is set to increase by almost 50% by 2050, and it remains the most lethal of all women’s cancers. We need to recognize the need for urgent action at every level – in every resource setting.
- Women must have access to diagnosis without delay. Too many women are diagnosed with ovarian cancer when they are in an advanced stage of the disease and too unwell to access or tolerate treatment. We need to ensure that women and clinicians are aware of symptoms and they move quickly with appropriate tests.
- Women must have access to the best possible care. For many women access to best possible care, including specialist surgeons and clinical trials is simply non-existent. Lack of financial means must not be a barrier to best possible care.
- Women and doctors must have access to genetic testing and counselling. Women and clinicians must be aware of the importance of family history to understand personal as well as family risk. New treatment options mean that genetic testing is more important than ever to inform decisions about best treatment.
- We must improve ovarian cancer data. Knowing more about the different types of ovarian cancer and improving the overall diversity of data pertaining to where people live, as well as ethnicity, will help ensure that more women have access to the most effective treatment for them.
- Women must be able to access good quality information and support. Many women do not get the information they need at the time of diagnosis and beyond, nor do they feel they receive sufficient emotional help. We need to do much better to ensure that no woman goes unsupported.
Rallying Community Support
We genuinely believe that by showcasing the enormous commitment within the global ovarian cancer community, at all levels, we will be more powerful together.
Meeting charter goals requires both individuals and organizations to help drive forward meaningful conversations that lead to actions. We are fortunate to have several what we call “Charter Champions” – those organizations whose innovations will help lead the way for change.
In this spirit of innovation, we are delighted to be working with Teckro as our newest industry partner. Within our global goals, clinical trials play an important role in advancing new ovarian cancer treatments. Making clinical trials as available and accessible to as many women as possible is paramount. Teckro’s own commitment to make clinical trials more simple, accessible and transparent aligns very well with our Coalition priorities.
We are very excited to be collaborating with Teckro!
To encourage conversation that will help bring our charter to life, we are launching our Charter Summit Series. These virtual events will look at what we can do to progress against the charter goals by bringing together key stakeholders, including women with ovarian cancer, patient advocacy groups, clinicians, researchers, policymakers, and the industry.
The first event, Making Ovarian Cancer a Global Priority, is next Thursday, October 22. We will share our 2020 World Ovarian Cancer Coalition Atlas, which sets out updated global data on incidence, mortality, and survival. Our expert global panel will discuss challenges and ideas on how to tackle the inequalities that this atlas brings to light.
There are a number of ways you can get involved. For example:
- Participate in any – or all – of the Summit Series events.
- Raise awareness within your organizations for the need for ovarian clinical research.
The Global Ovarian Cancer Charter belongs to all of us who wish to change the future of ovarian cancer for all women – no matter who they are or where they live.
We are more #PowerfulTogether!
About the World Ovarian Cancer Coalition
The World Ovarian Cancer Coalition is a global not-for-profit that works to ensure that every woman diagnosed with ovarian cancer has the best chance of survival and the best quality of life possible. The Coalition works with a network of more than 160 patient advocacy partner organizations across 47 countries.
CEO at World Ovarian Cancer CoalitionGuest
Clara MacKay has nearly 20 years of experience in cancer advocacy, including senior level positions in UK organizations covering ovarian, pancreatic, bowel, prostate and breast cancer. She is CEO of the World Ovarian Cancer Coalition and was a founding member of the World Pancreatic Cancer Coalition and Chair of Cancer 52.