Recent Developments

Joint Statement on COVID-19

In response to the global pandemic, the World Ovarian Cancer Coalition collaborated with 8 other global cancer coalitions and alliances in order to jointly call for a plan of action to ensure that we regain ground that has been lost as a result of COVID-19 and protect cancer services and patients.  According to a recent survey led by the Coalition, many patient organizations are facing significant challenges in the wake of the pandemic,  You can read the results from the survey here. The text of the joint statement is below, or you can view the PDF here.


INTRODUCTION

As representatives of 9 global cancer coalitions and alliances, representing 750 patient advocacy and other cancer organizations and the interests of over 14 million patients around the world1, we have united to share the following statement on COVID-19 and a call for a global plan of action for cancer to meet the challenges of future pandemics or health crises.

Although in some countries we are seeing encouraging signs that the worst phase of the pandemic is coming to an end albeit with concerns about a potential second wave, in other countries COVID-19 continues to pose severe challenges. However, we believe that this is a crucial time to start addressing how we can restore cancer services safely and effectively and without undue delay where at all possible.

As an alliance of cancer organizations representing patients from all over the world, we believe we have an important role to play in sharing and reinforcing critical key messages. This includes messages to encourage those who are living with cancer to continue treatment and to those with concerns about symptoms to visit their primary health care providers as soon as possible. It is also essential that we support organisations working at national and local level who are directly providing support and information for cancer patients at this challenging time.

THE CHALLENGES

We have seen first-hand the devastating impact that COVID-19 has had on cancer services and patients in many countries including:

  • Suspension of many screening and diagnostic services;
  • Delays on the part of those with symptoms that could be cancer in seeking medical assessment or postponing planned investigations – which will undoubtedly lead to an increase of cancers diagnosed at later stages and with higher mortality rates;
  • Cancellation and/or deferrals of life-saving treatments, including surgery, chemotherapy, immunotherapy, targeted therapy, and radiation;
  • Changes in treatment regimens to ones that allow for the best balance between clinical efficacy and protection against exposure to the virus;
  • Interruption of vital research and clinical trials that are essential to developing effective future cancer treatments;
  • Plummeting incomes for charities and not-for-profit patient advocacy organizations that play a vital role in supporting cancer patients – at a time when these organizations are reporting a significant COVID-19 related increase in demand for information and support, including demand for new information resources that are COVID-19 specific. There is a real threat that this fall in income will mean many cancer patient advocacy organizations will cease to exist;
  • The need for these same charities and not-for profits to change working practices almost overnight including major upscaling of technical know-how and equipment, moving face-to-face services and activities to virtual platforms, moving from office to home based working and managing the impact of reduced staff numbers due to financial stresses.

THE WAY FORWARD

We must do whatever is required to combat the impact of the above challenges.

We acknowledge the efforts that have been made by national front-line workers and healthcare systems to deal with the pandemic. We are aware of the tremendous toll that this crisis has had on the physical and emotional well-being of all healthcare workers, including those from cancer services. They must be fully supported to recover from the physical and emotional impact experienced during this time.

We applaud efforts that have been made in some areas to provide cancer patients continued access to the best treatment and care possible. It is especially important that we recognise these good practices as measures that can be implemented in a future health crisis.

Best practices include:

  • Hospitals that are designated or designed as COVID-19 free centres where cancer patients can be treated at much lower risk of catching the virus;
  • Where this is not possible, onsite separation of cancer patients who need to visit hospital from those who may have COVID-19. Cancer patients must be confident that they can safely access services;
  • A focus to ensure that there is a rapid catch-up to post COVID-19 levels of cancer treatment as well as in screening programs and follow-up investigations;
  • Ambulatory services designed to deliver, where practical, safe and possible, treatments or tests at a patient’s home;
  • Tele-medicine services – including telephone, online, and virtual connections to healthcare teams and individual clinicians, decreasing the need for in-person hospital visits, particularly for routine follow-up appointments;
  • Innovative ways of involving family and carers to participate in consultations where patients may not be allowed to bring anyone with them, for example, through virtual services.

We also know from our own member organizations that there are many excellent examples of good practice in relation to supporting cancer patients during this time, for example, by offering direct access to psychological support services specifically for those experiencing anxiety as a result of COVID-19 and the establishment of app-based support groups.

Indeed, many new services offer the potential to increase accessibility to vital support, not just during a pandemic, but once we return to some state of normality.

The current international health crisis has also seen a sometimes fractured and competitive cancer community come together, with regular online meetings to share experiences, implement new ways of working and, most of all, improve communications. Other key players within the sector (including pharmaceutical, bio-tech, technology and academia) have also come together in innovative collaborations to tackle the COVID-19 challenge.

We believe that actions like those described above should form part of a clear and thorough global plan of action for our cancer communities that can be drawn upon during this, as well as, future pandemics or crises.

At the global and national level, patient advocacy organizations, governments and health services, must work together with other key stakeholders including industry and academia, to ensure that we regain the ground that has been lost to the COVID-19 pandemic.

We the undersigned are here to play our part in this crucial work.

Advanced Breast Cancer Global Alliance
Global Lung Cancer Coalition
Global Colon Cancer Association
International Brain Tumour Alliance
International Kidney Cancer Coalition
Lymphoma Coalition
World Bladder Cancer Patient Coalition
World Ovarian Cancer Coalition
World Pancreatic Cancer Coalition


 

1 Globocan 2018 https://bit.ly/Globocan accessed 20/6/2020

Estimated number of prevalent (5-year) cases in 2018, worldwide, both sexes, all ages

 

Cancer 5-year prevalence (Global)
Kidney 1,025,730
Ovary 762,663
Bladder 1,648,842
Colorectum 4,789,635
Non-Hodgkin Lymphoma 1,353,273
Hodgkin Lymphoma 79,990
Primary malignant Brain tumours (CNS), all ages 771,110
Lung 2,129,964
Pancreatic 282,574

Prevalence data for advanced breast cancer is not available on Globocan. The 14m figure used includes an estimated figure of 2m people worldwide living with advanced breast cancer. This is based on an assumption that of the 6,875,099 people (Globocan, 5-year breast cancer prevalence) living with breast cancer one-third are living with advanced breast cancer.

 

Joanne Kotsopoulos, Ph.D., Women’s College Research Institute


I am part of a large team of scientists, collaborators, research staff, and trainees at Women’s College Research Institute (WCRI) in Ontario, Canada dedicated to improving the management continuum of women who are at a high risk for breast and ovarian cancers. Much of our team’s research focuses on women with a BRCA1 or BRCA2 mutation who face significantly increased risks of developing those cancers.

Approximately 20% of ovarian cancers are attributed to a BRCA1 or BRCA2 mutation. Fortunately, women who know they carry either mutation are able to make evidence-based decisions to prevent this fatal disease with risk-reducing surgery. By identifying mutation carriers and offering them timely preventative surgery we can help prevent ovarian cancer from starting. Our ongoing study at Women’s College Hospital, The Screen Project, offers genetic testing for these BRCA gene mutations to anyone in Canada irrespective of their family history.

Unfortunately, surgical removal or the ovaries and fallopian tubes, called bilateral salpingo-oophorectomy – remains the only effective way to prevent ovarian cancer and improve survival in this population. We are working closely with women who are BRCA mutation carriers and are undergoing oophorectomy, to collect valuable information on quality of life, menopausal symptoms, bone health, and other non-cancer outcomes following preventive surgery. This allows us to offer evidence-based management options to help alleviate both the short- and long-term effects of early menopause that result from this surgery.

As part of a large international collaborative study, we have the power to produce high quality data that can be implemented worldwide for the greatest impact. Our deepening understanding of hereditary cancers at a fundamental level will ultimately help us to deliver personalized strategies to improve women’s health through lower incidence and mortality rates globally. We continue to evaluate the role of several risk factors, including hormones and reproductive factors, as well as screening, on the risk of developing or dying of this disease.

Lately there has been widespread interest in studying the fallopian tubes as the origin site for some ovarian cancers – a very new area of research that is currently understudied. Some experts have proposed that just removing the fallopian tubes, called salpingectomy, may prevent some cases of the disease. Our team at WCRI recently received funding to investigate how this procedure impacts ovarian cancer risk and outcomes in women with either a BRCA1 or BRCA2 mutation. These critical findings will ensure that only highly effective prevention options are offered to this high-risk population.