By: Tristan Bilash (he/him/human)

The first time I was called a unicorn, was in the early 2000’s during my first semester of university. A fellow classmate, who arrived in Canada just 24 hours before, promptly asked me out on a date after I held a door open for him. He was serious. I was serious as well when I respectfully declined his invitation and informed him that I only dated women. (Spoiler alert: I presented as a woman back then.) He declared there was no such thing as a lesbian or a gay woman and explained in his home country, only men could be homosexual, and if they were, they would be jailed, or worse. As he walked away, he scoffed, “You are a unicorn – you don’t exist.”

I can’t say that I was devastated by this declaration. To a degree, I was already tempered by repeatedly hearing people like me were delusional about our sexual orientation and gender.

During this same time, my main concern was fielding multiple medical appointments to get to the root of symptoms I had been struggling with since my early teen years. The answers I received were little more than the familiar suggestions to add fibre to my diet or that I needed anti-depressants.

By my late 20s, I was exhausted from years of medical tests and symptoms written off as irritable bowel syndrome or depression. After an extremely gruelling experience, where abdominal pain took me to the floor of a bathroom for hours, I asked my family physician if I might have cancer of some type. Honestly, I didn’t know much about cancer at the time. While the physician shook his head several times and informed me it was highly unlikely I had cancer, as I was “too young”, before I left his office I convinced him to arrange a colonoscopy and pelvic ultrasound for peace of mind.

The very last time I met with that physician was post-surgery (hysterectomy, double oophorectomy, debulking of tumour) for stage IIIC low grade serous ovarian cancer. He clearly hadn’t read my chart before meeting with me that day as the shock on his face said it all when I told him about my diagnosis. I was 30 years old with advanced ovarian cancer – again somewhat of a unicorn.

Fast forward almost 20 years and things have considerably changed. If my headshot for this blog doesn’t give away the reveal: I am a man of trans experience. The removal of my cancer-laden gynecological parts did not contribute to me being trans as I knew that I was a boy when I was four years old. As it turned out, my ovarian cancer surgery greatly reduced the amount of gender dysphoria and related depression I struggled with for so long.

In addition to being transgender and an ovarian cancer survivor, I’ve worked in oncology almost 15 years. These three facets of my being intersect on so many levels, and sometimes it’s overwhelming. Before my gender affirming medical transition, I was more forthcoming with clients/patients about my ovarian cancer experience if I assessed the self-disclosure was helpful to build rapport. I’m more guarded now as sharing my diagnosis inevitably means further conversation about my gender. I never used to have to think about my personal safety when sharing about my ovarian cancer – now it’s often top of mind.

I am keenly aware that my physical appearance would have allowed me to melt easily into the background and live a quieter life. This “passing privilege”, as some call it, means that unless I told you up front, you would be hard pressed to know I was a transgender man. So why give up anonymity and perceived safety to be public about being a transgender man and ovarian cancer survivor? Because of Robert Eads.

Robert is often featured in my presentations and writings. His heartbreaking story about struggling to find someone willing to treat his ovarian cancer because he was transgender is reflected in the 2001 award-winning documentary Southern Comfort. I won’t ever forget the catharsis I felt as I watched the movie for the first time. I was equally relieved, humbled, and devastated. Relieved I finally found someone like me: a transgender man with advanced ovarian cancer. Humbled to be privy to glimpses of the last year of Robert’s life. Devastated because Robert’s emotional and physical suffering could have been prevented.

And a part of me was shattered because I felt I was a lone unicorn again. I continued to search for programs and supports for 2SLGBTQIA+ ^[1] cancer patients often to no avail. Those I could find were usually geared towards gay men with prostate cancer or lesbians with breast cancer – reflecting the available research at the time. I had to believe I wasn’t the only transgender man with ovarian cancer in the world – but it honestly seemed most times that it was just Robert and I.

In 2020, I was invited to provide a keynote speech for the Canadian Association of Psychosocial Oncology (CAPO)’s national conference. I had presented to groups before, but this was the furthest reaching audience by far. I knew I would have a lot to share that those of us who work in oncology hadn’t thought about before. Given the warm gracious response and feedback, I was right. From that moment, I knew I would do everything I could to deepen the anchor Robert Eads’ story was for me for so many years. For him and so many others, I would be as visible as possible to improve transgender cancer care experiences moving forward.

March 31^st is the International Transgender Day of Visibility – a day of celebration and awareness. Today I am visible for those who can’t be. They can’t be because either they aren’t ready or don’t want to be.  They can’t be because they live somewhere they will be harmed, or lose their job, their home, or even their life. And today, I am also visible on behalf of transgender cancer patients, and men with gynecological cancers especially.

Today, I am also very mindful what my visibility means in ovarian cancer spaces, “women’s” healthcare offices, and gynecological conferences. I hope it means I help people think of things they haven’t thought of before, and they take action to transform their approaches to caring for their transgender clients/patients. Ultimately, helping improve cancer research and care for people like me helps improve care for everyone.

The irony is not lost on me that while I’m very private about my cancer and gender history closer to home, I’m also an international speaker and transgender cancer care advocate. But I can’t help but stand out and stand up where I can in the hopes of getting that much closer to #NoPersonLeftBehind. After all, standing out and being noticed is exactly what unicorns do best.

Tristan Bilash (he/him/human) is a registered social worker, community partner with QueeringCancer.ca, 2SLGBTQIA+ representative for the CAPO’s Advocacy Committee, and a friend and advisor to the World Ovarian Cancer Coalition. He lives in Canada.

[1] Two-Spirit*, Lesbian, Gay, Bisexual, Transgender (including non-binary, agender, genderfluid), Queer, Intersex. Asexual, other included identities. Two spirit is used among Indigenous peoples around the world but heard more in North America.  According to the Public Service Alliance of Canada with 2S at the beginning, this acronym further acknowledges the fact that Indigenous peoples were the first to build communities that honoured sexual and gender diversity in this land.

 

 

 

The Heart of Cancer Advocacy

By: Frances Reid, Every Woman Study™ Lead & Programme Director

Closing the care gap is, or should be, at the heart of cancer advocacy, no matter the setting or type of cancer. There is always the opportunity to improve, to drive progress forward, ensuring people get the care they need and deserve. At the World Ovarian Cancer Coalition, we firmly believe that it is vital to find where the care gaps are, and to find opportunities that are revealed during that search.

This time last year as World Cancer Day was adopting this theme for the first time, we were getting ready to launch the Every Woman Study™, Low- and Middle-Income Edition with our Strategic Advocacy Partners, the International Gynecologic Cancer Society.  The aim of this wide ranging study is to identify the challenges and opportunities to improve survival and quality of life for women with ovarian cancer in these settings.  Global incidence is set to increase 40% by 2040, and mortality by 50%, and developing countries will see the greatest increases.  We felt it was vital to gather timely data on women’s experiences, so we can articulate the issues and opportunities at hand and unite local communities behind prioritised action, backed by evidence.

One year later, data collection, which takes place via hospital clinics in our 24 Low- and Middle-Income countries (LMICs) in 31 languages, is underway.  Over 400 responses from our target of 2,000 women have already been recorded, with analysis of our Country Lead Clinician interviews being prepared for journal submissions.  The overwhelming energy and collaborative approach from our partners on the ground show they agree that documenting the experiences of women with ovarian cancer in their country is the first step to improving care.  Whilst we know that a significant number of women never get a diagnosis or sadly they disappear after diagnosis, the demographic factors we are collecting are revealing diverse communities. So far:

• 12.8% travel more than 5 hours to get to the hospital, for 3% it takes more than 24 hours
• For 15.8% of women, they either have no formal education, or were only educated to primary school level
• 25.3% report their household income is below average for their country

It is evident that there are significant gaps in the care provision between lower and higher income settings, but even early on, it is interesting to see how this varies not only country by country but also within countries, especially between rural and urban settings. Levels of health literacy and their role in society also impact sharply on women’s ability to access and afford care. Cruelly, it is already clear that standard of care is out of reach for a significant number of women.  Above and beyond ovarian cancer specifically, we are seeing that there is still an enormous amount of work to be done by the global cancer community to improve health literacy, improve awareness of the importance and value of medical treatment, and ensure women are not disadvantaged.

Beyond these generic themes the call to action in each country will differ, whether it is to improve access to affordable diagnostics, or tackle affordability and accessibility of treatments on the WHO Essential Medicines List, or to ensure sustainability of supply and quality of treatments.  But the foundation for any change will be rooted in better data to support cancer control planning and action in national communities, and for the focus to turn towards what can be done for non-communicable diseases like cancer.  It is our aim that each country will not only have a National Cancer Control Plan, but will have one one that mentions ovarian cancer.

70% of women in the world who have ovarian cancer live in LMIC, therefore tackling the inequities that exist in ovarian and other cancers is an important priority.  We all have a role as a wider cancer community to step up and work on these issues.  The things we learn along the way will also likely impact on care in higher-income countries, as we find out more about the impact of geography, socio-economic factors, and levels of health literacy on patients’ ability to access good quality and affordable care. 

As part of our preliminary work for the study, we are updating the World Ovarian Cancer Coalition Atlas to launch March 2023, documenting the current evidence surrounding incidence, mortality, survival, treatments, risk factors and access to care. What is encouraging to note for this third edition, is the beginning of a new direction in the literature, one that at last is beginning to think more carefully about inequity, and the importance of having localised relevant data to guide planning, treatment and support.

We hope by this time next year, even more groups will be considering these issues, and, of course, data from our own Study, which closes in June 2023, will be beginning to spotlight and focus on exactly where and how those gaps can be closed. 

As this year draws to a close, I reflect on 2022 with much gratitude and look ahead to 2023 with eager anticipation.

My first year as Chair of the World Ovarian Cancer Coalition Board has been filled with many highs, and I am hugely in awe of the outstanding work of the global ovarian cancer community. As Chief Executive of Target Ovarian Cancer, I know how tough these last few years have been, fraught with challenges brought on by the COVID-19 pandemic, and now we face further uncertainty with the cost of living increasing globally against a backdrop of political instability. Because of this I am enormously proud to be part of a global movement that remains committed to improving survival and quality of life for every woman at risk of or living with an ovarian cancer diagnosis.

I am amazed by the work being done in the face of – and in spite of – these challenges, that I am left in no doubt we will indeed change the future of ovarian cancer.

It has been a busy year for the Coalition as well. Our record-breaking World Ovarian Cancer Day campaign in May transitioned into our first-ever Pride Month campaign, where we addressed the particular challenges and risks of the often-overlooked LGBTQ2+ community.

Our strategic partnership with the International Gynecologic Cancer Society (IGCS) continues to bear fruit, as our much anticipated Every Woman Study™: Low- and Middle-Income Edition is now out in the field, with data starting to come in from 24 countries.

It was our profound joy to be able to meet in person as a Board as we gathered for an intensive three-day summit to map out our strategy for the next 5-years. We have some exciting plans in the works, as we sharpen our focus and adjust our mission and vision to reflect our maturing organisation.

Heading into 2023, I renew our pledge to provide global leadership and insight so we can make ovarian cancer a global priority. Supporting our stellar partner organisations will remain a key pillar of our work and empowering them with new pieces of strategic evidence so at local, national, and international levels we can, individually and as a community, advocate for all women no matter where they live.

And by continuing to develop and build collaborations and partnerships, we are confident we WILL get to “No Woman Left Behind.”

On behalf of the Coalition, thank you and we wish you the most peaceful of holidays and a safe and healthy New Year.

Annwen Jones OBE

Chair, World Ovarian Cancer Coalition

Between now and 2040 we will lose over four million women worldwide to ovarian cancer. This is the hard reality of the future of this lethal disease.

Rather, that is unless we take urgent action now.

Current estimates state that each year over 300,000 women globally are diagnosed with ovarian cancer. That figure is set to rise significantly – by almost 50% over the next twenty years to almost half a million.  As it stands right now, well over half will die within five years of their diagnosis making this disease the one of the deadliest of all women’s cancers.

These are shocking statistics, but they don’t really quantify the true tragedy of this loss.  These are not only our mothers, sisters, cousins, and friends, but they are also business owners, athletes, scientists, teachers, doctors, and more. In just 18 years four million women and the vital contributions they make to society will be gone.

Distressingly, we are also increasingly aware that for many women geographic, financial, and social circumstances stand between them and access to best possible care.

In a recent exercise, the World Ovarian Cancer Coalition looked at access to ovarian cancer treatment across thirteen countries, from low- to high-income. This review of availability, accessibility, and affordability covered a core set of standard ovarian cancer treatments. With the exception of PARP inhibitors, the recent, break-through treatment for some women with a genetic mutation or tumour characteristics all of the other treatments included are currently on the WHO’s Essential Medicines List (EML).

Unsurprisingly PARP inhibitors were rarely available to women in lower income countries. Indeed, it was found that even some high-income countries have limited access to this treatment. What was shocking, though, was that women in lower income countries do not even have routine access to the most basic of treatments that have been in use for decades.

However, the review’s most concerning conclusion was that the women least able to afford treatment were the ones most likely to have to pay out-of-pocket. Women in higher-income countries are more likely to have access to state or private coverage, women in low- and middle-income settings are more likely to pay for more than half of the core treatments themselves – even if they are approved for use and available in their country.  It is worth noting that 70% of the woman who are diagnosed with ovarian cancer each year live in lower income countries.

More generally, low global awareness of the disease, on the part of health care professionals as well as women, hampers a more rapid diagnosis – with delays in initial investigations, testing, referrals to specialist surgery and care all standing in the way of potentially better outcomes.

Even where there is awareness, healthcare systems frequently lack the resources and expertise to help women. Many lower income countries also suffer from a pronounced lack of specialist cancer physicians and support services, all hindering women’s chance of receiving the best possible care.

On a positive note, there is actually a lot to feel excited about in relation to new developments in the understanding of ovarian cancer and treating it more effectively. But this will only make a difference if we take meaningful steps today on behalf of the millions of women we stand to lose in the very near future. Our Global Ovarian Cancer Charter sets out the following six key areas that require action.

• Make ovarian cancer a global priority: including examining guidelines on the diagnosis and care for women; investing and better planning at local, national, and international levels.
• Rapid diagnosis: increase awareness among individuals and across healthcare systems so that women have the best chance of being diagnosed without delay.
• Commitment to best possible care: tangible investments in ovarian cancer care including training, hiring, and retaining ovarian cancer healthcare professionals and specialists as well as financial support to those without means to access treatments.
• Data improvement: current ovarian cancer data fluctuates widely and excludes many. It is vital we improve and increase the quality, quantity, and diversity of data on this disease so we can determine and develop evidence-based strategies for those with ovarian cancer so they have the chance at the best possible outcomes – no matter where they live.
• Support and inform: those diagnosed with ovarian cancer must have access to appropriate information and support in their own language and their mental and physical well-being should be considered in equal measure.

Women deserve better. The time for us to act is now to close the care gap. Whoever and wherever you are, please join us  so no woman is left behind.

Clara MacKay
CEO
World Ovarian Cancer Coalition

 

This time of year is special for many of us as it embodies the importance of celebrating what is, reflecting on what was, and looking ahead to what can be.

As I take up my new role as Chair of World Ovarian Cancer Coalition Board, I am especially grateful to be part of this outstanding community of global advocates working tirelessly to improve survival and quality of life for every woman diagnosed with ovarian cancer – wherever she may live.

I am also proud of what this Coalition has achieved in the five short years since our inception. From a humble base of 30 supporting partner organizations at the outset, we now work with almost 200 patient advocacy organizations around the world.

World Ovarian Cancer Day, launched in 2013 and the seed from which the Coalition grew, is now firmly established as the flagship annual global ovarian cancer awareness raising event, having reached well over 18 million people last year alone.

The Every Woman Study™️, launched in 2018, has provided us with enormous insight, backed-up by high quality evidence, about the experiences of women living with a diagnosis of ovarian cancer.  Through this work we have been able to develop a rallying call for action in the form of our Global Ovarian Cancer Charter.

I am also proud of the major strategic partnerships we have developed along the way; including with the International Gynecologic Cancer Society (IGCS), with whom we are partnering on the Every Woman Study™️: Low- and Middle-Income Edition that will be undertaken next year in close to 30 countries. These are big achievements that belong to us all.

As we face the New Year, I am ever mindful that despite our accomplishments, there is still so much more work to be done. Ovarian cancer incidence and mortality are on course to continue to rise, the gap between high- and low-resource settings is ever widening, and although we welcome the most recent advances, there are still many women with extremely limited treatment options.

As Chair, I am committed to ensuring that the Coalition provides global leadership and insight and that no woman with ovarian cancer is left behind.  We will continue to support our outstanding partner organizations so that they can be as impactful as possible within their own settings and will foster and support the development of advocacy organizations where they currently do not exist. Through the Every Woman Study™️: Low- and Middle-Income Edition and our ambitious Ovarian Cancer Futures project to be launched in 2022, we will provide even more strategic evidence to back our call for transformational change in ovarian cancer outcomes and the actions required to achieve this. Most importantly, we will work with collaborators and partners who share our vision and passion and who also believe that ovarian cancer must be recognised as a global priority with a global action plan put in place.

I am hugely indebted to my fellow Board members, including our new Vice-Chairs, Robin Cohen, CEO of the Sandy Rollman Ovarian Cancer Foundation and Jane Hill, CEO of Ovarian Cancer Australia.  Our most recent appointments to the Board, Runcie C.W. Chidebe from Nigeria and Rafe Sadnan Adel from Bangladesh bring to the table a genuinely global perspective and help round out our expanded and diversified Board.

We truly owe a debt of gratitude to our outgoing Chair, Elisabeth Baugh, for her leadership over these past five years. It has been an honour and privilege to have worked alongside her.

On behalf of the World Ovarian Cancer Coalition thank you for everything you do and your unwavering commitment to all those affected by ovarian cancer.  We wish you a prosperous and safe 2022.

Annwen Jones OBE
Chair, World Ovarian Cancer Coalition