Introducing IGCS Advocacy Committee

With the addition of Globe-athon to End Women’s Cancers into the International Gynecologic Cancer Society (IGCS), we are pleased to announce that the IGCS has assembled an Advocacy Committee. The committee’s goal is to advance gynecologic cancer awareness in alignment with the IGCS mission by guiding, supporting, and overseeing the International Gynecologic Cancer Advocacy Network (IGCAN), as well as other advocacy initiatives, programs, and events.

The committee recently held their first call and will begin to guide the work within the three pillars and areas that support IGCAN:

  • Patient Education and Awareness
  • Advocacy Research and Science
  • Collaboration and Network Building

The programs and initiatives include:

  • Annual Survivor-Caregiver Advocacy Summit
  • Patient Perspectives Roundtable Series
  • Advocacy and Research Program
  • Uterine Cancer Survivorship Program
  • Cervical Cancer Survivorship Program
  • World Ovarian Cancer Coalition’s Every Woman Study™ Low- and Middle-income Edition
  • Formation of the International Gynecologic Cancer Advocacy Network

Advocacy Committee Members

Committee Chair: Daniela Luvero, MD (Italy)
Gynecologic Oncologist, University Campus Bio Medico of Rome

Committee Vice Chair: Rosalind Glasspool, MD (UK)
Medical Oncologist, NHS Greater Glasgow and Clyde and University of Glasgow

Mukhtasar Alkali (Nigeria)
Coordinator II at Medicaid Cancer Foundation Monitoring & Evaluation Officer on the Kebbi State Cervical Cancer Secondary Prevention Pilot Program

Adrienne Moore (USA)
Research Coordinator, University of Washington, Seattle
Respiratory Therapist
Patient Adviser & Ambassador, Endometrial Cancer Action Network African Americans (ECANA),  Endometrial Cancer Survivor

Geetu Bhandoria, MD (India)
Gynecologic Oncologist & Obstetrician, Indian Armed Forces

Nefa-Tari Moore (USA)
Outreach & Uterine Cancer Coordinator, SHARE Cancer Support
Two-time Uterine Cancer Survivor & Ovarian Cancer Survivor

Nicoletta Cerana (Italy)
President, ACTO - Alliance Against Ovarian Cancer

Maggie Nicholas-Alexander (USA)
Senior Director of Gynecologic Cancer Patient Support and Education, SHARE Cancer Support

Michele Collins (USA)
Board Member, Kaleidoscope of Hope Ovarian Cancer Foundation
Ovarian Cancer Survivor

Angélica Nogueira-Rodrigues, MD, PhD (Brazil)
Oncologist
Founder, Brazilian Group of Gynecology Oncology, EVA Group
Director, Brazilian Society of Medical Oncology
Researcher and Professor at Federal University, MG Brazil

Diane Crawford (USA)
Founder and Executive Director, The Crawford Crew
Cervical Cancer Survivor

Sandra Rosati (Italy)
President, Un Lago di Donne per la Prevenzione Oncologica
Cancer Survivor

Noriko Fujiwara, MS, RN, CRN-BC, OCNS, CCRP (Japan)
Research Nurse & Oncology Nurse, IMSUT Hospital of the Institute of Medical Science,
The University of Tokyo, Japan

Abhishek Shankar, MD (India)
Radiation Oncologist
Secretary, Indian Society of Clinical Oncology
Assistant Professor, Department of Preventive Oncology, AIIMS, New Delhi

Milicent Kagonga (Kenya)
Founder, Symbol of Hope Warriors
HPV Vaccine Ambassador
Cervical Cancer Survivor

Eva-Maria Strömsholm, MS, RN (Finland)
Co-Founder & Vice Chair, Gynecological Cancer Patients in Finland
Practical Nurse, Rare Ovarian Cancer Survivor

The committee members are breaking into workgroups to tackle each project including a network building group to brainstorm best strategies to build our noncompetitive network. The main goal is to link gynecologic cancer advocacy organizations and individual patient advocates—from every region, income, and resource setting—and create the opportunity for them to collaborate in achieving best outcomes for all gynecologic and breast cancer patients. Information regarding how to officially join the network is forthcoming.

We look forward to sharing more updates and information with you regarding our advocacy programs and how to officially join the IGCAN. There are a lot of exciting programs in development. Stay tuned!

World Ovarian Cancer Day

The Every Woman Study

The Every Woman StudyTM Low-and Middle-Income Edition
A joint initiative of the World Ovarian Cancer Coalition (Coalition) and the International Gynecologic Cancer Society (IGCS).

In 2018, the Coalition conducted the Every Woman StudyTM, the largest ever survey of women living with the disease. Over 1500 women from 44 countries responded, and the results have been presented at a number of international scientific meetings and published in the International Journal of Gynecological Cancer. This first survey mainly captured data from high-income countries.
The 2018 Study led to the development of the Global Ovarian Cancer Charter, outlining opportunities to make progress through the Charter’s six Global Goals.

To bridge the data gap from the first Study, the Coalition is partnering with IGCS to organize a ground-breaking low- and middle-income edition of the Every Woman Study™️. IGCS has been involved in this effort for the past year with IGCS CEO Mary Eiken (USA) and IGCS Member, Tracey Adams (South Africa) serving on the oversight committee. IGCS’ regional Strategic Alliance Partner groups and contacts from our Global Curriculum training sites have been receptive to our requests to help distribute the study to their patients.

With active interest from 31 countries, national leads, local leaders, administrators, and advocates will work on the ground to ensure optimal participation from women in their countries, resulting in an unprecedented data set that will help shape and guide local, regional, and national advocacy efforts in the hopes of reaching the Coalition’s goal of no woman being left behind.

Our hope is that the LMIC edition of the study will bring new insights and increase global collaboration to improve survival and quality of life for those affected by ovarian cancer.
The Every Woman Study™ Low and Middle-Income Edition is currently being translated into over 40 languages and undergoing ethics reviews. Data collection is expected to be conducted throughout the year with analysis beginning in 2023.

Patient Roundtable

Join us May 5th for the IGCS Virtual Patient Perspectives Roundtable: Overcoming Barriers to Genetic Testing in Ovarian Cancer. Speakers and panelists will bring their expertise and perspectives on genetic testing for ovarian cancer and discuss ways to we can advocate to overcome barriers, concerns, and challenges in this area.

With World Ovarian Cancer Day (May 8th) falling on the same day that many countries celebrate Mother’s Day this year, what a special occasion and event to bring the patient advocacy community together to talk openly about this important issue.

Overcoming Barriers to Genetic Testing in Ovarian Cancer

Thursday, May 5, 2022
7:00 am ET (New York)
Duration: 45 minutes
See all time zones.

Registration is FREE, but required.

Get Involved

Participating in the 10th World Ovarian Cancer Day couldn’t be easier!

It can be as simple as a social media post, encouraging others to learn and share information about ovarian cancer. Maybe you want to have a Teal event with friends or colleagues? Get everyone to have some fun with teal outfits and accessories – and, of course, post it for more awareness. Create your own signs, posters, etc., with the WOCC’s downloadable graphics, and then add your personal touch. By taking part in World Ovarian Cancer Day, you can help change the future of this disease by increasing awareness of symptoms and the need for more research. Together, we can reach our goal of #NoWomanLeftBehind

Download the #WOCD2022 Get Involved Guide on ways you can engage with this year’s campaign.

Patient Perspectives Roundtable

About the IGCS Patient Perspectives Roundtable Series
During the COVID-19 pandemic and in its aftermath, IGCS will continue to be a global source of education and resources, training, public awareness, and advocacy. Virtual Roundtables will

  • facilitate first-hand assessment of patient community needs and concerns
  • provide vetted information, assessments, and guidance from key opinion leaders and seasoned survivors/advocates
  • address current patient and wider community concerns through live responses to question posted online during the session
  • promote strategic conversations with health care and research communities around specific issues
  • assist all in coming to workable solutions and strategies for moving forward during the COVID-19 pandemic and in its aftermath

Each 30- to 90-minute session will cover a specific topic important to the gynecologic cancer patient communities maneuvering through the health and cancer care system during and after COVID-19 and will include IGCS key opinion leaders, patients-caregivers, and other stakeholders appropriate to the topic.

Previous Roundtables

Overcoming Barriers to Genetic Testing in Ovarian Cancer
Recorded on May 5, 2022

Committing to Global Health Equity: More than a Statement
Recorded on December 16, 2021
Sponsored by GSK

Focus on Survivorship/Quality of Life and Patient-Reported Outcomes
Recorded on Friday, August 6, 2021
Sponsored by GSK

Spotlight on Endometrial Cancer: Breakthroughs & Concerns
Recorded on May 14, 2021
Sponsored by GSK

Navigating Telehealth/Telemedicine & Embracing Shared Decision Making
Recorded November 21, 2020
Sponsored by GSK

Patient Advocacy & Support in the Backdrop of COVID-19
Recorded June 30, 2020

Gynecologic Cancer Patient Care & Clinical Trials in the Midst of COVID-19
Recorded May 23, 2020
Sponsored by GOG Foundation

Conquering Cancer Virtual Film Screening

The International Gynecologic Cancer Advocacy Network is thrilled to host a virtual screening of the documentary film, Conquering Cancer on Friday March 4th at 12:30pm UTC. After the film, viewers will participate in a live Q&A panel with IGCS President, Dr. Robert Coleman and our special guest panelists championing the global push to eliminate cervical cancer.

Event Details

Friday, March 4, 2022

6:30 am UTC -6 (Chicago)
12:30 pm UTC +0 (London)
8:30 pm UTC +8 (Beijing)
See more time zones.

Film Duration: 70 minutes
Live Q&A: approx. 15-20 minutes
Total duration: approx. 90 minutes

This virtual screening will be held live. 
A recording will not be available after the event.

If you unable to attend our screening, visit conqueringcancercampaign.com to find another screening or host your own screening.

Tickets: $5 USD

Access Codes: We have a number of access codes to join the event at no cost reserved for cancer survivor-patients, members of the IGCS and International Gynecologic Cancer Advocacy Network and individuals residing in low- and middle-income countries.

Please enquire for access code availability by emailing debbie.leopold@igcs.org.

About the film, Conquering Cancer

Conquering Cancer is a feature documentary with a soaring ambition: to accelerate the elimination of cervical cancer for every woman and girl. The film brings to life stories of women who have survived cervical cancer and showcases testimonials from health care professionals who work on eliminating cervical cancer through vaccination against the human papillomavirus (HPV), screening and treatment.

Since its release, Conquering Cancer has won several awards and been shown in theatres, at professional events and to support outreach programs and has international distribution, notably on Amazon Prime, and educational distribution with Kanopy Streaming.

The burden of cervical cancer in low- and middle-income countries (LMICs)
LMICs carry a wildly disproportionate burden of cervical cancer, accounting for up to 90% of all cases and a high percentage of related deaths. This is due to lack of vaccination against HPV that causes some 70% of all cervical cancers, high-performance screening programs to detect precancerous lesions and adequate treatment. Indeed, cervical cancer posts an average five-year survival rate of 90% when detected and treated early as is generally the case in high-income regions.

According to the World Health Organization’s Global Strategy, financing elimination is affordable, at an average cost of USD 0.40 per person per year in low-income settings and USD 0.20 in lower-middle-income countries.

Panelists

Dr. Daniela Luvero
Italy

Dr. Luvero is a gynecologist at University Hospital Campus Bio Medico of Rome, in Italy. She received a PhD in oncology at the same University in 2021. She worked as Clinical fellow at UCLH in London in the Department of Oncology for 1 year and she has a strong interest in research and has been involved in several international trials as coinvestigator, authored/co-authored many peer reviewed publications.

Dr. Luvero is active in the global gynecological oncology community, and she is currently the European Representative for the IGCS Council and in 2022 she became the Chief of the Advocacy Committee for the International Gynecologic Cancer Advocacy Network.

Dr. René Pareja
Colombia

Dr. Pareja is a Gynecologist Oncologist at Astorga Oncology Clinic in Medellín and the National Cancer Institute in Bogotá, Colombia

He is an Associate Editor of the International Journal Gynecological Cancer and a reviewer for more than 20 specialty journals, authoring 9 book chapters and more than 70 publications in peer-reviewed journals.
He is currently a member of the board of directors of the International Gynecological Cancer Society and FIGO Gynaecological Cancer Committee

In 2021, he was honored with the IGCS Award for Community Advancement in Resource-Limited Settings in recognition for his outreach throughout Latin America and beyond. René has been an amazing teacher for fellows in Colombia and served as an International Mentor for the IGCS Global Curriculum and Mentorship Program in Guatemala. He also helps established doctors and trainees throughout Latin America often serving as a catalyst for collaborative efforts to increase access to education and training in the region. 

Dr. Ida Ismail-Pratt
Singapore

Special interest: Education and training, screening and prevention of HPV related diseases and colposcopy. She is currently an OBGYN specialist and medical director for The Obstetrics & Gynaecology Centre in Singapore.

Dr. Ida championed the introduction of HPV DNA test in Singapore and co-chair the Singapore national cervical screening program implementation committee introducing HPV primary screening into Singapore in May 2019.

She is the Vice President of the Society of Colposcopy & Cervical Pathology Singapore (SCCPS). She has been actively promoting public education and awareness in Singapore through various societies in Singapore such as Singapore Cancer Society and Alliance Against HPV (A4HPV) particular for the young generations.

Internationally, she co-led the development of the IGCS Global cervical preinvasive disease training program. She is also is part of the education committee for the International Papillomavirus Society (IPVS) and led the IPVS ECHO committee program. She is also the secretary and founding member of the Asia Pacific HPV Coalition, a selected group of experts in the APAC region working together focusing on cervical cancer elimination in the Asia Pacific through research, education and awareness.

Dr. Kathleen Schmeler
USA

Dr. Kathleen Schmeler is a Professor of Gynecologic Oncology at The University of Texas MD Anderson Cancer Center. She is also the Executive Director of Global Oncology for the MD Anderson Cancer Network. Her research interest is in cervical cancer prevention and treatment, particularly for resource-constrained countries and medically underserved communities in the US. She is the Past-Chair of the IGCS Training & Mentoring Committee.

Prof. Dr. Woo Yin Ling
Malaysia

Professor Dr. Woo Yin Ling is a Consultant Gynaecological Oncologist at University Malaya Medical Centre, and a professor at the Department of Obstetrics and Gynaecology, Faculty of Medicine at the University of Malaya.

She received her medical degree from Trinity College, Dublin, and her PhD from the University of Cambridge, England. She is also the recipient of multiple international awards in recognition for her professional achievements. In 2021, she received the FIGO award in recognition her contribution to women’s health.

Dr. Woo’s areas of is in the management of gynaecological malignancies, particularly cervical cancer. Dr. Woo is currently the country representative (Malaysia) for the Asia-Oceania Research Organisation in Genital Infection and Neoplasia (AOGIN), taskforce member for the Malaysian policy change to Primary HPV screening for cervical cancer, member of the Asia Pacific Economic Consortium (APEC) Cervical Cancer working group and is the founding trustee for ROSE Foundation.

Moderated by IGCS President, Dr. Robert L. Coleman (USA)

Dr. Coleman completed his Obstetrics & Gynecology residency at Northwestern University Medical Center in Chicago, Illinois, and completed his fellowship at The University of Texas MD Anderson Cancer Center in 1993. Prior to joining the M.D. Anderson faculty in 2004, he served as Vice-Chairman, Department of Obstetrics and Gynecology at the University of Texas, Southwestern Medical Center in Dallas. At M.D. Anderson, Dr. Coleman was a Professor and served as the Executive Director for Cancer Network Research, holding the Ann Rife Cox Chair in Gynecology. In March 2020, he joined US Oncology Research as their Chief Scientific Officer.

Dr. Coleman has authored or coauthored over 700 scientific publications, including over 400 peer-reviewed articles, along with numerous book chapters, monographs, invited articles, and textbooks. In 2019, he received the 2019 APGO-CREOG award for Excellence in Teaching. He is a co-Director for GOG-Partners and serves on the Board of Directors for GOG-Foundation, Inc. He currently serves as President of the International Gynecologic Cancer Society (IGCS) and was recently inducted into MJH Life Sciences™ 2020 class of “Giants in Cancer Care®.”

Cervical Cancer Awareness

Cervical Cancer Awareness Month

Throughout January, IGCS will mark Cervical Cancer Awareness Month (CCAM) by highlighting the global burden of cervical cancer and what IGCS is doing to help eliminate this burden. We have also developed a social media toolkit so you too can play a part in driving awareness about cervical cancer this month.

IGCS supports the WHO Cervical Cancer Elimination Initiative to reduce the incidence of and mortality from cervical cancer by:

Social Media

Download and share these cervical cancer facts as far and wide as you can. Click each image to open, then save to your device or download them all from dropbox here

Informative Talks

Innovative Technologies for Cervical Cancer Prevention and Treatment
Kathleen Schmeler, MD

Dr. Schmeler discusses best practices for cervical cancer screening and treatment, including options for and solutions in middle- and low-resource settings.

ConCerv: A prospective trial of conservative surgery for low-risk, early-stage cervical cancer
Kathleen Schmeler, MD

Dr. Schmeler presents the findings of the ConCerv Clinical Trial, a study conducted from 2010-2019 to prospectively evaluate the feasibility of conservative surgery in women with early-stage, low-risk cervical cancer.

Advances in Cervical Cancer Therapeutics

2021 was an impactful year for cervix cancer therapeutics. IGCS President, Robert Coleman provided this overview for OncLive near the end of 2021 and here are the highlights:

The phase III EMPOWER trial demonstrated the clinically meaningful superiority of single-agent immunotherapy (cemiplimab) over standard single agent, physician’s choice chemotherapy in previously-treated metastatic/recurrent cervical cancer. The results were robust demonstrating superiority in PFS, OS and objective response and in multiple histologies. A regulatory decision this is expected this month. Learn more.

At the European Society for Medical Oncology (ESMO) Congress 2021, the positive results of KEYNOTE-826: pembrolizumab plus chemotherapy ± bevacizumab versus placebo plus chemotherapy ± bevacizumab for previously untreated persistent, recurrent, or metastatic cervical cancer were announced. The study showed that the addition of immunotherapy to our best frontline standard of platinum/paclitaxel/bevacizumab provided a clinically meaningful improvement in PFS and OS in all-comers as well as in PD-L1 positive tumors. FDA approved the 4 drug regimen in record time in October for treatment-naïve PD-L1 expressing tumors. Learn more.

Also, recently, tisotumab vedotin, an antibody drug conjugate targeting tissue factor was approved as second-line therapy for metastatic cervical cancer based on impressive objective and durable responses in patients whose tumors progressed after frontline chemotherapy. Finally, there were some hints of the expanded efficacy of tisotumab vedotin in combination with chemotherapy and in combination with immunotherapy as well as increased efficacy of dual immune checkpoint inhibitor therapy. Collectively, these findings provide real promise for future advances. Learn more.

IGCS and Globe-athon Join Forces

Dear IGCS Members and Friends,

The International Gynecologic Cancer Society (IGCS) and Globe-athon to End Women’s Cancers are taking their existing partnership to the next level.

In 2018, Globe-athon International, Inc., established a formal partnership with the IGCS to consolidate and unify their network of physicians and advocates focused on gynecologic cancers worldwide. The leadership of Globe-athon approached the IGCS with a proposal to further unify the efforts of both organizations by blending and integrating our programs. And, Dr. George Larry Maxwell, the founder of Globe-athon, has dissolved the 501(c)3 non-profit organization, and we are folding its branding, followers, teams, and programming successes into the IGCS for continued strategic development under the leadership of Dicey Scroggins (IGCS Director of Global Outreach & Engagement), Mary Eiken (IGCS Chief Executive Officer), and the elected officials of IGCS.

In 2012, Dr. Maxwell founded Globe-athon which has represented an unprecedented grassroots effort to expand public outreach and advocacy associated with gynecologic cancers on an international scale. It started as a call- to-action and quickly became a movement that spread to have a global following and presence. Globe-athon’s message was broadcast from the International Space Station, and in 2015, a flash mob took over the National Mall in Washington, DC, in a heartwarming and exuberant display for the cause. These are only a couple of examples of the movement and efforts of the thousands of people involved in Globe-athon events.

“Globe-athon is a movement dedicated to building connections with leaders on every continent to help get women talking about women’s cancers. By uniting doctors, religious leaders, politicians, patients, and survivors in our mission, we have an opportunity to generate widespread awareness that can help save lives,” summarized Dr. Maxwell.

“The mission of Globe-athon of increasing awareness of women’s cancers, addressing disparities, and transcending barriers - ’ethnic, racial, political, geographic, financial, cultural, and religious’ - aligns perfectly with that of the IGCS,” said Dicey Scroggins. She continues that this enhanced connection is consistent with the principles of the IGCS; the purpose of the International Gynecologic Cancer Advocacy Network we are developing; and, of course, our Global Health Equity stance.

“This is a great opportunity to bring together the strengths of both organisations in the fight against women’s cancers and to build on the work that has already been done by so many dedicated people. Together we can be stronger, reach further, and continue to break down barriers to give women everywhere a voice,” said Dr. Ros Glasspool, an advocacy liaison on the IGCS Council.

The first IGCS + Globe-athon advocacy event will take place during the 2022 IGCS Annual Global Meeting in New York, and we will keep you informed of ways to continue to support the movement and respond to its call-to-action.

Thank you for your continued support of the IGCS and Globe-athon as we work toward our common mission to enhance the care of women with gynecologic cancers worldwide through education and training and public awareness.

Sincerely,

Robert Coleman, MD
IGCS President

Mary Eiken, MS
IGCS CEO

Patient Advocate Travel Fund GOG

Mary “Dicey” Scroggins is a 24-year ovarian cancer survivor and health activist who has made a significant impact to transforming the standard of care in gynecologic oncology by being the voice to patients.

For many years Dicey attended The GOG Board of Directors as an ex officio member representing the patient voice and guiding the GOG to better serve their patients. Most recently she served in a similar capacity of advocacy for URM for IGCS. The GOG will be forever grateful for the incredible impact Dicey for her service, engagement and cancer survivor perspective as the Chair of the Legacy GOG Patient Advocacy Committee.

To honor and continue Dicey’s legacy, the GOG is thrilled to announce the Mary “Dicey” Scroggins Travel Fund that will offer travel reimbursement for up to two patient advocates to attend the NRG Oncology 2022 Semiannual February Meeting and the GOG Foundation, Inc. meeting.

Application Deadline is November 15, 2021