Cancer control experiences and perspectives vary across regions, with specificities in terms of epidemiology of cancer and level of resources for access to cancer services, as well as civil society representation and actions. These disparities and the need for tailored solutions have only heightened with the COVID-19 pandemic.
As part of its objective to increase regional engagement, UICC therefore initiated last April a regional series of Virtual Dialogues to look at the specific challenges faced by its members and develop best practices adapted to their own settings in the six UICC regions (Africa, Asia-Pacific, Eastern Mediterranean, Europe, Latin America, North America) on specific themes.
The first Virtual Dialogue in the series took place on 15th April for the Latin America region. The event was conducted in Spanish and Brazilian Portuguese, with translation services available for both.
UICC Board Members Kenji López Cuevas and Ana Cristina Pinho Mendes Pereira chaired the meeting, while a panel of representatives from UICC member organisations from various countries, representing different areas of cancer care, presented examples from their own work of the use of legal mechanisms to promote cancer control.
“The biggest post-pandemic challenge is the legacy of cancer patients who didn’t have the possibility of early diagnosis or treatment. The cooperation amongst different entities demanding better quality and access is essential, especially in low- and middle-income economies. We must think big to look for new strategies.”
– Ana Cristina Pinho Mendes Pereira, Director General of INCA Brasil
Key points raised in the discussion focused on the complexity of health systems and the large disparities that exist between populations in accessing health services in many countries. Panellists agreed that civil society organisations (CSOs) had a critical role to play to ensure that everybody enjoyed the right to health, that advocacy was essential to ensuring that adequate cancer care was available to everyone and that the patients had to be placed at the centre of the decision-making process.
The importance of integrating the government and legislators in finding solutions was also highlighted. For instance in Chile, the Fundación Foro Nacional de Cáncer (National Cancer Forum Foundation) was instrumental in designing a national Cancer Law that brought together private and public stakeholders.
Indeed, the effectiveness of multi-stakeholder, multisectoral partnerships was one of the key takeaways of the session. In Costa Rica, The Foro Permanente de Cáncer en Mujeres (Permanent Forum on Cancer in Women) was established by the University of Public Health, with 13 NGOs and public health institutions working on women’s cancers.
A toolkit on the use of normative mechanisms to advance cancer control at the city level, created by City Cancer Challenge (C/Can), one of UICC’s sister organisations, was mentioned for its potential relevance for the Latin America community.
The meeting for the Eastern Mediterranean region was convened on 29th April. Hana Chaar Choueib, General Manager of the Children Cancer Centre of Lebanon (CCCL), welcomed participants and the four other panellists called for leveraging innovative strategies to reach financial targets. UICC Immediate Past-President, HRH Princess Dina Mired of Jordan, then gave introductory remarks on the important role CSOs can and must play, through the pandemic and beyond, to address gaps in health systems and ensure that cancer remains a top health priority.
Panellists emphasised unity and collaboration as essential to strengthening advocacy efforts and advancing cancer control, as well as the need to place prevention and early detection at the top of the political agenda. Carol El-Jabari, CEO of Patient’s Friends Society of Jerusalem, shared the voice of people living with cancer, highlighting the peer-to-peer work developed by the "reach to recovery" model as a means to provide all-important psychosocial support to patients.
As examples of collaborative work, Dr Sawsan Al Mahdi of Friends of Cancer Patients (FoCP) highlighted the establishment of the Ameera Fund to provide support to other CSOs in the region, while Dr Nisreen Qatamish, CEO and Director General of the King Hussein Cancer Foundation, spoke about a successful regional collaboration on breast cancer that started five years ago.
The fourth panellist, Dr Maihan Abdullah, Head of the National Cancer Control Programme Afghanistan presented the Afghan model, where the health sector is mainly run by NGOs, and highlighted the different roles that CSOs play in high- and low-income countries.
“We are still in a desperate situation in Afghanistan due to 40 years of war and political instability. Despite the efforts of the Ministry of Health and several CSOs, we still don’t have radiotherapy in the whole country.”
– Dr Maihan Abdullah, Head of the National Cancer Control Programme from Afghanistan
Participants, for their part, spoke of the pressing need to make resources available and accessible in the region in terms of gathering and using data. They also agreed that there was a clear need to participate in WHO calls for action on cervical cancer elimination and other global strategies.
The Africa region gathered on 18th May for a discussion, available in English and French, that focused on women’s cancer, including the implementation of WHO Global Strategy for the elimination of cervical cancer.
HE Dr Zainab Shinkafi-Bagudu, First Lady of Kebbi State in Nigeria as well as UICC Board Member and Founder and CEO of Medicaid Cancer Foundation, along with Dr Julie Torode, UICC's former Special Projects Director, led the discussions with a panel comprising representatives of four member organisations in Burkina Faso, Ivory Coast, Malawi and Sierra Leone. UICC Board Member Dr Miriam Mutebi, Consultant Breast Surgical Oncologist, at the Aga Khan University Hospital in Kenya closed the Virtual Dialogue with a summary of key takewaways.
“It is totally unacceptable that 22 countries in Sub-Saharan Africa don’t have a single radiation machine. The world is moving towards genomics medicine, and yet in Africa, there is no palliation. We have to find a way of sorting this out.”
– Abubakar Bello, President of AORTIC, Virtual Dialogue participant
Dr Torode encouraged participants to focus advocacy efforts on three priority areas – equity, integration, and quality of care – and pointed out the efficiency of scalable models of care, including through integrated or inter-professional approaches, in working towards cervical cancer elimination.
Prof. Navi Zongo of the Coalition Burkinabè Contre le Cancer (COBUCAN) highlighted the work initiated on women’s cancer in Burkina Faso and showcased how a CSO coalition can leverage the strengths of its members to adopt integrated approaches in breast and cervical cancer that facilitate communication and information sharing between health professionals.
Professor Innocent Adoubi highlighted recent interventions by the National Cancer Control Programme in the Ivory Coast to screen and treat cervical cancer with the support of technical partners, particularly through the SUCCESS project.
Maud Mwakasungula, CEO, Women Coalition Against Cancer (WOCACA) in Malawi, presented an example of successfully integrating cervical cancer screening with organisations working on HIV and AIDS in Malawi, which increased both the quality of care and the cost-effectiveness of the interventions.
Cremelda Parkinson Pratt of the Thinking Pink Breast Cancer Foundation in Sierre Leone said that partnering with community leaders and using local languages is the way forward, but that only through awareness and education will women gain access to cancer services.
Two key topics were addressed in the open discussion with participants: the need to improve prevention and awareness, as these two interventions are at the heart of the role of CSOs in cancer prevention and control; and the structural lack of funding for cancer organisations in the region.
UICC President-elect and CEO of Prostate Cancer Foundation of Australia, Prof. Jeff Dunn AO, welcomed participants at the Virtual Dialogue for the Asia-Pacific region on 25th May and touched upon the significance of Universal Health Coverage (UHC) for the cancer community and the specificities of the Asia-Pacific region with respect to its size, diversity and many different approaches to healthcare.
The panel consisted of top-level representatives from UICC-Japan and the Asia Cancer Forum, the Indonesian Cancer Information and Support Center Association, the New Zealand Cancer Control Agency Te Aho o Te Kahu, the Papua New Guinea Cancer Foundation and the University of Malaya.
“Often, we equate Universal Health Coverage with how much money goes into healthcare; it’s far more nuanced than that, it’s not just the money which makes UHC possible. Money is important, but it is also the ability of the healthcare leadership to ensure that equity is maintained.”
– Dr CS Pramesh, UICC Board Member, Director of Tata Memorial Hospital and Convener National Cancer Grid of India
Much of the focus of the panel and the ensuing discussion with participants was on equitable access to care for indigenous populations and how to break down stigma and barriers to effective prevention and early detection by developing a culturally sensitive way to deliver healthcare. This is particularly relevant for women’s cancers and for people living in remote areas. It was noted that the indigenous people of New Zealand were twice as much at risk of getting cancer and dying of it than the general population.
Several examples of progress were cited. In Indonesia, UHC should soon cover 80% of the population. UICC-Japan has established interdisciplinary university programmes to support cross-boundary cancer studies. Program ROSE in Malaysia has fostered collaboration between academia and NGOs to make cervical cancer secondary prevention more acceptable and accessible to women, with a noticeable uptake in HPV screening.
In their opening remarks for the North America Virtual Dialogue on 1st June, UICC Board Members Danielle Rodin of the Princess Margaret Center in Toronto and Eric Bouffet of the University of Toronto, drew attention to the growing number of global health initiatives and partnerships that are providing excellent opportunities to learn from best practices and establish connections within the international community.
The panellists represented different segments of UICC members in North America, including cancer societies, patient groups, government agencies, academic institutions, hospitals and research institutes. They highlighted the importance of peer-to-peer support and drew on their organisations’ experiences to provide examples of innovative collaboration and patient support as well as adaptions in providing education and training in light of the pandemic.
With a view to ensure the sustainability of global health initiatives, cancer organisations developed various initiatives ensuring long-lasting impact. The Center for Global Health at the National Cancer Institute initiated grant programmes on institutional capacity building and research at the country level in low-resourced settings. The Max Foundation, has partnered with local patient groups around the world to provide treatment for 30,000 patients worldwide, mainly among vulnerable populations. And the American Society for Clinical Pathology (ASCP) was able to continue to provide quality management training to African pathologists by expanding its virtual education model, and scaled up the organisation’s African partnership model by using local resources.
The COVID-19 and Cancer Global Modelling Consortium (CCGMC) is a recent initiative by the Canadian Partnership Against Cancer (CPAC) and other key partners that unites the global modelling community to provide informed advice to governments in both high-income countries and low- and middle-income countries (LMICs) faced with considerable health systems challenges.
In the group discussion, the World Bladder Cancer Coalition shared the activities of the Global Cancer Coalition Network, an initiative that conducted surveys with their members, primarily patient groups, to help identify priorities for coalition leaders.
“Patient organisations represent the voice of the patient with their governments. There is a lot that we can say to promote global cancer control but nothing like the voice of the patient to ask for what is needed.”
– Pat Garcia-Gonzalez, CEO, The Max Foundation
UICC Board Member Gilberto Lopes concluded the session with key takeaways that included the need to address the gaps in research in LMICs and adapt to the diverse countries, the central role of patients’ voices, how modelling contributes to shaping policies and more cost-effective pathways for treatment.
The cancer community in Europe has seen recent advances in cancer control with the adoption of regional strategies such as the WHO/Europe United Action Against Cancer and the European Beating Cancer Plan.
These promising initiatives underscore the need to mobilise the power of patients’ voices in calling for action, address the lack of screening and tackle disparities in health care. These issues were at the forefront of discussions at the Virtual Dialogue organised for UICC members in the Europe region on 29th June.
After opening remarks by UICC Board Member Ulrika Kågström of the Swedish Cancer Society and Johan van de Gronden from the Dutch Cancer Society, a UICC partner, panellists shared concrete actions taken to restore – and provide more equitable access to – essential cancer services as well as develop and implement key strategies.
"While covid 19 has had devastating consequences in so many ways, the creation of the global consortium and the willingness to share and collaborate will sustain well beyond the pandemic era.”
– Natalie Fitzgerald, Director, Performance, Canadian Partnership Against Cancer
The European Cancer Patients Coalition (ECPC), Europe’s largest cancer patients association. collaborated with its members to ensure timely access diagnosis for patients. Furthermore, a joint letter on COVID-19 and Cancer was signed by 320 organisations and sent to governments across Europe asking for patients’ voices to be taken into account in health policies.
The Kazakh Institute of Oncology and Radiology noted significant progress in cancer control in the country following the 2019 World Cancer Leaders’ Summit: increased budget, three new cancer hospitals and a number of new programmes including one for palliative care. Furthermore, during the pandemic, mobile mammography units were set up to carry out screening in rural areas.
Borka – for Each New Day, a UICC member in North Macedonia, shared the challenges faced by Eastern European countries in terms of higher mortality rates and overcoming health inequalities. Their experience as a UICC Country Champion within the Cancer Advocates programme has shown the value of training patient advocates and the positive impact when engaging decision-makers.