Breast cancer accounts for almost 25% of all cancer cases for women and leads to more than 600,000 deaths a year. The number of cases are on the rise globally, with half of the cases and some 58% of deaths occurring in low- to middle-income countries. Early detection can reduce the incidence of late-stage cancer, however, it requires strong health systems, effective national cancer plans, affordable and accessible treatment, adequately provision of information to patients on prevention and diagnosis, and facilitating the navigation of complex hospital systems, which is unfortunately often lacking in low- and middle-income countries. As a result, these countries have high numbers of MBC patients (sometimes more than 50% of breast cancer patients) whose unique needs are often unmet.
This is the primary focus of UICC’s Seeding Progress and Resources for the Cancer Community (SPARC) MBC Challenge initiative, launched in 2015 in partnership with Pfizer. Over 50 organisations from 35 countries have been awarded grants to develop projects in their countries to address these unmet needs, specifically aimed at closing the information and support gap on MBC, developing awareness campaigns and strengthening health systems in their countries.
Through more than 50 SPARC projects around the world, over 14,000 patients have benefitted from support groups, psychosocial interventions and navigation programmes; over 140,000 people have been reached through awareness campaigns and the wider availability of information resources; and some 2’300 professionals have been trained on palliative care, advocacy for MBC and patient navigation.
The third round of grants were awarded at the end of 2019 and in light of the coronavirus pandemic, many grantee organisations had to adapt to the heightened challenges of metastatic breast cancer patients and in delivering their projects. Among the 11 new SPARC grantees in 2019 is Asociación Tour Rosa de Costa Rica with its project “Más Vida” (More Life) who aims to provide MBC patients with enhanced psychosocial and psycho-oncological support, and the Zambian Cancer Society with the "Tisamala" (We Care) radio drama, which aims to raise awareness of breast cancer in the country.
One of Tour Rosa’s primary focus areas is reducing the burden of cancer by raising awareness about the disease, and Costa Rica has made significant progress in reducing the incidence of metastatic breast cancer and raising survival rates, thanks efforts made by the health system to institutionalise early diagnosis and timely treatment.
The organisation also provides comprehensive patient support and recognises that the challenges facing metastatic breast cancer patients – with changes in family dynamics, professional life, social interactions, self-perception and stigma – are even greater than with early-stage diagnosis. The programme launched with the SPARC grant therefore addresses this need for specific psychosocial and psycho-oncological support and aims at creating a “Community of Women” support group with MBC patients and early breast cancer patients together, including access to individual psycho-oncological support for MBC patients.
"One of the women in our programme has an 11-year-old child and both received family therapy to work through not only psychological issues but also practical ones, such who would take care of the child when her mother will no longer able to do so."
- Alexandra Núñez, Founder and Director General, Asociación Tour Rosa de Costa Rica
Alexandra Núñez, Founder and Director General, Asociación Tour Rosa, is herself a cancer patient and explained how a poor understanding of MBC can exacerbate fears and stigma with regard to the illness and patients. “It is important to talk about metastatic breast cancer with early-stage patients so that they can better identify symptoms and have improved survival rates in the event the disease progresses,” she said, hence the creation of a community of women gathering MBC patients together with early-stage patients.
“The driving idea behind ‘Más Vida’ is responding to what patients want, which is fundamentally to live, and therefore enabling them as best we can to live longer, with the highest quality of life, and near to normal as possible.”
- Alexandra Núñez
As a result of the coronavirus pandemic, Tour Rosa has adapted their planned support services to a virtual model. Instead of creating a face-to-face community of patients as was initially planned, they recruited an online community manager who currently animates a virtual community of 150 patients through a Facebook group. Relevant information is posted on this group, and in parallel, a specific cohort of women has been identified to benefit from an online support group: “We organise Zoom sessions for 20-25 women, about half have MBC and the other half are at earlier stages of cancer. They come together virtually every two weeks over a period of six weeks. We will then run another support group with another cohort of women”, says Alexandra.
Each Zoom session has a thematic focus and there are clear rules on how to manage conversations – such as talking in the first-person and validating others rather than passing judgment or giving advice. Sessions cover topics such as treatment, self-care, physical activity, nutrition and COVID-19. Mindfulness and other stress-reducing techniques, as well as music and art therapy, are also offered.
As part of the programme’s aim to offer training, Alexandra and colleague who manage the virtual platforms will host a workshop for the Latin American and Caribbean region to assist other organisations in facilitating conversations on Zoom.
The coronavirus pandemic has also led Tour Rosa to develop additional services that were outside the initial scope of the project, but aligned with the core focus of improving patients’ quality of life. Some patients have been heavily affected economically by the pandemic and Tour Rosa provided help for transportation to hospitals for treatment and food assistance for 200 patients. Tour Rosa’s important support to cancer patients during the COVID crisis has been recognised by the government of Costa Rica.
“While my dream when designing Más Vida was being physically close to patients, seeing all this in-person group support, we have become more connected in other ways because we interact more frequently and at a different level.”
- Alexandra Núñez
The Zambian Cancer Society is also a non-profit organisation providing support to cancer patients and their caregivers. It was established in 2009 by Udie Soko who has herself survived two cancers. Breast cancer in Zambia remains poorly known and even “shrouded in mystery”, with a high incidence of late-stage diagnosis due to lack of information not only among the general public but also among health practitioners. The two-year survival rate among women treated at the country’s Cancer Diseases Hospital remains below 50%.
With the aid of the SPARC grant, the Zambian Cancer Society has created the country’s first radio drama on breast cancer called “Tisamala” (We Care), in order to provide culturally relevant information on MBC and cancer care, as well as raise support for the government’s National Cancer Control Plan. Radio is the most popular and accessible media in Zambia and therefore has the potential to reach a large audience. The series are aired through Radio Christian Voice which has approximately 6.5 million listeners. The series consists of 13 episodes of 25 minutes each and started broadcasting in July on Saturdays, throughout the country. The Zambia Cancer Society also secured a partnership with the Ministry of Health who have endorsed the series.
“Tismala features healthcare workers and MBC patients interacting in a fictious breast cancer clinic. The storyline is intended to be entertaining as well as educative, not only to provide factual information in a compelling and digestible way, but also to dispel the myths and reduce the stigma so often associated with MBC. Furthermore, each episode posts practical information on local health facilities, breast cancer services and the Zambian Cancer Society."
- Udie Soko, Founder and Executive Director, Zambian Cancer Society
The plot involves a new head consultant, Dr Maso, who is determined to improve the image and operations at the clinic. The drama is written and directed by multi-award-winning author Ellen Banda-Aaku and performed by an ensemble cast of some 16 actors.
Caroline Tina Phiri is a veteran screen and stage actress who plays the part of Bana Bwembya or Happy, a retired middle-aged soft-spoken wife and mother who is diagnosed with metastatic breast cancer. Caroline is herself a single mother with three boys who lost her husband to prostate cancer.
"As my late husband’s cancer progressed, he implored me to tell his story directly or indirectly. He said, ‘Use your gift as an actress to raise awareness about cancer. Speak about it, encourage other people to seek medical help early, adhere to treatment and, most importantly, give hope.’ When I read the script of “Timsala”, I cried happy tears as I knew this was the golden opportunity for me to fulfil my promise to my late husband."
- Caroline Tina Phiri, Tisamala actress.
In order to measure the impact of the radio show, the Zambian Cancer Society will conduct a survey led by oncologist Dr Dorothy Lombe and three focus groups of ten people each from different backgrounds. The prerequisite to be part of the group is not to have heard the show when it airs on the radio; rather, as part of the survey, participants will listen to one episode per day for 13 days and will be exposed to before and after questions related to the content of the show.