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When it comes to caring for patients with metastatic (stage IV) breast cancer, or breast cancer that has spread to other parts of the body, many have needs that extend well beyond the hospital treatment room. The Seeding Progress and Resources for the Cancer Community: Metastatic Breast Cancer Challenge (SPARC), an initiative launched by the Union for International Cancer Control (UICC) in partnership with Pfizer Oncology, has awarded grants to 20 organizations in 18 countries around the globe who are addressing unmet needs for this patient community. Read on to learn more about how some of the grant recipients are working to make a difference in the lives of metastatic breast cancer patients around the world.
A Support Group for Rural Women with Breast Cancer
In 2012, Rwanda’s Butaro Cancer Center for Excellence (BCCOE) became a model across East Africa for being the first cancer treatment center to open in a rural region. Four years prior, the area did not even have a hospital. In the time since its opening, BCCOE has enrolled some 5,000 patients, offering advanced treatment and diagnostic services such as chemotherapy, surgery, and pathology.
As BCCOE continued to grow, its leadership identified a critical missing piece. Many of its patients, rural women with metastatic breast cancer, could benefit from a peer support group to help cope with the mental, emotional, and socioeconomic challenges of the disease.
“Often some of the best sources of support for patients are those that have ‘walked the walk’ and gone through similar challenges,” said Jeff Marvin, Media Relations Manager for Partners In Health, a global nonprofit, which in partnership with the Rwandan Ministry of Health established the hospital. “Having peer-to-peer support is important with any chronic disease because these patients are vulnerable to anxiety and depression. Support needs to be multifaceted and beyond the hospital walls.”
In April, after receiving a SPARC grant, BCCOE was able to launch its first support group for 15 rural women with breast cancer, many of whom are battling metastatic disease. An unfortunate reality in the developing world is that breast cancer often is diagnosed six times later than in advanced countries that offer widespread access to routine mammograms.1
Across all cultures, an initial challenge to set up an effective support group is training staff or “navigators” to lead the sessions. In BCCOE’s case, its medical staff and social workers often hail from other regions or socioeconomic classes and needed training in facilitating a group for the rural patient population in need.
A key component of the support group’s success was developing a curriculum to train the navigators to build an environment of confidentiality and trust so group participants could open up to express their challenges and feelings. The nuanced, unique curriculum has helped nurses and social workers communicate in a way that allows participants to share their experiences.
Another key component has been educating local patients about breast cancer and its treatment. Prior to the opening of the BCCOE, many people in the region had little awareness of breast cancer and, if they understood that they had the disease, they had no accessible options for treatment. Helping patients understand what the disease is and where it comes from—that it’s not related to infection, and that it’s treatable—has been a critical part of that education.
Across central East Africa, Rwanda has become a “poster child” for rapid health care development. As the burden of communicable diseases such as HIV and tuberculosis are successfully addressed, the next frontier is to combat non-communicable disease such as cardiovascular disease, diabetes, and cancer. Cancer, in particular, presents the greatest challenge because it requires a sophisticated medical infrastructure at the community level. Yet full clinical care at every level is critical for patients’ health and quality of life.
Creating an Online Community for Metastatic Patients in Mexico
In recent years, breast cancer rates have been rising in Mexico,2 and the public health community is scrambling to address and treat the disease.3 Since 2002, the nonprofit Cim*ab Foundation, founded by two breast cancer survivors, has been working throughout Mexico to raise awareness of the disease and support patients and their families. With the help of a SPARC grant, the foundation recently launched an online resource and community for people with metastatic breast cancer in Mexico and other Spanish-speaking countries. “We saw these patients have been neglected for so long. No one talks about it,” said Bertha Aguilar, who co-founded the foundation with Alejandra de Cima.
The online site TantoPorHacer.org (“So Much to Do”) includes community forums, online lectures with experts, and emotional support for metastatic patients and their families. “We created a website so they can have their own voice, for them to have more access to quality treatments, and talk with experts. We want to help give them a better quality of life and get their needs met.”
Training Nurses to Educate Metastatic Breast Cancer Patients
In Bulgaria, the Association of Cancer Patients(APOZ), has worked for the past 11 years to improve treatment access and education for breast cancer patients. Thanks to a SPARC grant, the organization has recently launched the ABC Patient Academy to train nurses and oncologists to better educate metastatic breast cancer patients about their disease and their role in managing it. “There’s a lack of time on the part of the medical profession to explain and involve patients in the treatment process. And more so for metastatic breast cancer patients where the situation is much graver,” said Teodora Kolarova of APOZ.
Launched in 10 oncology hospitals in Bulgaria’s capital city Sofia, the program is training nurses to work with metastatic patients from day one of their treatment journey. “We want to bridge the gap in communication and understanding of the disease,” said Kolarova. In the future, they hope this pilot program will become the standard of care for all breast cancer patients in Bulgaria.
As the program continues, APOZ founders have seen how investing in the emotional needs of metastatic breast cancer patients can have an overall impact on their wellbeing and adherence to treatment. “More and more of our patients feel like they matter because of receiving personalized care without having to feel vulnerable,” said Evgenyia Aleksandrova, the founder of APOZ.4