Dispatch from ABC4: Global Alliance Looks to Solve ‘Wicked Problems’ Together
In November, Janine Guglielmino, MA, our senior director, programs and partnerships, represented LBBC at ABC4, an international consensus conference in Lisbon, Portugal. This event, held every 2 years, brings together healthcare professionals and breast cancer advocates from around the world. The goal: to agree on evidence-based treatment standards for people with metastatic (stage IV) and locally advanced breast cancer.
This is the third in a series of three posts Janine wrote about the conference. (Read the first post here and the second post here.) This week, she and other LBBC staff members are in Texas for the San Antonio Breast Cancer Symposium, along with many other patient advocates and thousands of cancer doctors and researchers. Read LBBC's reports from the conference.
On the final day of ABC4 I attended the first meeting of the ABC Global Alliance, an initiative of the European School of Oncology. The vision for this new alliance, now accepting members, is to improve and extend the lives of women and men living with advanced breast cancer (ABC) in all countries worldwide and to fight for a cure.
The idea for a global alliance grew out of efforts over the last decade in the United States and around the world to elevate the status of people living with metastatic breast cancer. I was heartened when Fatima Cardoso, MD, the force of nature who led both the ABC4 consensus conference and the ABC Global Alliance meeting, referred to Living Beyond Breast Cancer’s 2005 Silent Voices report as one of the earliest and most powerful influences on that movement.
The alliance has an aggressive agenda. It aims to raise global awareness of metastatic breast cancer, add MBC to the global health policy agenda, build the capacity of advocates worldwide and share advocate resources and experiences. Organizers are working closely with the U.S. Metastatic Breast Cancer Alliance, on which the ABC Global Alliance is loosely based. (LBBC is a founding member.)
The hard work begins with the alliance’s Global Charter and its 10 Actions for Change. At the meeting, I worked elbow to elbow with representatives from Mexico, Italy, Uganda, India, Kuwait and more to winnow possible priorities for the next 2 years. We selected four of what our moderator called “wicked problems” – issues that seem insurmountable but that we wish to take practical steps toward solving, together.
Action 1: Double median overall survival for patients with ABC to at least 4 years by 2025
This goal may seem modest: In the developed world, median survival after a recurrent breast cancer diagnosis is estimated to be 2 to 3 years. But we must remember that in developing countries, the median survival is often much, much shorter because of lack of access to standard therapies. In addition to aggressively pursuing research, are there actions we could take immediately to lengthen people’s lives? What can we learn from past social movements that successfully improved access to tests and medicines for other conditions?
Action 2: Improve quality of life for patients with ABC in clinical practice
The ABC Global Alliance wants to identify and share successful, validated tools to help providers measure the physical, emotional and practical impacts of treatment. The challenges in a global setting include personal, geographic and cultural differences, as well as the way these tools are used to approve medicines in each country.
Action 3: Improve availability of robust epidemiology and outcomes data for ABC
In the U.S., we do not collect data on breast cancer that recurs. We only know when people are diagnosed with MBC from the start. (Learn more about this issue and sign a petition here to demand change.) I learned at the meeting that this is true everywhere in the world. Some countries gather very little data and others don’t have resources to collect it properly. Getting more information about patterns of disease would help all of us better describe the worldwide burden of metastatic breast cancer.
Action 4: Increase availability and access to multidisciplinary care, including palliative, supportive and psychosocial assistance
Just as it is in some parts of the United States, in many areas of the world people don’t have cooperative provider teams to help them navigate the complex landscape of metastatic breast cancer. Members of the alliance want to grow access to multidisciplinary care for people in treatment and their caregivers.
Despite all we’ve accomplished since Living Beyond Breast Cancer published its report in 2005, there are still far too many silent voices. The creation of the ABC Global Alliance is another vital step in our worldwide march to amplify them. Through our membership in the U.S Metastatic Breast Cancer Alliance, Living Beyond Breast Cancer looks forward to supporting these efforts in the years to come. I can’t think of a better way of honoring the lives of the women and men we serve – both those who are living, and those we have lost.