Moving to Center Stage: Making MBC a Strategic Priority
PATIENT PERSPECTIVE

Metastatic breast cancer issues were under-addressed for years but have taken on a new strategic importance at Europa Donna, Europe’s breast cancer advocacy organization.
 

Europa Donna has been advocating for the rights of breast cancer patients since 1994. The organization now has member groups in 47 countries across Europe. Putting breast-cancer treatment issues on policymakers’ agendas, both at European Union institutions in Brussels and in member countries’ national governments, is a priority. Europa Donna’s many successes include getting support for the July 2015 passage of the European Parliament Written Declaration On the Fight Against Breast Cancer in the EU, in which a majority of parliamentarians call for a suite of specific steps to fight breast cancer across the continent. "A key focus of our organization is to advocate on behalf of women with breast cancer, to provide them with the best practices and services possible," says Europa Donna Executive Director Susan Knox.

That’s why it was so surprising to Ms. Knox, who has survived two diagnoses of breast cancer herself, to learn at an international breast cancer meeting in 2009 that MBC issues were going largely unaddressed in most of Europa Donna’s member countries. The European Guidelines for quality assurance in breast cancer screening and diagnosis, for which the group had advocated, did include MBC-specific issues, but feedback from Europa Donna members showed that MBC patients’ needs were still largely unknown and unmet. Women with MBC were often not being treated in specialist breast units, for instance. "We discovered that very few women with MBC were participating in our programs," recalls Ms. Knox, noting that fewer treatment options in 2009 also meant many MBC patients may not have been well enough to get actively involved. "That was our wakeup call that this was an important area for advocacy, that Europa Donna needed to reach out to women with MBC to understand their needs and issues in order to advocate for improved services," says Ms. Knox.

To that end, Ms. Knox made addressing MBC patients’ needs a priority for all of Europa Donna’s educational initiatives and included it in Europa Donna’s 2012 strategic plan. At the group’s conference that year, representatives from every member country were invited to bring an MBC patient advocate: 17 did, ensuring that MBC issues were articulated and incorporated into Europa Donna’s agenda. There have been other successes. One of the four action items in the 2015 European Parliament Declaration focuses on MBC, calling for European member states to ensure that MBC patients in particular have access to specialist breast units that coordinate their medical and psychosocial care. And Ms. Knox believes that up to 10% more MBC patients are attending Europa Donna training courses. "There are a larger number of women with MBC who are now getting actively engaged in advocating for services in their country," as a result of both improved treatment options and Europa Donna’s focus on the disease, she says.

Still, there is more to do. At Europa Donna’s upcoming September conference in Milan, national representatives will again be invited to bring MBC patient advocates. There, the group plans to help MBC patient advocates develop national advocacy plans for MBC by providing them with tools to effect policy change as well as training on setting up a blog and utilizing social media. "Many  women with MBC don’t want to leave their homes but would welcome a means of connecting and communicating with other women experiencing the same challenges," notes Ms. Knox. A second agenda item involves a survey on access to treatment and diagnostics for both early-stage breast cancer and MBC patients in Europa Donna’s countries. "We know that there are major gaps, but you can’t lobby for generalities," says Ms. Knox. "You have to know exactly what the situation is, and since it differs so radically from country to country, this survey will give us the information we need to effect more change."