What Is Advocacy?
When receiving a metastatic breast cancer (MBC) diagnosis, the natural first action is research. Knowledge is power, and it is normal to want to learn as much as possible.
Today, hundreds of resources exist at the end of an internet search. There is a wealth of information, along with many places to connect with others affected by MBC. Today, the MBC resources that exist are the result of past advocacy efforts. Those diagnosed with MBC even 10 years ago found few resources to guide them. They worked to expand information access for future MBC warriors.
What it means
So, what exactly is advocacy? A basic definition is acting to support a cause or proposal. There are 3 forms of advocacy seen with MBC1-4:
Self-advocacy means knowing and telling others your needs. Self-advocacy is asking your doctor questions, petitioning your insurance for treatment coverage, or making lifestyle changes to support your health.
Individual advocacy focuses efforts on 1 or 2 people. Patient advocates, such as oncology social workers, are good examples. They help you navigate the healthcare system following diagnosis.
Systems advocacy works to impact change on a broader scale. It changes laws or policies at the local or national level. The creation of Metastatic Breast Cancer Awareness Day (October 13) is the result of systems advocacy.
Knowing where to start your advocacy journey can be tricky. A few key things to prioritize when deciding how to be involved include5:
Self-care. You are the top-most factor. Sometimes your health, treatments, or energy require saying no to systems advocacy. That is okay! Advocacy is fluid.
What do you enjoy? Find advocacy efforts that fit your personality. Sharing your story is one option. You may prefer staying private, working behind the scenes.
Keep learning! Stay updated on research and developments for MBC. Being informed helps you ask good questions. It allows you to weigh the pros and cons of suggested treatments. You learn about clinical trials and options for managing the disease.
Why is it important?
You may ask, "Why do my voice and involvement matter?" Breast cancer research is very prominent. However, that awareness does not extend to metastatic breast cancer. Only 2 to 5 percent of the money raised for breast cancer research is devoted to MBC research. MBC affects 6 to 10 percent of those diagnosed with breast cancer. Around 30 percent of those diagnosed with breast cancer will experience metastasis. Advocacy efforts personalize MBC and show more than numbers.6
Living with MBC feels discouraging. Joining advocacy efforts provides a focus beyond disease management. Finding ways to impact the lives of others gives a sense of purpose. Use your creativity to donate proceeds of a fundraiser to research. Send a gift of comfort to someone newly diagnosed. Lobby government officials for research and funding. The options are endless. Each person makes a difference.
Advocacy connects you with others touched by MBC. Social media platforms help you begin. You can engage based on your comfort level, whether in public groups or private ones. Follow other advocates or physicians to learn and stay up to date on MBC. Expand your network. There are many opportunities for engaging in advocacy efforts.
Do you have a caregiver or are you a caregiver?