While CCF has made great strides in increasing awareness of pediatric cardiomyopathy in the public arena and medical field, there is still much to be done to improve the lives of children with cardiomyopathy.
In order to improve health outcomes and stop preventable deaths, broader public initiatives are needed to increase research, public education, and access to specialized care and preventive measures. Advocacy plays an important role in ensuring that federal spending is appropriate for pediatric cardiomyopathy and that public policies reflect the needs of those living with cardiomyopathy.
What is Advocacy?
Advocacy is defined as “the act of pleading in favor of a cause or issue that can benefit a particular group of people.” An advocate’s role is to let policymakers know what they, as citizens and constituents, think is important to support. Despite its simple definition, advocacy is multifaceted and the types of advocacy activities are varied and diverse. The good news is that health policy advocacy doesn't require special skills; it just involves telling your story with passion and focus.
Why does Advocacy Matter?
Members of Congress are most responsive to people from their own states and communities. Their job, as an elected official, is to listen to and respond to their constituents’ priorities and concerns. Cardiomyopathy is a rare disease and many policymakers have little to no knowledge of the disease; most have never met anyone affected by the disease. Policymakers can only start to understand the seriousness of the condition and become aware of unaddressed areas once they hear from those in their community affected by the disease. As more people speak out about their concerns, policymakers are more prone to take action and implement changes. A collective voice can inspire action to affect public policy and improve the lives of those with cardiomyopathy.
Ways to Get Involved in Advocacy
Input from those most affected by cardiomyopathy is the most effective way to win Congressional champions to our cause. Therefore, it is critical that patients, families, friends, relatives and health care providers – weigh in with their elected representatives in Congress. There are various ways to get involved in advocacy depending on your time and resources constraints. This can include generating awareness in your community with media coverage, writing a letter or email to a Congressional member, calling their office, or scheduling a meeting in their home district/state or in Washington D.C. Whatever your level of involvement, no effort is too small. You can start taking action today and contact your elected representatives.