Change the world. Advocate for more awareness and support for ACHD

If you are living with ACHD, it’s important to be an active advocate for greater awareness and support for ACHD funding, surveillance, programs and policies.

You can advocate in your own area or at the Federal level. We need to make sure our voices are heard and our messages have impact. Our community is over two and a half million strong today, and growing.

Raising awareness of ACHD is a critical goal. Despite its high prevalence and high costs, many people, including those making policy and funding decisions know very little about CHD and its impact. Here are some key facts:

  • Every 15 minutes a child is born in the United States with a heart defect or structural abnormality
  • CHD affects one in every 100 births, over 40,000 babies every year
  • CHD is a leading cause of infant death, but
  • Advances in diagnosis and treatment are increasing life expectancy and improving quality of life for many people with CHD
  • CHD requires lifelong care from qualified specialists
  • In the United States, hospitalization costs for people with CHDs is $1.4 billion dollars a year.

Our primary advocacy goals and activities are:

  1. Increase CHD Awareness: The primary goal of ACHA’s advocacy program is to support the organization’s mission: to improve and extend the lives of the millions born with heart defects. Increasing CHD awareness among affected individuals, their families and policymakers is key to advancing this mission. This will not only make it likelier that affected individuals stay in care, but will also facilitate our advocacy as it will be easier to justify requesting large funding levels for CHD programs and research.
  2. Develop More Champions: While we are lucky to have strong champions in Senator Durbin and Representatives Bilirakis and Schiff, we need a deeper bench of bipartisan supporters. ACHA must identify and cultivate more legislative champions in Congress and ultimately, in state legislatures (ideally members of the majority party who serve on relevant committees).
  3. Coverage and Access to Care: ACHA will support policies to ensure all people with CHD to have affordable, comprehensive insurance that provides coverage of and access to the specialized, expert ACHD care that they need to lead healthy, productive lives.
  4. Data Collection and Surveillance: All adults with CHD must have access to appropriate high-quality and specialized care at an ACHD centers (accredited center or in coordination with one). This will require the promotion of ACHA’s accreditation program with public and private payers.
  5. Engaging Grassroots: ACHA will cultivate passionate advocates across the country, who engage in advocacy throughout the year, not just during the legislative conference. We will create a culture of advocacy to build this capacity.
  6. ACHA Research: ACHA’s goal is to create its own research program to supplement federal research programs. ACHA will also support research at appropriate federal agencies.
  7. Goals and Activities of the Advocacy Committee: The ACHA Advocacy Committee will serve as a strategic, decision-making committee to support the work of ACHA staff and advocacy consultants.
  8. Exploring State Advocacy: ACHA will develop robust state-level advocacy efforts as well as a federal effort, but the committee wants to prioritize federal advocacy for now.

Help achieve these goals:

  • Urge your congressman/woman to cosponsor the Congenital Heart Futures Reauthorization Act
  • Urge your congressman/woman to join the Congenital Heart Caucus in the House
  • Urge your congressman/woman to support the congenital heart disease appropriation requests for CDC and NIH
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