Advocate

Priority 1: Increased Funding for ACHD Research

Federal research funding is crucial to finding better treatments and improving quality of life for adults with CHD. We call for continued and expanded federal funding for CHD research, and for additional private funding, including through our ACHA Research program. By increasing research funding, we push for better treatments for ACHD and ensure adult congenital heart disease is a public health priority.

Some ways ACHA works to increase funding for ACHD research:

• Annually asking Congress to fully fund the Congenital Heart Futures Reauthorization Act of 2024 through the U.S. Centers for Disease Control and Prevention (CDC) at the authorization level of $10 million
• Requesting each year that the Senate include CHD as a covered Peer Reviewed Medical Research Program (PRMRP) topic area under the Department of Defense’s (DoD) Congressionally Directed Medical Research Program (CDMRP)
• Asking for continued and expanded funding for CHD research through the National Institutes of Health’s (NIH) National Heart, Lung and Blood Institute (NHLBI)
• Participating in PCORI-funded research initiatives, such as the Congenital Heart Initiative, a patient-powered registry for adults living with CHD
• Fueling research through our ACHA grant program to support high-quality research projects that change the conversation around ACHD

Priority 2: Improving Access to Specialized Care for Adults with CHD

All people with CHD, regardless of background or condition, should have access to the treatment they need near where they live, and to affordable, comprehensive health insurance that ensures they can obtain the specialized ACHD care they require to lead long, healthy, and productive lives. We advocate for policies that grow the qualified ACHD workforce and increase access to evidence-based treatments that improve and lengthen the lives of adults with CHD; and we deliver programs, services, and support that empower our community to ask for and access the lifelong specialized care they need to thrive.

Some ways we improve access to care for adults with CHD:

• Collaborating with federal agencies to ensure the provisions of the Congenital Heart Futures Reauthorization Act of 2024 that require an assessment of the capacity of ACHD health care provider workforce are funded and supported
• Engaging with policymakers on Capitol Hill and in state capitals to expand the eligible ACHD care provider population
• Providing 24/7 access to the only comprehensive Clinic Directory with ACHD board certified cardiologists and ACHA ACHD accredited centers
• Compiling local resources in our ACHD Patient Resource Directory to empower people on the ground

Priority 3: Raising Awareness of ACHD

To tackle complex health problems like CHD, the scope of the issue must be well understood. We educate lawmakers, health care professionals, patients, families, and the public about the number of adults impacted by CHD, the need for lifelong specialized heart care, and the long-term impacts of CHD and its treatments. By furthering awareness, our community ensures more adults stay in or obtain care and strengthens requests for increased CHD research and program funding.

Some ways we grow awareness of ACHD:

• Advocating for high-quality collection of data that describes the number of adults living with CHD
• Gathering in 15+ communities across the country for the Walk for 1 in 100 to educate and empower the general public and all those impacted by ACHD
• Empower our Patient & Family Advisory Board and other volunteer leaders to request Proclamations for Congenital Heart Defect Awareness Week and Congenital Heart Defect Awareness Day (February 14)

Priority 4: Ensuring the Patient’s Voice Is Represented

Nothing about us, without us. We raise the voices and lived experiences of adults with congenital heart disease to ensure policies, research, treatment, and support offerings address the key concerns of those coping with the condition. Our members nurture relationships with legislative champions who push for patient representation at the tables where decisions are made. Elevating the patient voice ensures the needs of our community are heard and builds toward success in clinical research and the adoption of laws and policies that influence outcomes.

Some ways we ensure the patient’s voice is represented:

• Developing and maintaining relationships with legislative champions
• Cultivating passionate advocates year-round through our Patient & Family Advisory Board
• Elevating the voices of adults with CHD through our educational programming and HeartTalk Blog

Explore the legislation and policies ACHA currently supports.

Getting Involved in ACHD Advocacy

People define advocacy in many ways, but the concept is quite simple: Advocacy is any action you take that supports a cause or an issue that impacts an individual, a group, or a system. At ACHA, we welcome all forms of advocacy. We value your unique gifts and interests, as our collective efforts will translate into improved treatments and outcomes for all adults with CHD.

Advocacy can be focused on individuals—such as advocating for yourself or someone you love to get the best ACHD care possible—or affect larger groups, such as communities or organizations. To reach larger groups, you may choose to engage in social media/media advocacy, reaching the public by sharing your story on social channels or with traditional news media. Or you may want to get involved in legislative advocacy, sharing your story with lawmakers and encouraging them to support CHD research and other policies that further the needs of all people living with ACHD.

Here are a few ways you can become an advocate with ACHA:

• Join ACHA’s mailing list to learn more about your CHD and ensure you’re getting the best care for yourself or others (Individual)
• Get trained as a Peer Mentor so you can provide peer emotional support to other adults with CHD through our Heart to Heart Peer Support Program (Individual)
• Apply to our Patient & Family Advisory Board to engage with local civic groups and employers, and hold local activities, including an ACHA event, in your community (Community, Organizational)
• Advise researchers or reviewers on clinical trials or research grants that affect adults with ACHD (Research)
• Talk to your local, state, or federal agencies or health insurer about policies that affect ACHD care (Policy)
• Contact your elected officials about supporting legislation and funding that improves outcomes for adults with CHD (Legislative)

To get ongoing updates about ACHA’s advocacy and volunteer activities, make sure to join ACHA and state your interest in advocating lawmakers to support CHD legislation. We’ll email you to let you know what we’re working on, and we want to hear from you, too, when you see an opportunity where we can make a difference, together.

Learn about different types of advocacy.

Tips to Advocate for People with CHD

1. Know the facts. You don’t need to know everything, but it’s important to be familiar with some of the most common questions you may be asked, like what a CHD is, the number of people living with CHDs, and the long-term health impacts. Read about some of the key statistics you can use in our FAQs.
2. Tailor your message. While key messages remain consistent, what you communicate will vary with your audience. Consider who you’re speaking to and what they need to know. For example, an elected official might want to know how many people in their state or district have a CHD, whereas a business owner might want to understand how protecting the health of their employees with CHD could save them money.
3. Share your story. People become more invested when they understand how CHD affects them or someone they love. Whether you have a CHD yourself, provide care to people with CHDs, or are a parent, spouse, sibling, family member, or friend, help others understand how your experience informs your sense of urgency. Learn how to share your story.
4. Keep it tight. You don’t have to share your life story; in fact, you may get only 30 seconds to grab someone’s attention! Consider what you would say if you only had the length of an elevator ride to get your point across. You’ll want to deliver a message, briefly connect it to yourself and support it with facts, and end with an ask. Here’s one example of how an “Elevator Pitch” could look.
5. Include an ask. Once your audience understands the importance of ACHD, they’ll be more likely to help. Be specific about what action you want them to take: “Please sign this petition requesting more funding for ACHD research,” or “Please give a $30 donation to my Walk for 1 in 100 team so ACHA can continue its important work.” Don’t forget to leave behind a website URL, QR code, or phone number to get them to the right place.

Final Tip: Let ACHA know how it went. Notify us so we can follow up with resources, information, and support, and help you continue your vital work.