Home / Get Involved / Advocate

Advocate

Demand more awareness, research, and support for adults with congenital heart disease. Change the world. Advocate.

As the only U.S. nonprofit organization focusing exclusively on ACHD, the Adult Congenital Heart Association is the nation’s leader in calling for greater awareness, more research, and better support for adults with CHD. Whether you have a congenital heart defect yourself or you love or care for someone who does, you can contribute to ACHA’s vision of a world where every adult with CHD receives lifelong specialized care.

Sharing your story—with elected officials, community leaders, health care providers, and others—can open hearts and minds to the urgent need for more resources dedicated to CHD. On this page, learn about our shared priorities, ACHA’s achievements, and the tools you can use to advocate in your community.

ACHA’s Legislative and Policy Priorities

ACHA advocates for legislation and policies that impact the care, treatment, and quality of life of the community of adults living with congenital heart disease. We prioritize legislation and policies that broadly impact those we serve. Currently, we motivate our members around these four priorities:

  • Increasing funding for CHD research to meet the lifelong needs of CHD patients
  • Improving access to specialized ACHD care
  • Raising awareness of ACHD
  • Ensuring people with ACHD have a voice in all aspects of their care
Sponsorship support provided by:

 

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:

  • Advocating for reauthorization of the Congenital Heart Futures Act, and annually asking Congress to fully fund the U.S. Centers for Disease Control and Prevention (CDC) CHD research and surveillance programs 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 our members; 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:

  • Advocating that the federal government assess the capacity of the ACHD health care provider workforce and take actions to address it
  • 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
  • Delivering the Live Like a Champion media campaign, which aims to link adults to specialized ACHD care available at ACHA ACHD accredited centers
  • 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

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.

ACHA’s Past Advocacy Wins

With more than 25 years of experience representing the patient community, ACHA is the nation’s leader in calling for greater awareness, more research, and better support for adults with CHD. We have a strong history of successful advocacy campaigns throughout our history. Here is a timeline of ACHA’s key thought leadership and advocacy successes:

1998

  • ACHA incorporated

2002

  • ACHA adopts medical institutional neutrality, forms a medical advisory board, and publicly recommends specialized care for all adults with CHD

2004

  • The National Heart, Lung, and Blood Institute (NHLBI) invites ACHA to join its first Working Group on research needs in adult congenital cardiac disease

2005

  • American College of Cardiology (ACC) asks ACHA to participate in its first section on Congenital and Pediatric Cardiology

2006

  • ACHA holds its first Lobby Day on Capitol Hill with nearly 80 patients, families, and medical professionals

2007

  • National Congenital Heart Coalition formed by ACHA, Children’s Heart Foundation and Congenital Heart Information Network
  • Second Lobby Day brings 80 ACHA community members to Washington, DC

2008

  • ACHA organizes its first summer in-district visits, with 50+ advocates educating lawmakers in home communities about CHD
  • National Congenital Heart Coalition expanded to 7 groups when ACHA recruits Little Hearts, It’s My Heart, The Mended Little Hearts, Inc. and Saving Little Hearts

2009

  • Senators Dick Durbin (D-IL) and Thad Cochran (R-MS), along with Representatives Gus Bilirakis (R-FL) and Zachary Space (D-OH), introduce the Congenital Heart Futures Act during the 111th Congress
  • ACHA invites members of the National Congenital Heart Coalition to first National Congenital Heart Lobby Day to push for the introduction of the Congenital Heart Futures Act
  • ACHA advises the Social Security Administration on recommended changes to disability guidelines for CHD

2010

  • The Congenital Heart Futures Act becomes law as a provision of the Patient Protection and Affordable Care Act
  • Leading the National Congenital Heart Coalition, ACHA and 100 patients, families and providers request funding for CHD research and surveillance programs at the Centers for Disease Control and Prevention (CDC) established under Congenital Heart Futures Act
  • ACHA supports REACH grant, which directs $1 million in NIH funding to develop and implement an ACHD-specific tool to grow cross-institution data-sharing
  • ACHA is invited to serve as founding member of the Congenital Heart Public Health Consortium

2011

  • With Children’s Heart Foundation and The Mended Little Hearts, Inc., ACHA holds National Congenital Heart Lobby Day to request additional funding for CHD research and surveillance programs established under the Congenital Heart Futures Act
  • U.S. Congress mandates $2 million be directed to funding public health activities in the Congenital Heart Futures Act

2012

  • Nearly 2,000 patients share information about their CHD for REACH grant, growing understanding of ACHD

2013

  • ACHA’s National Congenital Heart Advocacy Day draws more than 110 advocates to request additional funding for programs established under the Congenital Heart Futures Act

2014

  • Advocates from ACHA visit 70+ legislative offices during annual Advocacy Day, educating congressional staff and urging additional funding for ACHD

2015

  • Largest ACHA Lobby Day effort to date, drawing 115 patients, families, and providers from nearly 20 states

2016

  • 150+ advocates attend ACHA Advocacy Day, preparing for reauthorization efforts around the Congenital Heart Futures Act set to begin the following year

2017

  • ACHA publicly launches first national ACHD Accreditation Program to elevate standards of care nationwide
  • ACHA meets with congressional representatives to support the introduction and passage of the Congenital Heart Futures Reauthorization Act of 2017, requesting an authorization increase to $10 million annually for CHD surveillance and research programs and language supporting an awareness campaign for people with CHD throughout the lifespan

2018

  • The Congenital Heart Futures Reauthorization Act of 2017 is passed by Congress and signed into law, with ACHA’s request – Increasing the authorizing level of CHD research and surveillance programs at the CDC to $10 million annually – included
  • Launch of ACHA’s Research Program, supporting efforts to cultivate a new generation of ACHD experts

2020

  • ACHA holds virtual in-district visits with Children’s Heart Foundation and The Mended Little Hearts, Inc., conducting 35+ meetings with legislators
  • Grassroots ACHA advocates send more than 800 emails to legislators in support of the adult CHD community’s priorities

2021

  • With the U.S. Centers for Disease Control, ACHA hosts a congressional briefing on the state of ACHD research and care, reaching more than 2,000 people

2022

  • Advocates from ACHA and The Mended Little Hearts, Inc. join together for a Virtual Advocacy Day, requesting congressional support for the Newborn Screening Saves Lives Reauthorization Act of 2021 to standardize and collect data from newborn screenings that easily identify previously undetected complex CHDs, the Cardiovascular Advances in Research and Opportunities Legacy (CAROL) Act, establishing a National Heart, Lung, and Blood Institute-led grant program for research on valvular defects, the most common CHD, and ensuring continued and expanded federal funding for CHD research and surveillance
  • The CAROL Act is passed by Congress and signed into law

2023

  • ACHA leads efforts to align with CHD community organizations – Children’s Heart Foundation, Conquering CHD, and The Mended Little Hearts, Inc. – and champions on Capitol Hill on upcoming Congenital Heart Futures Reauthorization efforts, including provisions to address the healthcare provider workforce shortage impacting the adult CHD patient community

2024

  • The Congenital Heart Futures Reauthorization Act of 2024 (H.R. 7189/S. 3757) is introduced in the House and Senate. The Senate measure includes ACHA’s proposed language advocating for a federal interagency workshop to assess the ACHD workforce capacity in the United States of health care providers who treat adult patients living with CHD
  • ACHA continues to educate congressional staff and legislators on the ACHD community's workforce shortages and encourages passage of the Congenital Heart Futures Reauthorization Act of 2024 with the proposed workshop language.

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 to support legislation like the Congenital Heart Futures Reauthorization Act of 2024 (H.R. 7189/S. 3757) that improves awareness of ACHD (Legislative)

To get ongoing updates about ACHA’s advocacy and volunteer activities, make sure to register for our Action Alerts. 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.

In This Section

How to Tell Your Story

How to Share Your Story

People become more invested when they understand how CHD affects you or someone they love. Whether you have a CHD yourself, provide care to people with CHDs, or are a parent...

FAQs About ACHD and Advocacy

Frequently Asked Questions

On this page, learn about some of the most frequently asked questions we receive at the Adult Congenital Heart Association about ACHD and advocacy. Link to helpful resources for...

Take Action Today on CHFRA

Take Action Today on CHFRA

Support the Congenital Heart Futures Reauthorization Act of 2024! Now that the Congenital Heart Futures Reauthorization Act of 2024 (CHFRA) has passed unanimously in the House...

Congenital Heart Futures Reauthorization Act of 2024

Congenital Heart Futures Reauthorization Act of 2024

In 2024, ACHA’s top legislative priority is advocating for passage of the Congenital Heart Futures Reauthorization Act of 2024 (H.R. 7189/S. 3757). This legislation, also known...

ACHA Supported Legislation and Policies

ACHA Supported Legislation and Policies

Below are current legislation and policies ACHA supports in the areas of our four key priorities of increasing funding for research, improving access to care, growing awareness...

Contact Congress Today

Demand better research, surveillance, and awareness of ACHD by calling on Congress to act now on the Congenital Heart Futures Reauthorization Act of 2024. Contact your elected officials today.