Virtual Advocacy Day 2022: Together, We Make A Difference

On May 4, patients living with all types of heart disease, parents of children with congenital heart disease (CHD), caregivers, healthcare professionals and other supporters will gather for Virtual Advocacy Day 2022, hosted by the Adult Congenital Heart Association (ACHA) and The Mended Hearts, Inc. These advocates will join together to urge federal lawmakers to support legislation that will provide funding for heart disease research and innovation.

As this publication goes to press, there are nearly 180 meetings scheduled, with approximately 140 districts across 30 states represented. Advocates will talk to law- makers about continued funding for heart disease and CHD through three initiatives:

• Passage of the Newborn Screening Saves Lives Reauthorization Act to help ensure standardized reporting of pulse ox screening to ensure all critical CHD patients receive timely diagnosis and treatment

• Support for legislation to address the lifelong needs of CHD patients, ensuring there is an adequate workforce
to meet the demands of the growing population of adult CHD survivors through the Congenital Heart Care for Life Act

• Passage of the Cardiovascular Advances in Research and Opportunities Legacy (CAROL) Act to establish new programs and inter-agency coordination to study valvular disease

The Newborn Screening Saves Lives Reauthorization Act of 2021 (H.R. 482/S. 350)

Approximately one baby in every 110 is born with a congenital heart defect (CHD), and 25% of babies with CHD will have a critical congenital heart defect (CCHD). To ensure prompt diagnosis, babies must be screened at birth so those affected can receive immediate care.

Screening is easy. Pulse oximetry (also called pulse ox) is a simple and painless test that measures the level of oxygen
in the blood. There are types of CCHD that cause lower-than-usual blood oxygen levels, and this can be picked up by pulse oximetry — even before a baby becomes sick.

In 2011, Critical Congenital Heart Disease (CCHD) screening was added to the U.S. Recommended Uniform Screening Panel by then HHS Secretary Kathleen Sebelius. Since then, all 50 states have passed laws or established newborn screening programs, making CCHD screening the standard of care in the U.S.

While this is a great first step, there’s still much work to be done. Because many states do not require hospitals to report screening to state health departments, there is a lack of information on actual screening practices by hospitals within a state. Additionally, there is no national collection or analysis of CCHD screening data, and data collection procedures differ among states. With no federal funding available to support state CCHD screening activities, these limitations will continue.

The Newborn Screening Saves Lives Reauthorization Act (H.R. 482/S. 350) would specifically address the standardization and national collection of CCHD screening through the following key provisions:

• Standardize data collection and report- ing using electronic health records to achieve real-time data for tracking and monitoring the newborn screening system

• Promote data sharing linkages between state newborn screening programs and birth defects surveillance programs
to help families connect with services to assist in evaluating long-term outcomes

This critical bipartisan legislation will ensure the federal government continues to support state newborn screening programs in its efforts to save or improve the lives of more than 12,000 infants every year, including infants born with CCHD.

Time is of the essence, as authorization for federal newborn screening activities expired on September 30, 2019. In June 2021, the House of Representatives passed H.R. 482. However, the Senate must act to ensure that these critical programs continue and necessary improvements are enacted.

The Congenital Heart Care for Life Act of 2022

Congenital heart disease (CHD) is the most prevalent birth defect in the U.S. Although 69% of babies born with critical CHDs
are expected to survive to 18 years of age, CHD patients face a lifelong increased risk of permanent disability, premature death and high rates of comorbidities throughout adulthood.

Estimates suggest there are approximately 2 million adults with congenital heart disease in the U.S., with a projected growth rate of 5% per year. Adult CHD patients (ACHD) require specialized care and are at an increased risk for heart failure and hospitalization.

Yet, the current ACHD provider workforce cannot meet the demand for care. In fact, there are only an estimated 250 fellowship training ACHD cardiologists and just over 450 ACHD board-certified physicians to care for 2.5 million ACHD patients. It has been estimated that at least 150 large regional centers would be required to provide adequate care for this population, but there are only 84 centers, according to estimates.

These significant deficits in the number of providers with specialized training, existing training programs and regional care centers create barriers to care for ACHD patients.

With the vast majority of ACHD patients being out-of-care and susceptible to costly health care episodes, this makes the situation even more critical. To help address the ACHD provider shortage and promote healthy outcomes, Congress can make strategic federal investments to help attract new specialized providers into the field of ACHD and provide funding for additional training programs.

The Congenital Heart Care for Life Act would address the adult congenital heart disease workforce shortage by:

• Establishing a grant program for hospitals, medical schools, academic training programs, public entities and nonprofits to plan, develop and operate an adult congenital heart disease fellowship training program

• Establishing a grant program for public and nonprofit entities to provide continuing education and training to general cardiology health care professionals on identifying, referring and treating individuals with adult congenital heart disease.

The Cardiovascular Advances in Research and Opportunities Legacy (CAROL) Act (H.R. 1193/S. 1133)

While much of the Virtual Advocacy Day 2022 will focus on CHD and ACHD, these aren’t the only types of heart disease. Valvular heart disease also needs further research, treatment and support, as it impacts even more people.

In fact, an estimated 2.5% of the
U.S. population, or more than 8 million people, live with valvular heart disease, which occurs when any of the four valves in the heart is damaged or diseased, preventing the normal flow of blood.

These numbers increase significantly with age. An estimated 13% of people born before 1943 have valvular heart disease.

Unfortunately, nearly 25,000 people die in the U.S. each year due to valvular heart disease, with approximately 15% of these deaths resulting from complications with the mitral valve.

Because of the prevalence and serious- ness of valvular heart disease, legislation has been introduced that will establish new programs and inter-agency coordination to study valvular disease.

The Cardiovascular Advances in Research and Opportunities Legacy (CAROL) Act will:
• Establish a grant program administered by the National Heart, Lung and Blood Institute (NHLBI) to support research on valvular heart disease

• Encourage the use of technological imaging and precision medicine to generate data on individuals with valvular heart disease

• Convene a workshop of experts to identify research needs and opportunities to develop prescriptive guidelines for treatment of patients with mitral valve prolapse (MVP)

• Instruct Centers for Disease Control (CDC) to increase public awareness regarding symptoms of valvular heart disease and effective strategies for preventing sudden death

Advocate and Take Action

The Mended Hearts, Inc.’s main policy objective is for patients and caregivers to have a powerful voice when it comes to making health care decisions for them- selves and/or their loved ones. That’s why we support advocacy initiatives that promote patient-centered care.

For these advocacy efforts to be successful, we need you!

Expanding on our continuous efforts to empower patient and family voices, Mended Hearts®, Young Mended HeartsTM & Mended Little Hearts® have created The Mended Hearts, Inc. ACTION NETWORKTM — a community of patients and caregivers dedicated to championing patients, families and researchers.

By joining the MHI ACTION NET- WORK, you receive information on our latest advocacy work, along with action alerts for opportunities to raise your voice for the heart patient community.

To join, as well as stay up to date on all of our advocacy initiatives, visit