Beyond wearing red — we need to focus more on heart health

February is American Heart Health month and a time to remind people to prioritize their health. Doing things such as, eating healthier, making physical activity part of their daily lives, increasing awareness regarding heart disease and building healthier communities are all steps they can take.

Certainly, as rates of obesity and diabetes rise in children and sedentary lifestyles become more commonplace, poor cardiovascular health is increasingly becoming a problem of the young.

{mosads}But as a pediatric and fetal cardiologist, many of the children that I care for have congenital heart disease and are born with a structurally abnormal heart. It’s time we talk more about their hearts, too.

As we also acknowledged Congenital Heart Disease (CHD) week February, it is not only an opportunity to raise awareness, but a time to reflect on what heart health looks like for these infants and what health care policy changes must occur in order for ensure long and healthy lives for them.

CHD is the most common type of birth defect, occurring in 1 percent of all births or about 40,000 babies each year in the United States.

Survival has improved dramatically over the last 50 years so that 75 percent of infants with the most severe forms and 95 percent of infants with less severe forms of heart disease are expected to survive to 18 years of age.

More than 2.4 million people live with CHD in the U.S.; 1.4 million are adults older than 18.

After a CHD diagnosis, expectant parents nervously wait for me to share the results of their fetal echocardiogram. They wonder what their child’s heart condition will mean, both in medical and practical terms.

They ask me questions such as, “How many surgeries will my son need for his heart defect?”or “How much will it cost?”

They also inquire, “How do others who have his condition manage?” or “Will he be able to play soccer?” The most difficult one may be, “What is my child’s life expectancy?”

Children and adults living with CHD are not “cured.” After multiple open-heart surgeries and other invasive testing and procedures, a patient’s survival is a testament to the innovation and improvements in diagnosis, surgical technique, postoperative care and research.

A CHD diagnosis stays with patients forever; they will need life-long cardiology follow-up and some may have more surgeries and even a heart transplant in their future.

A tremendous amount of medical investment early in life has allowed these children to reach adulthood. But continued effort in multiple spheres including the medical and public policy, is needed to ensure that the gains made over the last half-century continue into this century.

As survival increases, the focus must now shift to improving neuro-developmental outcomes, understanding the genetics of CHD, and improving quality of care and metrics grounded in innovative approaches to research.

The development of regional centers of excellence and multidisciplinary clinics is also important to provide optimal care to these very complex patients.

Children and adults with chronic life-long illness such as most cases of CHD need to know where and how to get the sub-specialized care they need.

The reality is some hospitals are better than others at taking care of patients with complex CHD and centers who do less surgeries have higher mortality and more complications.

An easily accessible system must exist that allows patients to identify and access these centers. The Congenital Heart Surgery Public Reporting system is one way for patients to identify centers by rating, but more transparency and uniformity is needed.

Parents deserve to have all the information about their child’s heart disease and need to know what specific questions to ask in order to make informed decisions when seeking care.

Advocacy organizations such as the Pediatric Congenital Heart Association have developed a “guided questions tool” to help parents talk to their care team. Further work is needed to help parent make informed decisions when uncertainty exists and outcomes can vary widely.

I see firsthand that advocacy and public policy have a direct impact on how my patients access doctors, surgeons, and hospitals. The battle over the repeal of the Affordable Care Act, coverage of pre-existing conditions, individual mandate to carry health coverage, and the reauthorization of the Children’s Health Care Insurance Program (CHIP) all impact patients’ ability to have life-long access to quality care.

Without these programs and infrastructure, many will not be able to receive the care they need.

The importance of continuing this work rang out clearly in Jimmy Kimmel’s monologue about health care access. A father himself, Kimmel said, “No parent should ever have to decide if they can afford to save their child’s life. It just shouldn’t happen.”

Additionally, as pediatric patients transition to adulthood, they are especially at risk for gaps in coverage due to the complexity of their disease.

A study looking at 12 cardiology centers found a greater than three-year gap in cardiology care for 42 percent of patients. Eight percent have gaps longer than a decade.

Strategies to improve this will need to include developing specialized adult congenital heart disease centers and transition programs, improving education of patients and parents, and ensuring options for health care coverage.

In the moments of conversation with a family when I explain their child will, indeed, need heart surgery, I not only want to assure them their child will get excellent care now, but also offer assurances that the advances we have made over the last 50 years will continue into the future.

To achieve these goals will require continued hard work on part of physicians, patients, advocates, and legislators. Patients with CHD deserve more than simply surviving, they deserve a healthier life that addresses their chronic needs as well.

Angira Patel, M.D., is assistant professor of pediatrics and medical education and a member of the Center for Bioethics and Medical Humanities, both at Northwestern University Feinberg School of Medicine; a pediatric cardiologist at Ann & Robert H. Lurie Children’s Hospital of Chicago; and a Public Voice Fellow through The OpEd Project.