This post was authored by Tom Klitzner, MD, FACC, member of the ACC’s Adult Congenital and Pediatric Cardiology Membership Section.

A recent article on NPR touches on an issue many of our congenital heart disease (CHD) patients face: a need for reform to facilitate the care for “medically complex” patients (such as infants or children with critical CHD) who receive Medicaid.

The article details the financial battles of the family of Katie Doder, a 15-year-old who has congenital central hypoventilation syndrome – a rare condition that affects 700 children worldwide. Katie wears a pacemaker to control her heart rate and at one point required 24-hour nursing.

This patient profile is not unlike many of our CHD patients. While there have been incredible advances in CHD care, critical CHD babies may require lifesaving measures and the highest level of care from the first few days or even hours of birth. In the fortunate cases, the highest level care is available within the patient’s city or state. In other instances, patients and their families must visit specialists in other states, but their Medicaid coverage doesn’t cross state lines.

Patients such as Katie who are deemed medically complex require frequent trips to the hospital, and while they often receive a combination of private insurance and Medicaid, the NPR story notes “it can be challenging to coordinate the care and coverage.”  As Medicare rules vary state by state, coverage and accessibility policies further compound difficulties in coordinating immediate and longer term care issues.

In addition to the difficulties coordinating Medicaid access, eligibility and coverage between states for  medically complex patients on there can  also be a loss of efficiency, duplication of tests and  tests are often repeated since the medical records are not coordinated and do not link between specialists.

According to a report by the Children’s Hospital Association, “improving the communications between doctors and hospitals to limit repeat tests and unnecessary procedures for medically complex children could save Medicaid $13 billion over 10 years.” For the complex CHD patients this is significant – as it has been estimated that between 35-50 percent of complex CHD patients are Medicaid recipients.

So the question is: what can we do to help these patients and their families?

As physicians who treat these medically complex children, we can support our patient advocate partners who are fighting for Medicaid reform that would recognize the special needs of these patients.

The Children’s Hospital Association “has been lobbying Congress to help create a special network within Medicaid to coordinate care between hospitals, too.” This is consistent with the emphasis the College places on patient-centered care and encouraging a “team-based” approach to care.

In my discussions with patients and family advocates, I am reminded daily of the struggles CHD patients can face, not only in the clinical battles, but in access to appropriate care as well. Let us all be more cognizant of these needs and do our part to encourage the coordination of care.

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