The Responsibility and Power of Advocacy

This post was authored by Ada Stefanescu, MD, a fellow in training and a member of ACC’s Adult Congenital Pediatric Cardiology (ACPC) Section.

“You all have no idea how powerful your message is, and how powerful you are.”

This was the statement from a professional political consultant to the attendees of the 2015 ACC Legislative Conference. The meeting brought over 400 ACC members together for three days in Washington, DC, to discuss issues on Capitol Hill that impact our patients and our practices. He was right: as advocates for our patients, we saw the power we have when we bring their stories and our perspective – from the trenches in the hospital, the clinic and the lab – to the table of the legislators and administrators.

This year marked a significant success with the passing of MACRA, the Medicare Access and CHIP Reauthorization Act of 2015, which provides a repeal of the Sustainable Growth Rate of Medicare, as well as a two-year renewal of the Children’s Health Insurance Program (CHIP). The ACC, through its members, legislative staff, and the ACC Political Action Committee, worked to pass this vital bill. As we celebrate it being signed into law, the challenge of implementation is apparent – especially with regard to the structuring of the value-based payment models – and requires the continued attention and voice of our ACC members.

The renewal of CHIP, a plan that extends health insurance coverage to children ineligible for Medicaid or state plans, is great news to my fellow members of ACC’s ACPC Section – and to all of us, since, in congenital heart disease (CHD) as in other areas of life, a healthy kid is the first step to a healthy adult.

With CHD being the most common form of birth defect and, along with congestive heart failure, a common cause of complex and high-intensity medical care in children and young adults, we are well positioned to discuss the ways in which infrastructure can be built to support our patients as we move into a value-based health care model.

An important next step in improving the care of medically-complex children is the proposed ACE Kids Act (Advancing Care for Exceptional Kids; H.R.546 and S.298), which will create a framework to allow children covered by Medicaid to receive care across state borders. Indeed, 50 percent of Medicaid beneficiaries are children; the services covered, eligibility and degree of compensation varies widely by states. There are many examples of children with CHD who need to travel across state borders for important medical services, and this legislation is the first step in reducing the barriers for them to have the care they deserve. Importantly, the bill also recommends more comprehensive care coordination for medically complex children, which includes better communication across electronic health records and the formation and expansion of registries. It is vitally important that we communicate to our representatives the College’s strong support of the bill as it will come to a vote in the next few months. For more information on the ACE Kids Act, visit ACC’s website, as well as the Children’s Hospital Association and Speak Now for Kids websites. You can check if your state representative has already sponsored the bill on the House and Senate websites.

As the adult and pediatric caregivers and cardiovascular administrators met with senators and representatives on Capitol Hill, we indeed saw how effective we can be when we rally behind a common cause and advocate for our patients together – which comes naturally, as that is what we do every day in clinical care. We were encouraged by the positive response, and urge you to keep in contact with your local and national representatives. It is part of our patient care mission, which is where we draw our power.

Read additional blogs on ACC’s 2015 Legislative Conference here. Save the date for the 2016 Legislative Conference, Sept. 11-13.

Visit the Congenital Heart Disease and Pediatric Cardiology Clinical Topic Collection on ACC.org and learn more about ACC’s ACPC Section here.

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