Sometimes the effectiveness of a medical treatment can lead to a secondary problem — like when a congenital heart disease (CHD) patient starts feeling better and stops seeking care, despite the need for regular monitoring.
The Adult Congenital Heart Association (ACHA) has chosen to address this dynamic head-on in “Born a Fighter. Live Like a Champion.” The campaign zeroes in on one specific audience: Black men aged 18 to 24 living in Los Angeles.
“If somebody is doing well, they take the mindset that ‘I was born with this defect, I had X, Y and Z treatments and surgeries, now I am feeling good and moving on,’” explained ACHA president and CEO Mark Roeder. “Our goal is to make sure they get checked by a specialized individual on a regular basis to assure that everything is still moving along well and that the initial valve replacement or initial surgery does not need to be readdressed.”
The tendency of patients to slip away from ongoing specialized care is common among congenital heart defect patients, but it is even more pronounced among underrepresented populations.
“With many other childhood diseases and illnesses, it’s mom and dad who deal with insurance, scheduling appointments and assuring you are interacting with your pediatric physician,” Roeder said. “As people move on to college and on with their lives, they eventually also move off their parents’ insurance and settle into their careers. It is when you have many life changes that you typically lose many individuals to care.”
Roeder said “Born a Fighter,” which launched in Los Angeles at the end of October, was shaped by the organization’s work with Corporate Giving Connection.
“When we decided to focus on DEI initiatives, one of the important elements was recognizing that we don’t have the necessary internal expertise,” he explained. “We knew we needed to work with external experts, specifically in Los Angeles.”
The PSAs resulting from this collaboration are the centerpieces of the campaign. They touch on key moments in a patient’s life: Diagnosis at birth, pediatric care and the need for ongoing care.
“One of the things that the CHD community talks about a lot is that, from day one, they had to fight, because they were born with whatever their particular defect was,” Roeder explained. “We want people to know that throughout their lives as they keep fighting, there are many tools out there to help them.”
In ACHA’s case, this includes the website’s directory of specialized clinics, educational materials and information about social opportunities and fundraising events.
“One of the original reasons our organization was founded back in 1998 was this feeling of, ‘I am all alone and I don’t know anyone else out there like me,’” Roeder continued. “Now with social media and advances in the field itself — which wasn’t a specialty until 2012 — it’s easier to connect.”
After the completion of the pilot campaign in Los Angeles, ACHA intends to focus on other communities. In Los Angeles, the pilot campaign’s various efforts (social, billboard, radio and other outreach) had already reached 1.3 million people by mid-November, Roeder reported.
“Some things are working and some things need to be refined and finessed before we move on to new populations and new markets, but we have been really pleased,” he added.