FH: A Parent with a Dream

Scott Radabaugh has become one of the most active faces in the familial hypercholesterolemia (FH) community. This past year he has had multiple stories written about him, assisted in the Family Heart Foundation’s Advocates for Awareness training, sent out over a thousand letters to cardiac rehabilitation centers regarding FH, and participated in a Racing Heart 10K race to raise awareness of FH, among others. He is also a single father to three kids, all who have inherited FH as well.  So, it was no surprise to find Radabaugh in Washington D.C last week, speaking in front of the US Food and Drug Administrative (FDA) expert panel about potential medications that could change the landscape of treatments for everyone with FH.    

“In the time it takes to finish my five minutes, five people in America will die from heart disease,” Radabaugh said. “I dream of a world where heart disease is a thing of the past and no one will experience the grief of suddenly losing a loved one and being cheated out of a chance to say goodbye.”

Radabaugh does not strike you as someone suffering from high cholesterol. He is a tall, middle-aged man, on a vegan diet, with a physique that suggests he is very active. He exemplifies a clear misunderstanding of how society thinks of cholesterol. Most people assume your cholesterol levels fluctuate with the amount of high-fat food you intake. Therefore, the equation to protect yourself against heart disease is easy: lowering these high-fat foods.

On a quiet Spring day, Radabaugh, 43 at the time, started his day with a routine cardio workout.  Only minutes into the workout he realized something was wrong. Soon after, he was being prepped for a quadruple bypass. “The surgeon told me, ‘You’re very lucky. You were two or three weeks away from having a fatal heart attack,’” Radabaugh recalled last week. 

Since then, Radabaugh has dedicated much of his time and attention advocating for better treatment and care for individuals with FH; mainly his children.  “I still remember the crushing feeling of hearing that I had unknowingly passed on FH to all three of my children. Parents shouldn’t have to have a cardiac event to learn that their kids need treatment.”    

The approval of the new PCSK9 therapies hope to prevent other from those feelings.  Like statins, PCSK9 inhibitors lower LDL cholesterol, the so-called “bad cholesterol”, although the two types of treatments work in different ways. While statins are pills, the new medications would require patients to inject themselves every two to four weeks.   

“With the FDA approving this new medication, it will provide another powerful tool to allow countless other children to live a full life,” Radabaugh concluded his speech. “As a parent, there is no better feeling than helping extend the lives of my children. However, I can’t do it alone.” 

The approved recommendation by the expert panel is a significant step in receiving that help. But don’t expect Radabaugh to stop fighting until his dream comes true.