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C-TAC was founded because Bill Novelli and Tom Koutsoumpas had both navigated the complex advanced illness care process with family members, but Koutsoumpas had a direct experience with serious illness when he was diagnosed with melanoma.

This first-hand experience with a serious illness has made Koutsoumpas more keenly aware of the challenges faced by people with life-threatening illnesses.

“I know what it feels like to receive a very difficult diagnosis and to be told that it could be fatal,” Koutsoumpas said. “That’s made me more sensitive and more aware being on the receiving end.”

Koutsoumpas shared his story in an article published online by the American Academy of Dermatology. He believes that relating personal experiences is a powerful tool for those seeking to improve advanced care.

“Storytelling bonds us together,” Koutsoumpas said. “It makes a difficult topic easier to discuss.”

He also said that direct experience with advanced illness can benefit leaders in the advanced care movement because it affords them a unique perspective on the issue.

Leadership is a familiar role to Koutsoumpas, who currently serves as co-chair and co-founder of C-TAC, the president and chief executive officer of the National Partnership for Hospice Innovation, as well as interim president and chief executive officer of Capital Caring. He is also a founding member of consulting firm Healthsperien.

When asked how he balances these roles, Koutsoumpas explained that his passion is born from his own personal experiences. He also played a critical role in developing and implementing the Medicare Hospice Benefit, an achievement which he says continues to motivate his work.

“I have a very strong desire to make a difference on important issues,” Koutsoumpas said, “and this is one of the areas most important to me.”

Koutsoumpas also recognizes the importance of fostering the next generation of leaders to guide the advanced care movement forward.

“It’s a responsibility we have as current leaders,” Koutsoumpas said, “to identify and mentor people and eventually pass on the torch.”

Developing tomorrow’s leaders will only become more important as the Baby Boomer population ages and leads to an increased demand for advanced illness care and caregiving services. “We all have to work hard and work together to ensure that they have the care and support they need to managed advanced illnesses,” Koutsoumpas said. “At the end of the day, we want to make sure that everyone across the nation can access high-quality care.”

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