Andrew Israelsen

Type of Porphyria

Erythropoietic Protoporphyria (EPP)

Andrew Israelsen's Journey to the Sun

Andrew Israelsen would turn 18 in August, which should have been a moment of celebration. But instead. He and his family received disappointing news: Andrew’s insurance provider would not approve Scenesse, the only treatment for his EPP, because he was still underage and only three months from his 18^th birthday. For Andrew, who had long dreamed of playing baseball with his school team and joining his family on a Caribbean cruise, the diagnosis of EPP made those hopes feel impossibly out of reach.

That changed when Andrew’s father, Rich, reached out to the American Porphyria Foundation (APF). We immediately contacted Dr. Linda Teng at Clinuvel, the manufacturer of Scenesse to explore any possible pathways to help Andrew receive Scenesse early. Unfortunately, the insurer in the U.S. held firm—no access until age 18, just a few months away.

But the APF had seen success before. Other members had traveled to Switzerland to receive Scenesse from Dr. Anna Minder, even before the treatment was approved in the U.S. We reached out to her on Andrew’s behalf, and she warmly agreed to help. Before departing, Andrew met with Sancy Leachman, MD, PhD,  who would be his physician to administer Scenesse in the U.S. once eligible. Dr Leachman helped prepare the necessary paperwork for the Swiss clinic.

Antonella Colucci with Clinivel in Europe helped facilitate the clinic visit and with everything in place, Andrew and his mother, Geni, boarded a plane to Switzerland the next day. There, he received his first Scenesse implant from Dr. Minder—who, like always, impressed the family with her brilliance, warmth, and compassion.

Shortly after returning home, the family set off on their long-awaited cruise. Uncertain whether the Scenesse would take effect in time, they held their breath. But just days later, the APF phone rang—it was the Israelsens, calling joyfully from the ship. Andrew had been swimming, enjoying watersports, and basking in the sun with his family—without pain. Their relief and happiness were overwhelming.

None of it would have been possible without the dedicated efforts of so many. The Israelsens expressed their heartfelt gratitude to Nicole and Desiree at the APF, Dr. Linda Teng and Antonella Colucci at Clinuvel, Dr. Anna Minder, and Dr. Jasmin Barmen at the Zurich clinic. Together, they helped make Andrew’s dream a reality—and gave him a new life under the sun.