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Vertex patient a guest at State of the Union

Bill ElderHandout photo

A medical student with cystic fibrosis, who is taking a drug developed by Boston’s Vertex Pharmaceuticals Inc., was invited to be a guest of first lady Michelle Obama during President Obama’s State of the Union address Tuesday night.

Bill Elder, 27, an Ohio resident, is taking Vertex’s Kalydeco medicine, the first drug designed to counter the genetic cause of the life-threatening chronic lung disease. His story is “a testament to the promise of precision medicine, an emerging approach to treatment that takes into account patients’ individual characteristics, and a kind of research the president hopes to expand,” the White House website said.


President Obama didn’t specifically cite Elder’s story or the Vertex medicine in a prepared text of his speech. But without spelling out details, he announced a “precision medicine initiative” to advance targeted treatments.

“Twenty-first century businesses will rely on American science, technology, research, and development,” the president said. “I want the country that eliminated polio and mapped the human genome to lead a new era of medicine — one that delivers the right treatment at the right time.

“In some patients with cystic fibrosis, this approach has reversed a disease once thought unstoppable. Tonight, I’m launching a new Precision Medicine Initiative to bring us closer to curing diseases like cancer and diabetes — and to give all of us access to the personalized information we need to keep ourselves and our families healthier.”

Elder, in an interview, said he was surprised to get a phone call Sunday night from the White House Office of Science and Technology inviting him to sit in Michelle Obama’s box during her husband’s speech.

“The whole thing’s been an amazing whirlwind,” he said.

A student at the Boonshoft School of Medicine at Wright State University in Dayton, Ohio, Elder said he hopes to practice family medicine while using his own story of struggling with cystic fibrosis to boost the progress of personalized medicine.


Kalydeco significantly slows the rate of lung function decline by correcting a defective protein that regulates the flow of fluids within cells.

“The story of Kalydeco, with cystic fibrosis, is a perfect example of precision medicine and how it can transform medicine,” Elder said. “I’m honored to be in this position where I can speak on behalf of precision medicine and family medicine.”

Vertex chief executive Jeffrey Leiden said employees of the Boston biotechnology company were excited that a patient taking its medicine will be in the spotlight. “Bill is an inspiration to everyone at Vertex, and we’re thrilled to see him attend [the] State of the Union as a testament to the future of personalized medicine,” Leiden said.

Elder testified at a US Senate briefing hosted by Friends of Cancer Research in 2013, talking about the FDA’s efforts to speed approval of breakthrough drugs.

Robert Weisman can be reached at Follow him on Twitter @GlobeRobW.