Phacilitate Leaders World 

The Patient's Eye View of the Kymriah Story

The Patient's Eye View of the Kymriah Story


Episode One of the Phacilitate Leaders World super plenary sessions, led by Anthony Davies, Dark Horse Consulting

Emily Whitehead was diagnosed with acute lymphoblastic leukaemia (ALL) when she was five years old. The five-year survival rate of ALL is 85% but Emily was in the minority. She relapsed in October 2011 and a bone marrow transplant was scheduled but Emily relapsed again just weeks before the transplant date and doctors felt they had run out of options and recommended that she go home on hospice.

At Phacilitate Leaders World 2019 in Miami, FL, Tom Whitehead, Emily’s father describes what happened from that moment and how his decision to get a second opinion from doctors at the Children’s Hospital of Pennsylvania (CHOP) changed their lives. Emily was the first child in the world to receive CAR-T treatment, a huge risk that has certainly paid off, as Emily is now seven years cancer free.

Anthony Davies, CEO, Dark Horse Consulting leads the interview with Tom Whitehead and Bruce Levine, Barbara and Edward Netter Professor in Cancer Gene Therapy at the University of Pennsylvania where we hear about Emily’s experience during treatment, her perfect flow cytometry results (that Bruce has displayed proudly in his office!) and Emily’s bravery at the FDA drug approval meeting.


The Whiteheads have blazed a trail, in fact, Bruce told the audience that ‘There’s no family that has done more for the approval of a drug than the Whiteheads have done for Kymriah…” but there is still a long way to go until the drug is readily available for the patients that need it and that’s what Tom and the Emily Whitehead Foundation are striving for every day.

“Educating oncologists, we’d like to see more of that…our local oncologist told us we were basically wasting our time going to CHOP’ says Tom. This plus getting funding for drugs like Kymriah are two of the biggest barriers to accessing treatment but with patient advocacy, like we’re seeing demonstrated from the Emily Whitehead Foundation will play a huge part in overcoming these hurdles.

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    bluebird bio
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    Klaus Kühlcke
  • Dynamic, interesting and highly interactive event that promotes exchange and networking in highly specialized field of gene therapy.
    Nathalie Clement
    Powell Gene Therapy Center, University of Florida
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    Kurt Gielen
    Chemelot Campus B.V.
  • Great way to expand network with global experts in cell and gene therapy who are facing similar challenges.
    Steven Goodman