Race for a Cure:
What if there are no alternative therapies?
Subject Advocacy vs. Therapeutic misconception
Gigi McMillan
gigi@wecan.cc
www.wecan.cc
Ben
Subjects are at a disadvantage

They are emotional, medically
uninformed, and inexperienced with
clinical research.

They are confused by a tradition of
“doctors cure me”, language usage,
and the notion of a “legal contract”.
When there are no alternative therapies…
Recognize and address the vulnerabilities of
the subject/caregiver:

What is their emotional state?

What information do they need?

Is the conversation respectful?

Do they understand risks and QOL
issues?

Would a Peer Mentor be helpful?

"If not for my child, then for the next."

“There is a sense of obligation. If no one
does it, then what?”

"At least our journey was not in vain."

“There is a struggle for meaning.”
Ben McMillan, age 5
Ben McMillan, age 19