By Jennifer J. Salopek
At President Obama’s announcement of the Precision Medicine initiative in January, among fewer than 100 invited guests were two charter members of Women of Impact: Sharon Terry, president and CEO of Genetic Alliance, and Ann Bonham, chief scientific officer at the Association of American Medical Colleges. There is much in common between the goals of the initiative and the mission of our organization; Terry and Bonham saw much to celebrate.
For Terry, who became involved in advocacy after her two children were diagnosed with a rare genetic disease, the initiative represents a coming together of her personal, professional, and avocational lives. “Everything I have done for the past 11 years has been for this kind of activity; it is absolutely central to my work,” she says.
Terry was especially encouraged by the visible presence of patients, and by the President’s use of the term participants, which aligns with the Women of Impact’s “broken window” mission area of Disempowerment.
“The word patient implies an information asymmetry that disempowers and is demoralizing,” she says, noting also that NIH Director Francis Collins preferred the term partners.
Bonham agrees. “For me, it crystallized the importance of the collective efforts of Women of Impact and reminded me of the opportunity and responsibility of all of us to embrace the broadest definition of ‘personalized medicine,’ not just from understanding our genetic make-up, but also understandingwhat it takes to make reality the universal desires of all of us: to enjoy dignity, respect, and meaningful participation in our health and health care.”
Each of the Women of Impact focuses on fulfilling her own professional legacy as well as fixing health care’s broken windows. Terry’s legacy statement is simple: “Love.”
“For me, the Precision Medicine initiative was a manifestation of love. People who are suffering need these tools and to be included,” she says.
For Bonham, reconnecting with Terry at the event was an affirmation of the potential of Women of Impact and the work that has already been done.
“My WOI colleagues are committing their time and energy to move us away from what we have all experienced—the initial interaction with someone behind a desk asking for proof of insurance or a co-payment, the waiting room experience—uninviting, long and impersonal, the multiple sequential steps in the process,” she says.
Jennifer J. Salopek is executive director of Women of Impact for Healthcare. She can be reached at email@example.com.