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A BETTER DESIGN

Patient’s voice influences the design of clinical trials

By Kyle McKendall, staff writer

W hen Bobby Wiseman enters a HIV and hepatitis C, the latter of which he’s been fortunately cleared. He has a vivid
room, he doesn’t go unnoticed. memory of telling his mother “I don’t want to have hemophilia anymore.” That feeling
With a smile plastered on his face and is one that, as for so many others the community, has followed him his whole life as
a gregarious personality, Bobby is one scientific advancements continue to point to a cure for hemophilia on the horizon.
of those people who makes you wonder,
‘gosh, how is he always on?’ “When I was 12, they said a cure is coming in five years,” he recalls. “When I was 17,
they said it again. Now, at 47, they are still saying it.”
Despite a more than four-hour plane ride
from his hometown in California to Ohio While there is still no cure for hemophilia, Wiseman has decided to invest himself fully
to participate in our annual Symposium, in the search for what some might describe as one: he’s participating in a clinical trial.
he arrived at the hotel right from the Though, in true Bobby form, he’s not just participating in the trial, he was involved in
airport and ready for our interview. its design. After a referral from his hematologist, Wiseman was invited to attend the
Though, we couldn’t get started until trial company’s international meeting of clinicians, essentially the executive commit-
he replied to an email confirming the tee of the clinical trial, to bring a patient voice into the conversation. And that he did.
shipment of goats and sheep to
his family’s recently-purchased 40-acre Bobby Wiseman shares
property. his experience with a
clinical trial.
Wiseman’s life has seen a whirlwind of Photo credit: Gina Richards.
changes in just a few years. His biggest
concern used to be which plane he had
to board for a trip. Now, his life revolves
around daycare programs and school
teachers.

Actually, that’s an understatement:
Wiseman and his husband are the proud
foster parents of five children ranging
from ages 4 to 17. Toss in the care
required to manage his own severe
hemophilia B, the ongoing realities
of aging (he’s 47 but likes to describe
himself as a “youthful 25” when asked),
and his desire to make an impact within
the bleeding disorders community, and
his schedule is packed.

His personal story of living with
hemophilia is one which many in the
community can relate to. Born in the ear-
ly ‘70s with severe factor IX deficiency,
Wiseman ran into complications with

Fall 2018 | Dateline Federation 7