Last night, one of my
BRCA sisters sent me
this link to a
TEDMED
2012 talk by
Dr. Ivan Oransky, executive editor of Reuters Health. In it, he criticizes this country’s broken
healthcare system and doctors who diagnose such conditions as “pre-diabetes,” “pre-hypertension”
and “pre-acne” because they are incentivized to order tests, perform procedures
and prescribe drugs. Not quite six
minutes into the 10-minute video, Dr. Oransky describes “
previvors”
as what a “
particular cancer advocacy
group would like everyone who just has a risk factor, but hasn’t actually
had that cancer to call themselves.” He
then suggests a “Previvor” reality television show in which participants who
develop a particular disease are voted off the island.
His remarks demonstrate a deplorable lack of knowledge about
cancer genetics, outrageous insensitivity to individuals and families affected
by BRCA gene mutations, and a horribly distasteful and dismissive attitude
toward those in the hereditary breast and ovarian cancer (HBOC) community.
Dr. Oransky’s comments bring to mind this Jewish teaching:
Every person has three names:
One her father and mother gave her,
one others call her,
and one she acquires herself.
Given the
opportunity, here’s what I’d tell Dr. Oransky about my three names:
My father and
mother named me Jane Ellen. My name in
Hebrew is Yehudit bat Reuven
v'Dina.
Others call me many
things: Jane, Jane-O, Hane,
JanetheWriter, daughter, sister, niece, colleague, friend.
Among the numerous names
I’ve acquired for myself, one is “previvor.” Unlike
“New Yorker,” “graduate student” or “writer,” though, it’s one I didn’t want,
one I wouldn’t wish on my worst enemy, and one that has caused me deep physical
and emotional scars. At the same time, I’m
lucky to have discovered my status as a “previvor,” grateful for the science
and technology that make “previving” possible, and satisfied with the tough choices
I’ve made to remain a “previvor.”
Most of all, though, I’m incredibly proud to belong
to a community of caring, giving, supportive women and men who—regardless of
what, if anything, we individually or collectively choose to call ourselves—bring
to bear outstanding knowledge and information, strong self-advocacy, cutting-edge
research, and thoughtful, calculated decisions about medical and surgical interventions, all
of which we use to save our own lives.
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