Debbie Wasserman Schultz is a U.S. congresswoman from Florida. She has long been an advocate for the rights of women, seniors, and children.
In 2009, she increased efforts to promote early screening for breast cancer after revealing her own battle with the disease in 2008. The bill passed as part of the Patient Protection and Affordable Care Act in March 2010.
Editor-In-Chief Gary Barg sat down with the congresswoman for a wide-ranging discussion about laws, families and caregiving.
Gary Barg:
What can you tell us
about the Early Act?
Debbie
Wasserman Schultz:
The EARLY Act,
called the Education
and Awareness
Requires Learning
Young Act, is
legislation that I
introduced when I
was researching a
way that I could
help use my own
story to really
advance the fight
against breast
cancer. And what I
found was that the
biggest gap that
exists right now is
what young women
face when they are
diagnosed with
breast cancer
because mostly the
focus of breast
cancer education is
on women who are 40
and over. So the
EARLY Act will
create an education
and awareness
campaign targeted at
women under 45 years
old that will help
them understand how
to focus on their
breast health so
that they can
minimize their risks
and make it more
likely if they are
diagnosed with
breast cancer, it is
detected early. It
also will educate
physicians because
so often when a
young woman comes in
with a problem with
her breast, whether
it is a lump, a
redness or a rash,
physicians will send
her home because of
their belief that
such a small
percentage of the
breast cancer
diagnoses every year
are young women that
they say “Oh, you
know, it is probably
just a cyst,” and
they send the woman
home. So we
will educate
physicians about
making sure that
they can communicate
with their young
female patients
about their breast
health and ask the
right questions. And
lastly, the third
piece of the
legislation is a
grant program for
organizations that
help young women
deal with the unique
challenges we face
when diagnosed with
breast cancer.
GB:
Do you have advice
for people about how
to communicate with
young children
regarding their own
serious personal
health care issues?
DWS:
I think the
important thing to
tell caregivers and
other parents is to
make sure that when
you do share
information about a
serious illness with
a child, that you do
it in an age
appropriate way and
you know your own
children’s
boundaries and what
they can handle.
Lastly, it is really
important that you
are honest. When my
daughter asked me,
“Am I going to get
cancer?” I could not
say “Oh no, you
definitely will
not,” because I do
not know whether she
will one day, but I
wanted to make her
feel that she did
have some ability to
address it if she
did and that it was
not something she
had to worry about
right now.
GB:
I think those are
the two keys to the
situation. First,
you know your child
better than anyone
and second, honesty.
DWS:
And, for it was
really important,
the reason that I
kept it so quiet and
did not even tell
most of my close
family was I just
did not want anyone
to slip accidentally
in front of my kids
in conversation and
have my children
hear it from someone
other than me,
especially with as
public a life as I
lead. I just really
wanted to tell them.
I had a plan. I felt
strongly about when
it was best to tell
them, and I wanted
to control that. The
other issue for
people with serious
illnesses is whether
you are someone in
the public eye like
I am or someone who
is dealing with
illnesses at a
professional, as
well as in their
personal life, I did
not want it to
define me. I have
had other women come
up to me since I
have made my
diagnosis public who
share the same fear—
that it is very
difficult when you
are working. You do
not want people
making decisions for
you about what you
are capable of
handling while
dealing with your
health care
challenge and I did
not want that to
happen to me.
GB:
You know, on another
subject, obviously
we watched the Terri
Schiavo situation
very closely a few
years ago. Do you
have any thoughts or
any advice for young
adults about having
their own advanced
directives paper
work in place?
DWS:
Again, it is a
personal choice, but
I can tell you what
I learned from the
Terri Schiavo
controversy and from
my own health care
challenge was that
you are not
invincible, and it
is possible for
anyone to deal with
an unexpected health
care challenge.
Having advanced
directives is
absolutely essential
so that you do not
have to deal with
any battles like the
Schiavo and the
Schindler families
had to go through. I
am sure that most
people think their
family members are
loving and they will
be able to work it
out, but you just
never know. So
having advanced
directives in place
so that your
intentions are clear
is extremely
important. When you
are younger, it is
just not something
you think about. It
is the same reason
that too many young
people decide not to
carry health
insurance, because
it is an expense
that they do no
think that they need
until they need it.
Yet most illness is
unexpected and hits
you like a ton of
bricks and then you
are caught flat
footed with a
mountain of debt and
with no advanced
directives. God
forbid anything does
happen and you are
incapacitated; you
do not want to put
your family through
the angst and
heartache that they
would have to go
through arguing
about what your
intentions really
were.
GB:
What would be the
one most important
piece of advice you
would like to share
with family
caregivers?
DWS:
Probably the most
important advice is
to give the person
that you are caring
for the space that
they need. If they
need you to be right
there for them, then
do that. But, when
they need you to
back up and give
them a little bit of
room, do that as
well. Sometimes
caregivers can be
very smothering and
sometimes they do
not realize how much
someone needs them
at that moment. So
try communication
with the person you
are caring for and
be aware that
person’s brain has
not left them; they
do generally have
the ability to make
their own decisions
about how much
assistance they
need. That is
probably the best
advice that I could
give them. Also,
help them with
advocacy. I happen
to be a strong
willed and
knowledgeable person
and I know that I am
able to speak up for
myself. But what
happens with
patients is,
especially when
diagnosed with a
serious illness, you
put your life in the
hands of your health
care providers. You
do not know anything
about what is wrong
with you and you
trust that the
health care advice
you are getting from
your physician is
the right one. A
caregiver can assist
the patient in
getting more
information, asking
more questions,
empowering the
patient to push for
access to health
care that perhaps
the physician or the
insurance company is
not providing. So
just being there in
an advocacy role to
help the patient be
an advocate for
themselves is
incredibly
important.
GB:
Those are two
terrific answers.
Also do not take
easy no’s. That is
what we
find from insurance
companies and from
doctors.
DWS:
I do not accept no
as an answer. Every
insurance company
has an appeals
process. Their job
is to minimize the
access to coverage
that you get and
your job is to
maximize the
coverage that you
paid for.
GB:
We always say the
four most important
words are, “Who is
your supervisor?
DWS:
Exactly, that
is absolutely right;
and tell them to
hang on because
universal health
care is coming.
Our goal is
to pass legislation
out of Congress this
year and send it to
the president; that
will create a
universal
health care
system that will
give everyone access
to coverage they
need and deserve.
To hear entire
interview go to
http://caregiver.com/audio/index.htm
