Survivors’ Debate: The Past Decade in
Ovarian Cancer
Tuesday,
September 04, 2007
Authored
by: Sandi Pniauskas
Carolyn Benivegna
Tracy Gorden
Where
have we been and where are we going? Ovarian Cancer is not a new disease and in
fact has been traced back to Egyptian times. The efforts of research,
education, awareness, and access to care have gained some momentum, but they
have taken a predictable path and hit many a roadblock for several reasons. With
the benefits of international grassroots level survivorship amongst us, we
consistently discuss where this disease has been and where it is going. Therefore,
we feel it is time for open public discussion about this disease and the
importance, including those of genetic predispositions - men and women. So, the
question is simply this: as survivors, how can we move these behind-the-scenes
discussions to open forums?
While
preparing research for inclusion in a presentation concerning cancer patients’
voices in healthcare, Sandi
Pniauskas took special notice of a
paper published by an expert panel that included the statement, "Patients
or their representatives should not attend the MCC to ensure unbiased case review." (Multidisciplinary Cancer Conference report
dated June 2006 1.) While it would be inexcusable to take
this singular quote as the ‘rule du jour’, this philosophy and others similar
to it are prevalent themes in both private perception and in published
literature. We can be thankful for more enlightened views such as those
published in the journal of Health and Social Policy, Buffalo, New York
3 that state: “The activists' efforts wrested
control of “authoritative knowledge” that had once been the sole domain of the
“experts” with advanced medical training. They used this knowledge to empower
“average” people with medical information…to promote self help and engage in
civil disobedience, which led to changes in healthcare delivery.”
Fancy words, but what does this mean to you and
me? At first glance, it seems these
statements are being critical of the importance and of the relationships that
cancer patients, their families, and friends have with respect to the care they
receive from their healthcare professionals. Nothing is further from the truth,
in fact. It is simply that by being informed and proactive, women with ovarian
cancer along with their families and caregivers have recognized the value and
importance of conducting their own critical analysis. Most importantly, it shifts the focus onto
the human elements and burdens of suffering that we experience each day in our
communities. We have learned much over
the years. Average, everyday citizens
are taking active roles in their treatments and educating themselves about this
disease. In our view, and through the
course of bringing light to this disease and those living with it, it has
become obvious that there are no “average” ovarian cancer women. “Average”, in
fact, is only a temporary state.
As
those living with this disease, we dream of what the future holds in terms of
early detection, education, research, treatment, and a cure. When you have a
dream - and in the face of typical power barriers - what then? The answer is
that you change tactics to whatever means necessary to fulfill that dream.
This
dream has evolved in the form of two ovarian cancer conferences: one in Novi,
Michigan and another in Toronto, Canada
entitled “Survivors’ Debate: the Past Decade in Ovarian Cancer”
2. It is an effort by proactive and knowledgeable ovarian cancer survivors,
coupled with supporting oncology nurses. It is with the understanding, that the
conferences are fully inclusive, but the focus is cancer patients and survivors,
their families and friends. There are two locations in two countries because
our issues are the same: access to care, awareness, early detection, survival
rates and genetics. The directive and focus is to offer a place to exchange of
ideas honestly and openly without judgment or bias.
Patients
need an environment where they feel encouraged to discuss the many difficulties
they face. Sometimes, it is very difficult to find that place - a place without
fear of retribution, criticism, or dismissive attitudes. Patient-to-patient discussion/counseling
offers this environment. It allows for discussion of such topics as things that
work and things that do not. As a result of looking for this arena of
discussion, the Survivors’ Debate has been born - how exciting! Healthcare
settings just do not currently lend themselves to the dialogue that is needed.
Albeit, we would all hope to appreciate and accept this unmet need. In fact,
these forums already exist extensively, but not typically in a public and open
format.
Our
truth is simple, but for some, the message is difficult. The message has not
and is not being heard, so what does this say about the past decade in ovarian
cancer? It says that the past has been about consensus building and what does or
does not work for us. Today, and for the future, it is about patients speaking
for themselves and not by themselves. It is not about ‘empowering’ patients, but
it is about personal permission to obtain that power. It is about giving
recognition to the power, the intellect and the abilities of the individual. It
is with a focus on creating a public force to expedite change, all which starts
with communication. It is always interesting to note that through years of survivourship
in our own networks, a lack of effective communication has never existed. While
women with ovarian cancer and their families are doing the best that they can
to survive, a plethora of funds is being recirculated each day, so how can we
move forward?
Our
ovarian cancer survivor connections and bonds have formed through the years by
enduring extreme challenges and personal losses. The only bias is the bias to
endure and to survive to the best of our abilities, not only as individuals but
importantly also as a community. To be very blunt, this includes much silent
suffering. The fulfillment of this dream is now taking place - the dream of our
patients’ voices in healthcare and in a public forum is coming to fruition. We
are on the cusp of being able to highlight our international ovarian cancer
community with its 8 and 9 years survivorship and explain why it works. We are
going to be able to explore the variety of reasons why what is needed does not
get translated into caregiving. It should in fact, show those problems are
healthcare system malfunctions as opposed to, in our view, system issues. It is
long past due that we take our real issues into a public forum and we encourage
everyone to participate. We plan to make some long overdue noise at these
debates about ovarian cancer, and we envision that these two scheduled events
are only the beginning of a completely new trend in ovarian cancer activism.
We
have encouraged participation and inclusion of all. The authors of this article
think back to the play ‘Wit’ and how medical professionals, in some cases, felt
ostracized by the message of that particular art form. We hope, in hindsight,
that we have, by today, learned
the lesson that ‘Wit’ was about the patient journey as a whole and its shortcomings
from both patient and professional perspectives.
At
the time of this publication, very little funding support for these conferences
has been available. Virtually all of the funding is being provided solely by
the survivours.
1. F.
Wright, C. De Vito, B. Langer, A. Hunter, and the Expert Panel on
the Multidisciplinary Cancer Conference Standards, Special Report, Program in
Evidenced Based Care - a Cancer Care
Ontario Program http://www.cancercare.on.ca/pdf/pebcmccf.pdf
2. Survivors’
Debate: The Past Decade in Ovarian Cancer (registration/information/poll):
http://ovariancancerdebate.blogspot.com/
3. J Health Soc Policy.
2006;21(3):55-69, School
of Social Work, Buffalo, NY
Keefe RH, Lane SD, Swarts HJ. 2006
From the bottom up: tracing the impact of four health-based social movements on
health and social policies.
