[Wellness] Patient Advocacy

["Karen Patterson" <Patterson@womens-wellness.com>]

Dear members,

You know that I strongly believe in patient advocacy and have sent out
information on this topic before.    Family Circle had an interesting
article by Jo Cavallo in the March 9, 2004 issue. The article is titled,
"The Advocacy Advantage:  Why some Patients Get Better Care"  Jo Cavallo is
a New York City-based freelance writer.  She strongly states "I equate
cancer survivorship with cancer advocacy."   Its a strong statement and I
most definately concur.

Jo's brother, Dom, 59 was diagnosed with a rare fatal-blood cancer called
multiple myeloma, which affects the bone marrow and compromizes the immune
system.Dom was being urged by his doctor to begin high dose chemo, have a
bone-marrow transplant and months of hospitalization.  He wanted to wait and
learn everything he could about the disease before making his decision.  Jo
and Dom teamed up and began searching the internet for information. "The
news was terrifyingly grim"
With treatment life expectancy was 3-5 years.  There is no known cause or
cure. Yet they found new remedies.  Thalidomide, a drug banned in the 60's
after causing severe birth defects.  The FDA has approved Thalidomide to
treat myeloma.  (I, Karen, took thalidomide for a period after my stem cell
transplant.  It was part of a study.  I had side effects from it and
stopped.  Later research results showed no benefit to breast cancer
patients.)  "One of the ways the drug works is by preventing cacner cells
from growing by cutting off their blood supply, makingit impossible for the
renegade cells to take hold in the bone.

Jo thought this would be an appropriate treatment for Dom.  She also thought
it would be far less drastic therapy than the standard treatment for
myeloma. "The conventionsal treatment seemed awfully drastic and potentialy
life-threatening."
They saw four oncologists specialists in Myeloma.  Three recommended
standard treatment and the fourth preferred the less drastic approach.
"After a year taking daily doses of thalidomide along with an experimental
regimen that had initially included a potent steroid called dexamethasone,
and monthly infusions of Aredia, a bone-strngthening medication, Dom appears
stable."  The side effects of Thalidomide are fatique and neuropathy in
hands and feet.

Multiple Myeloma Research Foundation  www.multiplemyeloma.org

When JO found out that the foundation was looking for people to go to
Washington, DC to participate in Blood Cancer Coalition Advocacy Days she
immediately volunteered.

(Karen) There are many Advocacy groups for all types of diseases and they
love it when people help.  I found it a little wearing on my system, but
there were many nurses, doctors, and patients relatives in attendance.  I
really feels good not to feel so powerless anymore. I went to Washington a
couple years for the Patient Advocate Foundation Congress. One year my son
and husband came along.  Another year my sister and close friend joined me.

Advocacy Days or Congress usually includes lobby congress for increased
funding for research and education. Presentations by top researchers in the
field educate attendees on research progress and time lines.  Jo and I agree
that meeting other survivors of your disease is incredibly hopeful.

"So how important is being a well-informed health consumer in the outcome of
your illness?   "There's no question that it adds demonstrably to someone's
quality of like," says Ellen Stovall, 57, president of the National
Coalition for Cancer Survivorship  www.canceradvocacy.org  "The notion of
what survivorship means is really what advocacy is and that is being an
informed, educated, knowledgeable person about whatever life circumstance
you find yourself in that's challenging."

A TEAM EFFORT:  "According to Dr. Ken Anderson, being proactive in your own
health care can also help raise awareness of specific diseases-especially
rare diseases--on the fnational level.  I always talk about the team concept
and partnership among the patient, caregivers, researchers, people at the
NIH and FDA.  Only when all of those groups are pulling toward the same goal
do we actually make meaningful grogress that's going to impact the lives of
patients."

There is a lot more information in the article.  It would be worth finding a
copy of March 9 Family Circle or visiting their website at
www.familycircle.com

kAREN:  WELL ALL I CAN SAY IS THIS IS MY WHOLE-HEARTED BELIEF IN A NUTSHELL.
IT IS THE PURPOSE OF MY WEBSITE.  I ADVOCATE, EDUCATE AND PROVIDE SUPPORT
FOR PATIENTS AND THEIR CAREGIVERS.  I TRY TO KEEP US WITH ALL THE CURRENT
RESEARCH NOT JUST ON BREAST CANCER.  BUT MY STRONGEST BELIEF IS A PATIENT
MUST ADVOCATE FOR THEMSELVES IN THEIR TREATMENT PLAN.  IF YOU HAVE THE
STRENGTH JOINING OR SUPPORTING AN ADVOCACY GROUP IS A GOOD WAY TO KEEP THIS
CHAIN GOING.  I FOUND IT SO THRILLING EACH TIME I LEFT THE WASHINGTON
MEETING. KNOWLEDGE IS POWER---PATIENT POWER!!!

Tomorrow I will post a piece from the same article Titled, "How to Get
Better Medical Care"
My best to whole wellness and complete happiness
Karen Patterson, Founder of Womens-Wellness.com and a breast cancer survivor






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