Ovarian
Cancer at Twenty-Three Years Old: From Hopeless to Helping
I have chosen to discuss the personal and public issues
of ovarian cancer after a close friend of mine, Diem Brown, discovered she had
cancer at only twenty-three years old. After a successful remission, Diem vowed
to help others who suffer through personal and medical hardships by creating
the first and only Patient Gift Registry, www. Medgift.com. This unique online
registry allows patients to have a medical registry-similar to that of a
wedding, where instead of blenders and dishware, patients are able to create an
online listing of various items they want or need that will assist with medical
expenses. In this final essay, I will research the personal problems my friend,
Diem experienced along with other stories I have discovered online through
various chat rooms and the Cancer Survivors Network through the American Cancer
Society. This will include how cancer
has affected Diem’s life, her cancer treatment and the medical care that was
available to her and others. I will cover a real-life account of what cancer is
like from the eyes of someone who lived through it, hid it from family and
friends and managed to triumphantly defeat it.
I will then identify the public issues associated with ovarian cancer
which include healthcare costs, treatment, and lack of insurance. I will
discuss how possible public policies may contribute to many of the problems
patients with ovarian cancer face on a consistent basis and suggestions to
resolve it.
Diem
Brown, a beautiful reporter living in Los Angeles, California had
just been cast for a MTV reality show. A few weeks before she was
set to embark on this new opportunity, she received life altering news. Imagine
being told you have Stage II Ovarian Cancer at the age of
twenty-three! When I met Diem in 2005, unbeknownst to me, it was just a month
since she had been given her diagnosis. Today, I count her amongst my
dearest friends.
Before
her diagnosis, Diem went to have a benign tumor removed from one of her
ovaries. One year later, she then went to the doctor for her yearly
check-up after noticing some abdominal swelling. It was that day, alone, she
found out she had ovarian cancer. When she first heard the news, she told
me she literally dropped to her knees and ran to her car. Shocked and in
disbelief, she drove around for hours contemplating how this diagnosis was
going to change her life, if not, end it.
Diem,
by her own admission, has always been a healthy girl. She is vegetarian,
active, does not smoke and rarely consumes alcohol. She was not familiar with
cancer, let alone ovarian cancer. Her world was slowly crashing in around her
when it was supposed to be a very exciting point in her life. She was afraid to
tell her friends and family; her own mother recently passed away and she was
terrified to see her father, a strong military man, have his heart broken all
over again.
Her
first instinct was to find information on ovarian cancer and the rate of
survival. She spent countless hours on the internet and in chat rooms
discussing her own situation with others experiencing the same. Initially however,
she did not find this comforting because trying to understand other people who
shared the same fears that she had only solidified and confirmed her thoughts.
She went into a deep depression and refused to leave her apartment. Ovarian
cancer begins in the ovaries and is the fifth most common cancer among women
and more fatal than any other reproductive cancer. She was confused, part of
her wanted to ignore it as if it was not really happening to her, another part
of her thought she would soon see her mom again. After she overcame her initial
shock, she thought this should be a battle she should fight alone. She did
not want to worry her family or her friends, especially after the death of her
mother. She also still wanted to compete on the MTV reality show and felt that
if she had a limited time on this Earth, she was going to make the best of it.
She did not want to feel hindered or incapacitated in any way despite the
physical and emotional turmoil she was feeling inside.
She
wanted to be brave and chose to go to her first doctor’s appointment alone. She
walked in the office and after seeing other patients without hair and wearing
oxygen masks, she nearly passed out. At that moment, she realized she could not
do this alone and needed to tell her family.
"Hearing
my Dad's voice crack as he made his best attempt to reassure me just broke my
heart." Diem told me about the dreaded conversation with her family.
"Of course they were supportive, and I did feel better
after telling them. This is not something I--or anyone should have to go
through alone." Feeling the support and unconditional love from her
family, Diem decided to continue her research regarding ovarian cancer and
treatments. She knew chemotherapy was vital to her survival and was terrified
of losing her hair. "It is not about the vanity, of course a girl wants
her hair, but I knew I could not hide from this "issue" if I saw
illness in the mirror." said Diem. "I knew that not only would people
closest to me know, but strangers on the street would be also aware that I
was...different."
Diem
received her doctor’s approval to compete on the MTV reality show, but went
through two rounds of chemotherapy before leaving. “It was horrible, I won’t
deny that, and it’s very long and uncomfortable…oh, how I hated the tingling.
It is like a war zone with your body,” Diem described about her early
experience. “I had to take several different medications for pain, fatigue and
nausea during filming of the show.” She also explained she felt exhausted and
slept a lot but was primarily concerned about injuries. “Your blood doesn’t
clot well when you are on chemo and your immune system is weakened so those
thoughts were consistently on my mind.”
Diem
bravely disclosed she had cancer to some of her cast mates. I was one of them.
She didn't look sick and certainly didn't act as I would have suspected someone
with "cancer" to behave. She was athletic, strong with long hair and
loved to dance. She didn't want any of us to feel sorry for her and confidently
told us she was going to beat it and she would be back for another season. I
didn't doubt her. However, her doctor
did inform her that upon her arrival home, she could anticipate an immediate
long and strenuous bout with chemotherapy.
After
she returned home, she never went to a single doctor’s appointment alone, she
followed every order her doctor suggested and after several painful months
entered remission. She officially found out she was in remission on St.
Patrick's Day in 2006, and was so elated she threw on a green wig to celebrate
with her friends. Diem was an instant
"fan favorite" of the MTV program she been on, so she was offered
another opportunity on the show. However, she was still in remission and didn't
have any hair. Diem decided to go in spite of not having the long hair she had
on her first season of the show. She was happy, hopeful and wanted to share
there is a chance to beat cancer, and she was the living proof.
When
Diem returned to the show, she wore a different wig every day, dependent on her
mood. One day would wear a bright pink wig that was shoulder length and the
next day, she would become a curly blonde. Other female cast members would wear
one of her many wigs to show support. One particular afternoon during filming,
the cast had to jump in a pool of water. Diem was hesitant; she had never been
seen without her wig before; certainly not on national television! The camera
slowly zoomed in on her as she pulled the wig off of her head. The cast stared
at her wide-eyed and without missing a beat; Diem courageously jumped into the
water and started the competition. People cried, and I
still commend her for being so strong. It is hard enough to go
through cancer, but to be seen in such a vulnerable state on national
television is beyond inspiring.
Today,
Diem is a healthy 28 year old woman, an entertainment reporter and founder of
MedGift. The doctors removed one ovary and part of her fallopian tube.
Diem isn't sure if she can have children one day or not but told me, "I
can't live my life worrying about things I cannot control. I'm healthy and want
people to know there is support out there despite feeling alone and scared."
I
decided to look into some ovarian cancer chat rooms myself to see the type of
support one can gain from fighting this cancer. Unfortunately, it was difficult
to find a chat room with people in it! However, I did find some inspirational
messages and support on various message boards and Facebook support groups. I
learned that eating green vegetables rich in DMI can reduce the size of ovarian
cancer tumors and World Cancer Day is February 4th. Some people
shared fundraising efforts and provided links to their own or a loved one’s
individual story. Other’s showed compassion, acceptance, and prayer. One woman,
Darcy Rizzo, discussed symptoms while encouraging others to get blood work
done. People explained different types of medication and I discovered that the
oral tablet, Etoposide costs $2,000 dollars a month and Medicare will only pay
80%. Reading about this particular woman’s frustrations with medical expenses
was disheartening.
While
looking for political advocacies in ovarian cancer, I came across several
issues that many women have to address despite their already terrifying
diagnosis. Medication and treatment is costly and there are three main forms of
treatment. The first form is removal of the cancer from the ovary, the second
is chemotherapy which uses drugs to kill and eliminate the cancer cells and the
third form is radiation treatment which is only used in particular cases.
Radiation treatment uses very high energy X-rays to kill cancer cells.
Treatment is based on each individual, dependent on their health, age, the
severity or stage of cancer and the histologic cell type.
I joined the Cancer Survivors Network through
the American Cancer Society so that I was able to communicate with cancer
survivors for research. I was surprised at how emotional I felt from reading
complete strangers circumstances. I noticed that once several patients were in
remission, they were terrified of recurrence. One woman, only known on the
message board as “Flame” was worried that she would have a recurrence and not
see her children have their own babies. She remarked how the she read the
survival rate to only be five years. Her plea for support from others was not
only touching, but heartbreaking as well. To read other survivors tell her that
she is an individual and to pay no mind to statistics was very inspirational.
From fears of claustrophobia during PETscan (Positron Emission Tomography) to
worrying about side effects of medication; this only proves that even after
these women have successfully “beat” ovarian cancer, they will forever be
emotionally scarred and perhaps secretly terrified that this cancer may one day
resurface in their lives. I’ve discovered it is not only the patients
themselves on these message boards, but husbands and children seeking answers
or support for their families’ private pain.
To
pay for the cost of medical expenses associated with ovarian cancer can be a
heavy burden. Etoposide, an anti-cancer chemotherapy drug typically used in
cancer of the lung or testicles can also be used to treat ovarian cancer. This
drug can cost as much as $2,000 a month and Medicare will only pay 80%
according to one woman who discussed her medication on an online message board.
However, the unbelievable price of Doxil, which is used to treat ovarian cancer
that is resistant to improvement or has even worsened, was billed to one
woman’s private insurance company $30,800 for one single round! She went on to
say that her insurance company paid more than $330,000 in one year for her
cancer treatments—without any surgeries. Another expensive drug used to treat
ovarian cancer is Topotecan. I found this cost comparison chart below to give
an idea of the medical costs of Doxil vs. Topotecan is the United States.
Conclusion: Doxil was actually found to have cost savings of $6,017/patient
over Topotecan for relapsed ovarian cancer patients in the United States. [1]
In researching to discover which drug would be more effective, it appears it
depends on the individual patient. One woman claimed that Topotecan caused extreme
fatigue and the schedule of treatment difficult to maintain. Another said it
was a manageable chemo drug that caused no discomfort. Unfortunately, it seems
each patient needs to discuss with their doctor their best option.
Mean Cost ($ per Patient)
|
|
US Costs
|
|
Parameter
|
Doxil (n=118)
|
Topotecan (n=117)
|
|
All AEs
|
$985
|
$6,435
|
|
Selected AE costs*
|
|
|
|
Anemiaå
|
$26
|
$156
|
|
EPO
|
$151
|
$689
|
|
Neutropeniaå
|
$98
|
$2,184
|
|
G-/GM-CSF
|
$84
|
$2,323
|
|
PPE
|
$263
|
$1
|
|
Drug + Admin
|
$13,571
|
$14,138
|
|
TOTAL
|
$14,556
|
$20,573
|
Why
do these drugs cost so much? Possibly because the drug companies primary
incentive is to operate for profit. Another reason is for the cost of research
and the economics involved with marketing and selling the drugs to sick patients.
“It takes about 7 to 10 years and an
average cost of 500 million dollars to develop each new drug. This money is
spent before the FDA approves the drug, and if the drug is not approved, the
company loses the money. For
instance, only one out of every ten thousand discovered compounds actually
becomes an approved drug for sale. Much expense is incurred in the early phases
of development of compounds that will not become approved drugs. Prescription drug companies spend a lot
of money on marketing due to competition and generic brands. Patients need to
be sure to find a pharmacy that does participate with their insurance plan.
It can be difficult for someone with ovarian
cancer to manage their healthcare costs. First and foremost, the patient needs
to be sure that doctors and hospitals she plans to use are in her healthcare
network. Patients need to keep track of their insurance plans and their claims.
To receive a second opinion, they need to be aware of the financial risks that
may be included from their healthcare provider. Of course, if there is no
insurance, the patient can check with the hospitals financial aid department to
work out a payment arrangement. But the major issue is why they don’t have insurance.
WHY DON’T THEY HAVE IT?? I joined
the Cancer Survivors Network through the American Cancer Society so that I was
able to communicate with cancer survivors for research. I was surprised at how
emotional I felt from reading complete strangers circumstances. I noticed that
once several patients were in remission, they were terrified of recurrence. One
woman, only known on the message board as “Flame” was worried that she would
have a recurrence and not see her children have their own babies. She remarked
how the she read the survival rate to only be five years. Her plea for support
from others was not only touching, but heartbreaking as well. To read other
survivors tell her that she is an individual and to pay no mind to statistics
was very inspirational. From fears of claustrophobia during PETscan (Positron
Emission Tomography) to worrying about side effects of medication; this only
proves that even after these women have successfully “beat” ovarian cancer,
they will forever be emotionally scarred and perhaps secretly terrified that
this cancer may one day resurface in their lives. I’ve discovered it is not
only the patients themselves on these message boards, but husbands and children
seeking answers or support for their families’ private pain.
In addition to the high cost of
medication and treatment, the expenses in regards to the regular life patients
are desperately trying to maintain, become nearly impossible to finance. For
example, Diem Brown was just twenty-three years-old when she received her
diagnosis and had beautiful, long blond hair.
During her treacherous bout with chemotherapy, she lost all of her hair.
Her body was a war zone and she felt like she had her femininity “cut” out of
her and the loss of her hair only amplified her emotions. She wanted a wig, but
it was expensive. Her insurance was not going to pay for superficial items that
do not have a medical purpose. Any money she did have went to pay bills as she
was no longer able to work. Depressed and financially strapped, she came across
a girlfriend’s wedding registry while at home one afternoon. As she looked
through the list of monogrammed towels, blenders and silverware, it dawned on
her that she wished she could create a registry for patients as opposed to brides.
MedGift, is the first and only patient
registry which is similar to a bridal registry. This allows a patient
to register for all things needed for treatment and/or recovery. "Everyone
asks how they can help or what they can do," Diem said. "This gives
the opportunity for people to help a patient with medical costs, wigs,
wheelchairs and even groceries. Non-monetary items can be organized as well,
such as babysitting and transportation." For the past six years, Diem has
passionately dedicated herself to helping others suffering from cancer, a car
accident or even a war veteran in need of treatment. “I’ve been through it and
it’s hard, but you don’t have to be alone. People who love you do want to help, some just aren’t sure
how. This gives them the opportunity to see how they can help, by looking up
your registry. Instead of a wedding registry about joining two lives, this is
about fighting for a life.”
This unique gift registry initially began with
the desire for Diem to have a nice, realistic wig to make her feel pretty
again, but has grown into nationwide medical social network to inspire and
create hope in patients. MedGift is composed of three primary sections: needs,
wants and wishes. The “needs” section is related to medical expenses with
treatment and recovery. This will enable supporters to help provide financial
assistance via the secured website directly to the patient who can choose and
accept their offerings. The “wants” section is for help with wigs, meals,
magazine subscriptions and other items that may not be deemed by society as
actually being necessary. However, this still provides the patient with
emotional and physical security while coping with treatment and recovery. Finally,
there is the “wishes” section that assists the patient with childcare,
transportation and even prayer. Each patient has their own profile page where
they can update their loved ones on their health and daily successes.
The public medical policies and issues arising
from high costs of healthcare and lack of medical insurance are what inspired
Diem to initiate MedGift. This registry helps create a way for family, friends
and even strangers to contribute their money, time and prayers in consideration
of a patient. Patients should also
educate themselves on helpful patient advocacy groups such as The Patient
Advocate Foundation, where they help with medical debt crisis and insurance
issues. In addition to MedGift, knowing and understanding their insurance
benefits and researching which hospitals are in their healthcare network; can
help patients manage their expenses more easily and focus on what really
matters: getting healthy again.
