Dermatologic and Ophthalmic Drugs Advisory
Drugs Safety and Risk Management Advisory
July 12, 2004
Statement of Janey Freeman
introduce myself, I would like to thank the National Psoriasis Foundation
and the tens of thousands of people who support it for giving me the
opportunity to tell my story here today and to represent the millions of
people suffering from psoriasis.
I also need
to say that I do not have a financial interest in the company that makes
the drug we are talking about today.
ironic that I should be here today...Less than three weeks ago I was
sitting in the clinical trial research center and I had just filled out my
monthly questionnaire. I closed the
folder and went to date it and next to the date was “Patient Number
1569.” I looked at my new bottle of
pills and again I was “Patient Number 1569.” I thought. “Gee whiz, I am really just a
So today, I
want to introduce you to Patient Number 1569. My name is Janey Freeman. I live in Yantis, Texas, which is
two hours east of Dallas, Texas. I am married, have two children, and
currently work as an office manager for a land developer and insurance
agent in the area. It is as “country” as it sounds.
diagnosed with psoriasis when I was 20 years old. For 34 years I have been injected with
steroids, wrapped in tar, put under lights, zapped with machines. I have used creams, lotions, not to
mention slept wrapped in cellophane or wore gloves and socks filled with
lotion or cream. I have washed my
hair with tar shampoo and ruined a lot of towels and white bathtubs soaking
in various products.
I have also
taken methotrexate. This made me
sick two days out of the week. About
the time I was feeling better, it was already time to take another dose. I have had my blood drawn every six weeks
for 10 years and have had one liver biopsy.
is not usually life-threatening, but some of the current treatments
are. So, forced to choose between
quality and quantity, I chose quality.
my life be like had I not had psoriasis?
Let me just give you a few example.
I thought about being a model.
Most models do not have psoriasis.
Then I wanted to be a dentist.
But my hands and nails were too badly affected. I chose a field where I could sit at a
desk and be out of the public view.
I have missed a total of two years of work due to the disease. I have also turned down two promotions. I even missed my senior high school trip to Mexico because I was
scared the psoriasis would flare.
I have never had a pedicure or manicure. My best friend still cuts my hair. From my early 30’s to mid 40’s I was
single. My psoriasis was then at its
worst and I was too embarrassed to have an intimate relationship. My closet always has two sets of clothes: the regular clothes I wear when my psoriasis
is bad and my “sometimes” clothes that I get to wear when my skin is OK.
I have had co-workers move out of my part of the office. I have had nurses put on rubber gloves for
routine exams. People have even moved to
another cashier after seeing my arms and elbows.
Psoriasis hurts, the lesions bleed, and you itch uncontrollably. It is embarrassing, expensive, physically
disfiguring, and mentally exhausting.
I can’t really tell you what my life would have been like
without psoriasis, but I can tell you that today Patient Number 1569 is better
because of oral tazarotene.
The medicine I am using is not perfect, but I feel hopeful for
the first time. My plaques are clearing
– at least a 60% improvement the research center says -- and I have no new
ones. My scalp is clear and the itching
is gone. I have never been sick to my
stomach. The only side effects I have
experienced are mild joint pain and dry skin.
The first time I walked into my current dermatologist’s office
was 10 years ago. I was crying. A few weeks ago, after my last exam, we both
were smiling, excited, and hopeful.
I believe that this drug – oral tazarotene -- should be
available to patients that it might help.
With continued research and dedicated and caring physicians and staff,
we can give hope and options to those millions of people like me who suffer
every day of their life with psoriasis.
Thank you very much.