Dermatologic and Ophthalmic Drugs Advisory Committee

and

Drugs Safety and Risk Management Advisory Committee

 

        Statement of Janey Freeman

 

Before I 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.

 

It is 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 number.”

 

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.

 

I was 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.

 

Psoriasis is not usually life-threatening, but some of the current treatments are.  So, forced to choose between quality and quantity, I chose quality.

 

What would 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.

 

(over)

 
July 12, 2004

 

        

 

 

 

 

 

 

 

 

 

 

 

      

 


DODAC/DSRMAC, July 12, 2004

Statement of Janey Freeman

Page 2

 

 

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.