0
Dermatologic and Ophthalmic Drugs Advisory
Committee
and
Drugs Safety and Risk Management Advisory
Committee
Statement of Tyrone Gorre
My name is Tyrone Gorre and I am a
professional fishing guide and ranch hand from Newcastle , California Sacramento
I want to
say thanks to the National Psoriasis Foundation for making it possible for
me to be here today to share my story.
And I have
to say for the record that I do not have a financial interest in the
company that makes oral tazarotene.
I have had psoriasis for almost all my life. I
have tried many different treatments over the years, including UVB light,
PUVA, topical steroids, Dovonex, Tegison, and methotrexate.
My psoriasis
really started getting bad when I was about 25 or so. I had it a long time
before that, but that’s when it became much more widespread and visible on
my face and all over my body. At the time I was married and raising young
children.
Psoriasis
changed my life. I used to be a life guard and wear shorts all the time. I
gradually changed until most of my shirts were long-sleeved. I covered
myself up because I was embarrassed. At that point I had psoriasis on about
40% of my body.
My daughter
told me recently that her mother said one of the reasons we divorced was
because I did not have psoriasis before we married but I did afterwards.
She said this was a big factor in our divorce. I believe it.
I tried
Tegison to control the psoriasis. But I had to stop taking it because it
did not work that well for me and because of the side effects. Then I tried
methotrexate. This worked OK for a little while, but then I had to stop it
too because it affected my liver and blood. Then I tried PUVA light
treatments for a while. They helped a little bit but certainly did not
clear my skin entirely.
Then there
was a period of a few years when I simply played “cover up” because I did
not have regular access to health care or health insurance.
(over)
July 12, 2004
Statement of Tyrone Gorre
My name is Tyrone Gorre and I am a
professional fishing guide and ranch hand from I want to
say thanks to the National Psoriasis Foundation for making it possible for
me to be here today to share my story. And I have
to say for the record that I do not have a financial interest in the
company that makes oral tazarotene. I have had psoriasis for almost all my life. I
have tried many different treatments over the years, including UVB light,
PUVA, topical steroids, Dovonex, Tegison, and methotrexate. My psoriasis
really started getting bad when I was about 25 or so. I had it a long time
before that, but that’s when it became much more widespread and visible on
my face and all over my body. At the time I was married and raising young
children. Psoriasis
changed my life. I used to be a life guard and wear shorts all the time. I
gradually changed until most of my shirts were long-sleeved. I covered
myself up because I was embarrassed. At that point I had psoriasis on about
40% of my body. My daughter
told me recently that her mother said one of the reasons we divorced was
because I did not have psoriasis before we married but I did afterwards.
She said this was a big factor in our divorce. I believe it. I tried
Tegison to control the psoriasis. But I had to stop taking it because it
did not work that well for me and because of the side effects. Then I tried
methotrexate. This worked OK for a little while, but then I had to stop it
too because it affected my liver and blood. Then I tried PUVA light
treatments for a while. They helped a little bit but certainly did not
clear my skin entirely. Then there
was a period of a few years when I simply played “cover up” because I did
not have regular access to health care or health insurance. (over) |
|
|
|
|
DODAC/DSRMAC,
Statement of
Tyrone Gorre
Page 2
Since I had bad psoriasis for a long time and had known a dermatologist
that helped with research studies, he asked me if I wanted to participate in a
study of this new drug oral tazarotene.
I thought about it seriously. At the time, I had a nephew who
was beginning to show signs of psoriasis. He was about the same age I was when
my psoriasis started getting bad. This was the extra motivation I needed to
join the study. I was willing to do it because I wanted to answer questions
about psoriasis for myself, for my family, and for other families too.
During the first part of the study I am 99% sure I received a
placebo. There was zero effect. During the second part of the study, I received
the drug. The only side effect I noticed was peeling skin. After about week
six, I noticed the thickness of the plaques shrinking dramatically. I certainly
did not notice any depression. I was excited!
Within about four
months I was 95% clear and just had tiny little areas of affected skin. The
research clinic said I went from having 25% of my body affected to 4%. That was
a pretty good improvement, and it felt like more than that.
At the point the study ended, I had only a few patches of red
skin here and there, smaller than the size of a quarter. For the first time in
my life, I was virtually clear of psoriasis. It was amazing!
I was wearing sandles and open-toed shoes. I was even wearing a
black suit, which is amazing! A while ago, for the first time in 28 years, I
wore a tuxedo with a silk collar, with confidence. For the first time in my
life, I went to Calistoga
I used to feel bad. The amount of mental pressure that this has
released is just huge. The confidence that not having psoriasis brings
is amazing. It is so rewarding to not have to worry so much.
There are three huge things this study changed for me: One, with
psoriasis you can’t sleep because of the itching. I can sleep all night now.
Two, you are so self-conscious and the psoriasis eats at your confidence all
the time. All that changed too. Three, the constant pain and stinging of
psoriasis are incredible. It just consumes a huge part of your life. That was
gone too.
I will live with psoriasis for the rest of
my life. I am really glad I got involved in the study because it gave me hope
and it should give other people with psoriasis hope too. After more than 20 years struggling with psoriasis,
I feel like a new man using this drug. This medication has not only improved my
physical health, it has given me back my self-confidence.
One thing I hope is that this committee will do what it can to
make this drug available to patients who need it. This was definitely the least
threatening oral medicine I have tried for psoriasis. It has worked for me. I
did it for myself and for my family and for the thousands of people just like
me.
Thank you very much.