How I ended up testifying before the Health Care Policy
Committee on February 15th is actually a fairly short story. The day after governor Moonbeam (Jerry
Brown) signed the under 18 ban for tanning beds in California I wondered what
was happening in my home state of Missouri.
I called Samantha Guild at AIM and she caught me up on what was going on
in Missouri and Kansas. She was going
through all the prior year’s legislation and came across a bill by Representative
Gary Cross of Lee’s Summit which happens to be where I live. I called his office, his legislative
assistant game me his home number, and I called him at home and the next
morning we were having coffee and bagels at Panera. Multiple conversations later Representative Cross later he asked me if I would to appear before the
committee and testify and I jumped at the chance to do so.
Representative Gary Cross is a lucky man and I believe he
knows it. He is a cancer survivor but
that is not what makes him lucky. He has
a daughter who after years and years of tanning bed use had to have pre
cancerous growths removed and he knows how close his family came to having to
deal with melanoma. I believe the dance
team his daughter was on in college was actually sponsored by a tanning salon. I believe this is the reason why he introduced this
legislation and why he feels strongly about the issue. He started out the testimony by introducing
the bill and telling the story about his daughter. He made the point that melanoma rates were
climbing among young women and that this legislation was necessary. His daughters personal Dr. testified next
and did a great job. She told how she
tells young women all the time not to use tanning beds. It was at her recommendation that Rep. Cross
daughter visited a dermatologist who found the pre-cancerous growths and
removed them. The portly nervous as
hell token melanoma survivor was next.
All I wanted to do was not say anything stupid which I failed at. It was actually a relief that there were 3
doctors testifying which meant I didn’t have any real reason to talk science or
statistics. I certainly was not an
expert at either, even though I think I am.
I tried to keep it between 2 and 3 minutes and I think I went over but
am not sure. I wanted to make a few
points. One that there is a
disconnected between what we now know about indoor tanning and its link to
increased melanoma rates, and reality in Missouri that allows anybody to tan
anywhere at any age however many times they want. I also wanted to make the point that my
daughters at a certain age cannot go to the mall and get their ears pierced without
me being there but yet they can go tan as much as they want at pretty much any
age. The last point I wanted to make was
that we have to change the perception of what it means to go to the tanning
booth. There are known risk of using
tanning beds and we need to make sure parents and teens both know these
risk. This is where the stupid comment
comes in. The whole time I am testifying
I am pretty much staring down the chairman of the committee. Dr. Balaraman had told me that if you go too
long the chairman will just cut you off and you are done. The point I wanted to make in closing is that
one person an hour dies from this disease in the USA and that we needed to
change the perception of going to the tanning salons. Our teens today don’t give any more thought
of going tanning than they do of going through the drive through at a fast food
restaurant. Well as I am about to make
this point I see the Chairman reaching for his microphone and I am sure he is
about to cut me off. I tried to make the point mentioned above but
that is apparently not how it came out.
Either that or I was seriously misquoted by the media which unfortunately I
doubt. Seeing yourself quoted in print
is odd, even if they keep misspelling my name.
I did a brief TV interview afterwards but have no idea if any of it
aired. The stations were from Jefferson
City and Columbia. After me came Dr. Brundha
Balaraman from St. Louis U. She really
had a great presentation and did a fantastic job. I am going to see if I can get a copy of her
presentation. Her commitment to this
issue is amazing. This is her 5th
straight year of testifying before the Missouri House on this issue. She started when she was a Med student at
MU. If anybody who follows my blog lives
in the St. Louis area and needs a dermatologist I would give her a call. We talked about some of the new treatments
available and about my case some. Next came
Dr. Karen Edison, who is among other things is Chair, Dept. of Dermatology at
the University Of Missouri. She really
brought home some of the statistics of this disease and offered the one light
moment of the day. After all this
testimony on the dangers and risk of melanoma she reminded the committee
members that the MU school of Dermatology will be doing free skin exams at a
future date for all the house members who were interested. There was a nervous chuckle from the
committee members at that point. Dr.
Edison was the nicest person. We talked
a lot about my case and she really wanted to know. Sometimes people, even doctors, will ask but
you can tell they are only being polite and don’t really want all the
details. We talked about some additional
treatment options that may be available for me and my desire to never go
through anything like Interferon again.
I e-mailed her yesterday and she got right back to me. I know a department chair at a major US
University and medical school has better things to do. Nobody testified against the bill and I
believe yesterday the bill passed out of committee and will be sent to the
house floor.
I strongly encourage people to get involved in
this issue in their home states. Two
different representatives came up to me after the hearing and thanked me for
coming and Representative Cross told me that it really makes a difference when
people like me testify. They see experts
and lobbyist all day long. Testimony
from a normal Missouri resident catches their attention. To be honest I feel a little selfish after
testifying. I got way more out of this
than I gave. There were a lot of
brilliant and passionate medical minds there.
They didn’t need me. Your first call should be to Samantha Guild at
AIM if you want to get involved. She was so helpful and helped me
put my thoughts together of what I wanted to say and also prepared me for how
the hearings usually go.
Thank You Rev. Carol
I also wanted to thank fellow warrior and blogger Carol
Taylor, or as I like to call her Rev. Carol.
Maybe this comes across in my blog or not I am not sure but I am an
extremely private and introverted person.
I don’t like attention and fear public speaking the way Sampson fears
scissors. It’s very uncomfortable for me
to do. I prefer to live in the
background. I was looking for any excuse
to get out of doing this. I was going to
have to change my vacation plans which were going to cost me a day with my
daughter in Colorado as well as hundreds of dollars in change fees. Then I read Rev. Carols post titled Come Over
To The Dark Side Of Melanoma, see link below.
As I told Rev. Carol in an email earlier her timing on this
was perfect. After reading her post I
was reminded why I wanted to do this. If
had the chance to have some minuscule part of preventing just one family from going
through the hell of this disease I needed to do it. No amount of personal discomfort or a few
hundred $ in change fees was a good enough excuse not to do this. I called my youngest daughter and she
understood why I was going to have to put off seeing her a few days.
Thanks again Rev. Carol. It was with a tremendous amount of anxiety
that I logged in last night to get the results of your day at the oncologist. I was so relieved to hear the great news
that you had indeed given up Cancer for lent.
Serenity Is What We Get When We Stop Hoping For A Better
Past.
I shot that picture on my first day of vacation. It was kind of odd. I left Kansas City at 6:00 am and by 10:00 am I was staning at the botton of lift 2 and ready to snap my boots into my ski and head up the mountin for the first time in four years.
This is one of those things that I had dreamed of doing
while I was doing interferon. That first
ride up was a long lift and it took about 15 minutes. I savored every second of the
experience. The sound of my boots
snapping into my skis, the whirling sound the lift makes on the way up, the breathtaking
scenery of the mountains. To be honest I
got emotional. There were days I didn’t
know if I would ever do stuff like this again.
200 yards
into my first run I was picking snow out of my teeth and looking for my glasses
in the snow after committing the cardinal sin for skiers, I crossed my tips
while trying to remember how to turn. The
next day Rich made the trip up the mountain and I got to check buy Rich a beer
off of my list of things to do. I really
should have had the bartender take a picture.
Oh well, we can get a group one on Charlotte in November. The first round
of Kamikazes is on me.
It was great to meet Rich and we had good visit over lunch and a cold one.
That is my youngest daughter playing the piano in old town
Fort Collins. It’s funny the things I miss
about each of my children now that they are grown and gone. I miss the deep discussions I had with my son, I
miss the energy my middle daughter always has, and I miss hearing my youngest playing the
piano. I am still waiting for this empty nest thing to grow on me. The city of Fort Collins has this
program where they spread pianos out across the city and people can stop and
play them if they want. I got Sara to
play a little but when people started coming around she stopped. Unfortunately she has her dads introverted nature. I spent 5 days in Fort Collins just hanging
out. I read a lot, spent a lot of time with
my daughter, spent a lot of time in Old Town, and even stepped into the time
machine and visited Boulder for a day. I
swear I saw Abbie Hoffman there. My
first real vacation since August 2010 was a huge success. Back to work and the real world on
Monday.
But not before spending my day
today at Phog Allen Fieldhouse watching my mighty Jayhawks hammer the Missouri
tigers and claim our 8th straight conference championship. I am so excited for the game today. I get to watch a great game and hang out with my godson. Wow, this may be the longest blog post ever.
I know that public speaking is super scary, but that's such an awesome thing you did. you're actually doing something to make changes in policy--I really admire that! :)
ReplyDeleteThanks Katie. I also learned that in Missouri anybody can go and testify before these committees. All you have to do is show up and sign in. Like a lot of things the stress leading up to the event was worse than the event. Hopefully next year there won’t be a reason to do this but if there is I will be much better at it.
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