Wednesday, March 6, 2013

We Need More Options!!

Near the end of January, I was invited to Washington DC to speak about the need in the CF community for more treatment options, especially, treatment options that take less time. Here's what I said:

Good afternoon ladies and gentlemen. I want to first and foremost thank you for allowing me to be a part of this important process.

My name is Ronnie Sharpe. I’m a 32 year old CF patient. I’ve come here today to tell you about my life and what you can do to improve it. I’m a University of Arizona Alum. I’m a native of Arizona. I’m a brother. I’m a Christ follower. I’m a son. I’m a friend. I’m a sports fanatic. I’m an exercise enthusiast. I’m a business owner. I’m a cystic fibrosis patient. Most importantly, I’m a husband and a father.

I want to stress just how fortunate I feel to be able to wear all of these titles.  I have an incredible life and I am blessed to be exactly where I am today, as the future didn’t always look so bright for me when I was born with cystic fibrosis in the early 80’s.

Cystic Fibrosis, the disease, and how it affects the body, hasn’t changed over the years. It’s still the same genetic mutations, affecting the way our cells operate within our body.  What HAS changed however is the medications and the treatment options available to us over the years. I am here today, thanks to people like you helping to usher in new therapies to this community. It is these medications and medical advances that allow me to be here today, decades older than the expiration date given to my mom when I was born. It is these options that have allowed me to say “I do” to my wife and watch my daughter be born last year.

With that said however, we still don’t have enough OPTIONS, and current medications aren’t enough. We are certainly leaps and bounds ahead of where we have been, but as a community we NEED more. What works for some may not work for others, that’s why OPTIONS are so important. It’s so important that we can try a variety of medications to see what our body responds to; so we have the opportunity to put ourselves in the best position to succeed and take care of ourselves as best we can.

As the OPTIONS available to us have grown, our life expectancy has increased, our health has improved and our quality of life HAS gotten better.

And, if you ask me, quality of life is one of the biggest improvements we can ask for. Added years are important, but if you cannot live and live well than I feel there is little point in increasing life expectancy, which brings me to the something else you can bless me with today; MORE TIME.

I know many, if not all of you, cannot understand the treatment burden that CF puts on my life, but all of you can understand time, because we all value it and it’s worth just as much to you as it is to me.
Like all of you, I have a lot of things I want and need to do during a day. I need to succeed at my job. I need to do work around the house. I want to spend time singing Hokey Pokey to my daughter. I want to watch TV on the couch with my wife.

But there is one aspect of my days that I have to fit all of that around, that many of you will never understand: my daily care routine for my Cystic Fibrosis. My treatment routine, currently, dictates my days, my schedule, and my routine and in many ways, my life. I actually ran a stopwatch to give you an idea of what I’m talking about.

On Monday, I spent  3 hours 12 minutes and 56 seconds  doing cystic fibrosis related treatments and exercise. That is an average day for me. To give you an idea, that is over 22 hours a week,  over 96 hours a month and over 1,150 hours per year.  I spend 48 full days a year doing CF related treatments and exercise!!

Any treatment that I can take that isn’t a huge burden on my time really excites me. Any potential treatment option that I can take that can potentially “give me time back” excites me even more.

So today, I am asking you for those two things: More options and more time.  A positive recommendation for Bronchitol will do both.