Tuesday, December 21, 2010

Why don't you do clinical drug trials?

I know I've talked about it before on RSBR, but I just have to talk about it again: Clinical Drug Trials.

Today was my first visit for the new trial that I'm on which will be studying the effectiveness of inhaled Levaquin. I'm super excited for this one, because last year I did an inhaled Cipro study and Levaquin is the "cousin" of Cipro. Why am I excited? Because, and this is "off the record" and completely my opinion, I felt like a million bucks and my lung function increased (mind you, I very well could have been on placebo...doubt it.) Anyway, I'm hoping to have the same great experience with this inhaled antibiotic and I figure if I don't, somebody else is, so it's a win-win in my mind!

I thought I'd list a few reasons you should be doing clinical drug trials:

If not you, then who? If you're one of those peeps who champions a "cure" and does not actively search out drug trials, then let me be frank, you're talking out both sides of your mouth. We will never have a cure without clinical trials. And more immediate, we'll never have better medicines to help control the symptoms. So no more cure talk if you're not willing to put your money where your mouth is.

Speaking of money, you get paid. It's almost too good to be true. You can get paid to do medicines that can potentially increase your lung function? Yes. At the very worst, you get cash money to puff on some saline or pop a sugar pill. This is easy money if there ever was some.

You learn more about CF. Now maybe I've just been blessed with a great research coordinator or maybe she's just wicked smart, but I've learned so much about how drugs work and the anatomy of CF. And to be honest with you, the more you learn about CF, the more you realize that we have a lot more control over this thing than we give ourselves credit for.

You're taking control of your health. Doing a clinical drug trial is just another way of taking control of your health. It's another way of being active and not settling for "the cure" to come to you (when I speak of "a cure", I'm not speaking of our genes being corrected and our cells working properly, I speaking about us being our own darn cure by what choices we make in our lives). It's up to each and every one of us do to everything possible to put ourselves in the best position to succeed.

I could go on and on about the reasons you should be doing a clinical drug trial, but I'll step off the soapbox and save you from my diatribe. On a serious note though, get involved!! Stop thinking about all of the reasons you won't do one, and just do it all ready. That is, unless you can come up with a reason that doesn't sound like a total lame-o excuse, which I am more than willing to listen to.

Which leads me to my next question, why don't you do clinical drug trials?

Comments (33)

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So glad you posted this, Ronnie! This was a MAJOR focal point at the Minnesota Conference. I heard over and over and over again that there are tons of options in the pipeline but we have a relatively small pool of guinea pigs. Not calling anyone a guinea pig...but you get the picture. The only way to advance a drug further through the pipeline is to test it on the people who will benefit from its development. Docs in MN were really excited about all the possibilities coming through but they need people to step up.

Thanks for the post. Puff away!
k.
I would be in for it, but here in Ontario Canada they dont do it :(
1 reply · active less than 1 minute ago
Can I just say it's HELL for kids. Especially the long ones. We sign up for practically everything we qualify for under the sun, moon and stars. But its hard. Trinity is almost done with the year long hypertonic saline in infants. Phew.
3 replies · active 745 weeks ago
Where do you find out about available trials? Does your clinic just let you know about the one they're involved with?
3 replies · active 745 weeks ago
I have looked into clinical trials. The closest study is usually 60+ miles from my home. Working full time, I can't fit it all in with such a long drive. My health and finding a cure is important to me, but in reality, I can't stop working to participate in these studies. I can be active in the CF community in other ways. I dont think that makes me "talking out of both sides of my mouth," Some times, these things are not completely in our own control. I love ya Ronnie, but your judgement against others in this blog post is a little harsh.
2 replies · active 745 weeks ago
My main reason(s) are type of infection and sometimes iv use and next my lung function sometimes. I would love to do one, but i can never get past the chronic infection qualification. And luckily i dont have a job so i could drive the 4 hours one way to do the check ups when required.

My doc is "under the table" kinda doing a test with cayston and my b. Cep, im doing it 3 months straight without switching to tobi. I think thats kinda like the one to see if cayston effects b. Cep too
2 replies · active 745 weeks ago
Emma (3) is currently doing one that is a year long for hypertonic saline in children under 6 years of age. I would say the hardest part for us is that it has added another hour a day onto her vest treatments. That is a long time for a 2-3 year old to sit there. But if it will help her or someone else in the long run... then it is completely worth it!
1 reply · active 745 weeks ago
love love love love LOVE doing clinical trials! sooo many great benefits for yourself and the CF community in general. i did the TOBI study and pulmozyme back in the day before they were FDA approved and I have participated in the Cayston trial and am now on the second part of the Vertex VX-770 study. I jump at the chance to participate in anything that I am eligible for. No other way new treatments and cures are going to be found unless you practice on the subject itself!!
Aidan is in every trial he's eligible for BUT his high FEV actually disqualifies him from quite a few. He is only 6 but measures in the 140-160's FEV which really is hard to figure out what that actually means. Does Levaquin help with MRSA?
1 reply · active 745 weeks ago
We ask at every clinic and I research to see if there are any that our daughter qualifies for..so far nothing. I am ready when she does though. We want to get a jump on a new drug if possible. Praying for that cure and wanting to do our part in bringing it!!
1 reply · active 745 weeks ago
Unfortunately, there have been very few clinicals trials that I have qualified for. I have been actively seeking opportunities for years and just finished the inhaled mannitol study but I am constantly asking my doctor to consider me for any and everything that our clinic may be involved in. I have also written to a few research companies directly about possibly considering me for trials. I just think that in some ways this post made it seem that it is just plain and simple and trust me, it isn't always. I would jump at the chance to participate in anything that would help.
2 replies · active less than 1 minute ago
Spencer really wants to be involved with clinical trials - main reason he does is because he never qualifies for them. So many more issues than just the lungs. Kidneys and liver are big problems as well and so that takes him off the list for possible trials.

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