Why do you do/not do clinical trials for CFF?

L

ladybug

New member
Hey, gang!

OK, so I got an invite recently from the CF Services Pharmacy regarding a survery on why you do/do not participate in clinical trials. If you take the survey and are one of the first 200 to take it, you can donate your $25 to the CFF.

Here is the link:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.twgresearch.com/stratum/stratumhome.asp">Survey</a>

code:

10931

It took about 15 minutes cause I had a lot to say!
 
N

NoExcuses

New member
Smart survey.

I participate because I know others have before me (TOBI, pulmozyme, albuterol, HTC, The Vest).

Plus I know that if no one participates, no meds will reach the market.

I can't stand free-loaders... whether it be other countries who dont' pay their fair share with pharmaceuticals (and consequently make Americans pay more for drugs) or those who selfishly chose not to participate in clinical trials.

Don't jump down my throat - it's nothing personal if you fit into either in the above categories. They're just my pricipals.

This is why I chose to participate.
 
N

NoExcuses

New member
OH yes and one other thing.

Dr. Bell, the CEO of the CF, states that it's not money that's holding us back from new CF meds....

It's lack of CFers to participate in trials.

Now that's food for thought, isn't it?
 
L

ladybug

New member
Amy,
You're welcome. I figured we at cysticfibrosis.com have a lot to say on the matter!

Hope its working for everyone.
 
A

anonymous

New member
funny what you say Amy because I've been to 7 clinics in the US and not one of them has ever asked me to be in a clinical trial. If drug companies think we're going to saut them out I think they have the wrong idea. They need to get backing from a doctor and then get all his/her patients to participate. I personally would feel a lot guiltier turning down a clinical trial that my doctor was fully in support of.
 
N

NoExcuses

New member
no question. drug companies absolutely do not expect patients to seek them out. you are righ - that would be completely stupid.

your doc will let you know if anything trials for CF are available in your area. if none were available, then of course, there's nothing to participate in <img src="i/expressions/face-icon-small-smile.gif" border="0"> you are 100% correct!

I learned about my NIH study from the CF Roundtable site.
 
L

ladybug

New member
I found the study I was in simply by accident when doing searches for research on CFRD on the internet. It took me to the University of Utah website where they were recruiting for a CFRD study. That was the first time I'd ever heard or had the opportunity to be in a study. I think there are many CF centers that don't do very many studies, so unless you live next to one of the "biggees" that are research centers or are afiliated with a research center, you won't have as much access to trials. I still had to travel 300 miles each way for the study I was in.
 
A

anonymous

New member
Amy, your right, but I also agree with loulou,and I have never been asked to participate in a trial. I guess I wish I had. I'm a little neverous now about volunteering because my health has been precarious lately, but one i'm interested in is the aztreonam trial. I don't know why my doc has never asked me about participating in a trial.

One thing that bothers me though, would be to finish a trial and find out the drug worked great and was really helping you, but then not be able to use it for months or years. Could that happen?

John
 
S

S

New member
I was in a study back in the day for pulmozyme(i think it was that one), probably about 14 years ago or so. Well, I had never really been sick a day in my life from CF before that study and just a few months after finishing it I was in the hospital and on my first round of I.V.'s. The thought still kinda lurks in the back of my head that the study triggered something, flipped a switch, and caused the beginning of a very rough road ahead. Who knows, though, but I never joined another study again. And especially now with a 4 month old daughter I have no urge to take any more risks with my health.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>S</b></i>

I was in a study back in the day for pulmozyme(i think it was that one), probably about 14 years ago or so. Well, I had never really been sick a day in my life from CF before that study and just a few months after finishing it I was in the hospital and on my first round of I.V.'s. The thought still kinda lurks in the back of my head that the study triggered something, flipped a switch, and caused the beginning of a very rough road ahead. Who knows, though, but I never joined another study again. And especially now with a 4 month old daughter I have no urge to take any more risks with my health.</end quote></div>

Maybe you cought bugs from not washing your hands enough at the clinic where you participating in the clinical trial. Or maybe your doc didn't wash his/her hands enough.

Sanitary precautions were much different 14 years ago..... there's no way pulmozyme made you get so sick that you needed IV's for the 1st time....
 
L

ladybug

New member
S:

I totally respect your decision not to do clinical trials. But, I do agree with Amy that pulmozyme should not have made you get an infection. I've never heard that infection or exacerbation is a side effect of pulmozyme. It actually works on a cellular, DNA level, doesn't it? So, it would not really do anything to produce an infection, but instead works to restructure the DNA make-up of faulty "cells" in your lungs and make the mucus more slippery.... Now, I could be wrong about that, as I haven't looked into the biological make-up of pulmozyme, but I remember being told something similar to this years ago when I started it.


Anyway, I certainly can understand your fear, and it is entirely your perogative whether you participate or not.

We still owe many thanks to those who decide to partake in trials, however, as they help us get the drugs that help us more quickly. Whether you take part or not, it is important to realize the vital role of the study participant.
 
A

anonymous

New member
According to cysticfibrosismedicine.com, pulmozyme actually decreases lung function in around 1 in 4 people. Perhaps that happened to you, and some oppurtunistic bug took advantage of the weakened state of your lungs??
 
L

ladybug

New member
Interesting! I knew my biology lesson was a bit tweaked! LOL

Anyway, I'd be interested in knowing how it works to decrease lung function? Or, is it just a side effect in 25% of the people who take it? I've never heard of this.
 
A

anonymous

New member
NOt sure, all it says is 'In a retrospective review by Davies et al investigating the outcome of 9 months DNase therapy in 65 children with CF (ranging in age from 3-16, median FEV1 42%), up to a quarter of patients were found to have a deterioration in FEV1 while 43% showed improvement of > 10%'

Of course this is in children, so maybe its ok in adults? MAybe the deterioration is due to the Dnase simply not working and the lung function would of droppped anyway??
 
A

anonymous

New member
Until a medication can be observed through enough sujects over a COMPLETE lifespan, I don't think anyone can say what a medication is or is not capable of. Pulmozyme make work great for the many, but that doesn't mean it's impossible for it to make some sick.

Look at all those great drugs they were giving preg women, and now say WHOOPS! - sorry about that.

I was in a lot of trials as a kid (because my family was poor, and we needed the money). I am a lot more careful about participating now. If I feel that a study is of mutual benefit, not a problem.

Keep in mind that being part of the cf future is not always through official studies, either. I am taking inhaled Amikacin, which IS experimental for how I'm using it, but perhaps down the road, I can be part of that data that says 'we know this works long term'

I have to live with cf every day (as do my loved ones), and while I will go out of my way to support cf education and research when possible, I will not devote my life (literally) to it. I'm at a age where I can't say that if something goes wrong, no problem, I'll move back in with my folks.

--Wallflower
 
S

S

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

It actually works on a cellular, DNA level, doesn't it? So, it would not really do anything to produce an infection, but instead works to restructure the DNA make-up of faulty "cells" in your lungs and make the mucus more slippery.... Now, I could be wrong about that, as I haven't looked into the biological make-up of pulmozyme, but I remember being told something similar to this years ago when I started it.</end quote></div>


if that is the case, that it is changing things on a dna level, then i actually can see it triggering something.
 
You must log in or register to reply here.
Top