Help GENENTECH plan future CF Programs

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jerry

New member
Hi everyone!

Here is the link I was talking about earlier...
This is an anonymous questionaire that Genentech (makers of pulmozyme) has to help plan the needs of people with CF and caregivers.

Please take 5 minutes to fill out - it can only help us!

Let everyone know as the deadline is August 4th<a target=_blank class=ftalternatingbarlinklarge href="http://www.surveymonkey.com/s.asp?u=781242372175">Genentech Survey</a>

http://www.surveymonkey.com/s.asp?u=781242372175

Thanks
jerry
50 with CF
 
E

EnergyGal

New member
I just completed the survey. It was neat. I put in cysticfibrosis.com site as my internet highway for information to learn about other CF research.
 
N

NoExcuses

New member
I hope everyone in this website got the questions right as to what exactly each of your meds do!

We have all talked about it so many times we should all represent this site well in our understanding of our meds <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

Scottius

New member
Whoa, I didn't know there was going to be a test on that survey! Hope I didn't fail. <img src="i/expressions/face-icon-small-confused.gif" border="0">
 
C

chantelfox

New member
Hey everyone, ok, this may sound a little weird, but I did the
survey and read the question about "how important is Pulmozyme
in your health" (or something to that effect) and I instantly
thought maybe it was some conspiracy to find out how many people
really depend on their product so they could then hike up the price
(then maybe insurance wouldn't cover it?) Oh man, I am so weirdly
untrusting, especially of the pharmaceutical companies.  Ha!
ok any thoughts?...Is there anyway they could use this info against
us??? Hold our meds hostage..lol!
 
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NoExcuses

New member
the survey is clearly about the newest issue of hypertonic saline vs. pulmozyme. many docs, unfortunately, think that they are equivalent and are taking patients off of pulmozyme and puting them on HTS for cost savings.

Clearly, however, the meds play two different roles. And Genentech wants to see if any of us get what the two different roles are.

Pulmozyme actually breaks down the mucus to make it thinner. Hypertonic saline irritates the airways such that we are forced to cough more than we normally would to expel the mucus.

In terms of being warry of pharma companies. Thank GOD that Genentech decided to do research on a CF drug. Pulmozyme was the 1st new CF drug out in like 15 years when it come to the market back in the mid 90s. This drug improves lung function dramatically and reduces hospitalizations.

Genetench is probably just seeing if it needs to do a better job educating docs and patients on the differences between the two drugs. That's my suspision.

This is a business just like any other business (and anyone who thinks differently is sticking their head in the sand). So they do market research. They have a sales force. And they want to make sure that the end users of the med understand why they're taking it.
 
L

LouLou

New member
On the contrary Chantel, I think IMHO that the survey mainly had to do with CFers use of hypertonic saline (the first competitor to pulmozyme that I'm aware of). They are trying to gauge how the patient feels about their product vs. HS and are trying to still understand if there's room in the marketplace for both (which of course there is). Hypertonic saline being very inexpensive will likely give them a run for their money and could bring down the cost of Pulmozyme (Walmart syndrome). Genentech does such great things for CF, I am happy to help them in any way possible (well maybe not anyway but you get the idea!)
 
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chantelfox

New member
Oh ok, well that makes sense Lauren. Gosh I hope they don't decide
to stop making Pulmozyme. I really feel that it helps me and I
would be a lot worse off without it.
 
M

miesl

New member
The only problem is - there really wasn't a good place to say...

Not on Pulmozyme because it did not work well for the patient.
 
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