Pharma Co Asked to Follow You?

[alagirl]

Has anyone else had Roche write or call and ask to follow your particular case?  Roche sent me something this week asking if they could follow me, I believe based on the transfusion I've had and possibly the seizure.  Not certain, actually, if they know about the seizure, could have just been based on the transfusion and the higher dose of epogen.

On the one hand, I don't mind them following for research, but I get nervous that they might try to cut my tx if they get too weirded out about my side effects.

[kcrandy]

at the beginning of tx  i  had been asked and sent release forms for the drug co to follow my case as well and when i asked va to ( by signing release papers ) do this the va said in no short terms "NO". the reason was some side effects i was calling about and they wanted to keep track of my case too and when i told them that va was not going to be helpful they just blew it off.

[jmjm530]

Coming back slowly, but I did get a call from Roache early on in treatment. Can't remember if they wanted the exact same thing or it was more of an outreach program where they help you with treatment related issues. In any event, they called me -- I didn't call them -- and I do remember saying, "Thank you, but no thank you Mame".

-- Jim

[desrt]

I also seem to recall pharm cos showing interest in the tx progress of people recently infected and I believe you have said you have documentation of your recent HCV free status.

[R Glass]

Tell them to contact me. Hell, if they would cut me a deal on my meds, not only can they follow me they can sleep at my house.

[Whrose]

good thoughts. i agree!

[alagirl]

one thing that I thought of is that my data would be just as valuable to them AFTER I finish tx as during tx.  The data itself will not change.  So I may wait and give them permission either after tx, or in the last three months or so.

[Whrose]

in my visits here you have certainly captured my heart and concern...along with admiration of your strengths and endurance. (((hugs)))

i just wanted to comment that seizure is a SAE of interferon and i have known docs to pull people off treatment after having a seizure. certainly the seizure will alert your docs to consider your tx and medically determine to reason for the seizure. words of caution here in giving Roche permission to consult with your doc and access your medical records. i think it would be in your best interest to decline unless your hep tx doc knows all your seizure details and feels confident in continuing your treatment ruling out the IFN as a causal factor.

best regards    Whrose

[alagirl]

I know how they got it, lol, me and my big mouth.  Remember when I called in to ask for the extra shot of pegasys?  They were telling me about how it was going to come in a vial, could I use one of those, blah blah blah, the topic of my epogen came up, that I am able to use that just fine, and then we talked about how much epogen I'm using, and they asked if I minded answering q's about how my tx was going, and honestly, I didn't.  So that's how they got it.

But then I got a letter from them this past week and again they stressed it was voluntary, but they said that when they have patients who they feel are more high risk or who have more unusual events occur during tx they like to follow those patients in order to fulfill fda reporting requirements on adverse events experienced during treatment, and the outcomes of those events, etc.

In order to do this, they WOULD be requesting to speak with my physicians.  I'm not certain I have an issue with this, except if it would possibly impact my ability to continue to receive treatment.

[jmjm530]

I can't see how Roche would have access to your medical history -- seizure/transfusion -- if so, that would be quite troubling IMO.

More likely, this is a normal random survey kind of thing they do, although can't remember ever receiving such a letter during tx, not that I opened my mail much then.

Your concerns are very legitimate, and I would discuss them upfront with Roche, and get comfortable with the answers, before allowing them to follow you.

All the best,

-- Jim