TOPIC:

Dear FixHepC team,

This site has a wealth of medical information and I've learned loads about Hep C.

But some of the medical lingo can be confusing.

How about a glossary section to explain all the abbreviations and initialisms? DAAs, APIs, PPIs, Tx, Dx, SVR, etc etc

Thank you for the wonderful work you are doing.

Really good idea, Joy

Seconded!

Check out the new tab on the Forum.

Please add suggestions to this thread.

Wow that was quick work...

Cracked up at 'Compassionate Access'

Thank you!

That was a cracker lol


Great work, thanks Dr!


Could I suggest 'warehoused' - The practice of keeping patients in treatment-mothballs while promising more effective drugs will be in the pipeline on a perpetual timeline of "soon"

The meaning of local abbreviations would be useful.

In the UK:

NHS = National Health Service (or alternatively = Not Happening Soon)
GP = General Practitioner
NICE = National Institute for health and Care Excellence

And:

EASL = European Association for the Study of the Liver

Also, this one's good for a chortle:


messybeast.com/dragonqueen/medical-acronyms.htm

Patient = human being in need of treatment, who often has to wait for a long time. See "warehouse".

Suggestions
Doctor code for times - 4/52, 8/52 etc
Abbreviations for drug names - SOF, DAC, LED etc. not sure if these are the normal "doctor" abbreviations.

Treatment naive?

how long into interferon and riba treatment is required to be not naive? I seem to remember they found out quickly interferon (alone) was not working for me.

how long ago would this be relevant?

the estimator programs that have been placed on this site usually seem to ask this, but my experience with interferon then interferon with riba was 15 odd years ago (and momentary at that).

fiddling with the latest program placed here (and thanks for that!) it seems to make little difference?? and the F score seems the most important, particularly from F3 to F4?



yours

J.

P.S. not sure this is all glossary stuff

Interferon alone is classified as treatment naive by the guidelines.

Interferon+Ribavirin is treatment experienced.

Failure with protease inhibitors is a special case that doubles treatment duration.

"Failure with protease inhibitors is a special case that doubles treatment duration. "

I have been inclined to agree with this all along but this is the first time I have actually heard a doctor say it. Any links that you can post on the subject would be much appreciated.

The Gilead Harvoni studies did not find that previous failure with a protease inhibitor made a difference to the 12 week duration of Harvoni tx. I do have previous failure with a protease inhibitor (telaprevir) and I have been suspicious that people are being palmed off with the 12 week duration because of the price of 24 weeks. I wonder if this has been done by Gilead in order not to lose the market of people who are protease inhibitor experienced.

Just because I'm paranoid does not mean they are not out to get me.

dt

KP

dointime wrote:
Just because I'm paranoid does not mean they are not out to get me.

dt

Uh, no. I was just spotting birds through the telescopic sights........honest!


But now I understand your questions about longer treatment in the other threads. More details may help us to help you but in this case it sounds like you need expert advice.

I have been inclined to agree with this all along but this is the first time I have actually heard a doctor say it. Any links that you can post on the subject would be much appreciated.

If you have a look at:

fixhepc.com/blog/item/34-pbs-listing-some-tears-in-heaven.html

You will find the draft Australian protocols for treatment where past failure with protease inhibitors is specifically treated as a special case in extending Sof+Dac from 12 -> 24 weeks

fixhepc.com/images/misc/HCV-DAA-Protocols.pdf

If you use the tool at fixhepc.com/decision-support

And select GT1, F0, Failed Protease+Interferon+Riba

Then the Sof+Dac suggestion will come up as 24 weeks in line with the "24 weeks recommended for patients who have failed a protease inhibitor" note in the guidelines.

I have now had a good look at these links and if I am understanding them correctly then I think I need to set the record straight.

The decision support tool shows, for a person genotype 1b, F0-F1, failed protease inhibitor+ifn+riba, that led+sof for 12 weeks = 98% SVR. It does not recommend 24 weeks for the led+sof combo. This is consistent with the Gilead trials for people who are tx experienced with a protease inhibitor.

*** In other words, my suspicions that Gilead fudged the duration of the led+sof combo have been unfounded, according to these recommendations. ***

For the dac+sof combo it is another matter. dac+sof does get a duration of 24 weeks with a 90% SVR outcome, obviously inferior to the led+sof combo for this cohort of people (protease experienced).

So that is a somewhat surprising find for me but hey, who am I to argue with it. Obviously somebody somewhere has formulated these recommendations for a reason. It would be interesting to know those reasons. One presumes that there were trials done on the dac+sof combo. The only trials I know about were the phase 2 trials done before Gilead rejected the BMS dac and decided to go with their own NS5A, ie. led. True enough, I believe that those trials were done for 24 weeks. The progress of dac has always been hindered by the lack of trial data after the split with BMS (except for geno3).

Anyway I am happy to get some clarity on this.
dt

GAJ - I hear your advice about getting expert help but don't worry. My long-suffering doc is in fact an expert of long standing experience.

I am just not the type to swallow any advice whole. I have to do my own due diligence. Well, I figure that at the end of the day it is MY body and MY life at risk so I better understand what is going on.
dt