Btw John: You probably already got this but I do not agree at all that you should wait to address this issue. And, as far as diplomacy is concerned, where your health is concerned diplomacy may have to take a second seat. People who don't have cirrhosis may not understand the urgency to clear the virus.
You can make your point without being rude but when your health is at stake who cares about your doctor saving face or getting her ego bruised? If it is between her face and your a**, well, you know which one to save.
Tig said
Nov 14, 2014
Sure seems like solid advice from everyone John. I hope your healthcare team see's the light and the accuracy of the information you provide them. Give them Isis's contact info, she'll set them straight!
Tig
Isiscat2011 said
Nov 14, 2014
Miss B wrote:
Since you are in an HMO, the dr. is your advocate but is also the $employee$ of the HMO & sometimes I wonder if that limits how much they are willing to push to get their patients what they need?
Interesting point. Under their own rules of professional conduct who they work for should have no bearing on their medical decisions for their patients. When they violate ethical rules and/or breach the standard of care they can be held individually liable.
In reality, most now work for huge medical corporations and/or HMOs and this creates huge potential conflicts of interest. Throw in some of their relationships with the pharma and insurance industries and you have a big old conflict of interest mess just waiting to happen.
One other thing I wanted to say about 12 vs 24 weeks. There are some docs who actually prefer 12 weeks not only for cost containment reasons but because they believe 24 weeks will result in overtreating the majority of patients. This point of view is not without merit because if ~85% will SVR in 12 weeks then ~85% would be overtreated at 24 weeks. Given that long term tx effects are not yet known that is not an unreasonable position. OTOH, it might be better to overtreat all cirrhotics rather than potentially undertreat some; they have too much to lose if undertreated. Opinions?
Miss B said
Nov 14, 2014
John,
Overall, that's great news! You're going to get treated
Obviously, as everyone has said, with your history you *must* have 24 weeks. However, only you can decide if you should correct this error now or after your first week of treatment. Who knows if you ask them now, they might decide they will need more time to consider approving a 24 week course that will cost them twice as much as 12 weeks? Maybe once you have started treatment you might have a better chance of pointing out the obvious error of only 12 weeks? It has to be presented diplomatically so the dr. can save face & be your advocate. Since you are in an HMO, the dr. is your advocate but is also the $employee$ of the HMO & sometimes I wonder if that limits how much they are willing to push to get their patients what they need? Only you know your dr. well enough to decide the best way to proceed.
Good luck!
Isiscat2011 said
Nov 14, 2014
P.S. During the AASLD seminar last week the docs were polled on tx protocols/durations for hypothetical patients. ~ 1/3 of them--hepatologists in clinical practice--got the wrong answer for most questions! Can you even believe that?
Isiscat2011 said
Nov 14, 2014
In addition to being cirrhotic and tx experienced (including PIs as I recall--he has had multiple txs) John just completed a round of Sovaldi so potentially he's got some Sovaldi RAVs and will need longer Ledipasvir to mop those up.
IMO, doc's have no business requesting a lesser duration when that is not the protocol. WTF? Do they work for the insurance companies now? She may just not know. Some docs still seem to think the protocol is 12 weeks for cirrhotics; the clinical trial results can be difficult to interpret. You have to comb through them with a fine tooth comb. They should know better but not all do.
Groupergetter said
Nov 14, 2014
John, please listen to the advice of Isis and Ro. Being cirrhotic 24 weeks helps to assure success. As Isis said, take the Harvoni prescribing label and Ion 2 study results. Plead if necessary. We both know there are NO guarantees. It only makes sense to try and get the most effective treatment possible . Good luck.
John, one other thought. Most doc's have a very good idea of what the insurance company will approve. If the doc has a reasonable certainty the insurance won't approve more than 12 weeks that may be part of his/her reasoning.
-- Edited by Groupergetter on Saturday 15th of November 2014 01:02:50 AM
Ro said
Nov 14, 2014
John,
You NEED to talk with her.. the protocol is what makes the treatment a success.. based on your history of cirrhosis 24 weeks it is!!! and Riba is not necessary! If necessary print it out and bring it with you!
I truly hope all things work out for you.. I hate that with all we go through with this illness, we are made to jump through such hoops!
praying
Ro
Isiscat2011 said
Nov 14, 2014
John:
I'm just going to be blunt here. You have been through too many failed treatments and had too much crappy medical advice already. If your doc only writes the script for 12 weeks it isn't going to be approved for 24. Your protocol is for 24 weeks. Call her office immediately before they send the pre-authorization paperwork in and tell them to correct this.
Isiscat2011 said
Nov 14, 2014
JLynch30 wrote:
She offered me 12 with Ribravirin today
Counter-offer 24 without riba.
That is the protocol for tx experienced, cirrhotics. She should know that by now! If she doesn't show her the Harvoni label; show her the ION 2 results.
JLynch30 said
Nov 14, 2014
She offered me 12 with Ribravirin today
Ro said
Nov 14, 2014
Hi, John,
I am cirrhotic, failed treatment twice..and will be on harvoni 24 weeks...1 down, 23 to go!..so far was worth the hassle of getting it....virtually no side effects so far....
keep trying!
Ro
Isiscat2011 said
Nov 14, 2014
JLynch30 wrote:
Go in for blood tests today and then the doctor will order it. Anyone know how long it takes after bloodtests for doctor to call int eh prescription? They couldn't give me an exact time. Any cirrhotics getting 12 weeks or is it all 24?
Hi John:
It could be a couple of weeks or it could be a couple of months. It isn't as easy as the doc calling it in. It must go through the pre-authorization process and there are any number of ways it can be delayed. Based on your prior Sovaldi experience it could potentially even be denied and you will need to go through the appeal process. While I would expect you will eventually get it please be prepared for some obstacles. If you get it fast, great, but that isn't happening often. Tx experienced cirrhotics should be approved for 24 weeks pursuant to Gilead's own labeling which was FDA approved.
Tig said
Nov 14, 2014
Hi John,
Its hard to determine the time frame for delivery, that's all on the specialty pharmacy after the doctor submits the Rx and it gets approved. It shouldn't take long.
Since you're cirrhotic and failed treatment on Sovaldi after 12 weeks, I would expect 24 weeks of Tx.
Tig
JLynch30 said
Nov 14, 2014
Go in for blood tests today and then the doctor will order it. Anyone know how long it takes after bloodtests for doctor to call int eh prescription? They couldn't give me an exact time. Any cirrhotics getting 12 weeks or is it all 24?
John,
I totally agree with Isis!
Ro
Btw John: You probably already got this but I do not agree at all that you should wait to address this issue. And, as far as diplomacy is concerned, where your health is concerned diplomacy may have to take a second seat. People who don't have cirrhosis may not understand the urgency to clear the virus.
You can make your point without being rude but when your health is at stake who cares about your doctor saving face or getting her ego bruised? If it is between her face and your a**, well, you know which one to save.
Sure seems like solid advice from everyone John. I hope your healthcare team see's the light and the accuracy of the information you provide them. Give them Isis's contact info, she'll set them straight!
Tig
Interesting point. Under their own rules of professional conduct who they work for should have no bearing on their medical decisions for their patients. When they violate ethical rules and/or breach the standard of care they can be held individually liable.
In reality, most now work for huge medical corporations and/or HMOs and this creates huge potential conflicts of interest. Throw in some of their relationships with the pharma and insurance industries and you have a big old conflict of interest mess just waiting to happen.
One other thing I wanted to say about 12 vs 24 weeks. There are some docs who actually prefer 12 weeks not only for cost containment reasons but because they believe 24 weeks will result in overtreating the majority of patients. This point of view is not without merit because if ~85% will SVR in 12 weeks then ~85% would be overtreated at 24 weeks. Given that long term tx effects are not yet known that is not an unreasonable position. OTOH, it might be better to overtreat all cirrhotics rather than potentially undertreat some; they have too much to lose if undertreated. Opinions?
John,
Overall, that's great news! You're going to get treated
Obviously, as everyone has said, with your history you *must* have 24 weeks. However, only you can decide if you should correct this error now or after your first week of treatment. Who knows if you ask them now, they might decide they will need more time to consider approving a 24 week course that will cost them twice as much as 12 weeks? Maybe once you have started treatment you might have a better chance of pointing out the obvious error of only 12 weeks? It has to be presented diplomatically so the dr. can save face & be your advocate. Since you are in an HMO, the dr. is your advocate but is also the $employee$ of the HMO & sometimes I wonder if that limits how much they are willing to push to get their patients what they need? Only you know your dr. well enough to decide the best way to proceed.
Good luck!
P.S. During the AASLD seminar last week the docs were polled on tx protocols/durations for hypothetical patients. ~ 1/3 of them--hepatologists in clinical practice--got the wrong answer for most questions! Can you even believe that?
In addition to being cirrhotic and tx experienced (including PIs as I recall--he has had multiple txs) John just completed a round of Sovaldi so potentially he's got some Sovaldi RAVs and will need longer Ledipasvir to mop those up.
IMO, doc's have no business requesting a lesser duration when that is not the protocol. WTF? Do they work for the insurance companies now? She may just not know. Some docs still seem to think the protocol is 12 weeks for cirrhotics; the clinical trial results can be difficult to interpret. You have to comb through them with a fine tooth comb. They should know better but not all do.
John, please listen to the advice of Isis and Ro. Being cirrhotic 24 weeks helps to assure success. As Isis said, take the Harvoni prescribing label and Ion 2 study results. Plead if necessary. We both know there are NO guarantees. It only makes sense to try and get the most effective treatment possible . Good luck.
John, one other thought. Most doc's have a very good idea of what the insurance company will approve. If the doc has a reasonable certainty the insurance won't approve more than 12 weeks that may be part of his/her reasoning.
-- Edited by Groupergetter on Saturday 15th of November 2014 01:02:50 AM
John,
You NEED to talk with her.. the protocol is what makes the treatment a success.. based on your history of cirrhosis 24 weeks it is!!! and Riba is not necessary! If necessary print it out and bring it with you!
I truly hope all things work out for you.. I hate that with all we go through with this illness, we are made to jump through such hoops!
praying
Ro
John:
I'm just going to be blunt here. You have been through too many failed treatments and had too much crappy medical advice already. If your doc only writes the script for 12 weeks it isn't going to be approved for 24. Your protocol is for 24 weeks. Call her office immediately before they send the pre-authorization paperwork in and tell them to correct this.
Counter-offer 24 without riba.
That is the protocol for tx experienced, cirrhotics. She should know that by now! If she doesn't show her the Harvoni label; show her the ION 2 results.
She offered me 12 with Ribravirin today
Hi, John,
I am cirrhotic, failed treatment twice..and will be on harvoni 24 weeks...1 down, 23 to go!..so far was worth the hassle of getting it....virtually no side effects so far....
keep trying!
Ro
Hi John:
It could be a couple of weeks or it could be a couple of months. It isn't as easy as the doc calling it in. It must go through the pre-authorization process and there are any number of ways it can be delayed. Based on your prior Sovaldi experience it could potentially even be denied and you will need to go through the appeal process. While I would expect you will eventually get it please be prepared for some obstacles. If you get it fast, great, but that isn't happening often. Tx experienced cirrhotics should be approved for 24 weeks pursuant to Gilead's own labeling which was FDA approved.
Hi John,
Its hard to determine the time frame for delivery, that's all on the specialty pharmacy after the doctor submits the Rx and it gets approved. It shouldn't take long.
Since you're cirrhotic and failed treatment on Sovaldi after 12 weeks, I would expect 24 weeks of Tx.
Tig
Go in for blood tests today and then the doctor will order it. Anyone know how long it takes after bloodtests for doctor to call int eh prescription? They couldn't give me an exact time. Any cirrhotics getting 12 weeks or is it all 24?