Hep C Discussion Forum

JLynch30 · Senior Member

RE: My doctor will not prescribe another 12 weeks of Sovaldi and Olysio

canythingbutaverage · Member

When i was on Sovaldi, there was a long discussion regarding the 12 or 24 week therapy and it boiled down to a few things. Similar to your first statement.

(I happen to be in that "16%" that didn't SVR 12, heck i didn't even SVR at 4 weeks, but i did 0 at week 8, and week 12 of treatment. )

My Gi, Transplant, General, and case worker went the 12 week route because it was faster to get approval, my healthcare would have been hard pressed to approve 24 week, and the likelihood that i would be within that 16%, then happen to fall within the next bracket of success at 24 week was even smaller in comparison the amount of time lost vs success rates of Harvoni.

Coupled with the fact that if you fail at 12 weeks on s/o they can approve you for Harvoni that much faster.

Your doc isn't acting uninformed.

24 weeks on Harvoni can be cheaper than 12 on S/O, depends on how the insurance handles it. mysupportpath.com will handle Harvoni, same as it did Sovaldi.

Rubye · Senior Member

Hi Duane, I'm just the opposite. If I could have daily VL tests, I'd take them. kind of joking

You are so right about possible long-term problems and I've thought about the possibility, but I guess my bottom line is that I just don't want these 12 weeks to be of no avail. I have noticed my arthritis and neuropathy have gotten worse as the days pass, and my mind has gotten so messed up it's not even worth talking about. -smiling-

Thanks for being here and for your support.

Dzdayscomin · Senior Member

12 weeks did it for me, I was never tested for VL until after tx, so therefore I have no idea when i went UND, and maybe that's a good thing. And I went on to SVR

One thing I think we all need to consider is the long term SX of this regimine too. These drugs are all still new, and a lot of people are talking (even here) of issues they are experiencing post TX, so I would keep that in mind, as this may be a good case for less is more in the long run.

Of course you go with what you feel is best, but trading one problem for another debilitating one (possibly) is not good either, especially if you don't have to. I know we are all different but I'm what you'd call a pretty bad cirrhotic and 12 weeks was sufficient. I'm wondering if I would have done 4 or 12 more weeks if the SX or post tx arthritic issues would be worse?man I couldn't imagine dealing with that.

Good luck to you which ever way you go, your happiness is the most important thing.

Duane

Rubye · Senior Member

Thank you all. I sent her an email this morning with links to sites that have the latest info and I also sent her the AASLD video where they discuss real-time results. I also asked her if I could simply go with another 4 weeks rather than the 12 I originally requested. I really don't want to do more than 4 more weeks.

The problem is I live in Oregon and the doctors here have gotten together and decided to not prescribe Sovaldi for anyone on the Oregon Health Plan/ACA. One article I read went so far as to say no one in the Willamette Valley would get Sovaldi but that was about 4-5 months back. Because I have Medicare and Medicaid I think they consider me part of this group. My actual doctor's office kept saying my insurance would not pay for it so they would not write the prescription. So, I went to the clinic where I am now and the NP gave me my prescription. I could go on, and on but the bottom line is I was pretty darn lucky to get S/O in the first place.

What's interesting is Gilead has offered Oregon a deal that is better than the one they gave Florida and about the same as the deal with the VA but Oregon refused because Gilead stipulated that Oregon would have to let anyone who needed treatment be allowed to treat in order to have the deal. Oregon presently demands that people meet certain criteria such as cirrhosis and other things before they can treat. What gets me is I don't think I should be included in this group because Medicare pays the bulk of my insurance and I have no choice but to take the Extra Help. You can't just say you don't want it. Kind of crazy if you ask me but it is what it is I suppose.

It took me months of OC reading and research to figure out what was going on when my doctor kept saying insurance would not pay. In the long run, tenacity paid off.

Matt Chris · Guru

Hey Rubye

I have seen this type of uninformed doctor before, my advice is to email him or snail mail the latest trial studies report and ask him nicely to reconsider your request.

matt

Isiscat2011 · Guru

My doc actually did not know the SVR rates for cirrhotics in the ION-2 studies. She was looking at overall SVR rates which is what this doc appears to be doing. Mine is a well trained Hepatologist who treats HCV every day! I still like her, but man, you have to know this stuff yourself because they don't always keep up.

They sometimes think retreating is no big deal. Aside from the actual health risks we cirrhotics face, failing tx is mentally devastating. Everybody should have the best odds they can get and getting the best odds often does mean longer tx.

Tig · Admin

Hi Rubye,

I would impress upon your doctor that the financial decision isn't his to make. Regardless of the rates of success, which by all means is important, shouldn't supersede the recommended guidelines. Can you request a sit down with your doctor and armed with the current guidelines, impress upon him that you would rather follow those recommendations and not his? Perhaps he hasn't had an opportunity to discuss treatment with someone that is informed on current guidelines and actual rates of success. It's worth a try. Good luck.

Tig

Isiscat2011 · Guru

Hi Rubye:

I can only suggest you show your doc some real world results, and tell him that the FDA and drug manufacturer recommend 24 weeks, if you wish to pursue 24 weeks. Cirrhotics should be given every opportunity to SVR because the stakes are as high as they can be.

This study showed SVR 12 at 84%:

http://www.ajmc.com/conferences/AASLD2014/The-Real-World-Experience-With-Simprevir-and-Sofosbuvir-Based-Regimens-in-Hep-C-Treatment

Here is the video where the Hepatologists discuss the S/0 real world results. At slide 13 it shows SVR 12 at 75% and 76 % for cirrhotics even where riba was used:

http://s318638489.onlinehome.us/files/aasld2014/

Rubye · Senior Member

It's not the insurance Tig but rather my doctor. They say it costs too much money and that my odds are 93% of clearing even with my cirrhosis.

Fireman Rob · Senior Member

Hi Rubye,

Not sure what your stage of liver disease is but with Harvoni on the market, I'm not surprised Your doc won't go 24 weeks of S/O. Remember, it doesn't matter when you become UND on this combo and an early UND result has proven to NOT be a predictor of success. We've seen many Cirhottics achieve SVR with 12 weeks and yes, real world results are around 90%. Your chances of SVR have never been better on these meds.

Don't sweat it too much as you're almost don't with tx! That's great news. Good luck and keep us posted.

-Rob

Tig · Admin

Hi Rubye,

Sorry you've been given this news, but I hope you do try and keep your spirits and hopes up. You're on a very effective protocol and the odds are good. I recommend you use our search function and search "AASLD". I found all of our recent discussions and links available there. You should be able to find the data you spoke of there. If not we'll get busy and help you find it. Presenting them with the new guidelines and having your doctor file a letter of appeal might help and is the avenue we see used most often.Let us know how this progresses.

Tig

Rubye · Senior Member

Any suggestions?

One of the medical assistants just called me and said my doctor will not give me an extra 12 weeks of Sovaldi and Olysio. I complete my original 12 weeks on December 17 but was not undetected until week 8. They are saying that my chances at SVR are 93% and when I told the MA that's not correct for those of us with cirrhosis she had nothing to say. They also say that if I should fail this tx that a new tx with Harvoni would be cheaper than another 12 weeks with S/O and of course the MA didn't know that you need 24 weeks with Harvoni when you have cirrhosis.

I have Medicare with Extra Help and this may be the reason they don't want to give me another 12 weeks but I really wish they would just say that then give me stats that I know they know are not correct.

I'm trying to write her back but can't even remember where any of my supporting links are now. I thought I had bookmarked the AASLD video on real-time stats for SVR but can't even find it. Does anyone have any ideas on how I might proceed? Thanks.

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