Has Anyone Started a Prescription for Sovaldi yet?

[nursehepc]

Just curious. I had an appointment with my hepatologist that was rescheduled from the end of November 2013 to the end of March 2014 because they stated that actual drug availability and insurance issues would need to be worked out. They stated that all patients that have been warehoused were rescheduled for appointments in March. I note that my BCBS insurance lists Sovaldi as covered but the pharmacy management plans for specialty drugs do not yet list Sovaldi. Gilead lists several pharmacy distribution centers that currently warehouse Sovaldi but not management plans (i.e., CareMark, Express Scripts).

I called to see if I could be put on a waiting list for an earlier appointment and was told they did not yet have the drug (was an administrator so I am not sure they understood how the approved use of the drug was being distributed).

Just curious whether anyone had actually filled a prescription in the U.S. I know that over 800 prescriptions have already been written since its approval, but how many have actually been filled?

Joanne

[hepc4Sandi]

Here was that list again:

http://www.medhelp.org/posts/Hepatitis-C/Prediction-factors-for-relapse-after-treatment-with-Sovaldi/show/2234897

[hepc4Sandi]

Hi Jo, I was also reduced in my Riba dosage 1/3 the way through treatment, from 1,000 a day to -0- for 2 days, then 200 for 2 days then 600 for the rest of the second third, then up to 800 a day the last third. So like you you, never increased back to baseline weight-based dose for the duration. I was also told that the Riba does it's heavy hitting the first third of Tx. And as you know I did achieve SVR12. That being said do you remember there was a list of factors that can affect SVR, and dosage reduction was a factor. It seems so arbitrary, some people who have done everything right still are relapsing. But like we knew going in, there was no guarantee.

[nursehepc]

How disappointing for you. I am sorry. I cannot add anything more to what has already been said by others.

I hope that you do give the new combo(s) a try. I know that if I relapse, I will (that said, I have only treated once and only with sovaldi and ribavirin for 12 weeks - i.e., I have not endured what you have).

I hope you find strength. If it makes you feel any better, data suggests (with sovaldi-based regimes, riba. reduction during treatment appears to not affect SVR chances - this was told to me - I also had a riba reduction during treatment [and was never increased back to baseline for the duration of treatment])

Take care of you. Again, I am truly sorry. Jo

[DGA123]

Thanks for your kind words.  Yes, I know about the new combo for 2015.  As I posted above this was my third try and I really don't know if I want to give it another go, despite the new drugs.  I think I was sold a bill of goods that the sol/rib had very little side effects.  The solvaldi I don't think had any but I forgot about the rib and how bad it was combined with the interferon.  Back then I didn't know which was worse.  Still don't but know the rib. is very nasty, at least to me.  I did 1200 a day for three months then cut back to 900 with the doctor's okay.  He was pretty much an idiot, always forgetting who I was.  He also seemed to have little interest in how I was doing which was surprising since I was one of his very first patients to try the new drug.  He's at UCLA, buy the way, so one would expect more.

[DGA123]

Stage three but that was years ago.  Biopsy years ago as well. Fibrosis.
I will think about the new combo in 2015 but after three tries with this and the vanity of hair loss I kind've don't care anymore.  Don't take that as giving up but I'm just not sure I want to go thru any new treatment again as I thought this grand a day med was the one.

[Livelife777]

Hi and welcome
I'm so very sorry that you relapsed and I'm sure that you are devastated.
Having taken the meds for 6 months, makes it that much more difficult.
We would love to help you get thru this, and give you advice on how to proceed from here.   This is an old post from January, and I'm afraid your important post may get lost in the shuffle.
If you go to the top of the page and press Ask or Post a question, many will help you in regards to relapse.  There are others that have also relapsed and it may help to talk with them as well.   This is a wonderful community and we are here to help you get thru this.
Again, I'm so sorry about your relapse but there is big HOPE coming in a few months or so, and feel you will Def beat this horrible disease.
Take care
....Kim

[patra_]

Hang in there.  We will all get to SVR, if not this time, then the next one!

What is your Gt?  That makes a difference.  Also, what the status of you liver, are you healthy, do you have fibrosis or cirrhosis?  all of those things play into the picture.  We Gt 3s are really hard to treat, especially if we have the TT alelle, but even then, we are giving our livers a rest for that 24 weeks, which only improves our health, and allows a breather to wait/start the next treatment.

Please don't get discouraged!! Keep on keeping on.  Praying for SVr the next time!!  0at

[Ekkiemom]

I have been on So/RIBA  for 5 wks now.  First SOT draw early at three wks due to previous Tx history. VL from 11 mil to 17 nearly UND. I'm GT1a.  I have had min sides with exception to the riba rage which kicked in but manageable.

[DGA123]

3A.  Finished 6 months Sol and Rib 7/15.  Two weeks later my viral load had climbed back to 65 so I'm not 'cured'.  They say there's a 90 to 95 percent success with this but apparently not for me.  I think there's been very little study on this combo so I think their success rate might be a little optimistic. Apparently there's a new combo coming out 2015 w/o the rib. which is a horrible drug, even worse when combined with interferon.  I'm more depressed as a male I lost a ton of hair for nothing.  Now I hope some will grow back but after 6 weeks post treatment  I find I'm still losing it.

[mike716]

If your insurance doesn't approve the Sovaldi, don't hesitate to apply to Gilead for patient assistance. That's what their Patient Assistance Program is there for.

Mike

[truredhead]

Oh another thing, when I was denied for the Olysio, I called them and asked them why and they said my doctor did not give them enough info on my regimen and why I was interferon intolerant. they faxed my doc another form and she submitted the correct info and only a week after it was approved.

[truredhead]

I had the same things happen. Only I had to take the Q80k first  from Quest laboratories, then after about a month the Solvaldi approval came in and Olysio was denied. I had to appeal for Olysio and that only took about a week with my doctors help, then the Olysio approval came back approved. Only a few days went by then drug formulary called me this past Friday and my meds will be here Tues to start. I had a medicare precription supplement and they were great. I wonder if Olysio is denied once for good measure? Seems to be a recurring theme or maybe they want the Q80 results first. Has anyone got the olysio with positive results? Thank God mine was negative! dont be to discouraged, it really was not a long process. Good Luck!

[Sarah1949]

I know how you feel safetyalex. Sovaldi was just approved yesterday for me, a week after the pre-auth was sent to them from my doctor. However, they denied the Olysio. It seems there should be a dark joke in there somewhere.

So now I have to be tested for the Q80K variation. I have a lot of fear around never getting treated and dying slowly of this disease also so it is day after day of stress. If I don't get the Olysio I'm going to wait for the one pill on 10/10. Also, once the script is approved then you still have to wait 7-15 days for the specialty pharmacy to send the drugs but that is minor.

[safetyalex]

I am in Orlando Fl, and my doctor just wrote the sovaldi scrip. My insurance is from my wives job, Florida hospital employee health care plan. The scrip has been in the approval/denal process for a week, and I am going crazy wondering if it will be approved or deny. I am type1 and I am 55 yrs old . Got infected at 22 yrs old. Living with it for 33 yrs, and seeing about 17 out of about 25 of my infected acquaintances dye. I am scared that if I dont get the sovaldi scrip filled, that I will likely be killed by this hep C virus.. What kind of actions and or steps can I other then an appeals process which I dont trust anyway because the healthcare insurance company will handle the determination when it comes to the appeal decision anyway. Anyone knows, I thought I WOULD HAVE GOTTEN THE SCRIP FILL BY NOW.

[nursehepc]

My Dr. told me he had a patient that had to change insurance companies mid-treatment and ran into the same problem. He told me not to change insurance while on treatment (easy for him to say - life happens and we don't always have choices).

I wonder if Gilead can help? I am guessing your Dr has already/patient care medical management person has already reached out to them? Perhaps they will provide compassionate meds if your insurance company doesn't come through...  It is ridiculous that they would jeopardize your treatment 2/3 through.

I hope things work out. Let us know what happens. Best wishes. Jo

[topanga1954]

I have been on Sovaldi and Ribapak for 4 months. I started on 5-17-2014. to complete in November. I am Genotype 3A, so my Dr has me on a 24 week treatment.  My problem is that I had a change to my insurance from Lovelace Health Plan to Molina Medicare Advantage.  I am having the hardest time getting the Sovaldi approved this time around.  It keeps being denied and my Dr and pharmacist both have tried to tell them I was already on the treatment plan and I need to complete the full 6 months.  Now we are at the point that we have to appeal it through a 3rd party entity.  I have already received a grant for $10,000 which should cover the remainder of my treatment, but we have to do this appeal first.  I am curious if you or anyone else had any problems with their insurance on getting the Sovaldi approved.  Also, I'm wondering what happens if a person has to stop a medication before treatment is completed.  Any words of advise from anyone would be appreciated.  I have about 3 weeks left of pills to complete my 4th month of treatment.  I pray and trust that God will allow me to finish this road to recovery.

[shawnofthenw]

I ws just refuse sovaldi & elisyo This week now have to go through the appeal process. And Group Health of Washington said it wasn't due to the cost witch is B... S... I know for a fact if it was $ 200 it was have been approved.

[nan535]

Hi Mary
If he reaches 12 weeks undetected after EOT, he would be considered cured of the Hep C virus. I think we will know something by 4 weeks in his case as he was on a minimal dose of ribavirin throughout treatment.

Thank you for your prayers.
Nan

[Mmorgan856]

Nan, just came across this feed.  Im in the habit of reading old post an trying to apply the suggestions of others mainly side affect help.  Came across your recent feed.  I'm so excited for you an your husband to be close to finishing his treatment.  Since he did 24 wks,  will you know if treatment worked in 12 wks or do you have to 24 wks also.  I'm hoping for you the 3 mths.  Take care an my prayers are with everyone every night.  Mary

[nan535]

Thank you, Jo. Time will tell how this goes.  Just looking forward to his ending treatment right now.  He has been incredible throughout. I don't know many who could go through what he has gone through and keep fighting.
Prayers and positive thoughts would be appreciated.
Nan

[nursehepc]

You guys really have been through it all. I imagine when he has bouts with his HE (as I recall, infections tend to exacerbate HE), you don't get any rest at all. I know what HE and caring for someone full time can encompass. I sure hope you have support. It can make you sick.

I admire you and I know that your husband must as well (sometimes when dependent and ill - it is difficult to express continued gratitude to your caregivers even when it is felt - I know you know this...).

I know you are right that his liver has likely kept working because of treatment and that in itself is something to be grateful for, but...I still want SVR for him this round (of course) so perhaps there can be a break where your husband (and you) can recover (and make sure he is infection-free) prior to re-transplantation (which reportedly sounds like the inevitable next step). I have heard from the docs  that treatments post transplant are more effective than they have ever been and that, though they still like to see SVR prior to transplant, its not as important as it used to be. I know you know this.

Thanks for your well wishes...I am fortunate and I know this.

I am humbled by those who have endured and continue to endure... The human spirit is never tested more than when we need to live and accept those things that we can't control that can cause havoc in our lives and we can only do our best with what we can control. Not all of us can rise to that challenge...you do...

7 more days...wow...a long 6 mos have passed for you guys...

Respectfully...Jo.

[nan535]

Hi Jo
Its been while since I posted on this thread.  At the start of the thread, I posted how excited we were to get started on treatment (Sovaldi + Ribavirin).  My husband is now starting his last week (24) tomorrow. He is gt 1a and was interferon ineligible.
It has been a long and difficult 6 months on treatment for the both of us. (He is post transplant with signs of decompensation of the new liver due to severe recurrent Hep C and bile duct damage.) He has had bouts of HE throughout treatment leading to 5 falls and 5 hospitalizations due to infections.  So needless to say, we are happy that he has only 7 days left on treatment.  It was still worth it as all his labwork shows great improvement and the progression of the damage to his liver was stopped. Had he not been on treatment, he may have suffered graft loss by now.

Will he relapse or reach SVR? That's the remaining question now.  Either way.
we will continue the fight.

Jo - Hope the remaining days on treatment will go well and wishing you SVR in the near future.

Nan

[nursehepc]

Good Luck. I am wishing you the best and SVR of course!

This thread is pretty old. I finally started with Sovaldi and Ribavirin and am on day 61 of 84 days. There are alot of folks on the forum that have and or are currently treating with sovaldi, ribavirin and interferon.

Regards, Jo

I

[3ezo]

Today I started solvaldi and ribaviran for the 24 week protocol.  I have geno 3 so I guess I have to go with the long treatment but it will be worth it I hope! For those who are having troulble getting insurance approval, I hope you fight it. My BCBS turned me down initially, then only approved 12 weeks, but finally gave me the full approval. Also, Giliad (solvadi maker) has a program for those who need the drug but can't get it due to cost.
Good luck to everyone. Know that we are blessed to have been around for this treatment.