Author Topic: Starting Sovaldi/Olysio (Read 11503 times)

Johnny_Wayne · « **on:** May 14, 2016, 03:36:55 pm »

Though I would share my story:
I relapsed after taking 12 weeks of Harvoni back in June of last year. With my advanced liver disease this whole experience was like a kick in the stomach. My old insurance company flat refused to pay for me to be re-treated. I had to wait until last month to go on Medicare so as to seek new treatment. The doctor re-ordered resistance testing for me before proceeding with a new treatment regimen. It turns out that I had (probably pre-existing) NS5A resistance at baseline. This resistance meant that I could not be re-treated with most DAAs currently on the market, Including Harvoni, Vikera Pak, etc. Luckily I had no NS5B resistance, so this result placed Sovaldi on the table as a treatment option for me. However, for some reason my Doc did not wish to treat me with only Sovaldi/Ribavirin. Instead, they wished to do even more testing, consisting of NS3/NS4 resistance and also the infamous Q80K polymorphism. If I had resistance in any of these areas, they basically stated that we would probably hold treatment until post transplant. Well, I don't want a freaking transplant, so I sat on pins and needles for weeks awaiting the results from this round of testing. I'm telling you, I almost blew a gasket waiting on this process to complete. Last Monday, I got the good news. No NS3/NS4 Q80K resistance!! WooHoo!!!! Then BAM! Insurance denied.....This morning, I called the insurance company (Express Scripts) to find out that my treatment denial was a mistake, and everything is now approved. Today I sit here very hopeful, knowing full well that if this treatment is not successful, I will almost certainly need a transplant within 2-5 years. Nevertheless, it feels good to be receiving treatment that has been specially formulated just for my particular virus. Here's to hope!! For all of us....

KimInTheForest · « **Reply #1 on:** May 14, 2016, 04:23:03 pm »

That's great news Johnny Wayne! Congrats on being approved for your next treatment. Fingers crossed for you.

kim

gnatcatcher · « **Reply #2 on:** May 14, 2016, 07:43:50 pm »

What a relief! Here's hoping you'll get to keep your liver for very many years to come.

Gnatty

AussieRosa · « **Reply #3 on:** May 15, 2016, 04:56:17 am »

Hey, Johnny Wayne. You've sure been through the wringer lately. So glad you've got some good news regarding new treatment. Wishing you the very best of luck with it!

Johnny_Wayne · « **Reply #4 on:** May 15, 2016, 10:58:11 am »

Thanks for the kind words folks. Last year, the relapse caused the darkest, deepest, depression I had ever experienced. This depression was even worse than 2 years ago when I suddenly found out I had Hep C, and the Doc said that a transplant was my only option. This time around I am more cautious emotionally. I have learned to not count on anything until I see some proof via lab work. If SVR is in the cards for me, I will believe it when see it on paper; when the time comes; and not 1 minute before then. Well....that's my latest Hep C drama. Thanks for listening, and God Bless....

Lynn K · « **Reply #5 on:** May 15, 2016, 02:57:29 pm »

Hi John Wayne

I am about in the same boat or at least I was. I was a 3 time interferon based null responder and was found to have relapsed 12 weeks post (only test) after 12 weeks Sovaldi/Olysio treatment of 12 weeks. When Harvoni was approved I went on 24 weeks of Harvoni after fighting with express scripts. I did some reading and disused with my doctor about adding Ribavirin after I had already started. My doctor agreed so I was on Ribavirin for 15 of my 24 weeks of treatment as I also could little afford failing again.

I was diagnosed with cirrhosis in Jan 2008 and was diagnosed with grade 3 esophageal varicies I had banded. My platelet count was around 90 but now a year post treatment my platelet count has risen to 110 I hope that trend continues for me.

Anyway congrats of jumping through the express scripts hoops and best of luck on treatment. I assume you will be taking Sovaldi/Olysio for 24 weeks?

Lynn

Johnny_Wayne · « **Reply #6 on:** May 15, 2016, 03:10:17 pm »

Hi Lynn K, I have seen your story here, and I understand your struggles. Yes, I will start Olysio/Sovaldi for 24 weeks. I am over joyed that they finally admit that it takes 24 weeks to clear in cirrhotics. The whole time I took Harvoni (for 12 weeks) I felt like I was being short changed in the interest of money. I just had one of those "gut instincts" that 12 weeks was too short a course for me. So, now I sit here with a stronger Hep C and NS5A resistance to show for the efforts. I am glad that these new resistance tests are available which prevents doctors from continuing to "throw maybes" at the virus in hopes of a cure.

Lynn K · « **Reply #7 on:** May 15, 2016, 03:28:14 pm »

When I started Sov/Oly 12 weeks was the recommendation of AASLD after I relapsed in Sept 2014 the recommendation for those with cirrhosis was revised to 24 weeks too late for me.

Have you considered adding Ribavirin? I had to think long and hard about that but decided I wanted all the help I could get.

Johnny_Wayne · « **Reply #8 on:** May 15, 2016, 03:53:58 pm »

Hi Lynn, Thanks for the tip! I have mentioned Ribavirin many times, but my Hep C pharmacy Dr. doesn't like the idea. She flat out said "no". I could speak to my attending about it, but being as Vanderbilt has whole NEW departments dedicated to treating Hep C (and liver disease) I don't think my opinion would gain any traction. I am pretty sure that most major decisions are made around a conference table. Time to rant: If in the area, I would avoid Vanderbilt if possible. Vanderbilt maneuvers like a huge aircraft carrier. Over the past 7 weeks I have had to coordinate between departments myself. Normally, it takes a week to get a simple message from an NP to the attending. It takes two weeks to get blood work scheduled. It takes five weeks to get blood work back, (if they don't lose it). To be honest, my whole experience with trying to get re-treated in a timely fashion at Vanderbilt has been a nerve racking nightmare. I had already made arrangements to fire Vanderbilt and use a new GI doc next month. Luckily for me, it looks like things are finally going to work out. Next month, I will seek this new doctor's opinion about adding Ribavirin.

FutureThinker · « **Reply #9 on:** May 15, 2016, 06:10:41 pm »

Johnny_Wayne, just hang in there and use us on this forum as you need to! Our healthcare system in this country really needs some work. Sending positive thoughts for a smooth road from here on out........ FT

Johnny_Wayne · « **Reply #10 on:** May 16, 2016, 12:11:32 pm »

Well after assuring me that everything was ready, I got a call from the pharmacy today. It seems that Express Scripts has approved the Olysio but firmly denied the Sovaldi this morning. They point to an old (cancelled) Obamacare health plan that I had months ago as the primary payer. Now this one has to go back through the appeals process....

I've been in this latest fight for my life since April of last year. I am tired....I am so tired....

FutureThinker · « **Reply #11 on:** May 16, 2016, 12:19:47 pm »

Ohhhhhhhhhhhhhhhhhh, I feel your frustration! I had to fight my insurance company for almost a year and take them to the state for an IMR to get my meds. I am so sorry to hear of this unnecessary, irritating, stressful glitch in your fight to get treated. But don't give up!!!! My insurance wasn't going to budge until I complained to the state board; is this an option for you? My doctor helped me with the application. I posted on this under "Take it to the state board if you have to" back in Feb., under "Considering Treatment" when I FINALLY got BS to pay for the Harvoni.

As I said earlier, the healthcare system in this country really needs some work. Look into an independent medical review by your state insurance board to see if that's an option. They made their decision for me in ~ 30 days. FT

Lynn K · « **Reply #12 on:** May 16, 2016, 12:45:42 pm »

Hi Johnny

When I had issues with express scripts I found a back door where I was able to get help speaking directly with a supervisor. I went from denied to pills in hand in 3 days. They have a face book page I lifted this info from. I sent them an impassioned email with my info one evening they called me the next morning and I had my meds the day after via fedex.

Here is their contact info it was in response to a comment on their face book page:

We're sorry your dissatisfied and want to assist. Please send your member ID and contact info to ExpressRxHelp@express-scripts.com.-Thank you-Adam

Give it a shot contacting them this way has helped me and others get treatment.

Good luck.

PS I did some reading about relapses on the AASLD guidelines and it does look like they are recommending adding Ribavirin and possibly even interferon in some cases.

Johnny_Wayne · « **Reply #13 on:** May 17, 2016, 03:16:03 pm »

Thanks Lynn K. I sent the email. Now....I wait.

UPDATE: Lynn K, 2 hours after sending a detailed email, I got a call from the senior management team at Express-Scripts. They now understand every facet of my issues, and they will be walking my claim back through the process personally.

Thank you Lynn K!!!

AussieRosa · « **Reply #14 on:** May 18, 2016, 04:47:50 am »

So glad to hear this excellent turn of events, Johnny. I hope it's smooth sailing from now on. Lynn really has come through for people with that contact.

Lynn K · « **Reply #15 on:** May 18, 2016, 12:22:54 pm »

Great news Johnny!

So glad it worked out for you!

I found out about the address after I made a comment on an article they had on a web site of theirs. The topic of the article was reducing hep c treatment failures and I commented that one way is to not treat patients at all by denying treatment. They asked me to contact them so now I know the secret back door.

Glad the magic worked again for you

Johnny_Wayne · « **Reply #16 on:** May 18, 2016, 12:46:37 pm »

Now, 18 hours later my appeal has been approved!! Management placed an "emergency rush" on the appeal!

At the risk of sounding sappy, I can honestly say that all the good people I have met over this past 6 weeks, has restored my faith in the Human race.

gnatcatcher · « **Reply #17 on:** May 18, 2016, 01:03:59 pm »

Johnny, you (with Lynn's crucial help) just made my day. You're on your way!

KimInTheForest · « **Reply #18 on:** May 18, 2016, 01:04:57 pm »

That's great news, Johnny Wayne! So glad your appeal got approved so quickly and you can proceed with treatment.

kim

Johnny_Wayne · « **Reply #19 on:** May 18, 2016, 01:06:18 pm »

Thanks! I imagine it's pretty rare for an internet forum to host info on life and death drama.

Lynn K · « **Reply #20 on:** May 18, 2016, 01:08:17 pm »

I just wish express scripts was more available to getting help with out having to find near secret contact info

FutureThinker · « **Reply #21 on:** May 18, 2016, 02:05:56 pm »

Johnny_Wayne, so happy to hear this!!!! This is an AMAZING forum!! You made my day, too -- FT

AussieRosa · « **Reply #22 on:** May 18, 2016, 11:46:49 pm »

This is fantastic news. So glad to hear it, Johnny. May your treatment be smooth sailing and a 100% success!

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Author Topic: Starting Sovaldi/Olysio (Read 11503 times)