Author Topic: Harvoni approved after initial denial/employer impact (Read 15053 times)

Blue · « **on:** January 31, 2015, 07:56:00 pm »

Greetings,

So happy to have my bc/bs approve an 8 week treatment of Harvoni after initially denying it. CVS/Caremark has received the prescription so I hope to start this week sometime. I've replayed the voice message from my Dr.'s office saying I've been approved over and over. I didn't know how emotional, joyful and hopeful I'd be. I'm grateful to everyone for sharing their journey. I've learned so much from everyone. I hope that everyone has the same opportunity soon.

I'm considering sharing with my employer that I am doing this treatment. I'm wondering if anyone has had a negative response from their employer?

Hep C, 1b, stage 1, vl 4.8m, infected 1979
Interferon/ribavirin null responder 2003

anniemybaby · « **Reply #1 on:** January 31, 2015, 08:06:45 pm »

I'm so happy for you blue im on my 2nd week of harvoni I pretty much went to hr with the news of hep c positive because GI Dr wanted me to start n FMLA due to side effects I was infected on the job at least I'm 90% sure

Lynn K · « **Reply #2 on:** February 01, 2015, 02:40:39 am »

Congrats Blue

While you are not required to tell your employer that is up to you. Really most say they have minimal side effects.

I have been in Harvoni since Nov 18th and have not told my supervisor. I did let my supervision know when I started taking Ribavirin 2 weeks ago that I was taking a new medicine that could have side effects and may need to take FMLA at some point. He only asked if I feel ok and if I need to make sure someone is watching me.

I work for a very large company and they are very sensitive about HR and EO type of things.

Good luck on treatment

Blue · « **Reply #3 on:** February 01, 2015, 07:19:10 am »

Annie,

Thanks for your input. Are your side effects severe?

Blue · « **Reply #4 on:** February 01, 2015, 08:15:19 am »

Lynn,

I hope the Ribavirin makes the difference for you and the side effects are manageable. Looks like you've been through a lot! I was pretty sick on the interferon and ribavirin when I gave that a try years ago. I definately had to listen to my body and rest at that time. Hoping for the best for you.

I'm not sure how pc my employer is but they are projecting reductions of force now and in the years to come. I've been an excellent employee but they could get two of me if they replace me so I think it becomes pure economics at some point. I'm in my mid 50's so it would be hard to find anything comparable. I actually think it might work to my advantage to let them know I'm undergoing this treatment. I'm guessing they would leave me alone and not consider me as a downside option. An odd twist of fate but I'll take it. That's why I was wondering if anyone has had a negative experience. I don't want to do something stupid.

I'm a pretty rational thinker but I'm finding this forum a great check for me. I was so overcome with pure joy when I heard I was approved. I hadn't expected that from myself. I guess I had thought there wouldn't be any chance of curing this in my lifetime. I thought they'd make me wait......until it was too late.

I'm truly grateful for everyone that has shared part of their journey. I'm lucky to have support people in my world but it's not the same as someone who has lived with this disease; done the harsh treatments and lived with no good option for so long.

Long_Haul · « **Reply #5 on:** February 01, 2015, 08:58:17 am »

Welcome Blue, and congratulations on getting your Harvoni. Best thing you can do for yourself is make sure to drink plenty of water. I drink 4-6 16oz bottles daily. rest when you can and you should be OK. Did you do Peg and Ribavirin or straight Intron A when you went through treatment? You should find this a lot easier to tolerate than what you did before.

Good luck with treatment and if you have questions, feel free to ask, most here are extremely generous and supportive. We are here to help each other.

AL

BattleTheBeast · « **Reply #6 on:** February 01, 2015, 01:04:15 pm »

Welcome Blue!

Great news for you!! Our forum and Brothers and Sisters have given you great advise to get started. We are all hear to help each other through but remember anything we share is from our experiences and not medical advise. Sometimes I think we have a better handle on dealing with the little side effects then they do but that's just my opinion

I have told my immediate supervisor what's going on but it took me a while to get to that point. Heck I just found out myself what was going on less than six months ago! I already had been approved to work from home when I told her. I had been sick for a while before I knew what was wrong. Currently my WFH is scheduled until March, after that we shall see what happens. I just hope in a month I feel up to returning to the office if I have to.

You have to do what feels right to you, you can go to HR if you need some time off and they are required by law to keep it confidential. Sad to say there is a stigma attached to Hep C which can be a little challenging to deal with. Here's to hoping that changes soon!

Mel

Lynn K · « **Reply #7 on:** February 01, 2015, 04:48:07 pm »

We all have our rights to privacy even if you have cancer and are undergoing chemo many people would not want everyone to know and even though cancer is more socially acceptable I am willing to bet cancer patients get that pulling away reaction we get when he say we have hep c. I think it is partly human nature to be afraid of people who are ill. Ever had a friend say they have HIV? How did you react?

Probably the cave man mind human reaction.

BattleTheBeast · « **Reply #8 on:** February 01, 2015, 05:38:54 pm »

That's very true Lynn, when I was considering what I wanted to do I thought about that same exact thing. What if a coworker came to me to see me they have HIV, how would I react?

Ignorance about something breeds fear. I am so amazed by the groups that have fought the fear about HIV and Aids. How many of you remember Ryan White and his story, his fight, his unbelievable courage?

How can people understand something they know nothing about and how can we do something to educate them. I truly believe education is the key here. If we want the world to change we have to help to make that happen. There will always be those who are scared, heck I am scared but once they understand what it is, how it can be spread?, how so many people have had it for decades and didn't or don't know?

Hopefully as we grow stronger and healthier we can work to fight the ignorance so that maybe the next person who has to tell their friends, families or employers won't have to face the same stigma and fear. It's going to take time but the HIV warriors did and so can we.

Mel

Blue · « **Reply #9 on:** February 02, 2015, 04:07:12 pm »

Al,

Thanks for the encouragement! I usually drink a lot of water so that will be an easy thing. I did the Peg and Ribavirin long ago. Knowing I survived that, I'm anticipating the Harvoni should be fine. I'm going to try not to push myself and to listen to the signals from my body. I stuck with my usually routines with the previous treatment, even though I felt so sick. This time, I'm prepared to lay low if I feel I need some rest or a break. Maybe a sign of aging or I'm getting smarter??

Was your Ribavirin added because you relapsed or just as a boost to the Harvoni?

I've learned so much from others sharing their stories. I'm grateful for the information and the kindness of others who are struggling to get healthy.

Mel,
Yes, I completely understand this forum is for support and the experiences of individuals are not intended to replace professional medical care. I'm finding it to be a great source of information. I have total confidence in my doctor. I found out by accident when I went in for my regular checkup at age 40 from the lab work he ordered. I've had almost 15 years of having biopsies, blood work and monitoring. I've had time to make peace with this virus existing in my body. If they only figured this out for you in the last 6 months......that's alot for anyone to deal with. I'm so encouraged when I see that you are undetected. Hopefully your body will start to heal itself and you will begin to feel better.

Lynn & Mel,

I agree that we should have our right to privacy, if that's what we choose, regarding sharing information about our diagnosis with our work places or anyone. When I first found out years ago, I shared this but I got mixed reactions. It was part of my acceptance and mental healing. I eventually got tired of everyone treating me like I was sick or that I'd made some bad choice in my life. I likely got it from a blood transfusion but really does it matter. When I moved, I made a conscious decision not to tell people. That's been ok until now. I think I felt such joy and now generally feeling a bit emotional since finding out I was approved to try the treatment because I compartmentalized the HCV to a locked place in my brain. I've cracked open the door and I'd like to tell people but I likely won't. Maybe my supervisor, maybe. I'm so happy to read the experiences of others and maybe once I rid myself of the virus, I will feel empowered to share. I agree with you Mel, I would like to fight the ignorance but for now I'm taking it day by day.

I've been on the phone working out the last details of having my medicine shipped. I had 2 pharmacies wanting to fill it. We are snowed in here in the Northeast so I may not get the delivery until Thursday.

Wishing the best for you all!

Tricia

Hepc,1b, stage 1, vl 4.8m,infected 1979
Interferon/Ribavirin null responder 2003
Starting Harvoni 2/5/15

Long_Haul · « **Reply #10 on:** February 02, 2015, 04:25:46 pm »

Hi Blue, I have been through treatment 3 times so my GI thought that was enough and wanted me to have the best opportunity to beat this. The SVR rates for Harvoni alone in naïve patients for12 weeks is between 95 and 97%. I have cirrhosis, so the recommended TX is Harvoni for 24 weeks or Harvoni/Ribavirin for 12 weeks. Since I tolerate Ribavirin, it was decided to go for the 12 week combo. I'm done sooner and it saves $$$, so I was OK with going that route. Hope you have the Harvoni in hand so you can get started.

Best wishes,

AL

Mike · « **Reply #11 on:** February 02, 2015, 04:42:31 pm »

Hi Blue,

If you went through 48 weeks of INTF+RIBV, this should be a walk in the park for you

I was part of the PEG clinical trials and that was the roughest thing I have ever been through.

Disclosing your status at work can have mixed results. I chose not to as ignorance can be bliss.

That's why I found this forum so helpful - I could discuss things with folks going through the same thing I was experiencing.

I'm a little more open now that I've cleared the virus; but it's really not a topic that I bring up (there's really no need).

The one thing I've found - it's a heck of a lot easier to say "I had Hep-C" than "I have Hep-C."

Best wishes, Mike

kate0b1 · « **Reply #12 on:** February 02, 2015, 05:49:26 pm »

@blue, welcome and best of luck with treatment, and yep anyone who has treated in the past will find this a walk in the park (well I'm not on the riba this time so way easy for me). anyway there is a ton of support here.

@mike, i want to be able to say that sooo bad

kate

BattleTheBeast · « **Reply #13 on:** February 02, 2015, 06:16:49 pm »

Quote from: kate0b1 on February 02, 2015, 05:49:26 pm

@blue, welcome and best of luck with treatment, and yep anyone who has treated in the past will find this a walk in the park (well I'm not on the riba this time so way easy for me). anyway there is a ton of support here.

@mike, i want to be able to say that sooo bad

kate

@Mike and @ Kate = ME THREE!!!!!

Lynn K · « **Reply #14 on:** February 03, 2015, 12:47:06 am »

On initially 24 weeks of Harvoni added Ribavirin at week 9 so treatment will be 9 weeks just Harvoni and 15 weeks Harvoni Riba. Basically due to my treatment history and cirrhosis of 7 years since dx. Trying to get me my best chance at a cure.

Compared to old treatments walk in the park, cake walk, easy breezy.

Good luck Blue
Lynn

Blue · « **Reply #15 on:** February 03, 2015, 09:02:05 pm »

Mike,

Yes, I think this medicine should be pretty uneventful after experiencing the past brutal treatment. It wasn't really treatment, I think of it as injecting pure poison into your body. I guess it did help some.

Must feel great to be able to be free of the HVC. To say "I had Hep-C" ......that would be Great!

I've been processing if I want to tell my employer and others in my world. I think you are very right that disclosing can have mixed results. I've already experienced this years ago in a different community. Since I can't decide, I know I have my answer, I shouldn't disclose. My son who is 18 and a senior in HS doesn't know. I planned to tell him but since reading how minimal the side effects are I'm going to spare him for now. He's a great kid and would be a support to me but I think it would be asking too much for him to keep this info. under wraps. It's a big year for him so I don't want to taint it for him. I guess I've decided I don't want others to know and I will tell my son when it seems right. Everyone's sharing has helped me to figure this one out.

Kate, thanks for the well wishes. The same goes back to you.

Lynn, so much to go through but when I see your bio, the only thing I see is 12/16 not detected. I would be so happy about that! Hope it continues to go well for you.

Blue

Hepc,1b, stage 1, vl 4.8m, infected 1979
Interferon/Ribavirin null responder 2003
Starting Harvoni 2/5/15

Julie · « **Reply #16 on:** February 12, 2015, 11:17:43 am »

I was approved for 8 weeks of Harvoni after initially being denied by Cigna. My RNA quantitative was 19 I.U. at 4 weeks. My doctor requested 1 more month. Cigna denied it. We appealed. We have also applied for a assistance from Gilead support path. I took my last pill yesterday. I'm worried that I won't be undetectable at 8 weeks, and that I'll relapse. Any ideas?

Blue · « **Reply #17 on:** February 12, 2015, 06:10:18 pm »

Julie,

It sounds like you've done everything already. Someone else may have other insights so I'd be happy to here if anyone has other suggestions as well. I may be in the same position as you if my 4 week results aren't as good as hoped. Insurance that is reluctant to pay. I'm a non responder so I should get 12 weeks but I was only approved for 8. My Doctor isn't worried and said that anyone under a 6 million viral load only needs 8 weeks, unless you have cirrhosis. Hopefully the support path will come through for you.

It's hard not to feel panic when we want the undetected. You are so close. It's very possible you've cleared it.

You may also find some information from other strands here. I know I've become more informed and it's helping me to understand the possibilities ahead.

Would you be able to share a little about your history? V?L., previous treatment etc. to give some context.

Hoping the best for you. Let us know how it goes

Blue

Hepc, 1b, stage 1, vl 4.8m, infected 1979
Interferon/Ribavirin
non responder 2003
Started Harvoni 2/5/15

Lynn K · « **Reply #18 on:** February 13, 2015, 03:08:46 am »

Blue Kinda surprised about the 8 weeks as you are a prior non responder and not treatment naive per the prescribing information sheet for Harvoni. See page 2

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

"HARVONI for 8 weeks can be considered in treatment-naïve patients without cirrhosis who have pre-treatment HCV RNA less than 6 million IU/mL [see Clinical Studies (14)]."

kate0b1 · « **Reply #19 on:** February 13, 2015, 05:59:46 am »

@blue and lynnk, i was only approved for 8 weeks at first but my doctor appealed it before i even started for the other 4 weeks (relapsed from first treatment), i think the ins co's are just trying to see what they can get way with lol, they did approve it right away (bottle 3 starts today)

kate

Blue · « **Reply #20 on:** February 14, 2015, 05:12:59 pm »

Lynn,

Yes I think the info. is pretty clear about how many weeks. I do wonder if the medical people are being given slightly different parameters for treatment or if it's the insurance companies resistance? The nurse mentioned something about new guidelines but I'm not really buying it. I'm going to talk to my Dr. at my 4 week check. I do feel like he's my advocate, to some degree. He got the 8 weeks approved after it was denied. He told me to take things one step at a time. He's doing what he has to, to get the med's.

The one thing I am sure of is that this virus is on its way out. I can't get over how great I feel after one week on med's. No joint pain.....it's gone, along with my fatigue. I can't stop smiling. I know I may have to struggle to get the final 28 days but I know it's going to happen. Just a matter of when.

I'm glad you've been able to get the med's that you need. You can't wait with a more advanced level. Hopefully you will be able to regenerate the damage and feel well. It's so good to feel good again. I didn't acknowledge how bad I was really feeling. Everyone deserves to be free of this virus that's been lurking in our bodies.

Kate,

Congrats on the 3rd bottle. Funny the things I want to celebrate anymore. I'm just happy for people. It's an amazing drug and break through!

You are right. It's the insurance company trying to see what they can get away with. Something's going to have to give. Hopefully wiser minds will work something out so everyone can work on getting better and not worry about having to jump through hoops to get it.

Blue

Hepc,1b, stage 1, vl 4.8m, infected 1979
Interferon/Ribavirin
non responder 2003
Started Harvoni 2/5/15

Lynn K · « **Reply #21 on:** February 14, 2015, 11:14:18 pm »

Good luck to you as well Blue. We are all in different places with this illness to be sure. Just sucks with the insurance companies dictating treatment based on cost vs the medical profession best clinical decisions for the individual patient

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Author Topic: Harvoni approved after initial denial/employer impact (Read 15053 times)