Author Topic: Started Harvoni-New to Forum (Read 19739 times)

Cecil Michael · « **on:** November 22, 2014, 10:55:32 am »

A little history: I had hepatitis in August 1973 (17 y/o) that was diagnosed A, but I suspect it was actually C considering IV drugs were involved. One of my close friends was Dx prior to that with Non A B and another friend died from liver failure secondary to hepatitis. Had an epiphany(spiritual) resulting in a change of lifestyle, finished high school and joined the ARMY for 3 years, 2.5 in Europe. Returned to US earning undergraduate and doctoral degrees; I am in healthcare.

Prior to being Dx in 1999 (life insurance physical) I would have occasional bouts of fatigue and would have right upper quadrant pain after consuming alcohol. I also recall my liver enzymes, during yearly physicals would be slighty elevated; my PCP told they were close enough to normal and never tested beyond that. The 1999 Dx made since then and explained the abnormal liver enzymes.

Saw a GI doc in summer of 1999 and had a number of tests including a biopsy that showed stage 1 portal fibrosis and grade 1 chronic inflammation. Have had 2 since with the most recent in summer of 2012; findings remain unchanged. My genotype is 1a.

You all know that when you get the Dx you think death is imminent or at least close. Once I educated myself I realized that I probably would not check out anytime soon, but certain things needed changing like: no wine with meals and not an occoasional stout beer-no alcohol period. I decided against interferon/riba as the probability of an SVR was not very high with genotype 1a. I also did the Lloyd thing for a short time (supplements) and increased my running and weight lifting. Further I made a conscious decision that this disease would not control my life and I would push myself physically. Prior to 1999 I had fell in love with trail running and tried out some mountaineering. I have 2 summits on Rainier and a winter summit on Whitney on the mountaineers route. I have completed numerous 100 mile, 50 mile, and 50k runs. This was my way of saying; Hep c you will not kill me.

Since Dx I gradually eliminated supplements and focused more on an anti-inflammatory diet, which is essentially Mediterranean. However, I could sense the disease was slowly affecting my quality of life; energy level, mood, achiness, sleep, motivation. My liver was holding its own, but this disease is more than just a liver disease. My goal was to maintain my health and hope that one day a treatment with a high probability of success would emerge.

I took my first dose of Harvoni last night. I felt a bit tired and my skin felt funny, but this morning I woke up 6 am ready to go; probably placebo that I felt so good, but now I have hope and an SVR is likely in my future, as it is yours.

I have my first labs in 2 weeks and will post my baseline and my 2 week outcomes; I am on a 12 week treatment. Not sure my baseline viral load, but I think I prefer 12 over 8 even if I was below 6 mil.

Mike

gea · « **Reply #1 on:** November 22, 2014, 11:16:54 am »

Hi Mike
Welcome! I started Harvoni on 11-17 and my viral load was under 1,000,000. Doctor suggested 8 weeks and insurance company actually requested 12 ! Wow, a company that wants to spend more money! I somehow feel better with the 12, might feel different if I was experiencing harsh side effects but since that's not the case, bring on 12 weeks and SVR ! Good luck to you !

penny · « **Reply #2 on:** November 22, 2014, 01:10:44 pm »

Cecil how did you get 12 weeks with naive?

Cecil Michael · « **Reply #3 on:** November 22, 2014, 01:52:19 pm »

I don't know; maybe my baseline viral load was > than 6 million or my GI requested 12. I will request my baseline numbers next week and post them. My viral load in 1999 was 1.8 million, but I never had it measured again until 4 weeks ago.

Lynn K · « **Reply #4 on:** November 22, 2014, 05:42:23 pm »

Hi Mike

I see Rainier every day when it isn't cloudy anyway lol. Welcome to the group. I started Harvoni last Monday for 24 weeks I would race you but I guess I am on the 10K run.

Best of luck to you
Lynn

dragonslayer · « **Reply #5 on:** November 22, 2014, 08:25:09 pm »

Hey Mike,

My history is not unlike yours. I was also likely infected in the early '70s when I contracted what was diagnosed as Hep B, which was acute for about 6 wks forcing me to take that semester off, after which I returned, although this time, being a lot more careful about my illicit activities surrounding infectious behavior.

A few years later I cleaned up my act. Fast forward to 2008 when, during a normal physical, my new doctor decided to investigate my mildly elevated liver enzymes at which time I was diagnosed. I had a biopsy a few wks later which scored stage 0 grade 0. I had another middle 2013 and the results were similar at stage 0-1, grade 0-1. I consider myself very fortunate that the disease has not progressed beyond this, but I was becoming increasingly concerned that because of the relative health of my liver, Id never get approved for Harvoni.

Yesterday, after having convinced myself Id either have to try and get total Gilead buy in, or Id have to go private pay, in the mail arrives my insurance approval for 2 mos treatment! To say I was shocked would be an understatement. The specialty pharmacy my hepatologist uses shows the prescription in-process, and if all goes well, the first month should be shipped to me next week.

After reading all of the experiences folks have had with insurance denials, Im at a loss to explain why some are approved and some arent. Maybe its because my vl is under 6 mil only requiring 2 mos treatment; maybe its my age; and maybe my doctor wrote a bangup letter in support. I guess Ill never know, but I feel incredibly fortunate. Im not real happy about how, now that this wonder drug is finally approved for use for all GT 1 cases, after all this time, now that it's available to all, it's being rationed. Hopefully they will find a way to extend coverage to all that need it.

Cecil Michael · « **Reply #6 on:** November 24, 2014, 07:02:35 pm »

Baseline labs performed early October 2014:

Viral load: 1.5 million
ALT: 49
AST: 42
Total bilirubin: 1.7

romashka20 · « **Reply #7 on:** December 07, 2014, 01:32:13 am »

How did you get approved for Harvoni by your insurance. Blue Shield denied me twice. The appeal was also denied! I don't know what to do. I have fibrosis 0-1
and genotype 1a. Treatment naïve.

romashka20 · « **Reply #8 on:** December 07, 2014, 01:33:56 am »

Mike, is there a way to find out what your doctor wrote in the letter?
For the insurance approval I mean.
Thanks.

Lynn K · « **Reply #9 on:** December 07, 2014, 02:12:59 am »

Hi Romashka20

Did they send you a letter with the reason for the denial?

Also you should contact My Support Path it is prescription support from the maker of Harvoni. Call HARVONI Support Path at 1-855-7-MYPATH (1-855-769-7284).

https://www.harvoni.com/request-information

They will try to get your insurance to cover you but if that doesn't work they are proving Harvoni free for people who qualify. They are there to help.

Good luck
Lynn

Cecil Michael · « **Reply #10 on:** December 07, 2014, 02:30:35 pm »

Romashka

I was not informed about the approval process. The only information I received was a letter from BCBS about the approval and the specialty pharmacy I would need to use.

The baseline tests consisted of a: chest x-ray, EKG, abdominal US, and labs. The labs alone were close to $4000, but insurance adjusted this down to less than $700. My out of pocket was about $100 for the test. I will say in the 15 years of monitoring this disease I never provided so much blood, like 14 vials. But this is also the first time for treatment.

The advice about My Support Path is where I would start. Don't stop trying to get approval.

Mike

Bucky · « **Reply #11 on:** December 07, 2014, 03:30:36 pm »

Cecil Michael,
I am surprised at the amount of testing that BCBS required. It looks like an evasive tactic to me. Is BCBS telling us that Harvoni causes cardiac problems?
Something smells and it isn't the fishes!
Bucky

Cecil Michael · « **Reply #12 on:** December 07, 2014, 04:55:48 pm »

I have no worries about cardiac or other issues. I take my 16th pill tonight and the only sides have been occasional headache and tiredness. The only way I can physically sense any changes since starting treatment is the abatement of right upper quadrant pain. That alone tells me the drug is working.

I work about 45 hours per week and still stay on my normal exercise routine of walking/running 5-6 days per week and my Mediterranean style diet. Had labs last Friday (12/5/2014) and should get results this week. I suspect my VL will be significantly decreased; I will post labs once received.

Mike

romashka20 · « **Reply #13 on:** December 07, 2014, 07:13:07 pm »

Cecil.
What insurance do you have? I might be switching from mine, Blue Shield.
May be they approved your med because your viral load was pretty high?
mine is 785,000. I don't know. I will be calling mypathsupport and my insurance on Monday to see what is going on.
Thank you for the info.
Let's keep in touch.

romashka20 · « **Reply #14 on:** December 07, 2014, 07:16:56 pm »

Lynn,
thank you for the info.
I will be calling everybody on Monday.
I received the first denial letter from Blue Shield,
Then UCSF sent the appeal to Blue Shield.
And Walgreens Specialty pharmacy called me that they denied that also.

Bucky · « **Reply #15 on:** December 07, 2014, 07:31:44 pm »

romashka20,
Does Express Scripts handle your med coverage? I would guess that the issue is your low fibro score. It would be more cost effective for them to treat now with 12 weeks rather than wait till later and you have to do 24 weeks.
Bucky

Lynn K · « **Reply #16 on:** December 07, 2014, 08:56:48 pm »

Hi Romashka20

I have BCBS with prescription drug provider Express Scripts and they use Accredo for speciality Pharmacy services i.e. Harvoni.

I was also turned down and getting very frustrated with their customer "No" service when I found an article on their peer to peer area about preventing Hep C relapse. I made a comment as to how they are best serving a customer with hep c when they deny medications. They sent me a message to contact them at ExpressRxHelp@express-scripts.com and provide my contact info. So I sent them a long email describing my medical situation and mentioned I was frustrated to the point of contacting the media to bring to light their indifferent attitude to the health of their subscribers.

They called me promptly the next morning at the time I said I would be available. The next day at 8 AM I received my first bottle of Harvoni.

That email address is an end run around the gate keepers on the phone lines. Did you get a denial letter? It should have the reasons you were denied coverage.

One person here contacted the address and had the same experience as I did meds in hand the next morning.
It is worth a shot here again the magic key:

ExpressRxHelp@express-scripts.com

Good luck
Lynn

scorpio · « **Reply #17 on:** December 07, 2014, 10:44:09 pm »

Crongrats cecil!!! Please do post your labs as i love seeing dramatic drops in vl.... Makes me feel like river dancing

PaulG · « **Reply #18 on:** December 07, 2014, 11:09:18 pm »

Mike

Glad to see you were approved for harvoni and on the road to recovery. I've had hep c for years 60's early 70's and never had it treated . On my 4th week of treatment and pretty easy time,just a spike in blood pressure and is now under control with meds. Hard to understand why some get approval easy and others don't. Mine was approved first try with five dollars co pay.
Hope everyone gets approved and cured. How things have changed

Cecil Michael · « **Reply #19 on:** December 10, 2014, 09:18:37 pm »

Started Harvoni 11/21/2014; pre-treatment viral load 1.5 million

Labs repeated 12/5/2014; got results today and undetected. All I can say is I cried and I was shocked. I really hope this for everybody. Next labs in 6 weeks.

Mike

Shovelhead · « **Reply #20 on:** December 10, 2014, 10:13:20 pm »

Hi all,
Got a call today from a specialty pharmacy today out of the blue. They tell me my dr is recommending I take Ribivirin with my Harvoni (5 weeks into Harvoni) .
My dr never mentioned anything about this at my 4 week blood test VL was zero.
Has anyone else been suddenly placed on Ribivirin midway thru treatment?
If so, what was your dr's explanation?
Wish I would gotten a call from my dr letting me know vs some specialty pharm calling me out of the blue! A bit unsettling, since I took it with interferon 10 years ago a wanted to die that treatment was horrible! I made it clear that I would never do these drugs again, would rather die.

JillLynn · « **Reply #21 on:** December 11, 2014, 12:48:39 pm »

Shovelhead....I haven't heard of anyone doing the Ribivirin with Harvoni. hmmmmm......
Are liver enzymes elevated? I know you said your VL is undetected. Just wondering why too?

If you find out...please let us know.

I hear ya ... I did the PEG/RIB twice. Each time for 48 weeks. TREATMENT FROM HELL!!!!!! Totally hear ya there.

Best to you.....Jill

Shovelhead · « **Reply #22 on:** December 11, 2014, 02:59:30 pm »

Thx Jill. Got a call into my dr to get details.

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Author Topic: Started Harvoni-New to Forum (Read 19739 times)