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Posted 3/7/2015 3:44 AM (GMT 0)
Diagnosed with hep C 1a about 12 years ago. it is believed I contracted it through
air gun immunizations and the lack of sterilization in 1970 while serving in the US Air Force.
I have been waiting patiently for a better drug which I feel I could tolerate. Along comes Havoni
I'm 62 living on SSI wife is still working and has health insurance for the both of us which is a blessing as she has RA and needs monthly infusions. The insurance company denied my request for Harvoni without a biopsy. Took a biopsy 2 days ago my Hepatologist called a couple of hours ago stated I have stage 4 cirrhosis. Said his office would call and request Harvoni again with biopsy results. I still processing this news........I run 6 miles 3 times weekly and also weight lift 3 times a week, eat healthy and have not drank alcohol in over 20 years......I fell sick over this. shocked
Posted 3/7/2015 4:25 AM (GMT 0)
The important thing right now, is to push and get Harvoni. Keep your head and don't feel as if your life is over. Do whatever it takes to get the cure. Even with cirrhosis, you could live a long life, provided your diet is healthy and Harvoni eradicates the virus. Never lose hope.
Posted 3/7/2015 4:38 AM (GMT 0)
Hi, Sorry about your news. Your biopsy should do the trick. Is your liver still functioning properly?
If so The News is pretty good. I treated with cirrhosis in 2012. It was successful and now I'm in pretty good health. I'm 64 and I got infected around 68 or 69. Same as you

Get back to us when you find out. Best of luck
Barry
Posted 3/7/2015 4:50 AM (GMT 0)
Welcome to the group. See PPM's posting from yesterday. Amazing results even with cirrhosis pre-treatment! Its also so good that you have been keeping yourself in shape, not drinking and that you feel well.

Your insurance company should not give you any problems obtaining the Harvoni now that you have your biopsy. Should you face any problems, there are lots of resources to help-- including expedited appeals, plans through the drug companies, etc. If you are denied again just post and we can help you-- no need to know all this unless you need it.

We will all be routing for you. GC
Posted 3/7/2015 3:31 PM (GMT 0)
Thanks for the support. I'm still not feeling like my old self after yesterdays news. Frankly I'm really worried about this but have not let on to the wife how much I am. She said stay the course continue to work out and eat right we will get the meds and clear the virus. my liver still is functioning as far as I can tell no problems water retention etc. Being I was denied once with the new info and biopsy will it still take as long for approval as the first request for medication?

Thanks
Dennis
Posted 3/7/2015 4:24 PM (GMT 0)
tmf...let me understand...the first denial was before or after a cirrhosis diagnosis?

I ask this because Insurance companies are in a pickle...they don't have an infinite amount of money.

Over 3 million Americans (some say as many as 10,000,000), especially those your age, have been long afflicted and don't know...they did not engage in risky behavior, didn't have transfusions to be suspicious about, and have not abused alcohol, so they were mostly asymptomatic and were not even thinking about liver disease.

So, now you get a diagnosis and you get denied initially.

Because the companies are being carefully with their $$$$. They are going to approve those patients who are ILL. Their definition is those with cirrhosis. If they treated everyone who tested positive, they'd go out of business.

And, the drugs were expensive to bring to market and the retail price of those Sovaldi pills is about $1000 EACH. And they are taken with a pill that may cost as much as $800 EACH.

So, what to do. The free market is putting pressure on the price. Other drugs are coming avaiable that are slightly less expensive (I have heard only ONE pill, that is about $800...big whoop...not much more accessible that the daily $1800 for most folks.) But it is a start.

IF, you resubmitted to the insurance company AFTER the cirrhosis diagnosis, they may look at your case differently now.

IF, you don't get approved and you are not symptomatic, you have time to let this drama unfold world wide...keep a close eye on your health, continue to eat right, don't drink alcohol, and carry on. AND KEEP TRACK OF WHAT IS HAPPENING WITH THE HEP C MEDS AND YOUR INSURANCE.

This is a dreadful situation and better access to treatments is coming.

Those in other countries are having a hard time with this also...the UK is only treating the most ill. And you can't get the meds easily in AU or NZ, I know that for sure. Most provinces in Canada are still having their patients use Interferon (barbaric in my opinion). Some of the countries have HUGE public health problems with this...India, China, Egypt and there is international pressure to prioritize this issue.

You are your best advocate. Keep fighting.

By the way, look in the Resources section at the top of this forum. There is a post there with the website information for Giliad...they have a help program. See what they will do...if they will help enough it might work.

Best to you...

Hugs,

Mama Lama
Posted 3/7/2015 4:53 PM (GMT 0)
My denial was prior to the biopsy. The biopsy stating stage 4 cirrhosis.
The Dr feels I should not have any trouble for approval now as the denial was based on lack of evidence on the condition of my liver. So insurance required a biopsy prior to approval. With stage 4 cirrhosis why don't I feel sick? Could it be possible they eating right and exercising daily for the past two years slowed things down and that i could of been in stage 4 cirrhosis condition for many years?


Thanks Dennis
Posted 3/7/2015 7:00 PM (GMT 0)
TMF

You said you were in the Air Force. You are a veteran. Go to your nearest VA hospital and sign up for health benefits there. Depending on your income level, the drugs will be free or virtually free. I am a veteran also, and I pay $9 per prescription per each 30 days, or each part of 30 days. (that is I get a 2 week supply each appointment, and pay the $9 for each 14 days), including Solvaldi and Ribavirin. If the VA accepts you, and they prescribe the Meds, than its approved.

I am in my 9th week of treatment, and have had no insurance issues.
I feel very fortunate and thankful that I have this benefit, especially since I served during peacetime in the late 70's)
Posted 3/7/2015 7:27 PM (GMT 0)
Welcome to the Hep forum, Dennis.

I am sorry to hear you have cirrhosis. Hard to believe when one feels ok, isn't it? Harvoni is a great treatment and you should have very few, if any, side effects. With cirrhosis, you do want to learn what to watch for, see the best hepatologist your insurance will allow. I like those affiliated with transplant centers. Not because you need a transplant now, or ever will...but because the level of care is much better, I have found.

My husband, themister, had a routine physical at 55 years old. He had great health other than some odd, recent fatigue he figured was older age. He had a heavy labor job, ran his own company, owned horses, was strong and fit. But, that routine physical showed some bad liver numbers.

After more testing, he was diagnosed in 2005 with Hep C, and his biopsy was Grade 2, Stage 4 cirrhosis. He is GT3a. Just like that, a seemingly healthy man with a very serious diagnosis. Who knows how long he had cirrhosis before he was diagnosed?

Themister, like you, did not drink alcohol, he ate a healthy diet, was the right weight, and no one would have known he had the Hep C virus.

Things changed with a sudden, gastric bleed 5 years ago, and things started to be more difficult with each new complication. He has end stage liver disease now and the last 5 years have been rough on him. I won't sugar coat it. He is on the transplant list and we hope he soon will get a transplant.

We care. There are many here who have been where you are, and where you may travel with liver disease. Big Hugs

I failed to mention my husband did treat twice with interferon/riba. He relapsed within a month the first time, but did obtain SVR (cure) the 2nd time. So thrilled you will have a superior treatment, Dennis. Hang in there.
Posted 3/7/2015 7:52 PM (GMT 0)
Themiz thanks for the info, I pray your husband gets called soon for a transplant.

LAsurvivor, I applied for VA Health Care and with my wifes income and my SSI I exceed the income threshold which is 38k for this area. Got the denial letter from VA the same day the Dr called with biopsy results.


Dennis

Post Edited (tmf12) : 3/7/2015 1:48:05 PM (GMT-7)

Posted 3/8/2015 4:41 AM (GMT 0)
You should not have a problem, with your new biopsy, obtaining the medication through your insurance company or through the pharmaceutical company that prescribes the medication your doctor prescribes. You also should not have to wait to experience symptoms to be treated when you are in stages 3 or 4 with cirrhosis. Your doctor may submit the prescription as an expedited request. If denied, your doctor can file an immediate expedited appeal (the first level can usually be done over the phone by having your doctor call and state the urgency). The insurance company will have a very limited time to decide on the appeal. While you wait you can go through the pharmaceutical company and apply to their patient assistance program/s. Many people have been given medication through these programs even without having the lowest income level. To help you with this process you may want to call The Patient Advocate Foundation's Hep C Careline at 1-800-532-5274. They will take your basic information and a case worker will call you back. The caseworker will help you to appeal and or to apply for assistance through the insurance company.
I put together an outline after I went through the process which I am happy to share with you through email or you can search this forum for it by typing in "What to do When you are Denied Approval of Medication for Hep by your Insurance Company." It has up to date information on the Patient Assistance Programs for the new medications and the appeal process. You will not find it in the resource section.
In the meantime, it has to mean something that you feel well! And once you are on the medication and are Hep C clear, you can begin to heal damage may have been caused to your liver.
Posted 3/9/2015 6:05 PM (GMT 0)
Sorry to hear that. I hope you current health insurer reverses their decision.
Good Luck
Posted 3/13/2015 2:30 AM (GMT 0)
Tmf12- Hoping that you are moving along toward getting the medication for treatment. Like you, I had virus for a while and did not worry too much about it because I felt good and was otherwise healthy. When I decided to look into treatment last spring when the medicine became easier to take, I found through the testing that the virus had caused damage to my liver in the 5 or so years since I had last been biopsied. Once I got over that, appealed two denials for the medicine and finally began taking it, my worrying became much less.
I came upon this website today that indicates that all Vets are entitled to VA health benefits. If you are over a certain income, however, you may have to pay co-pays (like LA Survivor described). But that cost would not be anywhere near an out of pocket payment for medication. Hopefully you can get the insurance you have with your wife to approve with little cost but, if not, maybe you would try the VA with a co-pay?

www.blogs.va.gov/VAntage/586/busting-myths-about-va-health-care/

Post Edited By Moderator (themiz) : 3/13/2015 10:06:05 AM (GMT-6)

Posted 3/13/2015 4:05 PM (GMT 0)
Annual Income Threshold exceeds by a couple thousand dollars ( My wife still is working full time) they include all gross household income. So no VA care even with copays...not all veterans get Health Care as the case with the thresholds of the area one resides in. I still not received word on my meds I called my Dr he stated its still pending approval but they sent them the biopsy report. So I wait.

Dennis
Posted 3/13/2015 4:11 PM (GMT 0)
Your insurance should approve with the new biopsy. Keep us in the loop. We care. It is disturbing to know our Vets are not getting treated....for any reason. Just my opinion. Big Hugs
Posted 3/13/2015 5:55 PM (GMT 0)
I know it really makes me mad considering the Doctor said more then likely got infected by JetGun Vaccinations at time of enlistment. Check it out http://www.hcvets.com/. I'm in the process of filing a service connected claim and i don't feel bad about doing so considering their attitude but I'm sure they will
deny my claim like my VA Health Care. Thanks themiz

Dennis
Posted 3/14/2015 3:23 AM (GMT 0)
Hi Dennis.
My situation is much like yours. I'm athletic, a veteran, and have dealt with HCV since the early 90's when I was first diagnosed.
My first liver doctor was a German, complete with accent, who said a little beer never hurt anyone. Lol
I did treatment in 2000 and was a partial responder. I skipped out on the Incivek and the other brutal side effect crap that came out in 2010.
Before treatment in 2014 with Sovaldi, Interferon, and ribavirin I had a colonoscopy and EGD. Looked good on both ends. I finished the treatment and cleared the virus but relapsed.
I didn't think I had cirrhosis, but the fibrosure test I took shortly after said I did.
I don't know why my doctor didn't administer the fibrosure when I had the colon check and EGD. Stupid doctors I guess.
However, the Harvoni pill for 24 weeks is a 96% chance of cure. And no ill effects. I have taken 46 pills so far.
If you get the Harvoni, go to: harvoni.com/co-pay-coupon-registration
and sign up for a copay card. No matter your income, you will only pay $5 per refill.

I have since read that a little greater than 50% of folks with compensated cirrhosis has remarkable liver regeneration after the virus is cleared, provided they don't drink or do other ill acts toward their liver. It's been a while, but that's the way I remember it anyway. If you're curious, read my thread, I have a link about the 5th or 6th page.
Also, there are studies going on now for treatments to help with this dilemma.
It takes a while, but you will come to grips with your situation as we all do. I commend you for your excellent treatment of your body. I'm sure that will go a long way towards your recovery once you clear the virus. We are fortunate to have a cure at hand. I'm sure you will be fine and I wish you all the best.
Posted 3/14/2015 3:35 AM (GMT 0)
I thought that I would save you some trouble, brother.
The following info is from this link: www.medscape.com/viewarticle/772507_1

Cirrhosis

Background: Cirrhosis is the end result of many types of chronic liver diseases. Recent developments in the understanding of the process of hepatic fibrogenesis have revealed that the process is a dynamic one and a capacity for recovery from any degree of fibrosis including those associated with cirrhosis is plausible.

Aim: To review current evidence of histopathological reversibility following drug therapy of more common aetiologies of cirrhosis.

Methods: A PubMed search was performed and the evidence for histopathological regression of advanced fibrosis/cirrhosis following drug therapy was reviewed as of the end of February 2012.

Results: There is abundant clinical evidence in support of the idea of the reversibility of cirrhosis in patients with different aetiologies of advanced hepatic disease including viral, autoimmune and metabolic/infiltrative liver disease.

Conclusions: The concept of cirrhosis has changed from being a form of static and irreversible entity to a dynamic and reversible diseases stage. Novel therapeutic strategies are under investigation to target specific steps in the process of fibrogenesis with the aim of reversing advanced fibrosis/cirrhosis.

Hepatitis C

Several studies have demonstrated that regression of fibrosis in patients with chronic hepatitis C is associated with sustained virological response to therapy. Poynard pooled the data from four randomised trials including 3010 naïve patients with hepatitis C who had pre-treatment and post treatment biopsies. The reversal of cirrhosis was observed in 49% of patients with baseline cirrhosis.

To better define the long-term benefits of anti-viral therapy, we must take into account the likelihood of progression to cirrhosis in treated patients. Together with the amelioration of the necroinflammatory activity, the improvement in the stage of fibrosis may explain the portal haemodynamic improvement that are detected in sustained responders, changes that in turn might explain the decreased number of decompensation events observed in these patients.

It is notable that the currently available peginterferon-based therapies cannot be administered in most patients with advanced decompensated HCV-cirrhosis. The development of novel interferon-free drug regimens for the treatment of chronic hepatitis C may hold promise for the treatment of patients with advanced HCV-related cirrhosis in the future.
Posted 3/16/2015 11:06 PM (GMT 0)
Just got a call from Doctors office Harvoni has been approved for 12 weeks. Is that normal with cirrhosis i've never been treated for hep C before. Also they said the insurance company would help with setting up the copay. Is that going to be a hassle? Also filed for VA disability stating Hep C and Cirrhosis cause by Jet Gun immunizations in 1970. VA said I would have to have another exam by their Doctors, hopefully not another biopsy so soon. Got a copy of my biopsy Stage 4 Cirrhosis with Ludwig Grade 2 out of 4 so maybe that's a positive.


Dennis
Posted 3/16/2015 11:55 PM (GMT 0)
Dennis,

I always thought this would work out in your favor with the cirrhosis diagnosis. You popped to the top of the heap.

I do not think that this will be a hassle. I think you will have a copay and that the manufacturer may help youl...the numbers to call are in the resources above.

I have great confidence in the Harvoni. turn turn turn turn turn

Once Mike was clear of the virus he started feeling better...and the rest of the treatment was (in my humble opinion) to keep it away!

Some have some headaches...but you'll be fine. Drink a lot of water and do whatever the docs say.

Hugs,

Mama Lama
Posted 3/17/2015 12:09 AM (GMT 0)
TMF
Thanks for the idea about the Service and the Jet Gun.
I did an online app for service connected disability last week.
It cant hurt. I figure, lets see what they say. If no, I am in no worse; if yes, a bonus, and tax free money for life.
Posted 3/17/2015 12:22 AM (GMT 0)
I may have found a smoking gun....as they say:

www.va.gov/vetapp05/files5/0531165.txt

ML
Posted 3/18/2015 4:02 PM (GMT 0)
Well got the call from the specialty pharmacy. They asked when to deliver the meds , I said asap please. So it will be here tomorrow morning. I exercise and eat clean don't drink but have had an occasional cigar weekly.
I do take Supplements
• Multi Vitamins QD (no Iron)
• Milk Thistle 350 mg BID
• Krill Oil 500 mg BID
• COQ10 200Mg QD
• BCAA (branched Chained Amino) 8 grams
• Whey Protein Isolate 25 grams

I read somewhere that a patient taking Harvoni was told to stop Milk Thistle. Does anyone know what supplements to avoid most all my supplementation I believe will be fine. Anyone have any info concerning this?

Thanks,
Dennis
Posted 3/18/2015 4:46 PM (GMT 0)
Great news! A cure on the way for you.
IMPORTANT SAFETY INFORMATION
Warnings and Precautions
Risk of Reduced Therapeutic Effect of Harvoni Due to P-gp Inducers: Rifampin and St. John’s wort are not recommended for use with Harvoni as they may significantly decrease ledipasvir and sofosbuvir plasma concentrations.

Related Products Not Recommended: Harvoni is not recommended for use with other products containing sofosbuvir (Sovaldi).

Adverse Reactions
Most common (≥10%, all grades) adverse reactions were fatigue and headache.

Drug Interactions
In addition to rifampin and St. John’s wort, coadministration of Harvoni is also not recommended with carbamazepine, oxcarbazepine, phenobarbital, phenytoin, rifabutin, rifapentine, and tipranavir/ritonavir. Such coadministration is expected to decrease the concentration of ledipasvir and sofosbuvir, reducing the therapeutic effect of Harvoni.

Coadministration of Harvoni is not recommended with simeprevir due to increased concentrations of ledipasvir and simeprevir. Coadministration is also not recommended with rosuvastatin or co-formulated elvitegravir/cobicistat/emtricitabine/tenofovir disoproxil fumarate due to increased concentrations of rosuvastatin and tenofovir, respectively.

Consult the full Prescribing Information for Harvoni for more information on potentially significant drug interactions, including clinical comments.

- See more at: http://www.gilead.com/news/press-releases/2014/10/us-food-and-drug-administration-approves-gileads-harvoni-ledipasvirsofosbuvir-the-first-oncedaily-single-tablet-regimen-for-the-treatment-of-genotype-1-chronic-hepatitis-c#sthash.GRvX95rH.dpuf

Let us know how things go. Big Hugs
Posted 3/18/2015 9:41 PM (GMT 0)
For anybody interested in what can or cannot be taken with Harvoni all the supplements i listed are fine with the exception of Milk Thistle Dr said no herbal stuff at all. By the way BCAA stops catabolism (muscle wasting). I use it weight lifting and researching the web I found out it is very useful for people with cirrhosis.

Dennis
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