Author Topic: Newly diagnosed; waiting to see what insurance will do (Read 14855 times)

Cheryl F · « **on:** April 11, 2016, 01:00:11 pm »

Hi all; I was recently diagnosed with Hep C. and have now gotten the results from blood work.... Genotype 1b & viral load at 624,938. The doctor's office told me they would be calling the insurance company regarding treatment.... What do I do from here... I feel like I am not be proactive... but not sure what to do at this point.
Any guidance is greatly appreciated.

NYCHEPCMAN · « **Reply #1 on:** April 11, 2016, 01:53:33 pm »

Hi Cheryl and welcome!!

What insurance company are you covered by and what time of plan is it?

I have GHI (Emblemhealth) and was approved for Viekira Pack which I am now starting my 11th week of treatment and have been undetected at week 4. Like you I have 1b - which seems the new treatment works with very well and you have a relatively low viral load.

Also, feel free to provide info like your age, and if you have ALT/AST #s etc. Folks here helped me get through this - I was diagnosed in October 2015 - and hopefully on my way to being cured.....as will you.

Philadelphia · « **Reply #2 on:** April 12, 2016, 03:02:47 am »

Hi Cheryl, you're in a bit of a holding pattern until the insurance company gets back to you.
Like NYCHepman said above, see if you can find out the condition of your liver (it often comes as an F then a number, like F2 or F4, but can be expressed in different ways and people here can help you translate it if your doctor doesn't), along with your liver enzyme markers (ALT and AST). There's plenty more information to gather but that will do for now.

The genotype 1's are proving very curable! 1b has great success with both harvoni and viekira pak so the odds are in your favour. It's just a matter of getting that approval now. If they decline you first up, you appeal the decision.

Luna7 · « **Reply #3 on:** April 12, 2016, 10:41:52 am »

Hi Cheryl...
I'm right where you are...waiting for that call from the doctor, telling me if insurance approved. This limboland is very uncomfortable when I'd like to be doing everything I can to improve the situation. I decided that paying more attention to my health, like eating even better and moving around more is at least something I can control right now.

Did they tell you when they expected to hear from your insurance? I specifically asked how long they thought it could take and when I could call to check (they said 2 weeks). So if they don't call tomorrow I sure will. There are many parties involved in the approval process and communications can get lost, so although I feel like I'm bugging them with my calls I will check up on them at some point.

Cheryl F · « **Reply #4 on:** April 12, 2016, 12:20:00 pm »

UPDATE: Than you all for your information. I just got a call from Express Scripts.. (pharmacy I am supposed to use for maintenance drugs taken regularly) and was informed that they do not offer Harvoni. So I am assuming the insurance (Cigna) has approved my treatment w/ Harvoni. So Express Scripts started telling me what generic and other drugs they DO offer in place of Harvoni and that they would contact my Doctor with this information and see what my Doctor want to do. I am so lost right now.... Not really sure what to do or who is on first... I just don't think its me....
Here is the dig to all of this... I have been clean and sober for 11 months (1 year as of May 11)... I was a heavy beer drinker for the last two to three years before.. I was going to a regular doc and getting blood work every 3 months... just because thats how this doctor operated. My ALT / AST would always be borderline high or just high and I would get a call from the doctor telling me "Liver enzymes high - stop drinking alcohol". Of course I poo-pooed that advice and continued to drink. This doctor also diagnosed my w/ Hypothyroidism. But NEVER did he EVER want to test for Hep C. I did not connect all the dots until now... but as a doctor I feel like he should have back then. Anywho.... I wish I loved myself enough to start eating right and trying to make a difference myself. I battle the demons of depression and isolation as well as this Hep C thing now.... on top of staying sober. I am grateful to be alive and revel in the small things - I just can't get a grip on self love right yet. I am a fighter though... so this is not a KO.
Back to the HVC - - If insurance approved Harvoni... Express Scripts can take a hike right? I should be able to get the drug from where ever ..... right?

Coach Mike · « **Reply #5 on:** April 12, 2016, 01:09:03 pm »

Hi,
I think Express Scripts has an exclusive deal covering Viekira Pak, a much less desirable option than Harvoni, in my opinion. I know of some people who have fought them and got coverage for Harvoni, but it was a battle. To fight it and win, you will need a very supportive doctor. A doctor who will fight for you and spend a considerable amount of time doing so. Get your liver F score and have your doc write a prescription for the Harvoni. They will probably deny you prior approval, saying its not on their formulary. Keep appealing if you really want Harvoni instead of Viekira. Appeal it until you are out of appeals and then demand your external independent medical review you are guaranteed under the Affordable Care Act. That gets it out of the insurance company's hands. Get an advocate to help you negotiate the process. I highly recommend Brendan Bietry of the Patient Advocate Foundation. Just getting it to the external review can take 6 months or more.
You can get quality generics delivered to your door in a week from Bangladesh or India for a $1000. After EASL, this option will become a very desirable path for Americans.
Things are about to change.
Good Luck.
Coach Mike

Cheryl F · « **Reply #6 on:** April 12, 2016, 01:36:03 pm »

Thanks Mike....I will hopefully get the blood work results in writing via us mail this week. The initial VL and GT reveal was on the phone... so I was too nervous to ask or know what to ask regarding any other numbers!
I am getting a bit more scared as this goes along... seems like a lot of fight will be needed. But am I correct in my thinking... Express Scripts is NOT the end all of pharmacies .... If insurance agrees on Harvoni treatment, I should be able to get a Harvoni prescription filled another place...Right? But I am sensing that it is not as easy as walking into a CVS and handing them a script for it and walking out the door.... Sounds like my best chance is to get a doc like you say. I have so many questions. Thanks again.

gnatcatcher · « **Reply #7 on:** April 12, 2016, 01:49:38 pm »

Cheryl, it is common now for a particular insurance company to work with just one pharmacy to fulfill specialty prescriptions like Harvoni. Typically, expensive medicines are handled by these specialty pharmacies. In my case, my normal, low-cost prescriptions could be gotten at a regular CVS (or a Walgreens or wherever I chose), but my Harvoni bottles were always sent by the CVS specialty pharmacy. Fortunately, when the pharmacy fulfillment companies made their price deals with the Hep C drug manufacturers, CVS specialty pharmacy made its deal with the makers of Harvoni, so I didn't have to jump through the hoops Coach Mike has explained. I'm sorry you may have to, but there are plenty of people on these forums who have done so and have won their treatment of choice. Good luck!

Gnatty

Coach Mike · « **Reply #8 on:** April 12, 2016, 02:04:36 pm »

OK,
Insurance companies have a pharmacy benefit manager (PBM). Express Scripts is a PBM. That means your insurance company uses them for their specialty (high dollar) prescription medication acquisition. Express Scripts has an exclusive agreement with the makers of Viekira Pak, not Gilead, the Harvoni manufacturer.
Get your test results. My liver enzymes were ALT:225, AST: 140. That's what triggered my diagnosis. I was a heavy beer drinker as well. After 6 months of no alcohol, my enzymes were normal. Quit drinking, get a fibrosure or fibroscan and find out the condition of your liver. That's the first thing you need to do. That will give you the information you need to get approval or choose other options for treatment.
This is NOT a death sentence!!
I am not going to tell you "You are not that sick." I heard that enough to last two lifetimes. You are sick, but there are very effective cures now that have virtually no side effects in most people.
The cost of the brand name products are beyond ridiculous.
That is the problem.
Get all your data. Then your doctor can help you make the choices you need to make to get rid of this crap.
Again, the best thing you can do is quit the alcohol-it is a potent liver toxin. That will allow your body to fight the HCV without having to deal with the alcohol as well.
After you get well, if your liver is not too damaged, (which it probably isn't) you can go back to your errant ways.
Or maybe practice moderation. I love moderation. Haven't had a hangover in over two years. Have a really good craft beer after work and really enjoy it.
But only one for me.
CM

FutureThinker · « **Reply #9 on:** April 12, 2016, 03:13:05 pm »

Cheryl and Luna -- I agree with everyone's comments here. I'm one who had to go thru a state internal review to get my insurance co. to pay for the Harvoni. They preferred to have me take the Viekira Pack w/ Riba, but I was adamant not to go that route if at all possible. The riba component has a lot more side effects than options that do not use it. Lots of info on this forum from Viekira & Harvoni folks, so you can browse thru the forum and see their comments.

So I chose to fight for the Harvoni. There are now even some other options, so talk to your doctor about the side effects of all options for your genotype to help you make your decisions. Being involved in this process takes some energy, energy that you may not feel you have, but it will be worth it. Good luck to you both! The future is bright, keep that in mind -- FT

NYCHEPCMAN · « **Reply #10 on:** April 12, 2016, 03:49:54 pm »

my insurance also uses Express Scripts so at first doctor wanted me to take Harvoni but was rejected so we "settled" for Viekira. I will admit I was very upset at the time but other than it being 4 pills (3 morning, 1 evening with food) so far I can't say anything bad about Viekira as I had no sx (side effects), and working fulltime, was undetected at week 4 and my LFTs became normal. Their patient co-assistance program PROCEED was also helpful, proffessional and compassionate.

The only downsides I can think about is for those with another genotype which then would also require Riba which does have a lot of sx. Also, I've read that there has been some cases of liver failure for those with cirrhosis (so far it doesnt sound like that's an issue for you).

Philadelphia · « **Reply #11 on:** April 12, 2016, 04:39:35 pm »

Don't be too quick to diss Viekira Pak - it offers outstanding cure rates for 1bs. Damn near 100% - best in the current crop. I'd like to take those odds to the casino. If you don't have cirrhosis you don't need riba.

FutureThinker · « **Reply #12 on:** April 12, 2016, 08:21:39 pm »

So there you have it, 2 people who did just fine with Viekira. I'm just saying its best to have a full discussion with your doctor before starting any of the available treatments, to get a thorough understanding of its course. We are very, very blessed to have several good options today, w/ more in the pipeline. FT

HazelAustralia · « **Reply #13 on:** April 13, 2016, 05:51:33 am »

I was a 1A and I have no complaints about Vieira Pak.
good luck
H.

BillT · « **Reply #14 on:** April 13, 2016, 12:49:00 pm »

Hi Cheryl,
Most people with 1b and being prescribed Viekira so don't let it worry you.I was also 1b(I love using the past tense

)and made it to the SVR12 just a few weeks back.My understanding is that 1b is the easiest one to treat so you're going to do just fine.Keep us posted.

Cheryl F · « **Reply #15 on:** April 13, 2016, 02:43:31 pm »

I spoke with my doctor's office this morning and was informed that doc will appeal for Harvoni treatment. They told me to just hang tight and let them go through the approval / appeals process which could take a number of weeks.

gnatcatcher · « **Reply #16 on:** April 13, 2016, 02:56:15 pm »

Good -- it sounds like your doctor's office knows the drill. I had a similar wait while my hepatologist's staff and the specialty pharmacy that helps them went through all the steps the insurance company required. In my case, it took almost two months before I received a letter from the insurance company saying I was approved for Harvoni and should phone such-and-such a number to order the first bottle.

Cheryl, I hope you find interesting things to occupy your mind, body, and soul so you don't dwell on the wait. Given Harvoni's ease of treatment and extremely high cure rate, your brighter future has already begun.

General Hamilton · « **Reply #17 on:** April 16, 2016, 01:03:45 pm »

You can take Viekira without the Riba, but the cure rate is much lower without it. Did they already approve you for a Viekira? They might be denying the claim just because Harvoni is not covered which won't necessarily mean that they will still approve Viekira.

What is your metavir score? Here is a pretty handy guide on what you need for an approval for the insurance company.

https://www.youtube.com/watch?v=BHN7xxUBW2M

Livalil · « **Reply #18 on:** May 26, 2016, 09:29:18 am »

Stop waiting to be "sick enough" to be approved for expensive treatment. I got my meds[generic Sovaldi and generic Daclastavir] for around $2000 for a 12 week treatment for Genotype 3. 3 weeks after starting treatment I was "no virus detected" and every blood test since. You don't need your insurance company, just your doctor's prescription and her/his monitoring during treatment.

Lynn K · « **Reply #19 on:** June 02, 2016, 12:49:15 am »

Hi Cheryl F and welcome

I also have express scripts. I was able to get Harvoni through them but had to fight for it. The do require you use there specialty pharmacy for these types of meds and receive them via fed ex or UPS. They will not allow you to just go to a local pharmacy on penalty of not covering the medicine and making you pay for them.

When I was initially denied I stumbled across an email address for them that gets you to a real person who maybe can help you. If you are on Facebook Express Scripts has a FB page with many unsatisfied customers commenting about their "service" on that page I clipped this information it is the same address I contacted and wrote an impassioned email to they called me the next day and I had meds in hand the day following overnight UPS. I have cirrhosis so you may not have the same results but worth a shot. Also if you are of child bearing age that can raise your priority for treatment.

Here is the info I copied:

"Please consider sending your member ID and contact info to ExpressRxHelp@express-scripts.com"

Good luck
Lynn

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Author Topic: Newly diagnosed; waiting to see what insurance will do (Read 14855 times)