Author Topic: Important Info for Anyone Who Has Been Denied (or is Considering) HCV Treatment (Read 26079 times)

lporterrn · « **on:** December 03, 2014, 07:39:30 pm »

Forum member, Elizabeth Faraone wrote this and has given permission for me to reprint it. She advocated for herself, and just started treatment. I think it is valuable info.

If a doctor tells you that you medical insurance won't cover the cost of the medicine and he/she refuses to proceed further, tell your doctor that you can walk him/her through a way to get the medicine. If he/she still refuses to help, seek out another doctor. Don't let the knowledge that you may have to advocate for yourself keep you from getting treatment. You might find a doctor who will make everything easy for you.

Here was the order of events for me:

1. I found a new doctor that loves his patients (rich and poor alike) and wanted to help me get treatment. I saw him on Oct. 16. I will be his first Harvoni patient. He believes it is a "medical necessity" for all HCV patients to get treatment with the new safe and effective medicines.

2. My doctor called in the prescription to my pharmacy.

3. My insurance company said they would not cover the medicine.

4. I called my insurance company. They told me my doctor was required to submit evidence for a pre-authorization. I called my doctor's office and told them this. They told me they knew and were working on it.

5. I then called Gilead (855-769-7284) and enrolled in their prescription assistance program (Gilead Support Path http://www.mysupportpath.com/). They instructed me to download their form and fill it out.

6. I downloaded the form, filled everything out that I could (I even filled in the prescription (Harvoni) and dosage). All that was left for me to do was have the doctor complete the form (sign his name and give his ID numbers).

7. On Nov. 4, I gave the form to my doctor and he was more than happy to sign it.

8. On Nov. 5, my doctor's office faxed the form (with supporting documentation of my poverty and my lab results that indicated my viral load) to Gilead.

9. My doctor was then required to have a "peer to peer" discussion with the insurance company's medical doctor that denied the request, and the insurance MD once again said, "no."

10. On Nov. 26th, I received a phone call from my doctor's office telling me that Gilead would be sending me the medicine and had approved 6 months of treatment.

FOR PATIENTS WHO ARE COVERED BY INSURANCE BUT CAN'T AFFORD THE COPAY, contact http://www.panfoundation.org/

UndetectableC · « **Reply #1 on:** December 04, 2014, 12:34:20 am »

Thank you, Elizabeth! This is wonderful!

BattleTheBeast · « **Reply #2 on:** December 07, 2014, 09:09:12 am »

Way to go Elizabeth. Honestly, I have been reading the posts from many people who have no given up and continued to advocate for themselves. I do believe finding the right doctor has a ton to do with it.

There is always a way if you don't give up. I don't know if it's possible but it would be great to put together a list of doctors who have gone the extra mile for us in our quest to battle the beast but it could be really helpful for others. I've seen so many great ideas and ways people have pushed for their own treatment, maybe we need a topic about ways to advocate so it's easy to find for others.

Just thinking...

~Mel~

sjking · « **Reply #3 on:** December 08, 2014, 07:16:14 pm »

Thank you so much Elizabeth. I will persist. I like the idea of contacting Gillead, but I wonder how little I have to make to qualify? Regardless, that seems to be the way to go.

Has anyone had lucky with Express Scripts?

I have been denied twice and I thought it was United Heath Care, but they don't service my prescriptions. I have Express Scripts and they are really fighting giving Harvoni to anyone. This is an article I found and it seems like they will are waiting playing a cat and mouse game, hoping the price will go down. I think they will try to put some of us on AbbVie but I worry since I am a non-responder to pegintron +ribavirin.

http://lab.express-scripts.com/insights/specialty-medications/harvoni-orphan-drug-pricing-for-a-nonorphan-drug

BattleTheBeast · « **Reply #4 on:** December 08, 2014, 07:28:17 pm »

SJKing,

You have to email the magic express -scripts people. They are a miracle!

ExpressRxHelp@express-scripts.com

They have helped a couple of us already get through the BS!

Mel

Here's the post from Lynn K about it:

Quote from: Lynn K 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

sjking · « **Reply #5 on:** December 08, 2014, 07:51:19 pm »

Lynn I can't believe how fast someone responded! Wow, I sure hope that works for me. Thank you so much for taking the time to post a reply. I'm going to try that email for sure.

sjking · « **Reply #6 on:** December 08, 2014, 08:03:06 pm »

Lynn, Express Script denied because they said the doctor has not documented that I have hepatic fibrosis score of a Metavir Stage F3 or F4, plus no extra hepatic manifestations, etc.... in other words I'm not sick enough. It also states that I'm not a healthcare worker who is in contact with blood or needles.

This jives with their memo!

Lynn K · « **Reply #7 on:** December 09, 2014, 02:41:37 am »

I have a friend who was just diagnosed who is treatment naive and with little fibrosis. I have been wanting to see it he was able to get Harvoni even for 8 weeks.

I have cirrhosis and I was denied because they thought I was a partial responder to Sovaldi. I did take Sov/Oly and relapsed 12 weeks post. I did resapond on treatment it just wasn't long enough is my thinking.

I wrote an impassioned email to that address and got called the next day.

It is absolutely asinine and *%!@@!*&!## ridiculous to not permit a patient without F3 F4 to treat and instead be made to wait untill you are F4 and harder to treat and must treat for 24 weeks. That makes absolutely no sense to me.

Did you try writing that email anyway? Or was that their response to your email?

If not just argue that treating now is more cost effective and ask them what they think you should do the as they refuse to help a customer. Grrrrr they make me SO angry...

I am thinking they are trying to stall the less sick until the AbbVie 3D combo is released in a couple of weeks as they are hoping it will be more or less the same effectiveness and bottom line for them hope it will cost less.

All I can say is Those Ba*****s!

Sorry for venting about your situation,

Best to you
Lynn

BattleTheBeast · « **Reply #8 on:** December 18, 2014, 07:45:41 am »

Lynn,

I am F4 as well and now moved over to Harvoni because of my reaction to Olysio. I did the S/O for 9 full weeks and went right over to Harvoni. I am curious how long Express Scripts approved your Harvoni for. I have 5 refills but they only approved me through early March which isn't going to be long enough to get all 5 refills.

Trying to figure out when I should start battling them for the 8-12 weeks I won't be able to get because of the end date on my approval.

Mel

Lynn K · « **Reply #9 on:** December 19, 2014, 06:58:14 am »

Hi

I am approved for 24 weeks. I completed 12weeks of Sovaldi Olysio in June and relapsed by September. I started Harvoni on 11/18 so I had not treated for 5 months from early June to mid November.

Good luck hope you are having less side effects this time around

BattleTheBeast · « **Reply #10 on:** December 19, 2014, 07:37:23 am »

Hi Lynn,

I am 100% better without the Olysio in the mix, that medication and I were not a good combination. I am starting to feel human again although I am scared to say that because I have been so yucky since May. Just trying to go with the flow and enjoy every good minute I get.

How are you doing?

Mel

Lynn K · « **Reply #11 on:** December 19, 2014, 11:45:04 pm »

Hi Mel
Glad you are feeling better without Olysio. I guess I am not very drug sensitive. I didn't feel any different on Sov/Oly than off just worried about the sun. Ditto for Harvoni nada ting to report. Just waitingfor my next 136 pills and be done with it hopefully for good this time.

Best to you
Happy Holidays

Chelle · « **Reply #12 on:** January 20, 2015, 07:45:38 pm »

Hello everyone-
My insurance company (a PPO) denied treatment with Harvoni. Gilead Support turned me down because our combined income is greater than their threshold. My doctor and the CVS Pharmacare Rep were so helpful finding alternatives for me. If your doctor isn't helping you with treatment options, don't give up. There's some great resources on this forum for getting help.

I cried today after learning my insurance company has approved Olisio & Solvadi!

My co-pay is an unbelievable $10 per month.

Thank you for all of the positive comments about the treatment on this forum - definitely not always the case when you do research on the Internet. I'll recieve and start medication on Friday. I'm optimistic I'll be virus free soon. Feeling very grateful!

badbradley · « **Reply #13 on:** January 20, 2015, 10:43:09 pm »

Welcome Chelle,
Very good to hear your meds have been approved and your cure will be there soon. I treated 12wks. on S/O and am undetected at end of treatment. I will have SVR12 blood draw Feb.3 and results shortly after. It was a very tolerable treatment for me. You may know this but remember to take both meds together, and take your meds at the same time each day W/food. No specific time of day for dosing, some take it when least likely to forget dosing - Brkfst-dinner-supper, whatever works best for you. Also, water, water, and more water!!
Wishing you success on your SVR12/24.
Brad

JK · « **Reply #14 on:** January 20, 2015, 11:25:15 pm »

My doctor recommended that Harvoni was the best option for me, and I have been trying to get the drug since the end of October. I have United Healthcare, and United Healthcare does not cover the drug. My doctor said that if the medication was appealed twice and denied twice that I would be able to get the medication through Support Path. I have applied for Support Path as well. I thought that I had been denied twice and kept being told that medication through Support Path would be on its way soon but was told this week that United Healthcare still hasn't decided whether to make Harvoni formulary. So I'm still waiting and fee like United Healthcare is just dragging its feet, and was told to make appointment with my doctor later this week. I'm frustrated with this roller coaster ride and not sure what else I can do at this point. Any advice? Thanks!

Lynn K · « **Reply #15 on:** January 20, 2015, 11:45:35 pm »

Call the number on your prescription drug card and inquire about status. The squeaky wheel gets the grease

BattleTheBeast · « **Reply #16 on:** January 21, 2015, 09:28:38 am »

I agree with Lynn, you have to stay on them and that may mean sitting on hold for hours to get through but keep pushing for yourself. I think everyone who has done that eventually has received treatment.

Mel

apache · « **Reply #17 on:** January 21, 2015, 08:35:31 pm »

Quote

but was told this week that United Healthcare still hasn't decided whether to make Harvoni formulary.

Harvoni has always been on UHC's formulary. But... what's changed is that now they restrict it to F3 or worse Metavir score.

UHC's original Harvoni policy is actually still online, and has no restrictions (ie, even F0 are eligible). You can see this @ https://www.unitedhealthcareonline.com/ccmcontent/ProviderII/UHC/en-US/Assets/ProviderStaticFiles/ProviderStaticFilesPdf/Tools%20and%20Resources/Pharmacy%20Resources/Harvoni_Notification.PDF

However they very quickly revised their Harvoni policy to only F3 or worse. This revised (and much longer) policy is @ https://www.unitedhealthcareonline.com/ccmcontent/ProviderII/UHC/en-US/Assets/ProviderStaticFiles/ProviderStaticFilesPdf/Tools%20and%20Resources/Pharmacy%20Resources/Harvoni_Medical_Necessity.PDF

Good luck. I'm in the same scenario as you (my dr. is battling UHC for Harvoni approval).

Lynn K · « **Reply #18 on:** January 21, 2015, 10:39:26 pm »

found this looks like viekira is allowed without as much problem

https://www.unitedhealthcareonline.com/ccmcontent/ProviderII/UHC/en-US/Assets/ProviderStaticFiles/ProviderStaticFilesPdf/Tools%20and%20Resources/Pharmacy%20Resources/Clinical%20Programs/Clinical_Programs.pdf

apache · « **Reply #19 on:** January 22, 2015, 11:33:17 pm »

Quote

found this looks like viekira is allowed without as much problem

Wow, very interesting document, Lynn. Good sleuthing!

It seems odd that UHC would have a lower threshold of approval for Viekira than for Harvoni, because it would seem that in many cases the Harvoni Rx would actually be cheaper than Viekira. For example, consider my case (Genotype 1a, viral load < 6M). Barring discounts (and no UHC discounts/deals have been announced with either Gilead or AbbVie, AFAICT), the Rx prices for the two options would be:

Option 1: (Gilead) Harvoni: 8 weeks ==> $64,000 (cost to UHC)

Option 2: (AbbVie) Viekira: 12 weeks, plus... ribivarin (since I'm Genotype 1a)
==> $83k + $5k = $91k

So in my scenario (which I don't think is that rare), it would be a lot cheaper to UHC ("would maximize their shareholder value") if they would let me get Harvoni.

Lynn K · « **Reply #20 on:** January 23, 2015, 01:19:33 am »

I guess they made a deal with Abbvie like express scripts did to make Viekira Pak formulary preferred and Harvoni in not preferred per formulary with Abbvie cutting them a price break.

Looks like OptumRx is the prescription drug provider for United health care. I haven't been able to find if they have made a deal with Abbvie like Express Scripts did. So cannot confirm.

BattleTheBeast · « **Reply #21 on:** January 23, 2015, 08:58:04 am »

I think UHC must use different pharmacies for different areas. I have UHC and all medications go through Express-Scripts and then Accredo for specialty.

Mel

Lynn K · « **Reply #22 on:** January 23, 2015, 10:07:15 am »

Well if it is express scripts that would definately explain that since they made that deal with Abbvie

apache · « **Reply #23 on:** January 23, 2015, 11:22:18 am »

Actually... I think that UHC has dozens of different policies and uses different specialty pharmacies, depending on which employer (HP, Xerox, Boeing, etc) they made the insurance contract with.

For example, in my case, Lynn was correct: my UHC insurance does specify OptimumRx as their specialty pharmacy. I get my UHC insurance through my employer, Hewlett-Packard. If someone has UHC insurance through a different employer (say, Xerox), their UHC policy may well have different coverage categories/amounts/deductibles/exclusions, and their UHC policy may use a different special pharmacy (eg, ExpressScripts).

I think the insurance situation is quite similar to a phrase from an old text-based computer game, "you're in a maze of twisty passages, all alike".

Red Hen · « **Reply #24 on:** January 23, 2015, 11:27:09 am »

Apache, I like that quote. Sums things up very well.

Lynn K · « **Reply #25 on:** January 23, 2015, 11:44:39 am »

Hi Apache

I am at Boeing in WA state we have BCBS of Illinois since they moved the HQ to Chicago some years back. I did not know any part of Boeing tha UHC maybe in Cali the former McDonald Douglas folks?

apache · « **Reply #26 on:** January 23, 2015, 12:02:42 pm »

Quote

I do not know any part of Boeing that has UHC; maybe in Cali, the former McDonald Douglas folks?

Sorry for the confusion - I typed my reply too quickly, leaving out some disclaimers in my example.

In other words, I literally just picked the example employers (Boeing and Xerox) out of a hat. I have no idea if those two employers actually have UHC ins. The only one I know for sure that uses UHC is HP (where I work).

Lynn K · « **Reply #27 on:** January 23, 2015, 12:08:53 pm »

No worries

Chelle · « **Reply #28 on:** January 27, 2015, 12:43:37 pm »

Thank you Brad!

Wishing you virus free on Feb 3rd! - Chelle

sjking · « **Reply #29 on:** May 12, 2015, 05:26:42 pm »

Thanks to everyone who replied to me. I took your advice when my insurance company would not cover Harvoni and contacted Support Path directly. I was organized by the third week of March with my tax forms prepared and documents signed by the doctor. I shipped those off to California before Easter and within two weeks I heard they were giving me the drug... for free. Wow, I broke down and cried right then on the phone with their employee. It seems the cut off gross tax income is s$100,000 for a family of three. I hope others will bet everything together and fill out the paperwork. It took a few hours.

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Author Topic: Important Info for Anyone Who Has Been Denied (or is Considering) HCV Treatment (Read 26079 times)