Hep C Discussion Forum

Please know that I am not judging.

I was playing devils advocate.

I hope you win your appeal process and continue to win the HCV battle...

Kristen, I guess we have different principles. 

My principle is to become SVR and stop my cirrhosis using my insurance plan and its defined guidelines plus these wonderful new meds.

Really not sure what yours is maybe somewhat emotional. I guess its to change a defined process within your plan.

I get you pay for the plan out of your paycheck, so do I.

Your plan is you get two refills from a retail pharmacy the third is from a specialty pharmacy. 

I am not sure anyone is purposely walking all over you. 

By the way, I am a licensed insurance agent that sells Personal lines and Commercial lines Property and Casualty insurance in three states.  I always like a good argument with an adjuster ! 

But my adjusters don't bend the guidelines for personal gains.

Don't take my response personal, it could be the Riba rage in me !!!!

Hey Dragon Slayer - as I said in my post - I had a moment there where I thought "oh whatever" and considered just transferring it over however it's principle at this point. As for less painful and/or quicker - I highly doubt it.

My current specialty pharmacy has handled everything for me. When I left my doc's office the day we decided to start treatment - I got a phone call w/in 2 hours from the specialty pharmacy explaining that my doc had just stopped in there (the pharm is IN the transplant center) and set everything up with them and they'd handle everything. The following day I got a call from them saying everything was approved and they'd send it out FedEx - then they called the day of shipping with the tracking number. I did nothing but answer my phone several times - they are wonderful.  And last week - I got a call from them again - "2nd set of meds are on their way - here's your tracking number" ... piece of cake.

To transfer it over I have to call Express Scripts and start the process with them, then I have to call the specialty pharm to set up an account with them, then I have to fax their form to my doctor - then I have to follow up with them that they rec'd the form back from my doctor, then follow up with them to set up shipping which must be on a Saturday as I cannot take off work and I live in an apartment complex therefore I have to be home because if the package is left at my door it WILL be stolen (last 3 "delivered" packages are a mystery as to where they ended up). Just thinking/typing all that was stressful.

And as for timing - I don't start my 3rd set of bottles until 4/8 which means I pretty much have over a month. I started early, the letter took less than 10 minutes to write - I just fax it in and their review process is 48-72 hours. If it works, it works. If it doesn't - then I have the rest of the month to mess with the whole transfer process for 1 lousy refill. Obviously I'm not going to pay the entire last fill out of pocket - that would be silly BUT I'm also not going to just roll over and do whatever they say. I pay for that plan - it's not free or government funded - it comes out of my paycheck every week.  In the end - at least I will have tried.  I'm not the sit back and let people walk all over me type.

Your appeal letter is heartfelt enavigo!  I'm hoping this works for you!

I went to the doc this morning to find out why my WBC counts were elvated (more labs done - should know more by Monday) so I didn't have time to call the appeals line this morning. I did however do so as soon as I got back home.

Express Scripts Appeals Department confirmed that my plan only provides benefits for the RX to be filled 2x at my pharmacy. After that I can either move it to their pharmacy or pay 100%. I asked why they do not explain that up front when they provide my doctor/specialty pharm with a blanket 3 month approval. They could not answer that question for me. They did however explain that my plan "ALLOWS FOR" a written Refill Override Request (how kind of them!). This written request is supposed to come from me, the patient, and explain why I am asking for them to cover the 3rd fill at the pharmacy that handled the last two fills. So I wrote the request and as I was starting, trying to think of what to say, I briefly thought - "so what? - just let them transfer the prescriptions and hope for the best" - then something kicked in and a louder voice said "NO - It's the point" (might have been a Riba pill or an angry WBC, I dunno). So I decided to write the letter - HepC has controlled too much of my life thus far and reading all these other stories of people having issues with their refills has just made me angrier. I'm fighting this RX Company Decision just like I'm fighting this dragon inside me - with all I got -  because it's just the point.

Dear Administrative Appeals Department;

Please find this letter as my official written request for a retail refill override. In your system, I am ID #XXXXXXXXXX, however please allow me to introduce myself. My name is Kristen and I am a 30 year old Commercial Liability adjuster. Like you I am a real person, I have a full time job, a family, and yet hopefully, unlike you, I was born with Hepatitis C. Being that I work in the insurance field, I am very aware of policies and procedures yet equally aware of appeals, reviews, and exceptions.

As a Hepatitis C patient with genotype 2, I have the opportunity to finally clear this virus with the newly FDA approved drug Sovaldi in combination with Ribavirin. Per my genotype, I require a 12 week treatment on this combination of drugs to hopefully reach every Hepatitis C patient's goal; Sustained Virological Response (SVR). This 12 week treatment includes 3 fills each of the above mentioned medications. As of the writing of this letter, my first and second 28 day supplies have been handled by the XXXXXXXXX HealthCare System Specialty Pharmacy Service located at the hospital where I currently treat. This team has been absolutely wonderful to work with and knowing they are local to me has provided an unexplainable amount of comfort in their handling of my treatment prescriptions.

Unfortunately, I have been notified by Express Scripts that this wonderful pharmacy is considered a "Retail Pharmacy" and my plan only allows 2 fills of each medication at a "Retail Pharmacy". It has been explained that any fills over the 2 allowed would need to go through Express Scripts' Specialty Pharmacy, CuraScript or I would incur a monetary penalty for keeping the prescriptions where they are for the third and final fill. This morning I contacted the  Customer Services Department as well as the Appeals Department and spoke with several different people. The result of these discussions were that if I did not move both prescriptions to the Express Scripts Specialty Pharmacy for my third and final fill, that Express Scripts would not contribute at all to the cost of the medication and I would be 100% responsible for the cost.

This is quite a monetary penalty. I am respectfully requesting consideration of 1 more fill for each the Sovaldi and the Ribavirin to be completed at the "Retail Pharmacy" as it is the 3rd and final fill. I understand Express Scripts' desire to internalize the filling of actual "maintenance medications" as your customer service department stated you consider these drugs. And I would understand the necessity of transferring both prescriptions to Express Script's Specialty Pharmacy if I had to continue on this treatment for 24 or 48 weeks as others with the same condition must do. However, two fills per prescription have already been granted with coverage and I only require 1 more fill of each medication.

I hope that you do not know and never will know firsthand the stress of living with a potentially fatal disease or one that is commonly misunderstood and almost always associated with ignorant stereotypes. I hope that you will never know firsthand the stress of enduring treatment. If you do, I hope that you find a place as awesome and caring as the XXXXXXXXX HealthCare System where not just 1 or 2 people play a role in your treatment and well-being; but instead an entire team - including their very own specialty pharmacy. I truly believe that having to worry about transferring my prescriptions over this late in the game for one final fill of both medications will cause an undue hardship to my already stressful situation. The current pharmacy knows me, knows my doctors personally, knows all other medications I am on and has twice shown they can provide these medications on time and with absolutely no stress on me. I ask of you to please authorize my 3rd and final fills of both Sovaldi and Ribavirin by my current "Retail Pharmacy", the XXX Specialty Pharmacy Service - with the same level of benefits coverage applied to the first two fills.

If you have any questions about my current prescription for either drug, you may contact my Specialty Pharmacist XXXXXX XXXXXX at (phone number).
Additionally, you may contact me directly with any questions at (phone number).

I thank you in advance for your thorough review and consideration of this request. I truly hope that Express Scripts makes the best decision for my mental and physical well-being. Thank you again.

-- Edited by Enavigo3891 on Friday 28th of February 2014 07:55:43 PM

Interesting article on our current discussion:

http://www.natap.org/2014/HCV/020714_02.htm

Tig

Sorry you've had to go through all this Dragon Slayer, but glad you will be able to continue with Olysio and reach SVR. To the extent possible, I think most of us are willing to trade money for health, even if the underlying circumstances are unjust. You have a great attitude which may be as important in the end as the tx.

I echo your comment about staying on top of refills for everyone in the initial process of tx. I'm glad I'm through with it, and hopefully will never have to revisit this issue with any other HCV medication in the future. After 27 years of practicing law, I thought I had seen every form of bureaucratic idiocy, but my recent experience with Anthem/CVS Caremark, along with everyone's experience in this post, has expanded my catalog.

Hang in there Enavigo, we are pulling for you

Dragon Slayer, it is good to hear you were able to work out a plan to get the Olysio!  What an ordeal they make us go through - it should be criminal!

Hey HCDS

I was sad to hear your insurance companies decision, they have no compassion or vision which puts them in a bad light not you. I would not waste my time in fighting them, move on and save your focus and energys for finishing your last 28 days on treatment. If you have a connection with J&J for the remaining Olysio hit that avenue hard and fast. If that does not work out maybe Interferon for the last 28 days could be an option if you are not a non-responder and your health can handle it. Your Doctor most likely will recommend a course to follow. 

Hoping all things work out in the long run for you.

matt          

So sorry to read this, Dragon Slayer, this is shocking and so unethical and like everyone else I really wasn`t expecting this.  I`m not familiar with the US medical insurance system but it doesn`t make any sense to backtrack and deny you a repeat of Olysio when you`re already mid way through your treatment and when you`ve been responding so well.  It also sets a very worrying precedent for others hoping to do the same treatment combo.

Hold on to your positive attitude though...I agree with the others that you still stand a very good chance of SVR, so keep going and try not to let this beat you down!  I wish you all the best of luck, do keep us posted.  

I am truly sorry, Dragon Slayer.  We have all been hoping for a more positive outcome for you..  I still think it's absolute nonsense, whatever language they use to justify their denial.  It's impossible to reconcile them doing this mid-treatment.

On the plus side, you seem to have a solid attitude and I'd be willing to bet you're going to achieve SVR, anyway.  Stay strong and virus free!

My insurance company (Community Blue) has officially declined the final 28 days of the combo triple tx.

They have approved Sovaldi and Ribavirin for 28 more days but they will not approve the final 28 days of Olysio.

The final decision was based on the fact that the FDA has not approved the "off label" approach.

FDA has approved Sovaldi and the FDA has approved Olysio.  They can be in conjunction with or without Ribaviron and Interferon.

But they cannot be combined as in Sovaldi and Olysio together with or without Ribaviron and or Interferon.

The legal team for the doctors office told me by them declining the benefit claim by using the "not approved  by FDA"  protects them from any legal issues.  It would not protect them 100% but it does make the fight harder to fight.

Each insurance company has the rights to make a business decision as to " if they will accept any off label approach to tx".  They usually take any input from the doctor, scientific data, pharmaceutical data and make good sound business decision.

This decision does not sit well with me but my hands are tied as to what I can do on the immediate front.

My attitude has to stay positive in the fight of HCV, the good news is that I got 56 days of treatment and so far I am UND. 

I will continue the Sovaldi, Ribaviron for 28 more days and according to science and my doctors opinion, I may still achieve SVR based on the results so far.

For the folks that may be wondering, I am working with Olysio to fill the final 28 days on my own.  They seem to be very open to helping.  I agreed not to disclose the offer they gave me but for a couple $1000 out of my pocket, I may still get the last 28 days of the orignial tx.

I emailed my specialty pharm rep yesterday all my concerns and she called me by 9am this morning. She said that she had me scheduled for refill next week as I started treatment 8 days after the initial refill but after getting my email she ran right to the system and put my refills through - she said both went through fine and will be sent out by FedEx on Friday. She also called Express Scripts to find out why my online account was saying I only have 1 fill left. They explained to her that I have 1 fill left at a "retail pharmacy" and then I can continue to fill at a retail pharm but at an increased cost. My pharm rep said the Sovaldi should work out the same out of pocket due to the coupon but I may have to pay more on the Riba or switch to Express Scripts' Specialty Pharm. Unless it's over a couple hundred dollars I'll pay the difference to keep my meds where they are. And Express Scripts confirmed my "pre-auth" is good until 4/28/14 so as long as my third 28 day set is filled before then (which it will) they foresee no problems. As for all the other problems everyone else is having, unfortunately my specialty pharm rep had no input - she said they have not yet received any issues on refills for their patients.

Hep-C Dragon Slayer wrote:

---

Ok so the meeting took place this morning. The Insurance company is holding tight on the fact that the Cosmos trials ended without data showing a need for more then 56 days of treatment.  To them, there is no scientific proof that more then 56 days of tx would change or alter the results.  They are using my UND status in week 2 to the advantage for them at this point in a decision process.

The insurance company retreated and said they wanted scientific data as to why my doctor went with the off label versus one or the other approved FDA tx plans. She provided them with facts showing in my case that I cannot take the Interferon (which saved them money) and that stage 5/6 cirrhosis cannot withstand the punishment of a longer tx plan should one or the other approved drugs not respond.

They then opened the conversation to me and at that time I entered two questions.

1.) How could they approve the off label tx up front when the script was for 84 days of Sovaldi, Olysio and Riba and in the final 28 days only approve the Sovaldi and Riba. With the proven results so far, how can they not approve the final 28 days of Olysio.

2.) Are they willing to risk the liability exposure of not approving the final 28 days ? The decision to approve the final $22,000 script of which they already paid $44,000 on, may cost them more in the long run.

I let them know all I have left is Wed, Thur, Fri, Sat and Sunday pills. Next day delivery needs to be approved by Thursday for a Friday Saturday delivery and that also assumes that the Pharmacy has Olysio in stock !

As of 3:00 Tuesday afternoon, the pharmacy said still comingback rejected.  They said they will resubmit at 6 pm and 8 pm today. 

 

---

A couple of thoughts Dragon Slayer. Even if the COSMOS trial was suspended early, didn't everyone get 12 weeks of tx in both cohorts, regardless of whether the results have been reported? Does the insurance company have any data from patients who only completed 56 days of tx with a 12 week EOT followup that supports their position? Secondly, with the information provided by the Olysio representative of the importance of having the full 12 weeks of tx, who can state that if the HCV returns and they are incorrect, you don't run the risk of viral resistance for future treatment with all the potential consequences to follow. This clearly bothered my doctor from an ethical standpoint and me from a legal perspective. keep us posted and good luck!

P.S. CVS/Caremark was out of Olysio last Friday, but back in stock on Monday.

Ok so the meeting took place this morning. The Insurance company is holding tight on the fact that the Cosmos trials ended without data showing a need for more then 56 days of treatment.  To them, there is no scientific proof that more then 56 days of tx would change or alter the results.  They are using my UND status in week 2 to the advantage for them at this point in a decision process.

The Olysio rep brought mounds of data showing results from 500 participants that their office in St Louis put together. 

The tx needs to be 84 days for some active Hep cells can lay dormant in tissues. He proved that the virus can reform its cell formation up to 6 weeks and that the additional 6 weeks wipes clean any replication process that may have a new cell hidden and come alive in week 5 or 6 of tx. The 12 weeks seems to be the minimum for certain type of Hep specifically Genotype 1.

He also showed them that the cost of tx for 84 days is a lot less cost then 168 days or the older treatment plans. He made a great business case and backed it with real data.

The insurance company retreated and said they wanted scientific data as to why my doctor went with the off label versus one or the other approved FDA tx plans. She provided them with facts showing in my case that I cannot take the Interferon (which saved them money) and that stage 5/6 cirrhosis cannot withstand the punishment of a longer tx plan should one or the other approved drugs not respond.

They then opened the conversation to me and at that time I entered two questions.

1.) How could they approve the off label tx up front when the script was for 84 days of Sovaldi, Olysio and Riba and in the final 28 days only approve the Sovaldi and Riba. With the proven results so far, how can they not approve the final 28 days of Olysio.

2.) Are they willing to risk the liability exposure of not approving the final 28 days ? The decision to approve the final $22,000 script of which they already paid $44,000 on, may cost them more in the long run.

I then provided them with a copy of our new letter and left them with the understanding that should this not be approved and I do not achieve SVR that I will be seeking legal assistance.

They did very well by not showing their cards!

They ended the meeting with we will go back to the office and review the information and make a decision in the next 24 hours. 

I let them know all I have left is Wed, Thur, Fri, Sat and Sunday pills. Next day delivery needs to be approved by Thursday for a Friday Saturday delivery and that also assumes that the Pharmacy has Olysio in stock !

As of 3:00 Tuesday afternoon, the pharmacy said still comingback rejected.  They said they will resubmit at 6 pm and 8 pm today. 

Stayed tuned....

My pleasure!

Tig

LTChaos wrote:

---

Thanks Gator & Cinnamon Girl!  Hey, the thread is fixed! Yay!  

 

Just to clarify, I am on a standard treatment of Riba & Sovaldi.  I did not expect such a fiasco with my prescriptions.   I am really glad I decided to follow up after hearing what others are going through on the non-standard tx...

 

---

 Thanks LT, and yes I agree, there can really be no justification for such a mix up with your prescription refills, what a mess!  No wonder you were driven to tears, no-one needs this sort of added stress when on treatment and feeling more emotional and vulnerable than usual.  I`m glad you have this forum to vent your frustrations on at least!

You have Tig to thanks for fixing the thread, by the way! 

Thanks Gator & Cinnamon Girl!  Hey, the thread is fixed! Yay!  

Just to clarify, I am on a standard treatment of Riba & Sovaldi.  I did not expect such a fiasco with my prescriptions.   I am really glad I decided to follow up after hearing what others are going through on the non-standard tx...

Express Scripts is worthless, I called them & they told me Blue Shield manages my plan.  I called Blue shield & was informed they have nothing to do with the pharmacy plan, it is separate.  Nothing like the run around & no one to

take responsibility...

I ended up calling my husbands union to get to the bottom of who manages what.  I didn't want to do this, everyone knows everyone & people talk & it is really no one's business.  After explaining the situation,

The insurance rep with the union is contacting express scripts to have them waive the restriction.

While i was on the phone with the union, Accaria health then called me back & said they transferred my script over to Curascripts, and spoke to the pharmacist who is very knowledgeable & promised I will have a call back today.  

The Accaria health rep told Curascript I was already out & needed the shipment by tomorrow (little white lie), whatever, if it gets them off their posteriors fine with me!

 

Is there any way we can remove the oddly formatted post from Gator, or at least the letter that seems to have streched this thread out?  There is good information here & it makes it hard to read.

 

I apologize about the formatting problem. I scanned the letter and then pasted into the post. It looked o.k. in the preview window and not sure why I had a problem with the right margin?  I should have attached it as an image. Should we move this to a new thread?

I got the same runaround between Anthem and CVS/Caremark, although it appears that the latter makes the decision in my situation regarding pharmaceutical txs. The clinical director of the specialty pharmacy that I spoke to yesterday confirmed that that these providers will delay prescription shipments and/or informing you of adverse decisions regarding coverage until the last possible day. CVS/Caremark asked me on more than one occasion  how many days of medication I had left? I never answered, but told them I am entitled to a refill every 28 days or less from the original prescription date and delivery in mid December.

I know it is uncomfortable to involve your husband's union, but it may lead to the best and earliest resolution of the problem. In my case, I didn't want to involve my wife's company HR department (my health insurance plan administrator), even with HIPAA regulations, although it solved a two week old problem in 30 minutes. Let me know if I can be of any help.

 

 

 

 

 

I spoke with the local special pharmacy clinical director yesterday about this whole refill denial fiasco. This apparently has happened with several different insurance providers who base their decisions on the early termination of the COSMOS trial. I've seen nothing on the internet in this regard, but my doctor mentioned it when he talked to the director yesterday. I've found nothing to indicate that COSMOS was terminated because of adverse medical results. My guess is that Gilead pulled the plug so they can focus attention (and $) on their Ledipasvir/Sofusbuvir combo drug. There are still clinics/doctors collecting data on the Sovaldi/Olysio tx protocol including my own.

I would assert that:

a:) the COSMOS data is valid and indicates a high likelihood of an early positive response as seen in your own results. 

b:) the combination is no longer experimental and is the first line of therapy for interferon ineligible patients as endorsed by the AASLD and IDSA.

c:) any disagreements with a:) and b:) should have occurred before treatment commenced; changing course now increases the risk of viral              resistance for future treatments, therefore potentially ENDANGERING your health.

d:) group health plans (if this applies to you) mandate continuing coverage pending an appeal. You are entitled to notice of your rights regarding         an appeal.

e:) a denial is unethical and really stinks.

P.S. I see that your meeting may already be in progress Dragon Slayer, but we all wish you luck

Hey Dragon Slayer

Will be thinking about the meeting and sending positive vibes your way.

matt 

Glad to read the good news Gator Man!  Reading what you've been going through makes me want to call my specialty pharm like next week (week 3) just to make sure they've got everything set for my next delivery!!

Great to hear that, Gator Man.  Also that Dragon Slayer's troubles seem to be moving towards a positive finale.

Thanks for the tip on Sovaldi/Olysio.  They were certainly comfortable to deal with during my initial setup.

As for demand exceeding supply, the one item my pharmacy was out of when placing second month's order was Riba! :)

I apologize for the formatting problems in the last post.

After getting the Human Resources V.P. involved, CVS/Caremark will ship both medications on Monday. It helps that even though Anthem and Caremark are the insurance providers, the plan is self insured by a large company that ultimately pays the bills. Based on the information provided by my doctor, the company reversed Anthem's/ Caremark's decision within 30 minutes after review this morning.

The medications would have shipped today, but CVS/Caremark is out of Olysio until Monday. I wonder for the near future if demand will exceed supply for Sovaldi/Olysio until Gilead's next one pill drug is approved? 

Thanks everyone for your concern and thoughts.  Tig, the patient assistance programs with Solvaldi and Olysio were far more eager to help than Caremark. A great idea to get them involved if anyone runs into similar problems. I have gleaned some information regarding insurance law (U.S.A.) and continuation of treatment. Hopefully you will have good news today Dragon Slayer, but let me know if I can be of assistance if this is not the case.

It's a little sobering to read in a letter about yourself that you are "very ill and in desperate need of a cure". Even given a little hyperbole, it emphasizes just how serious and necessary treatment is at this point in my life.