Hey HepCat,

I see (earlier) our notes kinda crossed each other at about the same time, mine arrived a little out of sync, and just after yours, but we were on the same topic/wavelength anyway!! 

I was (am) very troubled about the "public" system(s) we have up here, what with the National dictates and the Provincial dictates, and every place that one can live in can be dif. when it come to what drugs may be "technically"available to you, but, then you find out in reality they are NOT! Better drugs exist for a person (are approved for use Canada-wide), but that availabilty is only a nice theory, lip service, depending on what Province one lives in. I was ready to go to India to go get my own drugs for myself, than do the drugs offered to me via the "system", had I not lucked in to a trial instead.

But the US system boggles me, same "cost" driven concerns, the cruelties just being meeked out in dif orders, dif ways, by dif folk. Horrid systems to have to work through when it is like this! I relate to your beyond frustrations. It is a bad feeling when you feel you are at their mercy. I am sorry about this. People should not have to be fighting for health care like this. Just not right! You will feel so much better, and experience some relief and respite from this when you finally find out your drugs get approved. I started feeling better about things, as soon as I knew for sure, that I had "qualified" to get into my trial. Your relief is on it's way. Good your doc is helpful, methodical and looking out for you.

I'll read your links next. And have a better (second look) at Tigs too. Hang in there.  C. 

thank you Tig56

I will be around for awhile and will  read her post. I do appreciate the forum members helpful direction.

I know I sound like I'm vilifying ES its because in my own selfish case,  Express  Scripts  callously denied my treatment as prescribed by my doctor under my excellent medical plan BLUE CROSS BLUE SHIELD of Illinois. I've worked for BOEING near Seattle for  going on 32 years and BOEING and I have paid into that insurance policy even longer. Here is the lowest bidder  to Boeing's pharmaceutical provider  to BCBS.  Express  Scripts  denying  me medication because of cost. BCBS says were sorry, Boeing says were sorry but there's nothing  we can do about  Express Scripts.  I feel that I'm at the mercy of a ruthless corporate giant that doesn't really give a rats ass about  medical health. ES really only cares about  how ES can cut costs.  After spending these many years working  and having insurance  and when I finally need life saving  treatment  for a fairly common wide spread Baby Boomer disease like HEPC , I feel I am  being treacherously stabbed in the back by my Employer and  by my insurance provider BCBS for allowing Express Scripts free reign to decide who gets life saving  drugs. 

A local health care HMO provider Group Health was threaten with class action law suits because they were doing the same game as ES. Group health relented  and everybody with HEPC got medication.  ES is so big  I believe they do not fear lawsuits.

These I believe are the realities about EXPRESS SCRIPTS. 

HepCat17

The OP, original poster, Enviago, was a skilled negotiator and underwriter, she knew how to appeal. I wish she was still around. I recommend reading her posts in particular, starting with the first, HERE. Just read our suggestions and as Canuck mentioned, don't overwhelm yourself. Educate yourself through review of the information and ask questions of us and your doctor. You shouldn't expect to learn everything in a week! Too much, too fast will cause a vessel to burst, and that's painful! We have a good Knowledge section, check it out.  Little at a time...

One more thing... Always is one more thing around here! I looked at the two ES links you provided and I agree, ridiculous. Those policies began years ago and I think have softened a little, but apparently not enough. That's where the appeals process gets important. It has to be done well and your doctor must get involved. Often it is your first appeal that carries the most weight. If your doc is worth their stuff, they know how to do it. A peer review/appeal when they speak doctor to doctor is very beneficial. Trust me, they have that phone number.

Hi HepCat,

Sorry, don't mean to overwhelm you with complicating details, or overload you with work, but I did want to write down everything I could think of.

I don't mean to second guess your doc either, I am sure he is experienced with this, in drug selection, the appeal process and helping people get their drugs.

Good he gave you the insiders inkling in how these "providing" companies work (or work slowly as the case may be). Consider the next month or so another hurry up and wait period.

The labourious info gathering would just be for your own interest and protection, some people are not that interested in every detail and nuance of their labs, others are and it is very important to them.

In the end when one is cured, will it really matter if you have your own complete file of labs?? (Just for me it is).

Having your own records, may be just insurance, in the case that you do have continued head-scratching approval troubles, and need a particular detail of your history at your fingertips for understanding or argument, or it may be helpful just for "before and after cure" health comprarisons.

Third time lucky they say!, perhaps in the next month or so you will indeed find out your Viekira Pak is not too far away!

If you and your doc, again, do not get the go ahead for the Viekira this time, and you are back to his office to discuss same - this is another opportunity for you to ask your doc about any other drug regime choices (some of the ones I mentioned prior), you never know, maybe your doc does have a list in his mind of ideal/ better/best choices for you, not based on cost alone. Changing drug choice horses now, might be a mistake, especially if you are already invested in and closest to Viekira to approval, but, on the other hand, if they refuse you again and you are kept waiting for another go-around, perhaps you and your doc would just get plain lucky, by happenstance, by changing up for requesting an even more "L'Oreal" drug, and end up (by near accident) getting an even more exclusive expensive drug, just for the asking!! Strange things sometimes happen just by weird luck and accident. But, I wouldn't know why your doc chose Viekira, he may have good reasons, more than cost, he may have genetic RAV testing on you for instance, and/or other considerations.

During this "approval-waiting lull", you might also ask your doc about having the fibroscan done. You might also ask him how much weight does having a high F-score carry, as far as approval.

Good you are taking care of B immunity. Good you have no other major health things. I think having HCV is enough for any persons plate! Hang in there. You are getting close now!  C.

Tig56

Yes I just scanned some of the posts about ES. Seems the problems with EXPRESS SCRIPTS continue even after medications get approved. Did not see any accounts of people and their appeal process though. I do know ES has another dept  Accredo which currently handles expensive drugs. I googled Accredo and a complaint article came up stating that  Accredo service has  been cited  nearly1,500  for complaints by patients for dishonesty, procrastination and STALLING TACTICS!

I'm looking for advice on how deal with EXPRESS SCRIPTS/ACCREDO reputation for stalling by requiring patients doctors filing appeal after appeal.

My doctor told me that's how they operate. "And unethical pattern of denials and appeals"  Weather I have a medical  need for medication or not and have all medical documentation submitted  properly seems to be irrelevant.

I'm taking the forums suggestions and accessing  my medical documents and will be come familiar  with their meaning and impact in better understanding the disease HEPC  I am going to assume  my GI doctor is professional and highly trained with years of experience in knowing what medical documentation needs to be submitted  on my behalf  to get the appeal approved.

I have always understood that  Doctors opinion carries the most weight in the decision making process. This has been the case for the need for surgery's to fix Repetitive Motion Injuries caused by my work. I would sometimes be sent to a company owned  so called Independent Medical  Examiner to try to over turn decisions but my  surgeon said "no my opinion will ultimately win out" and he was right.

I hoping my GI doctor medical opinion prevails  too. If my symptoms or degree of illness with  HEPC are not according to ES  not good enough to qualify for the "expensive'" medications Harvoni or Viekira Pak  then in the doctors opinion and assessment there is a medical need for me to be cured of HEPC even from an ethical standpoint. I have to find an ethical "boned" person or persons involved at EXPRESS SCRIPTS/ACCREDO appeal process and then for them to give up, and make the right ethical gesture and give the drugs to cure HEPC in one more human being.

Or am I being to idealistic about corporate greed and it really not about the money?

Here is something I  extracted from  EXPRESS SCRIPTS/ACCREDO on their own website how they view people  using their service.

They advocate "HEALTH DECISION SCIENCE" " Health science is the study of how people make decisions, and how to help them make better ones.  Upon the merger of Express Scripts and Medco Health Solutions, the company came up with its own approach to understand its members health concerns, which it has dubbed Health Decision Science.  This involves looking at three scientific disciplines:  behavioral science or "consumerology", clinical specialization, and actionable data. Because of its position between pharmacies and health care plans, Express Scripts sees 1.4 billion prescriptions a year, and it uses this information as part of its research data to create better solutions for clients and patients".  

In my opinion, EXPRESS SCRIPTS/ACCREDO better solution  for patients,  is outright denial of prescribed medications. 

HepCat17

http://lab.express-scripts.com/lab/insights/behavioral-sciences/consumerology-from-the-express-scripts-lab

http://lab.express-scripts.com/lab/insights/specialized-care/health-decision-science

HepCat,

Did you review that thread I suggested? It describes a similar situation with ES.

Thanks Canuck  you have related so much useful information. I now have an excellent starting point and baseline for  what medical info I must gather on my own behalf so as to be my own advocate for treatment  planning.  I have left so many open ended medical documentation facets to the treatment process, this is so much more complicated than  what I first leaned about  this  disease. I now know what to ask for.

The Viekira was chosen by ES as the preferred drug  because its cheaper than harvoni  that's what ES told my GI doctor.

I do not have any other disease I'm due to get a HEP B booster shot.

I have just presumed  that my GI doctor has supplied ES with all pertinent medical  documentation to get a favorable appeal decision.

All I have been told  by my GI Doctor and aid was that ES plays an "unethical" game of denial and appeal  to see if the patient will just give up. And my doctor is willing to keep appealing with the right medical documentation until  we win the appeal process.

So at this point I'm told to wait for the outcome of the 3rd  appeal an external  EXPRESS SCRIPTS  appeal in 4-6 WEEKS.

But I  will heed your advice and get my own current and complete medical record  to have on hand. My next appointment I'll have some questions about my HVC status and how things are progressing.

HepCat17

Hi HepCat,

I like the story behind the name!

Yes, job one - do try to get copies (for your own records at home) of all your most current labs and imaging, reports, etc., perhaps ask for them directly from your liver doc who assessed you and set you up for the drug request.p Maybe just phone his office and ask the front desk to pull your file, get them to photocopy and give you a complete set of your most current lab reports, imaging reports, any F-score/ assessments/measurements/opinions about your overall HCV status. You might be able to get "some" of this via email from your docs office (or, from those on-line lab result services), I always find it better to have all my own hard (paper/CD's and/or email) copies of all my results to refer to.

You can also ask your docs office for a copy of the package of info that they actually submitted for your drug request, to see for yourself that all that should be in there, IS in there. I believe (on paper) those who "appear" the most sick, create urgency and perhaps get easier/quicker approval. "Good" test results are a double edged sword sometimes, that is what we wish for, but maybe what we need is the opposite, evidence of more severe liver damage for instance, in order to get drug approval quicker.

I would try to pull together a complete as possible "file of my own" of all my reports and results, but that's just me.

Your doc likely has some type of an estimated F-score for you already, no doubt he has a pretty good idea of where your liver is at just based on your labs, and there are various ways they combine some of the bloodwork results, other factors and assessment data together to glean you a F-score. You might also ask for a "fibroscan" to be done, it is another easy test which will give you a "F-score" (roughly a scale of F0 to F4) - derived from the fibroscan tests kPa measurement which helps indicate the "hardness" of your liver, a helpful tool in gauging fibrosis/cirrhosis levels. In a perfect world we wish we never had HCV, we would wish for "unremarkable" ultrasounds, and low F-scores, but in the stupid world of getting access to treatment drugs, this is the time you wish for severities, to hurry up getting access to the treatment drugs. 

In Canada, on my own, through a faxed request, I can simply get a CD of my ultrasound or CAT scan imaging sent to me, the CD will be snail-mailed out to me about a week after the radiologist has finished reading it, within the CD will also be the radiologists written report/interpretation/impressions. Having the "written report" from your ultrasound for yourself would be good, but as you mention "they" said it was good? My hep doc is far away from my home town, (my town in in one health "region", the hep doc  is in a dif health "region"). Hep doc has to provide me with his regions lab results for all the bloods I have drawn with him, I always retain a copy of these results for my own records at home, plus I hand over a paper copy of same to my local family doc. Any imaging I have done automatically goes to both of them. Almost everything is shared, one way or another. Periodically, after a check-up, my hep doc will send his own update on how I am doing directly to my family doc, when it arrives to my family doc, I can easily pick up a photocopy of this as well right from my local family doc. Any other bloodwork I happen to have completed at home, is  very easy to pick up copies of from my family docs office.

I was guessing you might be a GT1 just because of the drug selection being Viekira Pak, but of course would not be able to hazard a guess if your subtype was a or b. Your type, subtype and degree of fibrosis/cirrhosis has a bearing on drug treatment choices, lengths of treatment and whether another (additional drug) may end up being recommended as well. Helpful info to know you are a GT1b.

Did you and your doc ever discuss any other drug regimes, or have first and second choice regimes?? As there has been 3 appeals thus far for Veikira Pak, I am reluctant to bring this up, but I am curious as to that particular regime choice - it IS an extremely effective regime, but there are other regime choices (some of which might also be appropriate for you as a 1b), Epclusa, Zepatier  and Harvoni all come to mind. Would you mind sharing how you and your doc decided on Veikira Pak over any other regime??

As far as disclosure, as to how a person might have contracted HCV ... just know that some people who had HCV, will NEVER, EVER be able to figure out just when or exactly how they got it. It really does not matter, just so long as that person does get diagnosed and treated. It is all about risk factors, contracting HCV is just an unlucky and actually a fairly hard thing to achieve. The best way is by injection of an infected persons blood into your bloodstream, or, like in the old days, receiving a bag of tainted blood. Sexual partners and close household/family members should be cursory HCV tested as well, for safety sake, but familial infections are exceptionally rare, as are Mother/child birth transmissions.

Have you and your doc covered your immunity to Hep A, Hep B, pneumococcal or influenza immunization? Likely you and your doc have already done all this? Do you happen to have any other major health maladies going on such as renal disease? 

Were you or your hep doc informed "in writing" as to the exact reason(s), a written explanation from the parties declining the requests, as to why the 3 requests for Veikira Pak were denied?? I cannot grasp all the bodies you describe who may be involved in approving you, but I do think you must find out and rule out if there is any particular reason/parameter they want to see in your profile, which is lacking, which allows them to deny you. Maybe they try to deny based on a too low F-score for example.

That's all I can think of. Hope you doing and feeling OK, despite all.  C.

Thanks for the update Forum members and a explanation of the more complete process to get medications and  treatment.

I will discuss this with my GI doctor and ask Express Scripts if they do have all documentation thoroughly submitted.

Also I will become more informative. And I will find out what my full liver panel is. I have HCV Genotype Type 1b.

I have had lab reports on my medical portal  with Western Wash. Medical Group  but I do not see details.

Genotype and Viral load is about I see on the report.

F-Score, the Liver profile, blood count, fibrosis stage, etc. do not seem to be part of that report so I will ask the GI doctor  and ask Her where I  get that info!

 Is  the F-Score the fibrosis stage? I did have a liver biopsy 10 years ago and my PCP said it looked good but I did not get a lab report from Him.

And had a ultrasound 11/16 that reported as good. No alcohol in 17 years too (friend of Bill W) Is it important to reveal to the forum how one might have contracted HEPC? In think I know. One reckless moment where alcohol was involved in the decision making process.

Fun trivia about my name...Hep Cat was the name of a polka dot dress I bought my daughter and 17 is my plane, the B-17 I helped restore. We went to a father daughter "hangar dance" in 1940's dress, me in full combat crew kit and she in the HEP Cat dress. 

Irony of it all, that  I would be wearing the (dress) HEP C at 63 years old... its time for a change! Life on life's terms as we say in AA

Thanks again HepCat17

Hello HepCat and welcome.  (Added the o LOL )

This may be a case of missing information. Has your Doctor ran all of the proper tests?

An HCV RNA alone will not get you approved. You have to have all the other ducks in a row.

An F-Score is pretty much mandatory

Many Insurance Companies and Pharmacy's require a Drug Test

The Full Liver Panel must be submitted with the request.

And finally the Geno Type to insure the proper Drugs are prescribed.  

Blue Croos Blue Shield is actually pretty good and I assume you have their PPO? Express Scripts gave me no problems but they are very picky when it comes to complete testing protocol.

JimmyK

Hi HepCat,

Welcome to the forum. We used to hear some not so nice pleasantries about ES on a regular basis. Use our search function and enter Express Scripts, you'll find some of the discussion on it. Here is a thread that may help you with your appeal. Express Scripts

If you can, please provide us some additional information. It helps us to know your lab work, the Liver profile, blood count, fibrosis stage, etc. I want to point out that your viral load doesn't matter in the big picture. The only bearing it has now is the potential to require a longer course of treatment on certain drug regimens. The viral quantity does not have any bearing on success rates with these therapies.

I direct you to the blue link in my signature, Payment Assistance/Advocacy. There you will find a number of organizations that will try to help you. Have your documentation together before calling, they will need you to refer to it.

I understand your determination to get this virus destroyed as soon as possible. We encourage everyone to treat as soon as they can, but HCV is a slow progressive disease. Depending on your test results and fibrosis levels, you may have time to get this resolved. I know that doesn't remove the concern of infecting others. Just know that it takes direct blood to blood contact to accomplish and with common sense precautions, is rare.

Hi Hepcat,

I'm sorry for the trouble you are experiencing. I really wish i had the knowledge/the expertise in this area to be able to help - but I just don't have this knowledge base.

I am from Canada and our systems are dif here, I have a hard time getting my head around this system, let alone the US system!

You do, yourself, sound extremely knowledgable about the circumstances you find yourself in, what with this unwanted immersion into this horrible loop (of systems). Putting people through this is just not right!

I recall others here, having troubles with being denied, waiting, appealing, due to not being "not sick enough" BS. Lesser drug choices being offered over requested drugs, etc. Others have spoken of ES here. But I am out of my depth.

Jimmy or Tig may be able to be helpful on this, perhaps others from Wa State will surface here with some advice/or experiences.

In the meantime, please could you clarify for me what GT you are? What your level of fibrosis/cirrhosis is, and by what tests did they deterimine your liver condition (your Fscore). Do you have any labs such as ALT, AST, bili to share? Ultrasound? Fibroscan? Why had your doc specifically requested Viekira Pak??? Did you and your doc discuss any other regime choices based on your GT??

Sorry for your trouble, hopefully one of the others here will be able to offer more info on your access situ. C.

Hello I'm in North Snohomish County. I am having extreme difficulty getting prescribed HEP3 medicine  through EXPRESS SCRIPTS. I'm now on my 3rd appeal for the ES preferred Viekira Pak. And this appeal is a so called EXPRESS SCRIPTS external appeal. Seems my health is not that bad according to ES, even though I can pass this virus on to anybody via contact with my tainted blood, with a HCV RNA Viral Load  of 5,609,274 IU/mL

My GI doctor is from WESTERN WASHINGTON MEDICAL GROUP and is  tenacious  with the appeal process. But I have tried to get any other medical advocacy persons or groups through my employer (a Giant NW Aviation Manufacture)  and my medical  insurance BLUE CROSS BLUE SHIELD to stand with me in my corner. My employer gave my a ticket to the local merry-go-round  some sort of giant  corporate consulting firm (Aon Hewitt) which has a medical advocacy broom closet there  to help you.

I have filed a complaint about BLUE CROSS BLUE SHIELD/EXPRESS SCRIPTS denial of prescription medications with the Washington State Insurance Commissioner. They said  of the giant Aerospace Company you work for  "It is my understanding your employer self-funds their employees benefit plan, are exempt from Washington State law" the office said to go to the federal level  to get help  from U.S. Department of Labors Employee Benefits Security Administration (EBSA). 

I know its about the money and corporate drug company greed but where is  a source to apply the correct and enough leverage against the drug dispensing CORPORATION, EXPRESS SCRIPTS to do what they are suppose to do, fill my prescription as written by my  doctor and covered by my insurance?  

Has anybody on this forum found any outside help with fighting EXPRESS SCRIPTS? Do I just sit by and play the appeal denial appeal game?

And perhaps find some sort of class action lawsuit against ES like they did against GROUP HEALTH here in the N.W.

HepCat17 2/16/17

Welcome.

I am from Texas but will talk to you anyway. LOL that is a JOKE HONEST! Welcome!

JimmyK

Hello and welcome to the forum. We have several members from Washington, many have come, cured and gone, but we still have a few. I'm from Spokane and transplanted myself to Florida almost 30 years ago. The winter was particularly bad that year!

Tell us a little about yourself. Lots of good people and friendly advice here. 

Hi and I'm new to the forum. Anyone from Washington State?