Hep C Discussion Forum

LC · Senior Member

RE: DENIAL OF HARVONI - THE DUMMIES GUIDE TO APPEALS!

Isiscat2011 · Guru

shadow10cats wrote:
you know gosh darn well I have NEVER ever implied that.

Sorry, BJ, but I certainly did not make it up. You not only implied it, you stated it directly, after citing to a study that you misinterpreted to mean that SVR doesn't help those with advanced fibrosis much anyway. You wrote:

"To me it kind of blew the theory for treating the sickest first out of the water "

I get that you are upset but perhaps you should consider where you are. We have members and others reading who are actually very sick. Some have decompensated cirrhosis and HCC. Many have no access to tx at all. Think about them for a minute. Thank you.

Matt Chris · Guru

Hello Eunice

Welcome to the forum, you have found a good place with people that have good insight into all things HCV.

I know how you feel about the whole process, its up and down, happy then frustrated. Sometimes both the medical side and the insurance side do not articulate correctly what the real protocol calls for. We have to be our own best advocate and most of us that have read about our HCV extensively will. When we hear things that don't make sense it can be depressing. We have to remember that alot of the people we interact with during this process has very little knowledge on the subject, especially the newer meds.

So don't give up hope, I certianly have not and its been 6 weeeks since my doctor prescribed me for 24 weeks of Harvoni and I still have gotten very little traction.

matt

shadow10cats · Senior Member

I am only going to say this once: ISIS

PLEASE quit stirring up trouble by taking things out of context. You make it impossible to have a civil forum & I'm sick and tired of having to defend myself because you know gosh darn well I have NEVER ever implied that. And I'm simply not going to keep butting heads with you.

Have a happy Holidays.

WorriedSo · Member

Hello Friends!
Just woke up to "The Drug Co. vs Insurance" After a month of waiting and lots of semantics w/ the Dr./ Surgeon. Yesterday, morning; an incoming phone call saying my insurance would approve for 28 days of Harvoni w/ the proviso-I have a blood-test on week four. I remind them that suggested treatment time was 12 weeks, she:"We'll hope for the best."
I asked if it there was danger in a time-lag between "Re-fills" & She said :"Your provider can expedite
matters-according to the performance #'s, this is an experiment."
O.K. fine-but ALL the Medical teaching post's [video-sights] where Dr's are schooling their students on how to treat and all statistical data show that no-one clears in 4 weeks!
Waiting to hear from my Doctor-now. HA! didn't send it: Urgent ![LOL] Their liver clinic said it would be[paraphrase]:Wrong for my insurance, to leave me in the lurch. I then asked, if we could still resort to other help[ Gilead/Pathways]- They said yes-Plus i still have one appeal;[ am Stage 4 -Class A.]which I'm not quite sure when to use, especially if my peeps are using new Obama appeals rules!] might mean i have to get appeal papers to the office by 9 AM tomorrow! HA!
Honestly, originally , there was a SNAFU -due to language-The Dr. said "some people weren't getting their
meds in time." I thought she meant Specialty Services- never dreamed this would happen, quite like this!HA!
Can only wait & see how it plays out. I ask ~Who~ would pay out $28,000 for pills -in order to save $56,000? and what patient would even ~start~ a regimen that was designed for 12 wks -knowing they were only getting 4?
Honestly, [I still think ,]it's a matter of patience and persistence. It's been like pulling teeth to get anything-out of anybody, I've had to ~ask~ about everything. WOW! Sorry for these people!!!! HA!
Any body else have similar situation going on? THANKS!" Worried So"

Isiscat2011 · Guru

mallani wrote:
Hi BJ,
I must correct your statement about the old Swedish study on HCC in post-SVR cirrhotics. This followed 351 cirrhotics, of whom 31% achieved SVR. 5 of these developed HCC in the 8 years (2 within 6 months, so they were present before SVR).
SVR decreases the risk of HCC by about 90%. Portal hypertension decreases in most cases, varices shrink, and the likelihood of liver failure drops dramatically.
F3-4's also have increased risk of HCC, but much less.
Patients who are F3 or less RARELY develop HCV related HCC or portal hypertension.
Nothing has been ' blown out of the water'. Cheers.
__________________________________________________________________________________________________________
Yeah, I was just about to say that. LOL Thank you, Malcolm.

mallani · Guru

Hi BJ,

I must correct your statement about the old Swedish study on HCC in post-SVR cirrhotics. This followed 351 cirrhotics, of whom 31% achieved SVR. 5 of these developed HCC in the 8 years (2 within 6 months, so they were present before SVR).

SVR decreases the risk of HCC by about 90%. Portal hypertension decreases in most cases, varices shrink, and the likelihood of liver failure drops dramatically.

F3-4's also have increased risk of HCC, but much less.

Patients who are F3 or less RARELY develop HCV related HCC or portal hypertension.

Nothing has been ' blown out of the water'. Cheers.

S

LC · Senior Member

+1

Isiscat2011 · Guru

RE: DENIAL OF HARVONI - THE DUMMIES GUIDE TO APPEALS!

angelseven · Senior Member

oh yes, and gilead will approve fast if you have the 2 denied appeals and income qualifications... I know another guy on facebook and he was denied by the VA, really??? arghhh, anyway, he faxed them the intake form and was approved right away

angelseven · Senior Member

Hey, you should go ahead a sign up with Gilead... call them, get that process going, they will help with the insurance and then if you are denied two times and your income is below 100,000 they will pay for the meds... You can also get the Harvoni co-pay coupon there, just sign up for it but don't activate it until you know what is happening... for folks that have medicare and medicaid gilead won't pay but they will refer you to organizations that will help pay for the drugs... good luck

shadow10cats · Senior Member

I have finally finished my appeal. Ended up being 6 pages long - I typed it up in Word as the appeal form they supply only has about 3/4 page of room to hand write your appeal.

I did quite a bit of research and got some great ideas online. Lots of links to sample appeal letters & how to counter various denials such as "not medically necessary".

IF I had no other recourse for getting Harvoni I would have taken my appeal a step further. I may have gotten some letters from the Dr I see for the Excessive Fatigue (I did a sleep study & day study & was diagnosed with it; not quite narcolepsy but pretty bad fatigue); the Dr who treats me for COPD, my therapist, Gen Dr and Liver Drs. I would have put in more supporting documentation and printed out the backup.

But since I have a plan "B" - which is Gilead's Support Path I decided not to do quite that much. Especially since so many are so sure I will be denied again anyway.

As mentioned in another post; I found an interesting study done in Sweden that followed patients for 8 years. They were folks with advanced fibrosis who treated and cleared. After 8 yrs these same people had a higher incident of liver cancer and other liver diseases than those who treated BEFORE their livers reached such a compromised state. To me it kind of blew the theory for treating the sickest first out of the water - and helps support treating everyone as soon as possible.

We'll see. It was a fun educational project to work on & gave me something to do to keep my mind off things for awhile.

If anyone is working on an appeal and would like to see some of the links I found let me know. Also if anyone is doing an appeal and wants to read mine to get some ideas or jump-start the process for you let me know I can easily black out anything personal.

My insurance will have it Friday and I hope to have an answer within 30 days - hopefully sooner. If they deny I will go to Gilead. That can take up to another 30 days.

I'm curious about anyone who got it from Gilead - how long the process took once they applied.

In any case, I am currently off work on medical leave but need to get back to work as soon as possible. My physicans assure me & info on Harvoni supports that my debilitating fatigue will clear up as well as the copd & brain fog (I can't stay focused on anything for the life of me!!). It should also clear up some if not all the muscle and joint paint. I have the hepC version of arthritis and when my hands hurt I can barely work on the computer. As an accountant who does analysis and spreadsheet work all day - well let's just say the 2 don't go together well at all. Granted being off work is nice- to a degree. I don't have as much stress & I can get more rest but financially it's a big ouwee! (it's just me and my cats - no rich or otherwise partner to help pay the bills!)

So for what it's worth that is why I appealed and if anything I learned can help anyone please let me know.

Groupergetter · Guru

Matt, this will work out. The same thing happened with my original denial letter. No basis in fact for the denial. Just a statement saying you've been denied and have the right to appeal. Which I did the same day, certified mail. Be persistent, and when talking with folks at the specialty pharmacy, don't allow them to get you frustrated to the point of losing temper. It almost seems that is their goal. They do make running record comments when talking. I wonder if in a way, they are testing to see who will persist until approval is granted. Perhaps they believe that if one is willing to make it through the gauntlet, 100% compliance is a certainty. If one meets the criteria, approval will come, it's just a matter of time. If the criteria isn't met, it becomes an exercise in futility.

When finally approved, I called a supervisor, thanked and asked her to put a note in the comments, letting everyone I'd dealt with know, how important their roles are in life and death situations. I asked that all call center staff be reminded of this. Whether she will share the request is unknown. We must continue to remind everyone in the process how important their individual roles are in saving a life. All contact needs to be personalized. "Bob (Thank you), Christina, Zane, I need YOUR help PLEASE." I am not case or appeal number. I am an individual who needs your help.

Your time is coming, knowing you will remain thankful for the new day. smile

Matt Chris · Guru

Update on BCBS latest Documents for Prior Authorization

This is for BCBS for Illinois, Montana, New Mexico, Oklahoma & Texas but could and does include other states that have BCBS.

In my denial letter they had a paragraph that said " upon request you or your doctor may have access to a copy of the clinical rational. medical criteria or benefit provision used to make the determination" Well last Friday I requested a copy and Sat.I got it in the mail hoping that it would shed some light on why and what data, and studies supported Prime Therapeutics / BCBS decision to withhold treatment of Harvoni based on prior use of Sofosbuvir, Ledipasvir, or any of the ABBVies new DAA's

I thought and figured they would site some study or old data to substantiate their position. To my astonishment in their 21 page document they do not give a single fact or proof to backup their position of not re-treating relapsers with Sofosbuvir & Ledipasvir . Not one frame of reference just rules.

I thought the term "Clinical Rational" meant sound reasons for treatment or no treatment.

All I can guess is it will change in the coming months or years when they are forced to follow the new guidelines from AASLD and other respected Liver Organizations that carry clout.

When you look at the current up to date evidence their is a lot of positive studies for the re-treating DAA's relapsers as long as it includes another and newer DAA's with it.

matt

shadow10cats · Senior Member

Audrey Davis-Owino
Director of Governance and Practice Guidelines
American Association for the Study of Liver Diseases

responded to my question: So what the heck are the most recent guidelines? not exactly how I asked but same outcome. Until sometime early December when they "plan" to update due to the release of Harvoni, this is the correct version:

http://www.hcvguidelines.org/full-report-view

Isiscat2011 · Guru

I don't find his comments terribly comforting from a patient's point of view. Like the AASLD guidelines there is plenty of ambiguity here. Why is he arguing that they need to work with payers when payers are, in reality, on the opposite side of patients in the present landscape where payers are looking for ways to deny tx. This isn't exactly a negotiable situation....either payers pay or they don't. Physicians are supposed to be calling the shots on treating their patients not "working with" payers to decide their patients' fate.

The medical community needs to take a firm stand, IMO. It is too soon to say but one could certainly argue they are betraying their patients by setting up restrictions to tx. If you read closely he is also speaking code for cost containment by finding ways to narrow the patient population. Why are docs so interested in trying to prognosticate on who will get HCC in the context of HCV tx, for example?

Just depends on how you interpret it. Not a clear message of advocating for patients by any means. Why are docs so concerned about costs? That's not really their job. They should be saying "HCV tx is medically necessary. Period." I'm getting a bad vibe from this. Kind of like how I felt when the "Who and When to tx" addition to the guidelines was published. Looks like rationing may be in the plans for some time to come. I hope I'm wrong.

Treatment options in the future may be dictated by treatment duration, genotype, cirrhosis, race and ethnicity, IL288 status, viral resistance and cost.....

The final speaker addressed the emerging specter of hepatocellular carcinoma (HCC), and testing to predict whether a patient will develop the cancer. James F. Trotter, MD, looked at alpha-fetoprotein as a marker for HCC.

He noted that while it is easy to test for, it is not an accurate measure because of false negative and false positives.

A desire to look at ways to enhance the accuracy of alpha-fetoprotein led researchers to consider ALT, platelets and age in addition to alpha-fetoprotein.

"This type of megadata analysis will likely be increasingly common, because thanks to electronic medical records, these large datasets are available and easy to study," said Dr. Trotter. "In addition, if modeling is found to be useful, it can easily be loaded on to a handheld device and readily used -- like the MELD score. This has not been possible until just recently. Finally, modeling is cheaper than actually doing a study. In these days of cost containment, this is another reason that these types of studies may become more common."

Miss B · Senior Member

A bit of info from the Liver Meeting in Boston for those of you filing appeals. http://tristarpub.com/aasld2014/?p=108

11/11/14 - The cost factor was addressed by Gregory T. Everson, MD, professor of medicine and director of hepatology at the University of Colorado, Denver. He noted that the cost of sofosbuvir has generated a lot of negative press.

But as hepatologists and as patient advocates and people who want to see more cures, we should keep in mind the price of not treating hepatitis C carries a burden. I would argue that we need to work with our payers, work with our government agencies, work with the local people who provide this care to improve access to this treatment, said Dr. Everson.

Isiscat2011 · Guru

Hi BJ:

The webinar was free of charge. They did mention that the update for the guidelines could be ready by the end of this month although it could be early December (which is what the AASLD website indicates). I wouldn't necessarily expect the new guidelines to clarify the ambiguity the prioritization tables created, since the committee already updated its position on insurance denials, but I would hope and expect to see the updated guidelines ushering out Interferon as a tx option. That in itself is a major victory for American HCV patients because it would effectively change the SOC and insurance companies would have to adapt by excluding Interferon for HCV tx.

The AASLD committee doc said that he had no idea the payers would interpret the guidelines to deny tx but I'm having a hard time believing that. I think the committee forgot to protect the patients. The AASLD membership (hepatologists in clinical practice) reminded the committee. Unfortunately, the damage was done and will take some time to undo.

The ambiguity might have been avoided, IMO, by simply giving the "Who and When to Treat" tables a different label, i.e., "Medically Necessary Treatment" and "Urgent Treatment." That would have foreclosed the payers from taking the position that tx was not medically necessary for some patients. I just don't understand why the AASLD didn't take this precaution for the patients.

-- Edited by Isiscat2011 on Monday 10th of November 2014 11:13:45 PM

shadow10cats · Senior Member

I read you were going to listen to some of the meetings at the conference. Weren't they like $45 or so?

Anyway, in regards to your second paragraph - totally agree; my insurance company took parts that supported them & use to deny me.

As far as the guidelines - DANG IT - it is confusing because the article was dated 11/9 and said it was the latest & greatest. I may have posted the wrong link too. The link I began at was:http://hepatitiscnewdrugs.blogspot.com/2014/03/costly-new-hepatitis-c-drug-raises.html

I think what happened is looking at it today, the date is just the calendar date & changes daily; regardless - doesn't mean the links are of that date. I didn't realize that yesterday, being on that site for the first time.

However, you can go to 3 different sites and get 3 different set of guidelines. And what makes it even more confusing is that they don't put a date on them.

-- Edited by shadow10cats on Monday 10th of November 2014 05:28:07 PM

Isiscat2011 · Guru

P.S. The physician who is on the committee that drafted the AASLD guidelines, and who spoke about the intent of the guidelines, is Jordan J. Feld, MD, MPH. If you are feeling really industrious you can contact him or one of the committee members and ask them for a written statement clarifying the committee's intent. The intent was never for use by payers to deny tx. That would carry some weight in your appeal. I don't know whether you will get it but it is worth a try. Your doctor could probably get that for you if he is willing. Here is a list of the panel members:

http://www.hcvguidelines.org/panel

Isiscat2011 · Guru

Hi BJ:

This is not new; it is from the guidelines that were published (in August I believe). Note that what you are looking at is the "High Priority" classification which includes F-2s anyway. Most of the insurance companies are presently limiting tx to the "Highest Priority" patients which is a higher tx priority classification. You have to look at the Class and Level Ratings to understand the prioritization. For example: debilitating fatigue is a Class IIa, level B. It will take some time before ins companies get around to approving the "High Priority" patients although anyone, even patients who are not high on the priority list, could potentially be approved via the appeal process.

The importance of the AASLD guidelines for purposes of an appeal by someone who is not classified as "Highest Priority" is not where you fall into the classification; it is the INTENT of the guidelines. The intention was that the guidelines be used by physicians who are prioritizing patients due to IN HOUSE MEDICAL RESOURCE limitations. One of the drafters of the guidelines made this point--the intent of the guidelines-- today at the AASLD conference. The guidelines are being used by insurance companies to prioritize patients for whom tx will be approved which is contrary to the intent of the guidelines. The intent of the guidelines is to assist physicians in allocating their resources; it has nothing to do with payers. That is your argument. Hope this helps.

When and in Whom to Initiate HCV Therapy Table 1. Settings of Liver-Related Complications and Extrahepatic Disease in Which HCV Treatment is Most Likely to Provide the Most Immediate and Impactful Benefits

Highest Priority for Treatment Owing to Highest Risk for Severe Complications

Advanced fibrosis (Metavir F3) or compensated cirrhosis (Metavir F4)

Rating: Class I, Level A

Organ transplant

Rating: Class I, Level B

Type 2 or 3 essential mixed cryoglobulinemia with end-organ manifestations (eg, vasculitis)

Rating: Class I, Level B

Proteinuria, nephrotic syndrome, or membranoproliferative glomerulonephritis

Rating: Class IIa, Level B

High Priority for Treatment Owing to High Risk for Complications

Fibrosis (Metavir F2)

Rating: Class I, level B

HIV-1 coinfection

Rating: Class I, Level B

Hepatitis B virus (HBV) coinfection

Rating: Class IIa, Level C

Other coexistent liver disease (eg, [NASH])

Rating: Class IIa, Level C

Debilitating fatigue

Rating: Class IIa, Level B

Type 2 Diabetes mellitus (insulin resistant)

Rating: Class IIa, Level B

Porphyria cutanea tarda

Rating: Class IIb, Level C

Ratings refer to the strength and level of evidence with regard to benefits of treatment in these

-- Edited by Isiscat2011 on Monday 10th of November 2014 05:56:52 AM

shadow10cats · Senior Member

NEWEST GUIDELINES DATED 11/9/14 -

HERE IS SOMETHING THAT JUST POSTED TODAY.... AASLD'S LATEST GUIDELINES - I JUST READ & THEY ARE INCLUDING THOSE WITH "EXTRAHEPATIC MANIFESTATIONS" AS PRIORITY PATIENTS. (AROUND PG 42)

I LOOKED THAT UP - IN THE SAME DOCUMENT & THAT MEANS BASICALLY OTHER ILLNESS YOU HAVE THAT MAY BE A RESULT OF HEPC BUT YOU HAVE BEEN DIAGNOSED WITH SUCH AS : DEBILITATING FATIGUE, JOINT PAIN, MYALGIA (MUSCLE PAIN), DRY EYES & MOUTH, COPD. I PERSONALLY HAVE BEEN DIAGNOSED WITH EVERY ONE OF THOSE. I DON'T RECALL SEEING THAT BEFORE BUT IF IT WAS IN THERE BEFORE, MY DR SHOULD HAVE KNOWN WHAT THAT MEANT & USED IT IN MY PRE-AUTH. HOWEVER THEY DO SPECIFICALLY NOTE: DEBILITATING FATIGUE & I DON'T RECALL SEEING THAT BEFORE; WHICH EXACTLY WHAT MY DR SAID THEY MIGHT ANNOUNCE AT TOMORROW'S CONFERENCE.

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/AASLD_HCVGuidelines_2014.pdf

Tig · Admin

Miss B wrote:
Here are two links with some good advice about how to file an appeal.
http://www.thejenniferjaffcenter.org/advocacy/health-insurance/how-to-file-insurance-appeals/
http://www.patientadvocate.org/requests/publications/Guide-Appeals-Process.pdf

Thank you for that information Miss B! Very important to have this kind of help on the forum!

Tig

Miss B · Senior Member

Here are two links with some good advice about how to file an appeal.

http://www.thejenniferjaffcenter.org/advocacy/health-insurance/how-to-file-insurance-appeals/

http://www.patientadvocate.org/requests/publications/Guide-Appeals-Process.pdf

-- Edited by Miss B on Saturday 8th of November 2014 02:40:44 AM

Miss B · Senior Member

BJ,

You are 100% correct. Selected information, taken out of context = very misleading!

BTW, they were hoping you wouldn't notice.

shadow10cats · Senior Member

This is what CDPHP cut from the AASLD guidelines as reason for denial:

"Current treatment guidance from the American Association for the Study of Liver Diseases (AASLD) places the highest priority of treatment for hepatitis C among individuals who have fibrosis stages F3, F4, or in some cases of F2 with significant extrahepatic manifestations of chronic hepatitis C disease such as mixed cryoglobulinemia and vasculitis."

Currently on AASLD.org website the guideline state :

Our recent addition to the Guidance prepared by a committee of leading liver experts from AASLD and The Infectious Diseases Society of America (IDSA) proposed that the sickest patients be treated first, but all patients who receive advice from their doctor to take newest medications should not be denied. The decision across the board should be in the hands of the clinician and the patient to make the decision. Unfortunately payers across America are denying treatment when a doctor has prescribed it for their patient. We adamantly disagree with this decision.

Our Guidance is not intended to be used by payers to deny access to treatment. In no way does this position contradict the evidence evaluated to produce the Guidance and the recommendation made in the Guidance to treat the sickest first, but recognizes need to treat all.

Some confusion exists about our process of advising physicians. The Guidance committee relied on the best available published evidence and expert opinion. AASLD has produced numerous Practice Guidelines, which require a tremendous amount of time and level of evidence. The Guidance was released based on a thorough review of current scientific evidence along with expert opinion. To wait for further evidence to appear in the literature as opposed to assessing what currently exists and relying on expert opinion -- which is what the committee did -- would be irresponsible to patients and clinicians.

ASLD remains committed to its partnership with IDSA and to continuing to fund and write the practice Guidance. As the only organization solely dedicated to the prevention and cure of liver disease, we applaud the seminal research of our members who made recent treatment options possible. .We are concerned about cost, but we also recognize the value of this drug to patients with hepatitis C. It's a one-time treatment, with minimal side effects and a great cure rate. Treatments currently available and those we are confident will soon receive FDA-approval should be heralded as remarkable advances in curing a disease that was once fatal.

Would I be out in left field if I said , in my "humble" opinion - CDPHP slanted the intent of the guidelines intentionally misleading me?.

shadow10cats · Senior Member

thank u and i was actually a bit surprised when i called my docs office and asked when he would do the appeal. they said "we don't do that". I thought that was really odd and based on what i've learned it is. But none the less they support me and will write a letter; as will my GP who knows about every thing. I see 4 other specialists; I am actually seeing my COPD dr this Friday for some tests & I will ask him for one too. Heck, my ins company can see that for themselves who I see.!

There reasons for my denial are: they don't have coverage info for Harvoni yet. I guess that means they don't have anything to go by to make a decision? That's what Gilead said.
the blurb from the AASLD that I mentioned before - but they left some parts out & per the AASLD their guidelines are not supposed to be used to deny treatment
and Section VII.10 of the NYSHIP HMO Member Contract excludes coverage for health services that are not medically necessary. I have a copy it and it refers to preventative care rendered that is not for the purpose of treating a particular illness. It makes no sense! It is definitely medically necessary.

I actually like this sort of a challenge albeit the time it take. And I have the mind set that I will win -one way or another ! But then I am a scorpio, Italian, Finn Swede, female in my 50's! Go figure

Isiscat2011 · Guru

Hi shadow10cats:

That actually is some good, sensible, advice (not being condescending here). I just wanted to add a couple of things that may help:

1) Rule number one in the world of medicine is that Doctor's Rule. Yes, insurance companies are trying to take that away from them, but in the end insurance companies must defer to expert medical opinion (hence they follow AASLD guidelines) and your treating physician is in the best position to decide what you need.

Because Doctors Rule you need their support to win an appeal. If your doctor is not supporting your appeal then consider trying to find an HCV tx doc who will. There are time deadlines for appeals so don't miss those. Your HCV doc is best but support from any treating docs will help. Preferably they should connect the extrahepatic health condition to HCV or at least present the possible/probable connection.

2) This probably goes without saying but be honest. Don't try to attribute every ache and pain and blue mood to HCV. They will see right through it and deny you straight away. Keep it reasonable and sincere.

3) An appeal directly from a medical professional has greater chance of success but if your insurance company allows it, and you are willing and able to put the time in, you can do it yourself. Just try not to let it consume and upset you because stress will be worse for your health than simply waiting it out.

Good Luck

-- Edited by Isiscat2011 on Tuesday 4th of November 2014 12:57:13 AM

shadow10cats · Senior Member

Ok - back to appeals.

For those interested or who find themselves being denied; you should appeal. My insurance company allows me to do it; I guess some require it from the Dr. I just know my Dr. said I have to do it & I have the appeal form from CDPHP. Of course, these guys hope you don't appeal & just go back to waiting. However, from my experience if you appeal & present a valid & strong case you have a really good chance of being approved. That means some leg work & time away from chat forums, ebay, soaps & the walking dead but it may well be worth your while. Since each appeal is decided upon it's own merit you want to have one that gets their attention.

Things to include: Supporting letters from all the Drs you see; not just your liver Dr. For example: if you see a therapist due to depression from living w/ this disease & symptoms, or you have developed other health issues that can possibly be attributed to the Hepc such as COPD - then you want one from your Pulmonologist, or if you have been diagnosed with chronic fatigue you might be seeing an Otolaryngology or Sleep Medicine specialist; if you suffer from joint & muscle pain you may be seeing a Pain Mgmt Specialist. You get the idea. The reason to include these is because sometimes a person can be completely debilitated by the symptoms & off-shoot illness that arise from contracting HepC yet have very little liver damage. That is sort of my situation. So this drug will make a huge difference in the quality of my life & hopefully get me back to work full time! It isn't always about advanced cirrhosis.

You want to make sure you contact the insurance co & get copies of the pre-auth the Dr submitted, their denial letter & all documentation they used to base their decision upon. You have a right to that so don't let them try to tell you otherwise.

It is also recommend that you include a personal note about how the disease has affected your life in a negative way.

If, for NO other reason - you must appeal a denial from your insurance company & get a 2nd denial from them before you can go to Gilead & get them to supply you with the Harvoni via their support path. Their criteria is: denied twice by your ins company, you have HepC, G1, a US citizen & household income under $75k (i think that's for a single person so that is quite high). I know this bec I personally spoke to them this morning.

Here is a link to some formats for appeal letters; you'd have to revise to your needs but it's a start: https://www.leememorial.org/businessoffice/PDF/Sample-Letter.pdf

Here is a good medical site to learn things & keep on top of research etc - may have some dialog you can use in your appeal: http://hepatitiscnewdrugresearch.com/

My insurance is thru NYS (NYSHIP) so I went to their website - it was very informative; my rights, what to do if denied, how to file a complaint against an ins company; etc. You should have a website for your State Ins Board.

So that's where I am at. YES I am going to appeal. It's not a waste of my time. It will either get me the drug from CDPHP or I will then go to Gilead & get it from them. To me it's worth it. I won't reach my goal of being cured by the end of the year but at least I am seeing some light at the end of the tunnel.

Cinnamon Girl · Guru

Ok, I`ve opened this thread again now so that the discussions can continue, for those who are interested.

Let`s all keep this conversation civil and courteous from now on, please! ~ Jill

shadow10cats · Senior Member

Sorry BJ, I`ve deleted your comment because it`s offensive and abusive to another member. I do sympathise with how you feel, but please don`t let your frustration get the better of you.

I`m closing this thread temporarily until everyone calms down...Jill

-- Edited by Cinnamon Girl on Saturday 1st of November 2014 08:27:48 PM

Isiscat2011 · Guru

Tig56 wrote:
= =
Tig

That's probably the best thing posted yet on this thread. Definitely the cutest. I think we should all start speaking with Emoticons.

I'm Think I'll eat a Strike that. I'm just going to make a cup of

Tig · Admin

= =

Tig

Isiscat2011 · Guru

Gracie wrote:
This is a site for information and support and you deserve to get both without feeling bullied. Hang in there... Frustration levels are peaking for everybody as the thought that a curing treatment could be held from us is the worst feeling ever.

Frustration and anxiety levels are high and they only increase when you feed them. Encouraging aggressive action at this stage only serves to feed the frustration because it will not be effective. Your recourse for an insurance denial is an appeal. You can be persistent in pursuing your appeal but whether you win or lose will depend on a number of primary factors most of which are not remotely within your control.

Insurance company decision makers have read the AASLD guidelines; they know their policy provisions; they have lawyers who know the law. They know how to apply all of these things to favor their position. All your thrashing about will not place you on a level playing field.

Getting treated immediately if you are not in a priority category is a crap shoot and you cannot control the outcome. What you can do is work with your doctor and accept that you will be treated but it is not going to happen immediately.

As far as "feeling bullied" is concerned that is within your control. I'm sure if I was prone to playing the victim card I could feel bullied too. It has been suggested that I am not proactive, am a control freak, and a few other things. This process is a test of character and your coping skills folks. Take a good long look at yours before you start blaming everyone else for how you are feeling.

Learn some patience for goodness sake. Learn to accept that you cannot control every outcome. And if you need to blow of some steam how about going to the Rant and Rave section and doing just that. Just be careful that isn't all you do because emotions feed on themselves and perhaps worst of all these emotions can be very contagious. Misery loves company. You don't have to make waiting a miserable experience.

shadow10cats · Senior Member

you know i wasn't going to check back here I was just like "ok this isn't the place for me".

but I'm glad I did bec it was your comment Miss B that kind of did it for me but I am so glad I came back & had the chance to see you clarify yourself. I took it the wrong way.

I did start this thread for that exact reason so Ok ---- deeeeepp breath; and keep truckin forward

Miss B · Senior Member

BJ,

Thank you for creating this Dummies Guide to Appeals thread.

Sorry, I should have clarified that I don't think you sound "entitled" I was simply observing the comments directed toward you on the Harvoni Train thread.

I only meant that since your posts about you getting treatment don't seem to be welcome on the Harvoni Train thread, maybe we should use the "dummies" thread for posts on the appeals topic. After re-reading what I wrote on the Harvoni Train thread, I see that I was unclear.

This thread is a great way for us to support each other in the appeals process.

pl1952 · Senior Member

BJ, I find this helpful in the event I'm denied by my insurer, United Health Care. My Dr.'s appt. is mid December. He wanted to wait till then because he knew it would be crazy right after 10/14. But I think I'm F1, fibroscan is 4.5 and last viral load around 800,000 and treatment naive. Am I worried about a denial -- you bet I am...All I can do now is wait till my next appt. In the meantime, I'm gaining knowledge about these things that are happening..The stuff you are posting is helpful - thanks for the legwork...I appreciate it! And good luck with your appeal! Keep us posted!

Gracie · Guru

Shadow... I agree with your post. I think the more information we know up front the better armed we are when we apply, are refused or have to appeal. Let's just start a new post and name it "Advice For Harvoni Appeals" or something similar so we can all share information. This is a site for information and support and you deserve to get both without feeling bullied. Hang in there... Frustration levels are peaking for everybody as the thought that a curing treatment could be held from us is the worst feeling ever.

shadow10cats · Senior Member

I don't know if I shared any useful info or not but since certain people on here won't let this be & have resorted to calling me names and thinking I think I'm entitled because I am fighting to receive Harvoni; I will go ahead on my own. It's too bad but people like MissB & IsisCat just aren't on the same page as me and I was okay with that. (MissB really confuses me because below she posts what she suggests might be helful but then on another thread calls me entitled???) I don't know, instead of focusing on what interest them they have chosen to resort to childish bully practices to silent me. I know there are people who join forums for the sole intent of controlling the outcome of discussions or information shared. And although I've never said a cruel thing to anyone; even these people, - it's too hurtful to try to help when this is what I get in return from other members. Take care and I hope that all this gets resolved in everyone's best interest.

-- Edited by shadow10cats on Saturday 1st of November 2014 06:28:56 PM

shadow10cats · Senior Member

I time Friday online doing some research; getting my strategy for my appeal. The following is info that is generic to the appeals process & may be of help: in no particular order..

How to appeal a decision: - You can appeal to the insurance company - your states depart of insurance - you can file a lawsuit

Things to include: - Have your doctor write a letter explaining why you need the drug. - include journal articles showing the effectiveness of the treatment, Gileads protocol for which the drug was developed. AASLD Guidelines. The key is to get the doctor to make a stronger case than the insurance company has and make it hard for them to say its not medically necessary. Insurance companies dont like lawsuits, he says, but most patients dont like to get involved in litigation.

Find out What your state says insurance must cover - Many people dont know that each state has a mandate of treatments that forces health plans to cover certain treatments, regardless of what the insurance company policy is . Visit the Web site of your state department of insurance.

Denials should be challenged when: (1) the denial is clinically inappropriate (by APA guidelines); (2) there are inherent conflicts with the insurer; (3) the insurer has logical fallacies in its reasoning; (4) the company violates the policy or plan terms; and (5) the company violates the law.

Get a copy of your entire Claim: Two critical things to know about ERISA appeals are that the insured is entitled to a copy of the claim file before the appeal is decided and the insurer or plan may be entitled to discretion in deciding the appeal. (The claim file, also termed the administrative record, is any document, record, or other information that was relied upon in making the decision about the benefit, or is a statement of policy or guidance with respect to the plan concerning the denied treatment.) The insured is entitled, upon request, and without charge, to a copy of the claim file. NOTE: If the same entity is deciding whether to pay claims and is paying approved claims, the Supreme Court has ruled that there in an inherent or structural conflict. Conflict of interest may be shown when the reasons for the denial are inconsistent or insufficient, determining a material fact without supporting evidence, failing to follow plan procedures, failing to provide a full and fair review of the denial, and acting as an adversary bent on denying the claim.

"fail first" policies - Several states, including California, New York & New Jersey, are now considering legislation that would ban so-called, "Insurance plans should not come between the patient and the doctor who is right there with them, deciding what the best course of treatment is."

NYS Dept of Health / What is the treatment for hepatitis C
- It is important to know that not everyone will need treatment. The decision to treat hepatitis C is complex and is best made by a physician experienced in treating the disease.

Contact Gilead: They may have a group that assists patients in navigating the insurance approval process as quickly as possible.

Under Obama-Care / New appeal rights - If you disagree with a benefit decision by your insurer, you now have a standard, reliable way to dispute it, including guaranteed access to an outside, independent appeal panel if the insurers internal process is not satisfactory. If it is an urgent-care issue, decisions must be made within 72 hours.

- However, (there's always one of these!) Not all plans have to follow these new rules. If your insurance plan is self-insured or was in place before March 23, 2010, this change may not apply. Check with your insurer or employer.

-- Edited by shadow10cats on Saturday 1st of November 2014 04:44:28 PM

Miss B · Senior Member

Cost of Harvoni vs. Breast Cancer

Would a patient be told "You only have stage 1 cancer, let's wait until it's stage 3 or 4 before we treat it." Obviously not, that's why EVERYONE with HCV should be treated. AASLD emphasized that is is important to treat ALL & URGENT to treat F3/F4/cirrhosis.

Ellen Baker estimates that her treatments for breast cancer, including chemotherapy, mastectomy and reconstructive surgery cost about $100,000, and her share after insurance was about $20,000.

http://www.dailyfinance.com/2011/10/05/breast-cancers-financial-toll-the-high-cost-of-fighting-for-yo/

Miss B · Senior Member

I think this thread may be the best place to post info to support the appeals process & to vent frustrations with denials & appeals. I have not been denied yet but I can feel it coming.

Some thoughts...I think we can all agree that those with F3/F4/cirrhosis should be given priority for treatment. However, those of us with "only" F1/F2 have every right to vent our frustrations here and share strategies & info on how to advocate for ourselves to obtain treatment. This is not stepping over someone with more advanced disease.

I suggest that anyone who wants to share frustrations with obtaining treatment (including those with F1/F2), do it here, not on the Harvoni Train thread.

-- Edited by Miss B on Saturday 1st of November 2014 02:19:10 PM

Miss B · Senior Member

Josh,

You mentioned your body takes longer to heal now. Have you ever had your Vitamin D level checked? I was recently to the Dr. for a knee injury, he told me a low Vitamin D level will cause your body to heal slower. Low vitamin D is very common. He checked mine, & it was a bit low so I'm taking vitamin D now. Of course, check with your liver doctor to make sure it's safe for you.

On another topic, no matter how frustrating the process to get meds becomes, please don't start drinking. You are too smart for that.

Josh Haynie · Senior Member

pushed the bookmark these links button...

arming oneself with all these cool articles we find .. goes a long way in the fight we will all have about denial with our insurance agencies.....

i probably wont be to ask for any treatment till mid december then wont find out till January or mid Jan if approved you know the denial letter then from thier move to appeal so realisticly i bet i wont get

nothin till Febuary if i had to make a educated guess... but i will indeed be well armed for the FIGHT/Appeal and i intend to win... course by then Abbie V will be out so there will be more options on the table but... if everything so damn expensive expect the same argument to appear ... ILL be ready iLL state the truth that I think my hep C makes me overly tired sum days and that I take a exceptionly long amount of time to heal from cuts or any wounds ... and it probly causes poor nutrient absorbtion ... and my white blood cell count is just above the low threshhold from constantly battling the virus so that isnt good either i think.... um thiere argument that im only F2 and not bad enough yet i counter that with I have a pretty high VL count of over 5 million ...

im gona have a appointment with my FPN in like 2 weeks so ILL request a VL count test to update my stats ... most days I feel normal or pretty good but i have noticed these things for quite sum time..... and not treating a disease or virus when you are insured and insurance has the drugs is just asking for trouble... so them blocking is wrong on so many levels ... and i will probably in no certain terms be rational and calm headed but could become an ass-*$le pretty quick in my denial process....

im optimistic and truly think since im treatment naive that I will get sumthing... I just dont know what hell i may end up with Peg and ribavarin.. and thatll be fine but iLL say you know if this dosent work you just wasted money on me so why not lets just goes with those New line of Gillead or Abbie V DAA and save money .... makes more sense... but like I said i know iLL get sumthing and that i believe is deffinetly the direction any of us should want to go :)

Miss B · Senior Member

Another bit of info for your appeal:

http://www.lucindaporterrn.com/harvoni-the-hepatitis-c-cure-that-most-cant-get/

"It makes no sense to only treat those with cirrhosis. We dont tell people who have diabetes that we will treat them after they already have nerve or retina damage. We intervene early, trying to avoid these horrors."

I looked up the average annual medical costs for care for a patient with diabetes; $8000. That's EVERY year, for a lifetime. That could make the cost of Harvoni look insignificant.

shadow10cats · Senior Member

thank u miss b

i want to include such info in my appeal. it still floors me a pediatrician reviewed my claim. not that it would have mattered of course; i'm sure they have a cheat sheet that says: stage 3 or 4 liver disease? No? DENIED

a cave man could do it!

Miss B · Senior Member

Hi BJ,
I do think we need a thread such as this to gather info on how to approach an appeal. It's possible that your insurance company issued their criteria before the AASLD posted their clarification. It's more likely that they choose to ignore info that would require them to treat all patients with HCV. I will repeat the info you posted below & add a bit to it. Clearly, the AASLD recommends treatment for ALL but with priority to F3/F4/cirrhosis.
Wishing you good luck.

http://www.aasld.org/aboutus/publicpolicy/Pages/aasldhcvposition.aspx

"Our recent addition to the Guidance prepared by a committee of leading liver experts from AASLD and The Infectious Diseases Society of America (IDSA) proposed that the sickest patients be treated first, but all patients who receive advice from their doctor to take newest medications should not be denied. The decision across the board should be in the hands of the clinician and the patient to make the decision. Unfortunately payers across America are denying treatment when a doctor has prescribed it for their patient. We adamantly disagree with this decision.

Our Guidance is not intended to be used by payers to deny access to treatment. In no way does this position contradict the evidence evaluated to produce the Guidance and the recommendation made in the Guidance to treat the sickest first, but recognizes need to treat all."

AND

http://www.hcvguidelines.org/full-report/when-and-whom-initiate-hcv-therapy

Successful hepatitis C treatment results in sustained virologic response (SVR), which is tantamount to virologic cure, and as such, is expected to benefit nearly all chronically infected persons. Evidence clearly supports treatment in all HCV-infected persons, except those with limited life expectancy (less than 12 months) due to nonliver-related comorbid conditions (See Unique Patient Populations). Urgent initiation of treatment is recommended for some patients, such as those with advanced fibrosis or compensated cirrhosis (see Table 1).

shadow10cats · Senior Member

I am genotype 1 / Grade 2 / Stage 1 I average a VL of 5 million but has been as high as 12. My liver panels have been in the normal range but the last one both ALT and AST more than doubled. Just based on the way I feel and the decline in my health I can tell that things are progressively getting worse & doing so in shorter pds of time. Cirrhosis is not disabling me - it's all the other branches that have sprouted off the trunk of HepC. It's all relative.

Brownie · Senior Member

BJ,

I never had to fight with the insurance company, my hepatologist's office personnel did all the work. I was just told not to worry, they'll deny the claim but it WOULD get done.

Since I never got my file, I don't know what the "independent doctor's" specialty was that influenced the panels decision to approve me. This was in January for the off-label Sovaldi/Olysio combo. It being so new and catching insurance companies off guard helped but I also have cirrhosis and fatty liver disease. How could they not approve me, yet I was denied. Thank goodness for that independent doctor!

I would like to think that added doctor on the panel was a Hepatologist or a GI, someone with much knowledge of the disease in question. A Pediatrician just doesn't sound right to me?

I just wish everyone could get cured! Out of curiosity, what is your genotype?

* Just read your latest entry. I only gave you the thread that this wonderful forum had already posted. I knew of the AASLD guidelines as they've been slowly adding to it all year, but it was here where I read the updated introductory statement. Thank Jill (Cinnamon Girl) and the others (including Isiscat) who posted or commented on that thread. But Please, let's just move on with helping each other and let the past be just that!

-- Edited by Brownie on Friday 31st of October 2014 11:31:58 PM

shadow10cats · Senior Member

I just wrote to the COA of AASLD, Nellie Sarkissian.

I provided a copy of CDPHP's denial, highlighting the part where they refer to AASLD guildlines as a basis for this decision. (since, as CDPHP stated, they have no criteria of their own for Harvoni) (even if they do come up with their own criteria, they can't come back later & use it to deny me as I applied before they had any)

There is obviously a HUGE difference between what they put in my denial and the AASLD actual guidelines.

As a matter of fact it's so insane - this part alone blows CDPHP out of the water:

"Unfortunately payers across America are denying treatment when a doctor has prescribed it for their patient. We adamantly disagree with this decision. Our Guidance is not intended to be used by payers to deny access to treatment"

I simply asked AASLD that if indeed, CDPHP is misrepresenting their guidelines to please contact them and ask them to stop.

Had it not been for this topic on this forum I would not have know about AASLD from Brownie. Thank you !

And again, please stop with the strong arm tactics & condescending comments to stop this discussion. This forum is exactly what this sort of conversation is for! And if you aren't interested please leave those of use who might be alone and find something that interests you.

-- Edited by shadow10cats on Friday 31st of October 2014 10:36:45 PM

-- Edited by shadow10cats on Friday 31st of October 2014 10:40:13 PM

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