Hep C Discussion Forum

Josh Haynie · Senior Member

RE: Harvoni & Treatment Criteria

Miss B · Senior Member

Maddie,

Thanks for posting that link. There is information in that link that conflicts with the latest AASLD guidelines on who should get treatment. Anyone with that insurance coverage who has been denied should be aware of this when they file an appeal.

The Anthem/Express Scripts P/A says:
"According to the American Association for the Study of Liver Diseases/Infectious Diseases Society of America (AASLD/IDSA 2014), it may be advisable, in many instances, to delay treatment for some individuals with documented early fibrosis stage (F 0-2). In these instances, waiting for future highly effective, pangenotypic, direct-acting antiviral agent combinations in interferon-free regimens may be prudent."

I don't know when in 2014 the above info is from, but AASLD has recently posted clarification that all patients with HCV should be treated except those with less than 12 months to live.

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).

lilbit · Senior Member

Josh I feel like folks are beating you up in the form of trying to help you. They definitely have good points but at 30 I would not have done much listening. I am 64 now, had hep C for a very long time and am finally in the middle of treatment. It is a one time shot for me. If it doesn't work, I gave it my best shot. No one will be able to say she didn't even try. But, I agree with you fully that life is meant to be lived. I don't drink and drug any more but that was just a personal choice. I intend to live my life doing as I damn well please whether its good for me or not. I get very tired of folks telling me..eat this, don't eat that, drink this, don't drink that, you are to old to snowboard, basically grow up is what I hear most often. lol do you know what my reward for kicking Hep C's butt is going to be. I am going to buy a Harley. Oh and I want to sky dive again. Have not gone since my 40th birthday. Every day to me is a gift and I plan on using it to the best of my ability. I do tons of volunteer work (even now while on treatment) with a drug rehab and try my best to give back what I have got. My heart goes out to these folks that have gone through horrific treatments time and time again. I know for a fact that I would not or could not have done that. They are after what is important to them. Live and let live is my attitude for life. Doesn't everyone realize that you could keel over dead tomorrow. Better enjoy today because tomorrow is not promised.

maddie · Senior Member

Sorry if this link has been posted before....forum very active as of late. Just thought reading over Anthem/Express Scripts P/A form for the provider could be helpful and informative.

http://www.anthem.com/provider/noapplication/f0/s0/t0/pw_e225443.pdf?na

Josh Haynie · Senior Member

legit numbers and facts

performed by Qwest diagnostics .... i can take a picture and post them...

-- Edited by Josh Haynie on Thursday 30th of October 2014 10:59:47 PM

darkstar · Senior Member

It is sad when someone uses a thread in this fashion, probably don't have HCV. But I am glad to hear that a 30 yo is going to get a PSA checked, consistent with your other comments

Josh Haynie · Senior Member

:) lol i pay taxes .... hard to say what i will do I just continue to do maintenace sub contracted for the state 2 days or more a week from 6am-230 pm 30 minuet lunch then M-F I clean the DMV and a mental Health cottage from 5pm-to like 8 or 9 pm... thats a total of alota hours on sum days... I try to catch a nap between 3pm and 5... have no idea what to do ... would like to see the ocean for the first time..... but im pretty happy I guess having most everything i want....... including a car i dont drive and pay insurance on ..need to get my DL which ive never pursued....

im surrounded by cancer my dad and 1 of my bosses.... so i feel pretty to loyal to them and feel i should help them ..... i mean i could move and work sumwhere else but im not going to do that anytime soon i dont think .... as far as my extra curricular activities I mainly just hang out the nighbors or stay here at home play games hang out with my cats or red news on the internet daily... I need to start working out or Jogging but is hard to find the time ... I weigh like or am down to like 126Lbs.... still you can be in shape and still be out of shape at the same time...

as far as anything else goes I know for sure at sum point I shall smoke weed or drink again but it wont be anything that kill me anytime soon... ILL be glad if i Live another 30 years in good health.. or beyond that... If your gona die you may as well have a little fun doing it... Just dont speed up the dying process to much but also know there is no avoiding it .... you can be Jack Lalane and you will go down just as fast as if you were Mich Jagger ..... but ya no rush .. still anything i do is still proably 6 months down the road or more so dont start the condemnation till then :) but I hear what you guys are saying about being stupid and any future stupid activity will be light.....

my number 1 priority is beating Hep C and i know in my 30s is definetly the time to do it before it starts really creating any significant damage....I am F2 status as far as I know and will request another VL count from my FPN in a week or 2 and a PSA test....... i suspect no prostate issues but i belive in catching things before they happen ... or will ask for test i dont even need but good luck getting a doctor to agree to them....... my demeanor is happy :) and bored at the sae time ... but i feel very fortunante .... hard to say what the future will bring but im pretty prepared or have indeed calculated forseen and unforseen events... so im very aware of what will and can happen ....

but ya these days im just focused on Hep C... thier will be plenty of time for all that other stuff later ........

shadow10cats · Senior Member

Josh:

wow I am impressed! Sounds like your really living it up. Making all the right choices. Got a bright future ahead of you boy. Might even make a movie about you "Dumb & Dummer part 3"

Seriously tho; you obviously are feeling a whole lot better than most of us so why not use all that energy to hold up your end of the bargain here on planet EArth. We all have a purpose - something we are here for so quit apologizing for your stupid choices and make something of your life. Find something you love to do and become the best at it and I don't mean drinking, getting high, gambling & popping Hydros!

But if you choose to waste your life & ruin your health - PLEASE - don't do it on my dollar or at my expenses!

Josh Haynie · Senior Member

and for the record :) I do care about you guys ... thats why i come here everyday to see about peoples progress and how your guys are feeling....

and i always value your knowledge and insight... i may not agree with sumthing or other but i know it can still be the truth ....

my mouth feels a little better and i have decided to stop taking 1` hydrocodone every 4 hours and 2 ibuprofen... .. 6 days is good enough i think...

was also starting to mess up my regularity .. so that was slightly alarming... almost like BPH but i knew it was the pain killers ... and having hep c you always are safer with Less is more.....

but i will have less if i need and or want it... I choose whether i like sumthing or not ... stop on my own all that .. never needed help... lkucky i guess ....i did other things in the past but 1 day i decided you know i dont like this anymore ... but ya im doing FINE...

true story ,,, ive got everything i pretty much want ... but have gambled large sums of money and have often lamented in sadness in my stupidity only for God or the holy spirit to say to me how many times have you done this ? you worry aboput everything or about tommorow like you did 5 years ago ... and look i have taken care of you this whole time... and I go damn it your right...

ive apologised numerours times for my stupidity... but God loves me and knows I love and trust him even though i may not agree with sum things i experience and see ... as im sure he feels the same with me ... I can never deny that i know he is there ..... ive seen .. and experienced far too much to contradict that...

as a catchy song i heard awhile ago it said Dont worry be Happy.. help me to change the things that i find un acceptable and to accept the things i cant change :) heard that 1 too

but that right there in a nutshell is me saying yes I care alot ...... and maybre sum parts not at all ... or maybe it just means ive accepted it and thus am fine with it...... IDK

Philosphy and Psycology are very intresting so is Morality ... have a good night ILL be reading all the other active board headlines as i do everday and or night...

If u SVR and i say nothing in my heart you know i say to you good for you my friend im glad for you... and if you are in pain then im proably feeling bad for your situation as well ....

sorry for my scathing Diatribes :) jumped the gun on ibuprofen i just took 3 but i did not take a hydrocodone....upper gumline is still very sore ... its annoyiong but not that bad i just ignore it best i can and do what i normaly do .... owie

-- Edited by Josh Haynie on Tuesday 28th of October 2014 07:03:09 AM

Josh Haynie · Senior Member

you all have valid points... but mine are pretty valid too... there are deadlines to everything you know that... im just pretty comfortable with them then most people...

as far as the pain and the money well that may be part of the trip ... and im aware of that ... i highly doubt it though ... in the day and age we live in with all this super medicine I know for fact that I will no doubt get in 3 years or less... and heard from my gastrointerologist for a fact that after SVR alcohol effects your liver Nada ... other then your AST and ALT numbers....

my grandpa was 88 when he died and he had scotch and water not everyday and a beer or two.... no he didnt or never had hep c......

my dad who dosent drink at all or who hasnt in crap over 20 years ? he only chews tobbaco has stage 4 cancer.... so what i think is the truth like my dads sister said to me 1 time in the car is

sum people can get away with alot more then other people ....

my dad says i smoke too much i average 10 cigaretes a day for the last 16 years... and even though i know thats not astronomical i believe in the long run... it will lead to possibilites of lung cancer ... so here in about an hour or two i will order a electronic much healthier cigarete that only has nicotine flavor and filler Juice you vaporise....

I will abstain from alcohol as ive been doing but like i said im going to get tired of waiting at sum point....

im not saying any of the things i say to be mean or conceeded all this i say is pretty rational ... and I monitor everything in great detail and even when i SVR i will continue to montior everything....

thanks for telling me how dangerous sum of my ideas are though ... i appreciate the fact that you care enough to try and detour me... but at the end of the day .. TO THY OWN SELF BE TRUE

can a person that drinks and dosent drink hang out and be friends ???? i hope so :) I warn people too not to overdo anything we all read to many news reports of people being stupid with thier choices....... But ya thanks

Mugsy · Senior Member

Josh I don't want to sound like a Mom, but I have kids your age and I want you to know your thinking is flawed. The doctors say to quit drinking and it's not because they want to harass you, it is because they want to save your life. I have heard many people compare drinking while infected with HepC to pouring gasoline on a fire. Alcohol damages your HepC infected liver... facts are facts. If you think the doctors need to monitor you to make sure you are alcohol free you are wrong. It isn't their job, it is yours. You can be alcohol free I am sure there are many people here who have had to quit alcohol who really didn't want to but found the strength and reasons to quit. I understand your frustrations we are all in limbo until these insurance/pharmaceutical company issues get ironed out. Vent all you want we will listen and we will care. Please reconsider your options. Again, I apologize for speaking to you like a Mom but it's how I feel.

Take care

Mary

Michaele · Guru

Isiscat , Am I glad some one had the nerve to say this to the boy. Hope he knows after tx he wont be able to drink, he shouldnt. Getting tx is like playing the lottery, some are luckier than others, and ya have to play to win. Im still waiting , its a coin toss. Michaele When I was an RN decades ago, I had pts that were hospalized for complication of cirrhosis. It was not pretty, and my heart breaks when I think of anyone going thru all that and it scares me stupid.

-- Edited by Michaele on Monday 27th of October 2014 06:31:17 PM

-- Edited by Michaele on Monday 27th of October 2014 06:32:26 PM

Isiscat2011 · Guru

Josh, Josh, I just want to smack you upside the head! biggrin If you were a family member or close friend I would tell you to "Grow the "F" Up." You are not the only person who will be impacted by your irresponsible decisions. I would say this with love, of course.

If no progress is made by February your plan is to start drinking again? Is that the best you can do?

Oh well, some people like to learn the hard way. You may very well be one of them.

Dzdayscomin · Senior Member

Josh I hope you at least stay off the alcohol...not because I'm being judgmental or anything but because If i had your choices to make when I was 31 i'm not sure I would have stopped drinking beer either, but looking now at what this has become I can only wish......I don't want you to have to wish................

You can control it, It's easy to say yeah whatever happens I'm ok with it...but it doesn't happen like TV, it's grueling and slow....What I'm talking about is full on F4 de-compensated liver disease after the HCV has done it's damage there isn't much left of life...I have a great job at the top of a multi million dollar company that I've worked at for almost 32 yrs, and make decent $, but it's worthless, because I don't have the desire or strength to have fun with it, and will probably have to give it up, I have a great house and property.... that I'll probably have to sell so I can live someplace I don't want to because it's cheap enough to live on disability, I have a granddaughter and another grandchild on the way, but I rarely get to see them because I have trouble traveling, I have liver cancer, and I'm staring at getting a liver transplant that scares the heck out of me.... so as you can see If only I had that chance to know I had this disease when I was 31... but I didn't, so I guess tough hop for me but if one person doesn't have to go thru this plight it is worth it to me.

I'm sorry to be on a soap box and I really hope you get a tx started soon so you can live the freestyle life without this killer lurking in you !

Best wishes

Duane

Josh Haynie · Senior Member

im a F2 sumthin or other and just turned 31... and Oregon has strict protocol like you mentioned I do smoke .. just had my teeth ripd out.. was told to stop drinking for 6 months it will be as of

decvember 1st... not sure why they ask you to stop when they dont even monitor you ...i could of drank this whole time and just lie when i see my gastro on 12-1... and she would have no clue

because of like i said no monitoring but... I decided sure iLL try for you if you want... straight up if the pre approval board from medicare .. remember that its not your doctor or gastro that denys you

its the Insurance companies... remember that... anyway if they deny me sovaldi plus ribavarin and interferon... or id rather have sovaldi/olysio or the brand new Harvoni... I also know more will be

coming soon abbie V and Merck... but by Febuary thats 2 months after i see her on december 1st... if no progress has been made toward getting me sum medications I will just start drinkng again

.. and im not talking excessive just the same amount as before ..3-4 beers a night and 1 mixed drink.... and then iLL say well fine then i guess Ill see you again in 20 or so years... I know it was not

her that wasted my time it was the insurance company if they deny me I will indeed appeal and challenge./... and may even win.... but ya i agree i have this virus i want it gone and you wana play

politics well %&$* you buddy :) your not sick enough for meds lol buncha BS if i ever heard it... i do maintenance for the state and my dad has stage 4 cancer so im sure I can win my appeal... I

am also aware the gillead has a support path ....to subsidise their meds...I may be elligable for that or iLL just drop my insurance to get it..... remember there is always a way you just got to find i

t and if you cant find a way then do what you want in the mean time :) Like i will do if it comes to that... I will only wait so long.... was gona drink regardless if im cured or not.. not because im

addicted or this or that haven t had a beed since june 1st but i do miss having 1 or 3...and im still gona die later whether i get cured or not.... so i will enjoy my life as i see fit ..but not go overboard....... I dont know ......

I have hep c i know its there i want it gone :) simple as that.... um I also know if anyone punches in my name on google this come up so that could be bad but I rest easy knowing i am being 100 percent honest with what i say at all times...

and yes i think its wrong to no end what they are doing to us..... so you guys are not alone .... remember we all feel the same way you do and are just as mad as you are....

like i said if they dont have things figured out by Feburary ... Its game over.. if im going to wait then ILL do it my way :) my health is good no symptoms really .. tired sumtime but i have no sleeping patteren really.. i can slepp 5 hours or 12... depends how much work or what i want to do.... no pains ..other then my mouth since tuesday TEETH....

as negative as i may sound even i believe I will be helped 1 way or another by my gastron.. state insurance or gillead ... and i said the future is bright.. so i can only get so mad ..sumthing comes out and every1 thinks oh i want that right now.. well good luck with that be patient we have wqaited this long... however yes i agree you can only wait so long before you feel betrayed ....

HOPE you liked my Rambling :) or how i feel about this topic :) i believe in my heart of hearts we will all SVRin 3years or less.... 3 years is not a long time... from now .. ive had the virus for 13 years so 3 years is nothing.... im sure iLL be SVR in a year or less but 3 is the long on the scale... anyway iLL shut up now :) have a good monday

-- Edited by Josh Haynie on Monday 27th of October 2014 09:19:15 AM

Michaele · Guru

Hi 10cats, I have most of your problems and more, plus I am F4. I have so many problems that make interferon contraindicated, and still cant seem to get approved. I had one dr promise after the 1st of 2014, then they decided no and sent me to another specialist, who said no for 6 months. Then in Aug ,he decided ok for S/O. I met with his PA on 9/11/14, she took more blood, and said she would get the paper work going. I was told it could take 4days to 3wks for approval. Well, Im getting sicker and I havent heard a thing from anyone, and its been 7wks. So count your blessings . Im not offended; we were dx same year and my liver is shot, Im still compensated, There are alot of people here who are way sicker and some have relasped. I know the anxiety is a big strain on ones health. There is even a person 80yrs old that was treated successfully. Heck, if I knew I would make it to 80 sans Tx I'd be dancing in the street. God Bless you and good luck, and best wishes. Michaele

shadow10cats · Senior Member

I think that it is very narrow minded of the ins companies to base criteria for treatment on how damaged your liver is. (Taking nothing away from anyone who is this sick so please don't take this the wrong way)

Altho I am lucky that I have maintained a pretty healthy liver since being diagnosed in 2004; I am highly symptomatic. I have all sorts of other issues that have cropped up that may or may not be a result of HepC but probably are. I I am continually being treated for: Excessive Chronic Fatigue, COPD (I don't smoke or am around it), Arthritis, Fibromylagia, Gall Bladder disease, Hormonal imbalance, Stomach problems;ulcers, I must have ultrasounds every 6 mos - these have increased stress & depression so I see a therapist monthly. I see at least 2 of my Drs every month plus a Chiropractor plus numerous prescriptions most of which are not available in generic form.

I am a vegetarian, don't smoke or drink & was a very active outdoor person so you gotta wonder what is at the basis of all these problems? If my Dr is correct & most if not all of these will go away or reduce if I can clear the HepC think of how much that will save the ins company? I have written the CEO of CDPHP about this because he can look at my records for the past 10 years to see how much I've cost them. I just want them to look at the bigger picture; but I'm not stupid either. As a prior business owner & an accountant I do see where the cost evolves from & why the insurance companies don't want to go into debt.

This whole issue is definitely putting a large light on how the health industry works for sure. When it comes to a treatment that actually has the ability to cure & save lives vs. just putting a band aid on the issue - you have to wonder why road blocks are put up getting it to those who need it. I am not that well informed but when HIV drugs first came out didn't something similar happen with costs? People were leaving the country to get drugs cheaper in Mexico and Canada? In the end, didn't the government step in and subsidize the costs to make them accessible? I'm sure someone else can speak better on that but something has to change for sure.

Food for Thought........On a more sinister note: if the thousands of HepC patients all could be cured that is a lot less revenue in Dr visits, labs, & pharmaceuticals revenue. Sick people keep a lot of others working! Could it be that keeping people sick makes better sense where the "bottom line" is concerned then actually curing them? Kind of plays to the comment from the CEO of a local insurance company "we don't care about patients - we just want to give them the perception we care"

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