Starting treatment, and insurance approvals

[fishdoc]

Greetings from the deep south. I am a 48 year old female, and I found out in 93 or 94 about my Hep C. I have had two biopsies, and don't plan on having another. I have only had a couple of elevated enzymes results, by only a few points. I have had this most likely 28 to 30 years. I have decided I am going to try the treatment, I have "waited and watched" and it seems to me a 50/50 shot is finally worth the effort. Plus, even though I have normal enzymes, minimal biopsy results, 600,000 viral load (the only time I had that done), type 1a, I have intermittent bouts of illness that I am fairly certain are related to the virus. One question I have is related to insurance. I have the opportunity in October of switching to another carrier, the current one I would have had to spring for a $2500 deductible, but the blue cross blue shield i am looking at has a "$35 dollar copay for mail in non generic prescriptions", with care mark as their pharmacy. I am troubled by the fact that pegasys/copegasys is on the list of "requires approval". I don't want to switch and then suddenly be told no. Does anyone have any experience with that? Second question, in looking at research, it seems like the best clinical results are the pegasys/copegasys brand. Is this still true?

[go-girl]

Hi, I'm new here as well, I am on my way out the door to get bloodwork then start my first tx Oct 24 if all goes well, I am type 1 stage 3 fibrosis I am in a clinic trying pegintron/redipen as it is supposed to be more user friendly. I haven't read where one is better than the other. Both Roche & Schering Plough will pay for your interferon if money is a problem. Don't know where you live, but in the LA area there are several clinics going on.

If anybody is interested in a "diary chart" I ran into "beincharge.com" and printed several out. If anyone has something better, let me know, thanx wishing all good health

[jmjm530]

Without going into detail, even if you're 100% sure you're going to treat, another biopsy will give you invaluable information to base treatment decisions on. If you're still against getting stuck :) then at least get a Fibrosure test from LabCorp or get a Fibroscan test at a teaching hospital in Florida. The liver biopsy is still the gold standard.

Also, if you've been out of the loop lately, many doctors now believe new and better drugs will be coming out of trial in the next 2-3 years. So depending on the degree of liver damage you have, "watchful waiting" is something to consider.

Regarding insurance -- you really have to make some phone calls and compare apples to apples. The big costs wiil be Pegasys or Peg Intron and Ribavirin. And if you need them, check your coverage for  Procrit and/or Neupogen.  Find out how much of these drugs are covered and do your math. All these drugs require approvals of some sort so that is not unusual.

If anyone tells you Pegasys or Peg Intron is more effective than the other, that is only their OPINION. The leading heptologists/researchers are split. I've heard it both ways from the best.

That said, many people like the convenience of Peg Intron's Redipen and some find it clumsy to use and prefer a standard syringe. Also, the general consensus seems to be that their are less side effects on Pegasys although not sure if any studies on this. I'm on Pegasys because that is what my doctor uses mostly.

-- Jim

[Christie2004]

When my husband was put on PegIntron, it was also on a "must be approved" list, too.  All his doctor had to do was fill out a form stating his diagnosis and estimated length of treatment.  They are just interested in seeing that such an expensive drug isn't being given for a trivial reason, like acne or something bogus or unproven.

HepC IS an approved reason for treatment with Interferons, by anyones and everyones standards. There is no question that it is not indicated or is some novel new treatment--it's been around for many years now.  It is very expensive, so my guess is that is why the extra scrutiny.

You might try asking your doctors office if they have trouble getting insurance approval through your insurance company.  Or call the pharmacy dept of the insurance company and ask them directly what the purpose of the "approval" is.

[1fairygirl]

fishdoc,
I don't have much to add to what the others have said other than an insurance issue.  I've a friend who has blue cross/blue shield and she found out that they will only pay 70% of injectable medications.  Others with the same insurance company have different rules.  You may want to check on injectables specifically, just to be sure.
Good luck and let us know what you find out, all policies are so different.
Smiles, Sue

[LvdByGod]

HI FISHDOC, i'm on blue cross blue shield PPO, and have to use caremark for prescriptions...i have a question for you...with your new insurance will you be ppo or hmo?

i have been on both through bluecross, and hmo's stink when it's time to see specialists or to try and motivate a dr to get "extra" tests done for you etc...(but it can be done on hmo but they won't be as liberal with pcrs and certain tests, and specialists...all need referals etc...and extra begging... (you will get what you need to complete tx but no extra's).  

sooo, i switched to the ppo...and that was fine for me but, you have to be aware that "Caremark" is a drag for "ordering" your tx meds...yes they cover pegasys for me just fine and i've never had them deny me of any tests or meds or specialists that i've needed so long as the dr codes them correctly...they even let me get a wig...one per lifetime...

BUT, you have to go the extra mile to insure that your order is in and comming...

remember this:

you must use their "special pharmacy" to get your hepc meds...you can not use there normal pharmacy and proceedures...so if you send in a script you must make sure it gets to the "special pharmacy" yourself or you won't see it on time, it just gets lost in the shuffle...to do this you must call and talk directly to the pharmasist at the "special" pharmacy...i ask for mine by name,and follow up on the prescription and make sure the special pharmacy has it and is filling it and is sending it when you need it... they actually REQUIRE you to do this i found out or they just won't send it.

now the nice thing is that i have had no problems getting meds in times i've needed it in a day or 2...you must call "special pharmacy" and request this speedy delivery though. i only ask when i'm up against a wall and in quick need of meds usually due to some mistake that was made...

this will help you avoid all the garbage i had to go through to figure this out...no, they didn't come right out and tell me this after many calls to them...the normal operators are clueless to this...i had to find out through many trials and errors...finally we know how to get them...and on time.

also if your dr calls in the script you can almost assume it will not get through to the correct pharmacy...none of my drs understood when i explained...and i explained in detail. i always have to call special pharmacy and make sure they got it and it's being sent out...

the good news is that they send you 3 months worth at a time of meds if your dr writes the script for it like that. and they always come in great condition and properly packaged fresh and cold. the pegasys i get comes in syringes all ready to be poked in...180 mls...the riba comes in pill bottles with it in the cooler. for the pegasys you must snap on the needle part to the syringe...that's all the prep you have...very easy!

p.s.other "normal prescriptions" are quite easy and you just mail in the script and it comes without any follow up calls needed...with my pegasys i must call "special pharmacy" and follow up the script once sent in...sending the script in is MUCH easier than asking the doc to call it in...cause it sometimes requires the dr to call it in a few times until it gets to special pharmacy...

so mail it in and call "special pharmacy" to ensure THEY GOT IT AND ARE SENDING IT when you need it.

if you ever have probs i check in every few days so i could help you if needed...

congradulations on starting tx and if i were you i'd go with pegasys for your first and hopefully last attempt at tx the sides are lesser...if it does'nt work that you could switch to pegintron after week 12. but why start on intron unless you must, cause the sides are worse...the only thing i will say is there may be an advantage for obese patients to do intron cause they can weight base the amount given...but for average weight folks they both are similar in killing the virus but less sides for pegasys...so why not due the easier one?

i pray you have a successful treatment and kill that dragon!!! get ready and let em have it...

sandi

[snook_man]

"Must be approved" is a label in which the insurance companies grant approval based on lab work and biopsy results, the "necessity" of the treatment. If you have minimal fibrosis, they might not want to approve as to save the $30-40k dollar expense that 48 weeks of undergoing treatment MIGHT cost. I switched insurance mid tx, and had no problems whatsoever. I had high deductable with first carrier, and paid for alot of lab work out of pocket. There are tricks to getting things paid for I have found, and ways to work around the deductables..Like most carriers pay 100% of office visit costs after copay.. Well if you have labs drawn during office visit, labs are covered 100%..Let me tell you, a Heptimax alone costs $400.
Scherring is the "preferred" brand with almost EVERY insurance carrier. If you are going to treat with Pegasys, you need to look at copays for "nonpreferred" meds. It will be slighly higher.
I have treated with both meds, and the Pegasys is a lot easier to deal with than the other. The Redipen is big, bulky, and just plain awkward. Studies have shown that with blood serum level testing during a 7 day period, that levels of Peg 2b fluctuate greatly, and it is thought to be the reason many people that treat with it experience greater sx's. Also, by the 7th day, blood serum levels are almost non-existant, raising Dr's to question the necessity of taking TWO injections a week instead of one.
On the other hand, studies out of Europe testing the same blood serum levels in patients undergoing treatment with Pegasys, showed Peg2a not to fluctuate as much, reaching peak levels within 36 hours after injection then tappering down slowly. You will always here people state to drink lots of water on tx,The more water you drink, the less sx's you will experience. Well, the theory behind this started years ago while EVERYONE was treated with the Scherring Peg 2b, which is metabolized by the kidneys. If you drink increased amounts of water, your kidneys are forced into flushing the Peg out at faster rates, thus causing the patient to experience fewer sx's. Nothing conclusive is out there and every Dr will give you an answer based off of which Pharmacutical company is paying the incentives to him. But from a few years experience on these forums, both offer about the same SVR rates, but Sx's with Pegasys seem to be easier on the individuals.
Good luck in whatever path you choose..

[LvdByGod!]

Hello All,
This is Sandi's husband Bob.  

My understanding is that your medical insurance is not necessarily related to prescription drug coverage.  So just because we have Caremark with BCBS PPO doesn't mean anyone else would.  

BSCS PPO is much better than HMO.  You pay more for it, but HMOs only work if you're not sick, which is probably not the case if you're reading this.

Even with Caremark as the drug provider, I had more than one option in terms of coverage.  I don't remember exactly what they were, but I believe one was based on a percentage copay, and the other had just a hard dollar amount depending on the drug.  When you get your coverage, or signup at work for your "benefit elections", you have to read carefully.  I paid extra for the better drug coverage.  So our copay for 3 months for both the pegasys and the ribavirin together is $120.  I don't know if that's $60 each or some combination that adds up to $120.  

The point is, just because you have Caremark doesn't mean you will have to pay "such and such".  You can still have Caremark (or any other prescription coverage), and pay different amounts depending on what specific coverage you have.  In my case, my employer offers a number of options... if I pick more expensive options, I get more deducted from my paycheck to pay for them.  But if you're on this treatment, the extra cost is much less than what the extra copay would be.

Hope that makes sense, if not, let me know.

[LvdByGod]

that was my hubby bob, he's at work but i asked him to chime in...cause he is the one who takes care of all this for me...isn't he a sweet guy? he's very smart but he may need to explain in more detail, let us know... i'm not sure i understood completely all he was saying but "my" brain is missing parts...


*love,
RibaBrain (sandi)

[chellski]

Mr. LvdbyGod, its so nice to meet you!  Your wife is a truly remarkable human being - i'm sure you're much the same.  Just wanted to chime in to say hi!  
btw: you're a good daddy to all those kitty's!
<3 michelle

[LvdByGod!]

Sandi's husband again, Bob.

Chev, thanks for the kind words about my wife.  Never heard that expression before "bee's knees" or even "frogs hair".

fishdoc, I posted that other thing real quick without reading your post.  I think your real question was, since it says "approval needed", does anyone have experience being approved or denied? Well, it sounds like we have basically the same insurance as you, and we did not have a problem.  My impression has that they make you go through a little extra process, such as them directly communicating with the doctor.  Maybe they just want to make sure the prescription is legit?  I don't know, but it was approved.

[avidreader]

And, your insurance carrier may drive which peg you end up on. I have an HMO and Pegasys was the only option I was given. Go figure. I was overweight when I started treatment so all things being equal given a choice I might have gone with the Peg-intron. Unfortunately I wasn't given that choice so I'm pursuing the "Pegasys Diet" (sx) with a vengeance. The only good thing I can say about that is that I am losing weight, so hopefully in the end it will be ok.

I've read on these boards of cases in which insurance carriers actually have folks using Interferon from one company and Ribavarin from the other. I haven't used the redipen but I've used similar devices for anaphylactic shock and I have to say that I think the Pegasys prefilled syringes are easier then any of the pen like devices I've played with. I think just about ever insurance carrier out there makes you go through a special mail order pharmacy for injectibles--mine comes once a month. You might also want to check on your carrier's coverage for Procrit and Neupogen. In my HMO's case both are covered under the medical not the rx portion of my policy. So--if I get the meds at the doctor's office it's covered as a part of the visit, but if he were to give me an RX I would have to pay out of pocket.

None of it makes much sense, but if you have the opportunity to shop around I'd ask about all four of the above mentioned meds because there's a pretty good chance that you may end up on Neupogen or Procrit during treatment. You may end up taking an anti-depressant too--there are doctors who won't treat until the patient starts on an antidepressant. In my case my co-payment for each of these drugs is $30--it adds up--I'm on maintenance meds for other conditions as well, but everytime I start to grumble I look at the 'list price' of some of these drugs and am grateful to be one of the lucky ones who has insurance at all. I work with homeless people and they are regularly denied treatment because they don't have insurance and for one reason or another in the wonderful world of 'welfare reform' can't qualify for Medicaid--usually because they are "making too much money" in their dead-end, entry level, no benefits, no security job.

[cquest]

The generic question- there is no generic form of these drugs yet. The insurance question- lots of people have BC, there are hundreds and hundreds of plans, depends on your employer and what contract they negotiated with the carrier...copay,drug carrier riders,PPO vs HMO vs POS all differ depending on your contract...you gotta read it and if you don't have one yet, go on their website. Just because one BC does this or that does not mean another BC will do the same unless you happen to work for the same company and have the exact same insurance carrier...believe me...this is what I do...I fight with them daily and have for the last 17 years...they are a royal PAIN but I am hip to their tricks now!  
Cin

[NYgirl]

I had to have my prescriptions approved as well - they just called and asked and it was approved.

Maybe it's a standard thing and depends on your biopsy and such.

I would just have the nurse practitioner call and ask before I really worried about it.  It didn't take mine but ten minutes and she called me back and said ok.

I hope that you are worried for no reason and it goes straight through!

[NYgirl]

PS I dont have Blue Cross I have Aetna and use Scripts Express for my prescriptions.  They approved to have me just use regular old CVS and they overnighted it straight to the pharmacy for me.  I did not have to use their pharmacy at all.

[fishdoc]

Wow, thanks for the responses.  I suspect the cost factor is always the big braindrag BEFORE the treatment starts, and just one of many after.  The insurance is federal, so its the same nationwide, which would help me now as I am covered by blbs under my husband who lives in NM, I am in georgia, so everything is out of network...another good reason for jumping in when open season comes around.  It is a PPO, which based on discussion here appears to be a good thing..   The biopsy.  Drat. the first one was a piece of cake, done in 1996.  The second one the gurney was broken and wouldn't stay up, so the gurney was literally propped up on one corner on a coffee table, no "antianxiety" type meds, in fact no meds at all, and it was very similar to a harpoon gun.  Did it hurt, no.  Was it horribly traumatic, yes.  I will print out the responses for my doc, and talk about non-biopsy options.  As for waiting longer, I am willing to go for a 40% chance, and as I am not getting any younger, I want the chance to live without the virus dragging me down, which it frequently does. As of the last biopsy, probably done in 2001, not much damage, still a stage 1, but when I exert-like a long week end camping- I am down for three or four days when I get back with flu like symptoms.  Before they found out about Hep C, the diagnosis was chronic fatigue, or epstein barr- both caused by chronic viruses.  So I have always assumed it was the virus.  Interesting side note: I found out about the virus when I was teaching an anatomy class, and gave extra credit for blood donations.  I gave blood, and found mine, and one of the students whose husband was an emt found out he had it because he also gave blood when she went.  Thanks for so much info, must assimilate now......cheers

[NYgirl]

Isn't it just amazing HOW MANY people are being diagnosed with it now? Even my mother said last night "it's a damn epidemic". Well it really seems to be. I had NO IDEA so many people had it - and there are so many who don't even KNOW yet.

You are smart to want to try treatment while your liver is still in good shape. I wish I had known sooner but I just didn't. Still I"m a 2 on both and that is lucky because I had no symptoms at all and would never have had reason to be tested for such a thing - in fact the doctor at first refused to test me.

Best of luck in all of this.

[SJL]

I have been through two rounds of treatment. The first being Peg-Intron/Riba and the second Infergen/Riba. I have relapsed on both. I am now on Pegasys maintainence.

My Hepatologist Specialist has done a beginning biopsy to find out the necessary diagnosis. He feels that having additional biopsies is not necessary as the chances of them going into the same location is nil.

Also, be wary of changing insurance carriers. If you are on a corporate policy you might have to appeal -
the Doctors they approve. I did and won so I could see my Specialist. I have also heard that some carriers state that the Hep C was an existing condition.

I found Peg-Intron and Infergen sides effects almost identical, but a Hep C Specialist (who understands as much as possible about the disease) will give you the needed necessary medications to help you.

I would go through the treatment if possible, but only after you have researched the Ins. Co.

Walgreen's Specialty Mail Order has been great for me. Regular prescriptions, if written for 3 mths., will only cost you for 2 mths. They also mail the injectibles.

Good Luck in making the right decision-only you know what's right for you!

SJL

[cuteus]

you just reminded me of some odd symptoms I was having prior to tx. I started a Summer run Series in June'03(tx started on July 1'03) and I was "wiped" after  each run. I would come home and start shivering under the comforter and be extremely fatigued all night. Definetely hep c related, since I did the run this yr and those symptoms were not there this time, and HCV was the missing link.
I keep telling people that the emphasis should not be liver damage, but the flawed QOL hcv is bringing to many of us.
HCV is not just a liver disease.
GL on your battle.

[desert woman]

>I am troubled by the fact that pegasys/copegasys is on the >list of "requires approval". I don't want to switch and then >suddenly be told no.

We have Blue Cross/Blue Shield insurance.  My husband started treatment September 2004, and he took PegIntron and ribavarin.  His approval was granted for 1 year.  His doctor took him off treatment in May because his viral load started to climb back up.  The doctor refused to up my husband's dose of ribavarin from 800 mg.  We found another doctor who was willing to try a higher dose of ribavarin and switch him to Pegasys.  This last week he received a letter of approval from Blue Cross for treatment for only 3 months, starting a month before we received the approval letter!  So my husband has decided not to do treatment at this time or ask Blue Cross to reconsider extending the approval time.  He's kind of burned out right now over the whole situation.



Desert Woman

[bobbyullc]

RE BC/BS.

THE BS IS CORRECT. I WENT TO FILL MY FIRST PERSCRIPTION FOR PEGITERFERON AND WAS TOLD THEY DID NOT COVER "INJECTABLES".ONE LINE ON PAGE 38 OF A 77 PAGE POLICY? $419 A WEEK? THAT IS INCREADIBLE AS THEY WILL COVER A LIVER TRANSPLANT. GOOD LUCK AS PAYMENT IS THE LAST THING YOU SHOULD HAVE TO WORRY ABOUT ON TREATMENT.
BOBBY

[fishdoc]

OK, once again thanks so much for the help.  I have done some research, neupogen, procrit, and all interferons are on the formulary list, with prior approval.  So, if they are reasonable I should be good to go.  I am slightly worried because it looks like its been 9 years since my last biopsy, diagnosis then was 1+ mild chronic triaditis.  No PCR since 95, so I need to get my ducks in a row....
cheers,

[Dweav]

I had the insurance thing to go though also. If you numbers show you need to have treatment then the doctor needs to send them a letter stating the need for the treatment and list you result of the test you have had showing that you need treatment. Your most likely have to get your in PEG meds from Care mart or Cura Scipt Some place like that. Unless to have really good insurance.  My doctor wanted me on a 48 week treatment but the insurance is saying no more after 24. But I have had to file an appeal with the insurance and waiting to get the out come. I doctor said If they still say no that she should be able to get them from the maker but I may run into problems with the other meds need to handle the sides. I gong in next week to the doctor and hope we can work a plan so I can be clear and free of the Hep C what ever happen.  One thing about Insurance is they play tuff up front but if you keep hitting them with facts and numbers they give in most of the time.  Face it they are not doctors and most of the time they are looking at the bottom line when it come to money. But if you have the backing of doctors and they will give in most of the time. A squeaking wheel get more attention.  And face it with all the test and doctor you’ll be seeing and blood work the $2500 sound like a lot. I have a deductible of $2750 once that is reach they pay 100% I have hit  that by May each year since this all started. My prescriptions run me about $180 a month  and the PEG is covered under medical treatment so I had to pay a one time co-pay  for the 24 week treatment. I have hit  that by May each year since this all started. Myself and my wife have had to spend two to three hour on the phone daily for a week  with doctor and insurance to get the problems worked out but they seem to work something out each time. Just keep at them. Before I would change insurance I would make sure the new one will cover your treatments and if it ever got to the point of transplant they will cover that. And get it in writing on there letter head.

Don