assistance with paying for Interferon

[kunkielove]

I was just wondering if there are assistance programs from the pharmaceutical companies that produce the interferon.  I know I have still a little way to go as I have one more appt at the beginning of October which will  be my third monthly consecutive appt and to them,  prove I'm a "reliable patient", then the referral which could take months for a new patient.  I imagine my 7 plus million viral load has increased since I requested the bloodwork, if it were up to them, I never would have received it, they told me on my first visit "if it gets bad, we'll treat you with an antiobiotic". One's viral load does increase, true?  As the virus replicates itself.  I can kick myself in the butt for going to them in the first place, had I had a regular Internist, this entire deal could be over by now.   This is really frightening me, the viral load increasing, my anxiety over this waiting game, etc.  Can someone/anyone tell me if this treatment is expensive?  My prescriptions today cost me over 65.00 (just 2 medications) and i have medicare Part D (prescription insurance) which I pay for, 30.00 a month on top of the almost 100.00 for regular medicare....i can't imagine that it would be reasonably priced....  Are there different kinds of interferon that one with hep c would be treated with?   I've read (not here on this forum) about Pegasus (sp???) names of Interferon that contained numbers and letters after the name of the drug.   And many months ago, prior to this 3 consecutive monthly appointment deal to prove I'm a reliable pt b/4 i would be referred to a GI (withholding medical treatment....hmmm, then they vaccinated me against hep a and hep b without even checking to see if i had either, not to mention, i'm the one who had to ask for bloodwork for my viral load/subtype (when I asked them for bloodwork for "liver functions, what do I know?  I'm not a doctor, they sent me for a CBC, my ALT and SGOT were elevated, they never commented on either)   Thank God I was ablel to save each month to buy this computer....Most especially, before finding this forum, I know this has nothing to do w/the topic, I'm just so frustrated and feel lousy every day, loss of appetite, stomach distress, constantly tired, you all know,I'm sure....but i'm thinking of suing this residency program I've been going to, it was an actual M.D. there who is "withholding medical care"..yes, you do see a resident at first but a true M.D. always comes in to, I guess (I can't think of the words, this happens too often), ..this feels like a nightmare.  Not just that they didn't follow acceptable medical practice, but to withhold literally lifesaving tmt,  the fact that my anxiety just increases waiting for these months to pass, the impending biopsy, all of the side effects.  I'm sorry, i guess I just needed to vent... isn't there a hepatitis social community where maybe my venting would be more acceptable?    But, yes if someone could tell me if the tmt is expensive, and send me that link to the prescription assistance computer...hopefully that very kind person is still on the forum...it was sooo many months ago and I should have had the presence of mind to copy it down.   I would truly appreciate that....thanks so much...and I apologize for venting in a forum where maybe I shouldn't have.  Thanks to those that "listened".  Cindy

[kunkielove]

You are all so kind.  I never thought of that Bill.  I'll have to call AARP, not sure if they're in on Saturday and ask for a written quote.  The open enrollment period for part d only lasts from nov 15 till years end so I've got to do something by then.
Trying to buy (public assistance, welfare) in the Medical Assistance for Workers with Disabilities program is not easy.  It would cost me 70 a month, but i was told by one source that my copays would only be 6.00 for generic meds.  I was also told that I would still have to have a Medicare Part D (rx) plan...makes no sense.  And everywhere I call gives conflicting info.  The woman from the welfare office who handles this was of course on vacation last week.  I could quit my job,, lose that little self esteem, but I do likek what i do and the money helps.  But there wouldnl't be much left over after paying all of these premiums

funny, you know the new drug, chantix to stop smoking (gave me horrible nightmeres, Ihad to stopo it).....I got 3 bottles of it, delivered to my Doctor.  And all I had to check on the application was that I was in financial hardship.  And I imagine Chantix, being new and not coming in generic form is expensive.  I'll try what you said.  I've got to do something quick or would have to put off treatment for a year.  oh boy, was it worth it, what i did to contracct this virus?  Hell no!!  Thank  you once again, Bill for your wisdom, for always "being there".  You are truly a blessing.  cindy

[Bill1954]

Cindy, if you have a copy of the quote from AARP for $8,000/month, call the patient assistance number for the manufacturer, and see what they say; have you tried that yet? Here are the patient assistance numbers again:

Pegassist (Roche Pegasys system): 1-877-734-2797

Commitment to Care (Schering- Plough/Merck PEG-Intron system): 1-800-521-7157

And yes, it can involve lots of leg work; this treatment is expensive, so the forces to be are often reluctant to pay for it if there’s a way out.

Gather up last year’s federal tax info, along with the quote from AARP and call whichever number applies to you above, and see what they have to say for themselves.

Let us know how it goes,

Bill

[kunkielove]

Hi, i apologize, i didn't respond to your question.  It is all very frustrating what I'm goingn thru right now, on ssd, working from home making 160 a month, (wow, but it does help) and so I dont qualify for any help paying for prescriptions.  if you read the above comment to Bill you'll see the hard time i'm having and i feel so alone.....so disgusted.

No I don't have anything that would require antibiotics.  I, after learning i had hcv, went to Scranton Temple Residency Program as I was told you can get a quick appt w/them.  Just wanted to know about the virus, if my liver was ok, etc.  They never sent me for viral load subtype testing until I got my computer and found out I needed it.  I had to ASK them to give me a bloodwork slip for that, them knowing I am positive for hepatitis c.  They just sent me for routine bloodwork which showed only that my SGOT, ALT were elevated.  Anyway, on that first visit, they told me, with respect to the hepatitis c virus, "if it gets bad, we can treat you with an antibiotic".  So I was relieved, asked them to send me for bloodwork ffor my liver enzymes.  I didn't know about viral load, and they, again didn't test me for any of that until I ASKED.  It would be nice if there was an antibiotic.  Soon, i'll be in the hands of a GI Dr. just have to go for a little more bloodwork on Tuesday, they did call me and told me they accepted me as a candidtate for treatment.  Now I'm wondering, worrying about how I'm gonna pay for it.
I don't want to quit my job, it gives me a little bit of self esteem.  I always defined myself by my occupation.  

Thanks for the kind comments James, and for telling me i can vent here.  I have no one else who understands what I'm going thru.  And you are all so helpful, all of you, so well informed, and I so appreciate the help that all of you have given me.  i hope youo're doing well....Bill told me that the tmt would cost approx 10k for a year.  Now AARP is telling me that a month's worth of Pegasys (didn't know what to ask them about, don't know what I'm goingn to be medicated with) will cost 8,0000.00.  I don't have a money tree :(((    I could have contracted this virus in two ways, during the year 2005...both I regret terribly.  Just two instances and well, how I wish I could turn back time.  Thanks for responding.  God bless all of you here and thank you all, everyone who's reading this for helping me.  I appreciate it from the bottom of my heart.

[kunkielove]

So much red tape, Bill.  I no longer qualify for federal assistance (didn't even know I was getting it) to pay (help pay) for my medicare rx premium, co-pays, etc.  Because I work, at home making approx. 160.00/month take home.  Without this help, AARP quoted me 8000.00 for the first month's Pegasys treatment (I have no clue what he's gonna put me on but asked if they covered this drug).  After that, paying that amount I'd be into catastrophic coverage and it would only cost 6.00 something a month.  The problem is coming up w/8000.00.  I have no idea what the cost would be with federael help.

I'm trying to BUY medical assistance for workers with disabilities but they want Dr's documentation of my disability (the fact that I'm on SSD isn't enough) and they will review me to see if I'm  determined disabed by the State as it's state welfare insurance...the kind people with low incomes on SSI get for FREE.   Would cost me 70 a monthh but would be well worth it.  The problem is, I have no idea what my current diagnosis is, i suffer from depression/anxiety, mania but my Dr may have written in his notes that my symptoms are controlled with medication.  Then what would happen to my SSD benefits?  I could be opening a can of worms that could really not be in my better interests.  This is all so stressful, and everyone I talk to, every internet site I go on about this MAWD insurance gives me conflicting information.  

[Bill1954]

Hi Cindy,

Don’t stress or worry; once you decide with the doctor which med to use, be it Pegintron or Pegasys, Medicare should cover it. If not, a letter of refusal to pay from the AARP company should entitle you to immediate acceptance by the manufacturer’s patient assistance program listed above.

This all has a tendency to work out, one way or another. And yeah, there is a whole slew of blood work involved with this disease, Cindy :o).

Take care of yourself, and try to relax and enjoy life—

--Bill

[kunkielove]

Wow...I did get a call (had a slew of bloodwork to see if i'm a candidate for tmt, I am) from the GI Liver speialst.  So until i see him, i wouldn't even know what drug he's gonna put me on to ask if my medicare part d rx coverage would pay for it, or how much they would pay.  This is alllike a nightmere, truly.   As i'm sure it was/still is for many of you and I don't have much support. cerrtainly no financial support, Iwork and am on SSD.  As a woman, I'm thinking to much about my hair (sorry for all the misspellings, my anxiety is showing!).

So, Bill is there any sense to make phone calls to AARP b/4 I see the dr?  The open enrollment period ends I believe Dec 31 so if they don't cover the type interferon I need, I'm in trouble, would have to wait a whole other year to get another company's coverage.  Thanks for the numbers, the phone numbers.  I'd like to take a reallly long nap.  Oddly, I just got the prettiest haircut I ever had on sunday.  I kinda feel sick to my belly.  thanks again guys.  oh, yeah the liver specialist /gi dr wants just a bit mor bloodwork b/4 he can see me but yes, he is going to treat me.  a day at a time, a minute at a time, wish Ihad more peopole in my life who gave a damn.  I'm sure it would be a great help.  (not feelingn sorry for myself, just wishing :)

[spectda]

Hi Cindy-
The viral load does not keep going up as time as goes on. It goes up and down all the time in most people and has nothing to do with the amount of damage you have to your liver. it will only be important to determining how you respond to treatment.

The hep a and b vaccines are to prevent you from getting hep a and b which you don't want to have along with hep c. Since they are for prevention you would only be given them if you don't have hep a or b, once you have hep a or b the vaccine will do nothing to cure you.

I am sorry about all the trouble you have been through. it seems like there would be some choice to see other doctors within the system.

I hope you get the help you need soon,
take care,
Dave

[hcvJames]

Sounds like the way my treatment started. Five months of arguments, anxiety, and a bunch of unnecessary stress.
The antibiotics can't be tx for the HepC. Do you have something else going on? For instance, I had swelling and fever in my leg, for which they gave me antibiotics, but also at that time the HepC was found.

Roche was bought by Genentech. This number is still valid. 1-866-247-5084. Call during reg. business hours. There is a menu system. I think there is one for assistance with paying for med's. If not  just take the one that mentions Pegasys and Copegus. Tell them you want Patient Assistance. They will put you in contact with the right dept. Write it down. ;)

Genentech's meds... Pegasys = PegInterferon alpha 2a, Copegus = Ribavirin.

There is a LOT of stress associated with the situation we find ourselves in. I did more than my share of venting in the first months after joining. It helped me keep things straight, this forum provided support, and invaluable information to get me through. The last 17 weeks have been smooth sailing. Residents write the scripts, I take the med's, they leave me alone. haha.

Vent away, we're here for it.
All the very best.

[Bill1954]

Hi Cindy,

There are two brands of interferon that might be prescribed to you; you mentioned ‘Pegasys’ already, which is one of them, the other being ‘Pegintron’. Both are similar in terms of long term response.

Yes, this therapy is relatively expensive. If you were to pay for it out of pocket, the cost would start at around $USD 60,000 per year; it could be as high as $200,000 I suppose, if you needed a host of support (rescue) drugs like Neupogen and Procrit, etc. The Interferon and ribavirin alone would cost roughly $20-25,000 per year.

Patient assistance is available through the manufacturers; although I used them with Medicare part D in the past, I’ve been told things are changing with them, so you’ll want to call and inquire when your ready. Here are some contact numbers for you:

Pegassist (Roche Pegasys system): 1-877-734-2797

Commitment to Care (Schering- Plough PEG-Intron system): 1-800-521-7157

Try not to worry too much about viral load at this point; it can both increase AND decrease spontaneously, and really doesn’t mean much until you begin treatment. Viral load doesn’t necessarily correlate with disease progression or severity.

Good luck to you, I hope things work out soon and you find your peace,

Bill