Patient Rights

Hello all,
   We have called our insurance company to try to get the interferon started. We were told by the insurance company that the injections had to come thru a mail order pharmacy. When we called the mail order pharmacy, they told us the injections were not covered that we had to go thru our place of employment to have the injections filled. The problem with this.....my husband and I are both health care workers & employees of this hospital and know just about everybody in the pharmacy & prefer that they not know our business. Doesn't the pt have certain rights to choose & have their medical condition kept private? The Ribavirin is no problem to get covered at a retail pharmacy, but all the retail pharmacies that we call & they run the Insurance card thru tell us that we need to go thru our employers pharmacy to get covered. Just at whitts end!!! Thanks for any comments that you all might have to help us with this.

[NYgirl]

I can understand what you are saying. When I first was starting I had my prescription filled at a big local chain pharmacy instead of the regular pharmacy I've been using all of my life - it's a small town and I just didn't want them to know!

Now of course I wish I had just filled it downtown and saved myself the aggravation but I am not in the health care field...I can certainly understand you wanting to keep your privacy.

Isn't a pharmacy like a doctor in the fact that really they can't talk about your medications? As much as I wouldn't want to fill it there...if it was the ONLY way I could go on treatment I would do it.

We get a lot of prejudice with this disease but the more we travel through it...the more we find that we want to fight against the bizarre limitations that they put on us. Well at least for me.

Best of luck I wish I had advice but I wanted you to know...it's understood.

[TheFalcon]

Yes, there is just no way of getting around the whispering. They all know if they say anything that they are violating the privacy practice acts. We just don't know what to do! We were only given one choice for a mail order company. Does anyone have any other names & numbers that we can call? I feel for my husband because he said last night that if it comes down to us using our place of employment pharmacy, he won't go on the medications. I know he is only frustrated right now. Thanks!

[cougareyes]

I really have to believe these insurance companies continue to think up ways to discourage people from using expensive treatments. The first of the year my RX coverage changed and they have presented a real PITA. Especially when you are sick, you're already down; and sometimes just don't have alot left to fight the insurance co. I have to believe they are banking on this; it just sucks.    Peace

[FlGuy]

I had a sort of similar situation.  The Ins Co. (Aetna) required me to get the Ifn from their own 'specialty pharmacy' and that the cost of the IFN (not riba) was applied against my medical insuance, not as part of the prescription benefits.  After a few calls from Doc and me it got straightened out and the process became the model of efficiency for refills.  Dedicate a few hours to working the phone with the Ins folks and pull in your doc as needed. Will likely be a one-time speed bump til you get the details worked out.  This is one of the pains that many go through to add a little more stress and worry exactly when it's not needed.  A suggestion: be cordial with the folks you talk to and get direct phone numbers and names.  You get more interferon with honey than you do with apple cider vinegar.

[vegas777]

Falcon I hope you don't mind me jumping on this thread, didn't want to open a new one, but I have a question for the ladies

Ladies my dear sweet sistas, anyone out there on HRT?  I just got a prescription from my family doc for hormones, one is a patch and the other a pill, I asked him if these were liver friendly, he said it was okay to take them but I don't trust him...He's not the brightest bulb on the lamp...so, I was wondering if I should take them or not, figured I would ask in here and see if anyone else with fibrosis is on hormone replacement therapy...Any input would be much appreciated

*hot flashing dip*

P.S. I sure am glad goof isn't around, he would have a field day with this one  hehehe

[dancegirl54]

I am going to echo your question about the HRT
When I was taking the supplements they worked really well, however the black cohosh made my enzymes high so stopped.  I am waiting for hep docs response to HRT question - I have wanted to be "clean" for the 2 months he said to wait and repeat blood work. I have heard that the patch is preferabl but the gyn said the pill is better if you have liver issues. So now am thoroughly confused. I know a few women with HCV that are on the patch but these women are not the type to question anything. So I am eagerly awaiting feedback on this.

[vegas777]

this is what he prescribed for me, novo-medrone in pill form and estraderm in patch...let me know if you hear anything and I'll do the same, what were you on that raised your enzymes?

*dip*

[dancegirl54]

I was on a vitamin pack from Dr. Weil's site - it contained black cohosh which was the offender. Weird because I stated I had HCV - I had no idea it had an adverse effect - hep doc said to stop it immediately. I just emailed him about the HRT , I'm so glad you reminded me, I will let you know.

[vegas777]

thanks,  much appreciated...I knew about the black cohost, I went to a Naturpathic Doc in August, went on a vitamin, chinese herb, doet and exercise regimen, 3 months later had a blood draw and my enzymes sky rocketed, they doubled, almost tripled so I stopped it immediately, last week I have a zillion blood draws and I am anxious to see if my levels went down since I stopped it...

[cajunlady]

Good Morning All,

I could not take the harmone therapy at all.  Too much breast cancer in family; mom and sister both had mysectomies.  I know the patch you named is a commom one they dispense.  Not sure of the other.  I tried Black Cohash(spelling?) with my obgyn's permission, knowing I was Hep C., and it bothered my liver; got off.  I had a 5 year roller coaster ride; honey I can not even begin to tell you that nightmare.  I would ask my hep doc; I don't think others really know all that can not be put on the liver w/HepC.

I have another question.  Since yesterday afternoon I have had this extreme pain in my right side (far right) right at the rib cage. To sit is extreme pain; to stand is a little milder; if I lay down it goes away, but the minute I stand up it's back.  I don't know if I ate something that did not agree with me or if this is something more serious.  Want to get some feed back before I call doc this morning.

cajun IN PAIN

[vegas777]

I have pain in that area constantly, I attribute it to liver pain, even though professionals say the liver has no pain receptors, only other thing it could be is gallbladder, in my case I know it's not gallbladder for I had a ultrasound and it was fine, call your doc, don't wait, it could be nothing but it could need attention as well...

at any rate I hope you feel better soon.

*dippers*

[friole]

First of all, Falcon, there must be some way around this issue. It does not seem logical that you should have to disclose this to your place of employment.  Can you call the insurance company and see if you can be assigned a case manager.


Now I must share this story about my insurance company - BC/BS of Texas.  When I got home from work last night there was a message on the machine to call a registered nurse case manager at the insurance company.  I am taking Pegasys, CoPegasys, Neupogen, and Procrit.  The insurance company has been very very good about paying all the labs and my co-pays are reasonable.  Nonetheless, I was freaking out!  I had just called the pharmacy to refilled a Neupogen rx and my worst fears were that they were going to deny it or refuse to pay for the blood boosters anymore.

This morning I spoke to the case manager.  He was wonderful.  He was just calling to see how I was doing because he knew I was on a difficult treatment.  He said he had volunteered to be my case manager because he had gone through the treatment and has been clear for two years.  I'm telling you, folks, I was overwhelmed.  Not only was he kind and supportive but he answered a lot of questions I had -- Like why was I paying for a 3 month co pay amount on the Neupo, but there were only 10 vials and it will not last 3 months -- answer was the original rx was written to be taken every week or two weeks.  All I had to do is call the doctor and they will call in a new rx for every week.  Asked about the dose of Pegasys I left in my car in 85+ degree day -- he said, no problem, call him and he will get the pharmacy to replace that dose.  Also asked him if, since I was not clear at 12 weeks if I could extend treatment for 36 weeks after clearing -- he said no problem as long as the doctor writes the prescriptions.  Wow - my doc just said, off the cuff, the insurance co would not pay past 48 weeks.

I'll tell you something else.  Other than this forum, I have not spoken with anyone who has Hep C and was on treatment.  It made me realize how lonely this all is - whether you tell people or not that you have Hep C - it is still a lonely road.  I was almost in tears.  When he called me back later, I told him how grateful I was for his call.  He is not only going to be a valuable asset, but he is a new friend.

[vegas777]

I was at the pharmacy this morning getting these silly precriptions for hormones filled, and I asked the pharamacist if these meds were liver freindly, we got to talking and he asked what kind of liver problems I have, I told him I have active hepatitis c, you know what he said - you ready for this - he said " what is that"!!!!  no kidding, a pharmacist didn't have a clue what hep c is....

[MrsOckert]

You asked about other mail order pharmacies.  I don't know if this will help you or not but the mail order pharmacy I use is CuraScript out of Florida.  The meds are mailed to me at work since they have to be signed for.  I'll have to look up the phone # for you.

[GoofyDad]

<i>I sure am glad goof isn't around, he would have a field day with this </i>

Restraint is my middle name......

[MrsOckert]

CuraScript
6272 Lee Vista Blvd
Orlando,  FL  
888-773-7376

I hope it helps.

[vegas777]

welcome back goof!

[avidreader]

Cajun--I can't remember how old you are, but I had very early onset osteoporosis and when I first started getting spinal compression fractures they felt just like the pain you are describing. I was convinced I had bruised or cracked the side of my rib cage. Referred pain is a weird thing. Anyway, the doc sent me off for a chest x-ray and that is when we discovered I had multiple new and old spinal compression fractures. The good news is that for the last 6 years I've been on Miacalcin, Fosomax, Calcium supplementation, weight bearing upper body exercise and I have actually reversed some of the damage and haven't had a new fracture in about 3 years. So--not fun, but not the end of the world either.

All--It is so nice to hear good stories about people working for insurance companies. I use CuriaScript too, and for the most part they have been great. Once the snow started I switched from home delivery to work delivery because I have a 1,000' gravel driveway that climbs and winds its' way up a hill and no one will drive up it in the winter. Last week they screwed up and shipped it to my house. I got home to find it in a snow drift in the woods at the bottom of my hill in the middle of nowhere. All was fine though, and they were very apologetic. I thought of trying to con an extra month of Peg out of them because I also hadn't authorized the shipment yet--they jumped the gun, but my good conscience got the better of me. (darn) By the way for those who might need it shipped to work--there is nothing on the packaging that identifies what it contains other then it is persishable and needs to stay cold--you can always make your co-workers jealous and tell them it's gourmet filet mignons.

[MrsOckert]

One of your comments got me to thinking...

Do you have a different ins co for prescriptions and major medical?  I do.  The script for the ribavirin goes to prescriptions and the interferon goes to my major medical coverage.  When they said you weren't covered maybe they meant it was because it was an injectable and had to go thru a specialty pharmacy?  It was a nightmare for me til we got the thing worked out.  They sure don't make it easy.

The pharmacy has to bill two separate ins co's for my meds.

[azgrl]

Hey veg I hope life finds you well up there.  You know it's funny you mentioned being on tx and being in a wedding or going....my brother is getting married right after I start tx and I am so nervous that I'm gonna look like some sicko.....I'm not a makeup kind of girl but I think I might be taking some lessons for this occassion.  Funny how we're winding up in the same boat.....aiyyyyy  yai yai!!!

Deb in Az

[vegas777]

have fun with it, get a lolitta wig and a long cigarette holder with bubble gum ciggy's  lol  I plan on wearing a turban, with a big red ruby in the middle and a feathered plume, like a peacock feather  hahahaha  I'm a real sicko so it will fit the bill!

[TheFalcon]

Yes, it has to be a "Speciality Pharmacy" which happens to be the pharmacy at the hospital that we both work at. Its probably a contract between the hospital & the Ins co to dispense the drug cheaper?? Maybe I'm wrong. Would this Fla pharmacy work? Sooooooo confusing. We have called & called our ins co pharmacy # & they keep leading us back to the hospital that we work at for dispensing. If I called the Ins Rep at the hospital, I would have to go into more detail with them & they know both of us too. The pharmacy # that we called on our insurance card went thru Care Mark Pharmacy in which they said it was denied & told us we could try retail or gave us the hospital contact (pharmacy) #. Is there any other way around all this?  thanks for all the nice comments. I just don't want him to give up.

[wonderingwhen]

I too use Cura Script and they give an option if you want delivery signed for or not, at least in my case. I chose not to have signed. Fedex leaves at the door if not home. I am home 99% of the time. Just thought you should know you have that option just by informing them when you order.

[MrsOckert]

Wondering - thanks for the info.  Since I'm at work when they deliver and I sign for everything it's worked well for me.  I didn't want the meds sitting on my front porch while I was at work.  Good to know I can change if needed.

Falcon - you said you called the ins co pharmacy #?  I, too, have a phone # for the ins co pharmacy and a different phone # for the ins co direct.  Look on your EOB you get from the ins co for a doctor's apt.  On the form there should be a phone number and name for the person that processed the claim.  Call them direct and see if you can use a different pharmacy.

It might be that your correct and they under contract with the hospital pharmacy, but there's got to be a way around it.  I wish I could be more help.  Please don't let him give up.

[TheFalcon]

WoW!!
  Thank you, Thank you, Thank you..... I called the # on one of our EOB's and got this darling girl Amy. I told her our problem with the pharmacy & had told her about this forum & that cura script had been mentioned. Amy said that she knew alot of people that used cura script & that she loves to work with them. She just called me back & said that she is faxing over a referral to them & that they will contact us to get set up! She surely went above & beyond & I am going to contact her supervisor & tell her so. She also is setting us up with case management. As I have said before...you all are my ROCK. I read this forum everyday. God Bless you all. :)

[friole]

Wow - a happy ending.  That is one of the nicest things I have read lately.  It truly is nice when the insurance companies work to help us.  I am so glad, Mrs Ockert, you were able to solve the problem for Falcon.

az girl - I do hope your BC plan in Arizona is as nice as mine.  Too back you're not in Texas ha ha - I would share my wonderful case worker with you.

vegas - that does not surprise me a bit that the pharmacist did not know what Hep C was.  I don't think my pharmacy has filled any rx's for this disease lately either.  I posted on another thread that I ordered free pamphlets from the CDC on Hep C.  My pharmacist let me put them on a medical information rack they have in the pharmacy.  I do hope some people read them.

[vegas777]

that's a good idea...I am meeting with the new hep c advocate in my area next week, we are talking about starting a support group, but in the meantime she is doing the same thing, putting pamphlets everywhere

[PatchesNJ]

Hi Friole

What a heart warming story.  I always seem to feel as though I

[amirtracy]

Since we're talking about kindness and resolutions, I thought I'd mention Shcering-ploughs Commitment to Care program for people without health insurance. I overnighted my application so they'd have it yesterday and was called today to tell me I'm approved and my dr. has been notified and has sent prescriptions to them. i should start any day. it's a miracle. there's no way i could treat without this program. they were so awesome and kind on the phone. it was nice. i'm relieved. :) hope everyone is well. i'm sure i'll be in touch for advice and support. i have also found this site invaluable. thanks. tracy

[friole]

Patches - welcome to the forum -- seems like a read a post of yours recently but -lets blame the brain fog - can't remember if you are treating or getting ready to.  I really was grateful for that call from the insurance case manager. I am not all that happy with my GI - but there is nothing local to change to, so it was at least nice to be able to tell my doc that the insurance co will go along with extended treatment if I so choose.

ameritracy - wonderful news.  I am amazed that they processed all of that so fast.  It will really help shorten the awful anxiety period before the first shot. Hooray for Schering Plough's Committement to Care Program

Kathy

[azgrl]

Cajun...I would ask about your gallbladder.  If they suspect the gallbladder then they need to do a hida scan with cck ejection fraction.  That was how I found out about mine.  My ultrasound and ctscans came back normal but when they did the hida scan that showed what the problem was.  I hope it gets better and is just something you ate....

Friole...I am so glad you told that story.  I have BCBS of Arizona.  I hope my experience is the same.  I have been so worried about the insurance giving me trouble.  Although they gave me authorization to get my surgery out of state without any problems.  Hopefully that's a good sign.

Deb in AZ

[strator]

Wow is right- what a great outcome. Way to go. So many nice stories about real people out there helping out. We usually just think of this PIA entity with insurance and red tape. Mrs. O great thinkin, you really give some great help here.

When I tried to get into detox a few years ago the hospital wouldn't take me because I'd walked out against medical advice a few months earlier. The admitting nurse despite being told wher she worked wouldn't take me, and someone from the management co in FLA that the Ct state insurance I had contracted to, spent hours on the phone trying to get me in someplace. It took til the next afternoon and my doc to get involved(it was a very scary detox). When I got out the woman from the mgmnt co called me at home and asked how I was doing, helped me get an outpatient program. Called me over the next few weeks and told me when the program was over, if I needed therapy or anything she'd set it up. If I just needed someone to talk to call her extension. When I finished the program I had to call and thank her. Turned out she'd been in recovery for years. I haven't been back to detox either.  Sometimes God just puts his stamp on stuff so we know he was there.
Don
Don

[PatchesNJ]

Hi Friole

Friday will be my 12th shot of a 24 week treatment series.  I have genotype 2 and started with a viral load of 194,000; it

[dancegirl54]

Hep Doc answered my email in a day - I am so impressed - this doc is so good - he has been extremely kind and supportive to daughter who also has this - asking her to email him her grades, etc.  Not many like that out there and he is one of top hep docs in country.
Any way he said I have such mild liver disease that HRT should be OK in either form but reminded me of association with liver lesions, cancer and increased risk of clotting. Asked how bad my symptoms were and advised an informed decision. All I have really are hot flashes and don't sleep well. For now I think I will do nothing and continue on my path to improving my diet, exercise and keep reading posts in this forum - have loved the one about tea!!!!!!! And yes I will definitely let you know about Phase III - I'll ask when I go in for blood work.

Cajun - Please let us know how you are. Daughter had really bad similar pain and a bad cold - it was a lung infection.

[cuteus]

what a great gift, to find a new friend among the adversity HCV brings.  THere is always good with the bad, that wonderful encounter on the phone and the emotions and faith in humanity it brought you, would not have happened without this dreadful virus. Maybe you don't need the extension, others have cleared with the 48 wks even when detected at 12 wks.  Of course if you feel well enough to continue, and no major medical problems from tx, why not go into mopping up mode? good luck

all: that is one reason this forum works so well, the majority of times. The flow of new people with new experiences added to the existing pool of background knowledge, makes for one great resource. As Layla suggested, try to donate anything to MH, anytime you are ready.  I confess it took me over two yrs to motivate myself. I hope others don't belong to my procrastinator's club.
be well

[vegas777]

that's for info, I think I will do the same as you and pass on the HRT for now...

[MrsOckert]

That is soooooo coool!!  I'm glad you were able to get thru and she was helpful.  We all knew there had to be a way around that durn hospital pharmacy.  I am so very happy for you!!!

[friole]

Ivette, I have got a long time to decide whether or not I want to extend.  It is just nice to know I can if I want to.  If we all just treat each other like human beings, like my case manager did with me, instead of like numbers, what a better place this would be.
Kathy