Newly diagnosed, stressed about long wait for appointment date

[WorriedWilliam]

  Hello everyone. Received the dreaded call from a Nurse Practitioner 2 days ago informing I had tested positive for Hepatitis C. She urged me to immediately go to the emergency room. The ER ran the normal blood tests (nothing HCV specific). The Doctor said he could not understand why she told me to go to the ER. He called a local Hepatology Specialist on the phone. The specialist laughed. There was no reason for me going to the ER. Although I appreciate the Nurse Practitioner's concerns, now we are going to be stuck with expensive ER bills for an unnecessary visit.
  Now the story gets worse. I was referred to the only Hepatologist in my area. Called to make an appointment, but was told that it would be about 2 weeks before they would even call back to schedule an appointment, and that appointment would likely be 2-3 months from now. Not wanting to wait I looked online and the only others I found were over 100 miles from me. The earliest appointment I could get was 2 months from now. I'm really nervous and wanting to get answers and start treatment ASAP. I'm really depressed after researching the prices of the meds ($94,000 wtf). I've read Cigna is notorious for denying coverage.
  I hope you don't mind me asking a few questions. Should I be responsible for those ER charges? I would have not went without the NP urging me to go. Do I have to see a Hepatologist, or would a Gastroenterologist or some other type of Doctor suffice? I'm eager to see what genotype I have so I can research treatment options. I'm really scared, nervous, and depressed!! Thank you for listening.

Btw: Viral Load= 3.2 million
       AST= 103
       ALT= 179
       Genotype= not tested yet

[dragonslayer]

William... Take a deep breath and relax; we were all there where you are once upon a time.. Although, I must say, I dont think too many of us were ordered to immediately go to the ER.. That nurse practitioner you had was  a bit of a moron, seems to me.  I wish there were some way for you to make her culpable for those charges.   I'm hoping your insurance policy will cover most of it.

Ok, now on to the good stuff... First, waiting 2 or 3 mos for an initial appt with a specialist is not all that unusual these days.. Happened to me too.    HCV is a Very slow, progressive illness.  Nothing will likely happen to you in the next couple of months .    The good news is that because you were diagnosed in 2016, there are excellent and relatively quick treatments available to you... 

So try not to get ahead of yourself.   You will meet the doctor, he may want to get a scan of your liver to find out what condition youre in, and prescribe treatment. In my case, my hepatologist along with the wonderful specialty pharmacy he uses take care of the insurance preauth and any denials, if there are any.. I had none.

As for the kind of doctor to see, you can see a gastroenterologist, hepatologist, or infectious disease doctor.  They should all be familiar with treating HCV.

Most insurance companies are covering today, so, one step at a time, and before you know it, this will be a thing of the past.

[WorriedWilliam]

William... Take a deep breath and relax; we were all there where you are once upon a time.. Although, I must say, I dont think too many of us were ordered to immediately go to the ER.. That nurse practitioner you had was  a bit of a moron, seems to me.  I wish there were some way for you to make her culpable for those charges.   I'm hoping your insurance policy will cover most of it.

Ok, now on to the good stuff... First, waiting 2 or 3 mos for an initial appt with a specialist is not all that unusual these days.. Happened to me too.    HCV is a Very slow, progressive illness.  Nothing will likely happen to you in the next couple of months .    The good news is that because you were diagnosed in 2016, there are excellent and relatively quick treatments available to you... 

So try not to get ahead of yourself.   You will meet the doctor, he may want to get a scan of your liver to find out what condition youre in, and prescribe treatment. In my case, my hepatologist along with the wonderful specialty pharmacy he uses take care of the insurance preauth and any denials, if there are any.. I had none.

As for the kind of doctor to see, you can see a gastroenterologist, hepatologist, or infectious disease doctor.  They should all be familiar with treating HCV.

Most insurance companies are covering today, so, one step at a time, and before you know it, this will be a thing of the past.

Thank you for your reply Dragonslayer. The Hepatologist nearest me has a low rating from patient feedback. They rarely answer the phone either, so I'm not impressed so far. My wife went ahead and made me an appointment with another physician, but they are about 2 hours away from here. This doctor has good ratings and works for a renowned hospital (Emory in Atlanta). However, I'm not sure how that is going to work out after reading about blood work every few weeks during treatment (if I am lucky enough to get approved). I'm still in a little "shell shock" about the price of the medication. 

[Lemonade]

William,

I found out I had Hep C when trying to donate blood. I received a matter-of-fact letter, from the blood bank, telling me I had Hep C and needed to seek medical treatment. I was in shock. I was panicked because I was sure that I was at death's door. That was back in 2001.

Like you, I could not get an appointment for three months to see a GI doctor. I called my regular doctor in tears, explaining how I had this dreadful disease, and couldn't get in to see a specialist right away. My doctor reassured me that I wasn't going to die, and that I would be fine. He was right. After the initial shock wore off, I used that three months to get myself into shape. I ate right, and I exercised everyday. That was how I coped with my anxiety, and it worked very well at keeping me calm until I was able to see the specialist. Here I am 15 years later, and my Hep C has not progressed. With the advent of new Hep C drugs, which have over a 90% cure rate, I am just now being treated.

My insurance experience:  I was denied initial treatment, my GI doctor took care of the appeals. When my viral load was still detected after four weeks of treatment, I was denied an extension of treatement, from 8 wks to 12 wks. My GI doctor took care of the appeal, and my treatment was extended. I'm sure your specialist will take care of any insurance issues. They have extensive experience working with insurance companies. My co-pay for each month of Harvoni is $5.

Today, I got my 8 week treatment lab results, and my viral load is undetected:) Another four weeks of treatment to go.

Liza Ann

Note: first time poster, long time lurker

[WorriedWilliam]

William,

I found out I had Hep C when trying to donate blood. I received a matter-of-fact letter, from the blood bank, telling me I had Hep C and needed to seek medical treatment. I was in shock. I was panicked because I was sure that I was at death's door. That was back in 2001.

Like you, I could not get an appointment for three months to see a GI doctor. I called my regular doctor in tears, explaining how I had this dreadful disease, and couldn't get in to see a specialist right away. My doctor reassured me that I wasn't going to die, and that I would be fine. He was right. After the initial shock wore off, I used that three months to get myself into shape. I ate right, and I exercised everyday. That was how I coped with my anxiety, and it worked very well at keeping me calm until I was able to see the specialist. Here I am 15 years later, and my Hep C has not progressed. With the advent of new Hep C drugs, which have over a 90% cure rate, I am just now being treated.

My insurance experience:  I was denied initial treatment, my GI doctor took care of the appeals. When my viral load was still detected after four weeks of treatment, I was denied an extension of treatement, from 8 wks to 12 wks. My GI doctor took care of the appeal, and my treatment was extended. I'm sure your specialist will take care of any insurance issues. They have extensive experience working with insurance companies. My co-pay for each month of Harvoni is $5.

Today, I got my 8 week treatment lab results, and my viral load is undetected:) Another four weeks of treatment to go.

Liza Ann

Note: first time poster, long time lurker

Thank you for your reassurance Liza Ann. I am glad to hear you are receiving and responding to treatment. Really hoping I get lucky and find a doctor willing to fight for me too. Have had too many recent experiences with doctors who seemed to not to care. I'm starting to realize the doctor in Atlanta that I'm scheduled to see in November is too far away to be practical. There is a local nurse practitioner who specializes in Hep C , and has even started a local support group. She seems promising and has good reviews, but not sure if Cigna would be skeptical approving recommendations from a NP for such an expensive treatment.

[Lemonade]

William, you might not have to go as often as you think. I am not well-versed in the experiences of other individuals, like Paul. I can only relay my experience.

My insurance required that I go to a gastroenterologist or a hepatologist. My doctor's appointment and blood work was done on the same day. I did have to go back to have an ultrasound. I'm sure that you can probably arrange for all that to be done on the same day, if they know how far you are driving. You'll find out your Genotype and all the information the insurance company needs to verify your Hep C status. It takes about four weeks to go through the insurance process (denials & approval). Once approved, the medication is delivered via FedEx or UPS. After being on treatment for four weeks, they need blood to make sure the treatment is working. The only reason I had to go back for a 8-wk lab is because I still had a detectable viral load. Now that it is non detected, I don't go back until 12 weeks post treatment, which is in January.

I know all of this is overwhelming right now, but you'll get through it. If it were me, I would go ahead and make the appointment at Emory, you can always cancel it if you find another avenue. The Hep C NP should have valuable information for you, too. Also, she should be able to help you wade through all this. You'll be okay, we've all been there:)

[dragonslayer]

Also, at least around here, you can have your blood drawn at an associated lab in a location near you; doesnt have to be where the doctor is...  Same might apply to radiography.

>>Once approved, the medication is delivered via FedEx or UPS. After being on treatment for four weeks, they need blood to make sure the treatment is working. <<

Thats really a very old protocol.. Back in Interferon's day, they had to test on treatment because if you were a nonresponder, theyd find out and stop treatment.. Doesnt apply to modern DAAs .. Virtually everybody, on treatment, gets a large reduction in viral load... Its the post treatment tests which are the  ones to pay attention to..  Several of us were detected on last day of treatment and even later, but resolved to SVR at the 12 wks post marker.  So any insurance company demanding this on treatment testing and even discontinuing coverage as a result just because they are detected at 4 wks into treatment (even though a big decrease almost definitely occurred) is not operating in modern times and is making a real mistake.

[Lemonade]

Paul, When I said "they" I didn't mean the insurance company, I meant the doctor (to see how well I was responding).  I should have been more clear. It was because of the 4 week lab that I was able to have my treatment extended. The insurance company would not have approved, otherwise.

I have been reading the posts here for a few weeks, and especially yours. It is because of your story, I felt comfortable not having my treatment extended. However, my doctor disagreed:(

[dragonslayer]

Paul, When I said "they" I didn't mean the insurance company, I meant the doctor (to see how well I was responding).  I should have been more clear. It was because of the 4 week lab that I was able to have my treatment extended. The insurance company would not have approved, otherwise.

I have been reading the posts here for a few weeks, and especially yours. It is because of your story, I felt comfortable not having my treatment extended. However, my doctor disagreed:(

Yea, Lemonade, it seems some doctors are slow to realize we're not in interferonville anymore!

[FutureThinker]

Hi WW and welcome to the forum - you'll find a lot of good info here in addition to support.

Re: frequency of blood work:  I just got my SVR 12 last month and my doc asked for blood work at 4, 8 & 12 weeks, then 3 mos. and the last will be at 6 mos.  We've seen a big variety of time tables for this among forum members dependent upon the physician & insurance. But I have my labs done locally and the reports are sent to my doctor who is 1+ hours away.

It's important to try to get the most experienced care you can.  I chose to travel to a university teaching hospital's department that dealt with liver issues exclusively.  I wanted someone who would more likely be up to date vs. someone who saw liver problems only occasionally. It's an important decision, so don't let distance necessarily be the determining factor.

I know this is a lot to take in, but you will get thru this!  FT

[FutureThinker]

WW, here's another tip:  The AASLD's website is considered one of the best on the most up-to-date info on HCV: hcvguidelines.org.  This site regularly updates it's information.

The AASLD's (American Assoc. for the Study of Liver Disease) annual meeting, known as "The Liver Meeting" will be held in Boston in November, so with all the people who have been treated and cured this year, it should provide us with a lot of new data.  FT

[WorriedWilliam]

It's important to try to get the most experienced care you can.  I chose to travel to a university teaching hospital's department that dealt with liver issues exclusively.  I wanted someone who would more likely be up to date vs. someone who saw liver problems only occasionally. It's an important decision, so don't let distance necessarily be the determining factor.

I know this is a lot to take in, but you will get thru this!  FT

Thanks for the help FutureThinker. I went ahead and made an appointment with the Nurse Practitioner near me. Her focus is on treating Hep C and she even started a local support group. She also shows up on the Gilead website hep c physician search. Figured I at least could get some of the labs out of the way. If I'm not satisfied with her services I can always keep my appointment with the specialist 2 hours away. I'm eager to find out my genotype so I can research treatment options. Just hope the insurance company doesn't deny me treatment based upon her not being an MD. 

[FutureThinker]

WW, I've not heard of an issue w/ having a NP or PA involved, vs. an MD. Actually, my practitioner is a PA in the hepatology department, and it's not been an issue.

Anyone out there encounter this problem?

Also, I was denied 2x and had to take my case to my state insurance board.  They overturned the denial and required my insurance to pay for the Harvoni.  So, there are options if they do deny you, including generics.  FT

[WorriedWilliam]

If I knew my genotype and had the extra cash, I would probably go the route of obtaining generics. Although I would be concerned with getting ripped off or placebos. One thing that has me very worried is that my liver enzymes are so high. I've yet to see anyone with theirs so high here on the forum. Ive seen similar viral loads, but not liver enzymes. Hope this does not mean by liver is screwed.

AST = 103
ALT = 179

[FutureThinker]

Hi again, I understand your concerns w/ those numbers, but I have seen others on here > 100.  If you take a look thru some of the older posts in the "on treatment" category, say back a year, you'll likely see others in your range.  Those posts are from the "first round" of pioneers after Harvoni was approved in 10/14 and then Vierka in 12/14. Hang in there! FT

[Philadelphia]

Hi William, once you get the initial busy work out of the way and get on the path to treatment it should all start to fall into place. We've all been there, it's hard to negotiate the labyrinth. But once you get started, treatment has its own rhythm and routine and things calm down in terms of uncertainty. Good luck! Keep us in the loop.

And hi Lemonade.

[Phoenix17]

Hi William -  I have Blue cross and my Hep doc thought that I would not get approved because BC is notorious for denying.  I was approved within 2 weeks. i think ins companies are getting better at approving drugs for hep c. I am a Geno Type 2, and started Epclusa 4 days ago. I was scared that they would not approve, and was ready for a fight! For now just concentrate on getting your tests done. I have to have another  blood test a month after starting and then not until 12 weeks after stopping. There are new medications out there that will help you no matter what your geno type is. Pretty soon you will be cruising along on treatment and before you know it, this will all be behind you. I know how you feel about waiting. That is the hardest part for me!
You will do great!

[Lemonade]

William, my enzyme levels were similar to yours when I was first diagnosed, and my
liver biopsy showed minimal scarring.

Philadelphia, hello

[WorriedWilliam]

You guys are great! I really appreciate the advice,info and encouragement. I just pray I have a genotype that responds to Harvoni treatment. I have Cignà and it's on my covered meds list, but not Epclusa. I've read that Cigna worked out a deal with Gilead so they could get it at a lower price. Hopefully that means a better chance of me being approved for treatment.

[Lynn K]

If I knew my genotype and had the extra cash, I would probably go the route of obtaining generics. Although I would be concerned with getting ripped off or placebos. One thing that has me very worried is that my liver enzymes are so high. I've yet to see anyone with theirs so high here on the forum. Ive seen similar viral loads, but not liver enzymes. Hope this does not mean by liver is screwed.

AST = 103
ALT = 179

Hi William

Liver enzyme levels (or viral load for that matter) do not correlate to extent of liver damage. All elevated enzyme levels mean is that something is hurting your liver not how much damage there is. Liver enzymes are released by you liver as it tries to repair itself from insult or injury.

My liver enzyme levels before my recent treatments were ALT 78 and AST 54 just barely above normal and I had liver cirrhosis for 6 years at that point. Those type of results were typical for me the ever since I knew I had hep c.

People can have higher enzyme tests and have no damage or just slightly above normal and have serious liver damage. The only way to know how much liver damage you have is to have a fibroscan test, fibrosure blood test, or a liver biopsy.

Just to add my recent liver panel in March 2013 a year after I finished treatment was ALT 24 AST 22

Hang in there it will all get figured out.

Lynn

[WorriedWilliam]

Well at least there is some good news. My wife tested negative. Thank God for that! We've been together over 7 years, so I'm surprised she hasn't gotten infected. Not sure how I got it or how long I've had it. Can the doctors tell how long?  I don't do drugs and have not been unfaithful. I'm suspecting I got it at work. Have had jobs with manufacturers of sharp metal products. Constantly getting cut was pretty much normal even with gloves.

[Lynn K]

Hi William

Glad your wife is negative but really he c is not generally considered to be a sexually transmitted illness.

For folks in long term monogamous relationships the CDC does not recommend the use of barrier protection (i.e. condoms). While having multiple sex partners, engaging in rough sex practices, or one or both partners being co infected with HIV those persons would be at a higher risk of transmission.

We have many here where one spouse is infected while the other is not. So while I am not surprised she is not infected I am happy for you both.

There is not really a way for a doctor to know when you became infected with hep c. If you cant think of a specific event where you might have gotten infected you will likely never know how long you had hep c.

There are a number of people with no idea how the became infected with hep c. Some suspect mass inoculations in the military with air gun injectors but that connection isn't proven as far as I know.

There was just a news item here in WA state where a woman was notified by her dental clinic to get tested due to some problem they had with sterilization of equipment. Not a frequent thing but who knows.

Anyway as hard as it might be going forwards not knowing, the way you got hep c is not important. We here all have hep c from one thing or another but we all have (or had) hep c.

The only thing that matters is getting treated and getting cured

[gnatcatcher]

Hi, William --

Sorry I'm just seeing this thread now, but I want to give you some extra assurance. Note below my 262 ALT and 217 AST pre-treatment and that I had HCV for almost 44 years before I started treatment. (My spouse didn't get infected.) Then note the improvements during and after treatment. SVR means "sustained virologic response" (undetected HCV) at ___ weeks after the end of treatment. SVR12 = cure; the later tests are just extra peace of mind.

During and after treatment, sometimes I'm seen by the hepatologist, other times by the nurse practitioner. My insurer (Anthem BC/BS) covers both.

You seem to be doing a good job of educating yourself. Before you know it, you'll be educating others here.

Gnatty

[WorriedWilliam]

Sorry about the delay in replying. I appreciate everyone's comments since my last post. I wanted to wait until my labs came in so I could have more specific information.

Here are my results:
Genotype: 1a
Viral Load: 3337518
Echosens Fibrometer:  Fibrosis Metavir Classification - F2 (0.56)
                               CirrhoMeter Score - 0
                               InflaMeter Metavir Classification - A1/A2 (0.48)
                               A2M - 349  (range 131-293)
                               ALT -  83   (range 5-50)
                               AST -  51   (range 9-50)
                               GGT - 107   (range 7-51)
                               All other counts normal

  Not sure how these ALT and AST values compare with my prior ones which were into 100-200 range just weeks before. I'm hoping the new results indicate lower levels, however they are based upon a different scale.
  The doctor prescribed me 12 weeks of Harvoni and sent all my records over to Aureus Specialty Pharmacy. I know Cigna has a specialty mail pharmacy of their own. I am wondering if if it would be better to go with Aureus or Cigna? Curious as to which would result in a greater chance of not being denied, be more expedient, and have less out of pocket expense. Or should I try both places?
  I'm also getting nervous about treatment after reading comments on an article about Harvoni in which numerous people said the treatment resulted in large, fast spreading cancerous tumors immediately after EOT. Not to mention the posts on this forum of individuals describing lingering fatigue and joint pain. Some even feeling worse than before treatment.   
  Thanks for listening everyone. Having your support is wonderful! I'm trying to be proactive about my treatment.                 
                               

[gnatcatcher]

William, you're in much better shape than I was pre-treatment. Please keep in mind that forums hear disproportionately from those who have a rough time. I'm a little over 1 year past finishing treatment and definitely have more energy and less joint pain than before I got treated. Because I was F4, I get an ultrasound every 6 months, and the two I've had post-treatment did not find any tumors. You've got the advantage of being only F2.

As for which specialty pharmacy, it isn't uncommon for an HCV practice to use just one specialty pharmacy to handle the applying for coverage, but that specialty pharmacy will turn things over to a different one if necessary insurance-wise. My hepatologist uses Giant Eagle specialty pharmacy which then turned things over to CVS/Caremark (my prescription benefit plan). Why these specialty pharmacies are so nice to each other I don't know, but others on these forums had similar experiences.

Gnatty

[Lynn K]

 As far as the studies that show to a higher incidence of people developing liver cancer posttreatment a couple things about that one is that the study was found later on other studies to be not entirely accurate they are still investigating if there is s connection and second that was involving patients who have had cirrhosis for a long time. As you don't have cirrhosis (F4) that study has no relationship to your condition

[WorriedWilliam]

  Well the doctor's office called to inform me that Cigna insurance has denied coverage of Harvoni. When I asked them the reason for denial, they said they had no idea. I called Cigna and they were reluctant to give me any details. They simply stated that there were several reasons, one of them being that the "Diagnosis did not match up". They also said they faxed the info to the doctor's office. However the doctor's office denies receiving anything. To add insult to injury, I called the Aureus specialty pharmacy and spoke to the nurse that was handling my case. She was very rude and scolded me for even calling. She also had no info on why I was denied. She said that they will handle the appeals and that it could be 6 months to a year before I heard anything back......if ever. She basically said "don't call us, we will call you......if you're lucky". Cigna supposedly sent me a denial letter over a week ago, but it hasn't arrived yet.
   I'm very depressed over this. So far the doctor's office has been incompetent. Three people had to be involved when drawing blood just to figure out which vials were needed, how many, and how to enter it into the computer. They still screwed up and accidentally gave me the wrong labs. They had me waiting on results for a test they never gave. I had to go back the next week to give more blood. They realized the mistake when they called to inform me the results of my genotype test. They stated it was "A1/A2". I told them there was no such genotype. I informed them  I believed they had mistaken my Fibrometer activity score for my genotype. That's when they realized they had given me the wrong test, accidentally giving me another expensive Hep C antibodies test, instead of the genotype test that I needed. They also called and said I needed to have a CBC done. I asked what that was and they had no clue. I looked at some labs I had done via another doctor, and turns out I had already provided them a copy. They were like "oh yeah, I see that now...our bad". I know the person handling the paperwork and calling with the results is not a doctor or nurse. However, it seems they should at least have SOME kind of BASIC medical knowledge. It's pretty bad when I know more then them and have caught their mistakes.
  This is becoming a nightmare. I don't feel any of the people give a damn about my well being. I want to be kept "in the loop" and updated on the process. The way things have been handled so far, I'm afraid if I don't stay on top of things I will never receive treatment. Nobody seems to be communicating effectively. I'm really stressed and considering going through a different doctor and specialty pharmacy. I'm also contemplating taking the risk of obtaining my meds from overseas. Sorry for the rant, I am just sad and frustrated. I thank everyone for being so kind and giving me support during this tough time.

[Lynn K]

Yeah so sorry to hear about all that sadly you are not alone in that experience.

Your speciality pharmacy has to send your reason for denial. Then hopefully your doctors office should appeal.

Once you have I believe 3 denials you can appeal others know more about this process I was only denied once so didn't have to go that route.

A CBC  is called a complete blood count. It looks at all the different components of your blood like red blood cells (RBC) white blood cells (WBC) platelet count and I think about a dozen other components of your blood.

Hang in there and keep up the fight you will eventually be able to get treatment. If you don't feel your doctor is providing good service vote with your feet. You should be looking for at least an infectious disease specialist with experience in treating hep c. Make sure they will help you with any needed appeals. Also another type of specialist could be a gastrogeterologist again with experience treating patients with hep c.

Hang in there it gets better

[WorriedWilliam]

  Thank you Lynn K. I guess I just fear that the doctor's office has made so many mistakes already that they may have made a mistake on the paperwork. I'm not really understanding the "Diagnosis does not match up with treatment". Cigna refuses to go into details on the phone. I know that Harvoni is Cigna's preferred medication for treating my genotype. Both Aureus and my doctor makes it sound like Aureus handles everything from this point on, even appeals. The insurance company says they have faxed all the info about the denial to my doctor. Aureus and my doctor deny receiving anything. I'm afraid my case may just be sitting there "dead in the water" because of a miscommunication or error. If I knew the process was still going, I would feel more confident. How did your receive your denial letter?  Was it regular USPS, certified mail, etc.?  If I were to switch doctor's, would that cause a problem in the appeal process? Would my new doctor still be obligated to go through Aureus Specialty Pharmacy?

  BTW, I have a lot of respect for those whom have been cured yet still help others on this forum!

[Lynn K]

The speciality pharmacy is based on your insurance.  One thing about specialty pharmacies another name for them is pharmacy benefit managers (PBM).  It seems like they exist to try to avoid prescribing expensive medicine to keep the cost of insurance down for the companies that use their services.

 Yes for the moment your situation is probably basically in limbo until they get the fax situation sorted out.  Why we are still using fax machines instead of emailing people I have no clue.  I had the same sort of situation arise as well. The specialty pharmacy said they faxed things to my doctors office that they never received my doctors office faxed things to the specialty pharmacy that they said they never received.

 My specialty pharmacy person I spoke with attempted to tell me on the phone the reason for my denial but the person talking to couldn't even pronounce anything correctly. When I finally did receive the denial letter about 10 or 12 days later via snail mail it wasn't even what I was under the impression they were talking about. The people that they have on the phones at the specialty pharmacy I don't think are necessarily very knowledgeable at times .

Good luck

[WorriedWilliam]

Yes for the moment your situation is probably basically in limbo until they get the fax situation sorted out.  Why we are still using fax machines instead of emailing people I have no clue.  I had the same sort of situation arise as well. The specialty pharmacy said they faxed things to my doctors office that they never received my doctors office faxed things to the specialty pharmacy that they said they never received.

How did the fax situation finally get resolved? Did you have to intervene?

[Lynn K]

I called my doctors office to confirm faxes were sending received and I called the specialty pharmacy for the same purpose.

We need to be proactive with our healthcare too bad if they don't like you calling if they help you out you will go away and stop bothering them.

Be the squeaky wheel.

[lporterrn]

Dear William,
Let's start with looking at the pluses before fixing the minuses.
1) You are in a relatively early stage of liver disease, and have plenty of time to get this sorted out. Fortunately hep C does it damage in a matter of years rather than months.
2) This is just the first denial. This is typical.
3) You stated many, many reasons to suspect this denial is just a mistake and not a flat-out denial.
4) You have Cigna, which right now might not feel like a great company, but it generally covers treatment.

So, my suggestions:
1) Vent all you want here. The rest of the time, find a way to set aside your frustration. I am NOT saying to get rid of your frustration. We are human, and frustration is a normal response to this. BUT, you are trying to get the treatment to take care of your health, and if you are carrying around this stuff, you aren't doing your health any good.
2) Give it one week. You are on everyone's radar, so they will probably call if they get it sorted out. During that time, take everything you wrote, to us, and put it in a word doc. (You can copy and paste). Leave out references to their intelligence and competency. (Share that with us.)
If you don't hear back from them, let us know. I'll help you turn the facts into a document which you can fax on Monday morning Oct 31.

There are more options. You can work with a patient advocate. Also, there is at least one physician who works via teleconference. If he doesn't work in your state, perhaps he knows of someone who does. He is very successful in working remotely. We'll get this sorted out. In the meantime, try to find something to keep your mind occupied elsewhere.

Question - do you drink alcohol or smoke or take a drug that may raise liver enzymes? Your enzymes are only mildly elevated, but the GGT doesn't usually go up with hep C alone (although it can). It also tends to be elevated more in men and in African Americans. Drinking and medications are the most common causes. Again, this isn't a cause for concern at this point, but if the GGT doesn't go down after treatment, your doc will need to find the cause. 

[WorriedWilliam]

  Thank you for your advice and offer of help lporterrn. I truly hope I am not coming off as being angry or hostile. I've been very polite to everyone I've spoke to concerning my issue. Actually this was the first time I contacted the specialty pharmacy. So I was surprised she scolded me like I had been constantly bothering them. I tend to ask a lot of questions. I want to understand the process and be kept updated on the progress of my case. That seems to bother some of the people I've dealt with. You are right that I am using this forum to vent my frustrations. It's very therapeutic hearing from others who have been through something similar. I am so afraid of accidentally transmitting this disease to my wife or children. I'm very self conscious now and can feel myself withdrawing from people. I'm trying not to be this way, but it's difficult. 
  To answer some of your questions. Yes, I was a drinker, but not a smoker. I brewed my own beer and made my own wine. It was one of my favorite hobbies. But I have abstained since being diagnosed. It's not been easy nor enjoyable. My AST/ALT scores seem to have improved since stopping drinking. I've not done good on changing my eating habits. I still like my steaks, hamburgers and pork bbq. Hopefully I can improve in those areas sooner than later.

[FutureThinker]

Hi WW -- For starters, many of us (unfortunately) have had to go thru multiple denials to get our treatment.  Our insurance industry is not interested in paying these exorbitant prices and will often deny, deny, deny to see if you will give up.  Don't!!

I was denied twice and had to take my case to my state insurance board.  You may also have that option, your doctor's office should be familiar with that. The insurance board overturned the denials and made my company pay for my treatment.  So you may have to go this route, but it may well be a good option for you.  So find out about that.

I was infected 40+ years ago and have been married over 35 years.  My husband tested negative.  So you don't have to put a lot of worry into that issue.  Also, keep in mind this disease is transmitted via blood to blood contact -- your kids are not likely to contract this, unless your blood mixes with theirs (which is unlikely!). So, again, use good hygiene around the house and you all should be fine.  This disease is actually not easily transmitted -- it has to be blood mixing with blood.  These are common concerns all of us had, but rest assured, it is highly unlikely you will transmit this to either your wife or children.

There are many theories as to how some people have contracted this -- one is school vaccinations back in the 60s, when syringe hygiene wasn't as stringent as today.  Tattoos can be another method.

I am concerned re: the ineptness of the doctor's office......... is there a possibility of  changing doctors?  I chose to drive 1+ hours to an experienced hepatologist in another town over being treated where I live. Is this an option? You're going to have added stress worrying about if your care giver is ordering the right test, etc. which you don't need right now. If changing is an option, give that some thought.

And, I had to get quite "testy" with my insurance company more than once in order to get answers.  They will put you off as long as you let them and use ANY irregularity whatsoever in your chart or reports to deny. I agree wholeheartedly w/ the saying "you get more flies w/ honey than vinegar", but don't let them push you too far.  This is your health!

I am so sorry you're having to go thru this -- it adds so much more stress to your life and is unnecessary --  but you deserve this treatment,  so keep up the fight for your health and future! It is draining, but persevere and you'll get thru this.

We are all here for you! FT

[Grateful Gmom]

Hi William,
I am also with Cigna. I've learned quite a bit in the month's since I got my diagnosis as well as finding out my husband has Hep C!!!
 
I had to wait 3 months to see my specialist, and glad I did. He was in the original trials and director at Johns Hopkins and very confident in the treatment. One thing I didn't realize being a newbie was how little I would see or hear from him but how involved he was behind the scenes. The specialty team he assigned me to handled every aspect of the process. I then was stunned to see my rejection letter from Cigna, and the reasoning seemed similar to yours. What it actually meant was they denied the 12 weeks because I did not meet 2 of the criteria for 12 week treatment (viral load similar to yours, and no cirrhosis). They did however approve for 8 weeks just two days later.

The next step was the specialty pharmacy hand delivered by courier both mine and my husbands Harvoni, awesome (with a $5 copay through the Gilead website coupon)......until I got a letter from Cigna stating THEY have a specialty team and THEY need to handle our next Rx's or we will have to pay full retail (0ver $30K). So basically we are working with two specialty teams, which I can't really complain about at all. The team from Hopkins seems to have it together a little more efficiently, but since I am HUGE ON SELF ADVOCATING our needs, it is working out.

We are both two weeks in, I was approved for 8 and he was approved for 12 less than 3 weeks after his visit and scan. We are pretty sure I got mine from a blood transfusion as I used to give blood to Red Cross regularly, then after the transfusion got a letter stating I tested positive for non A non B. We don't have any idea exactly how husband of 44 years got it, but we also don't care, or he doesn't "blame" me. We are approaching this with a team mentality and even did "Cheers" with our Orange juice over Facetime when we took our first dose of freedom. We are so grateful and try not to worry about what we don't know or can't change and learn what we can and advocate for ourselves.

I would look into the possibility and mindset that you are probably going to be approved for the 8 weeks!! Let me know if I can assist in anyway at all as Cigna has been good to work with in our case.

[Grateful Gmom]

William, any updates?