CONQUERING THE DRAGON!

[earthwarrior54]

When I found out I had HepC in 2004 I had been going to doctors for around 2 yrs. complaining of symptoms that no one could put a name to. I was given handfuls of anti-depressant scripts because of course; "it was all in my head".  I was given pain meds basically to shut me up seems that's what doctors do when they are too lazy to be doctors & actually find out what's wrong with you! When I asked one doctor "what is wrong with me?" she just threw up her hands & said "I don't know!   Finally, I found Dr. Navarro, a general practitioner near me. I will never forget telling him how frustrated I was, that I knew there was something wrong & I could only describe it to him as feeling like my blood was "toxic".  I described how my blood felt like it was hurting me as it went thru my system.  Knowing nothing at all of HepC; little did I realize how right on the button my description was!  Dr. Navarro ran a slew of tests but out of all the doctors I'd seen, he was the only one to run a test for the HepC virus.  He said "I'm sure you're fine but let's do it anyway, you are in the right age group". 

A few days later I received a call & Dr N told me he was surprised to find that I tested positive for the HepC virus.  He referred me to a Gastro-Entro & asked me if I had any questions.  I had none because my mind was blank from shock, fear & lack of knowledge.  I was finally happy that I could put a name to my symptoms. I even felt vindicated I had been right all along. But I became frightened when I went online & read about this disease, this VIRUS, I now had.  The internet is a wealth of information but sometimes all that info can be a bit overwhelming & scare the crap out of you. The first thing I asked my HepC doctor was "am I going to die?"  Thus began my ride with the Dragon.

When I was first diagnosed in 2004 my viral load was 12.7 million!  How can that many viruses fit into such a small amount of blood?  I was lucky however, as my liver panel was normal. I'd had numerous surgeries over the years preceding this & my liver functions obviously had always been in the normal range so no red flags were ever set off. I had also stopped drinking a few years earlier - I wasn't an alcoholic but I definitely could slam the crazy water down or easily finish a bottle of champagne by myself!  But the hangovers were awful & I finally got sick of being sick. I had also been a vegetarian for years & with not drinking I also didnt smoke anymore. (I was that pain in the butt friend who only smoked when she drank, & then bummed cigs off you all night long). I was getting a lot of exercise too; mountain biking, hiking, canoeing, snowshoeing, rollerblading definitely living a healthy lifestyle. Thank goodness too as those things bought me time & with HepC time is everything.

I researched the treatment options available & learned of the horrendous side effects.  With time on my side & new options on the horizon; I opted to wait.  Being into naturalistic approaches I hit the internet & found Lloyd Wright's website. If any of you know of him Im sure you also had your doubts: Was he out to scam sick folks out of their hard earned money or was he sincerely trying to help? I still dont know for sure. I researched the products he recommended & picked out ones I felt comfortable trying.  His prices were competitive but one in particular sparked my interest: 'natcell frozen thymus extract'. However it cost $400 for a one month supply! I emailed Lloyd & he offered to sell it to me for "only" $300 so I decided to give it a try.  All together I spent over $500 for my one month supply of goodies. Thank God for plastic!  Unfortunately, I was taking so many supplements, numerous times a day, that one day I just puked them up. After that I decided to narrow down what I bought to a few things, besides I could not spend that kind of money every month anyway.

In 2007, my mom was diagnosed with cancer & I seeing how bravely she took on the disease I decided I could be strong too.  I never told her I had HepC but her courage gave me the strength I needed to try to cure my disease too.  The treatment then was Peglated Interferon with Ribavirin.  I lasted under 30 days.  Back to the supplements & healthy living.  In 2011, Telaprevir was approved. This was supposed to be a miracle drug with few side effects. NOT! Taken along with interferon & ribavirin for the first few weeks, I lasted less than 3. How the hell anyone can eat 20 grams of fat when everything makes them puke is beyond me.  I'd like to meet the joker who came up with that plan!  Back to waiting, except by now the side effects of the HepC were taking their toll. My liver functions always stayed normal but I suffered from really bad brain fog, extreme fatigue & symptoms similar to rheumatoid arthritis. I was going to take the next drug that came along that didn't include interferon or ribavirin.

October 2014: Harvoni is approved.

November / December 2014: Capital District Health Plan of New York denies access to the drug. An absolute travesty that someone having great insurance & paying a good price for it cant have access to a drug that can cure them!

January 2015: Gilead approves me in record time to receive Harvoni for free. I begin taking it on the 23rd.

February 24, 2015: After 24 days on the program my viral load had dropped from over 3 million to <15  - Doing a Happy Dance.............

[Sweetie1]

Hi, That is just wonderful news! I took Harvoni for 12 weeks, now HCV negative! Best to you!  Karen

[atomic dog]

When I found out I had HepC in 2004 I had been going to doctors for around 2 yrs. complaining of symptoms that no one could put a name to. I was given handfuls of anti-depressant scripts because of course; "it was all in my head".  I was given pain meds basically to shut me up seems that's what doctors do when they are too lazy to be doctors & actually find out what's wrong with you! When I asked one doctor "what is wrong with me?" she just threw up her hands & said "I don't know!   

Unfortunately, I suspect your early experience was all too common. When Hep first started ravaging my liver--messing up my thyroid and spurring massive panic attacks- and leaving me virtually unable to leave the house-I was told by the head of the UCSF endocrinology department "there's nothing wrong with you." That was just before he walked out of the examination room. I was aghast. I turned to the other doctor in the room and asked, Then why do I feel so bad?" She replied, "What he means to say is, he doesn't know what's wrong with you." This was before the Hep C virus had been identified--I was latter diagnosed with non-A, non-B hepatitis.

Now I'm on Week 2 of Harvoni (couldn't handle antidepressants, so couldn't do interferon years ago). This treatment comes at a time when I had lost hope. I'm doing well, AST and ALT already dropping. Few side effects (no worse certainly than my worst hep symptoms).

Glad to hear Gilead is giving this to you for free. How did that occur?
 

[earthwarrior54]

Atomic Dog:
In regards to receiving the Harvoni from Gilead, for free.
For anyone who is not aware, Gilead has created a "Support Path" (SP from  hereon) that helps those with HepC obtain their drugs, namely Harvoni when either they do not have insurance or their insurance provider will not pay for the treatment.  They also have discount coupons to reduce co-pays & a help line.   Their support path is located here: http://www.mysupportpath.com/
If you can get coverage via your insurance, there are discount coupons you can print out to reduce your copay.
If you do not have insurance or your insurance denies coverage you can sign up for help using the "Intake Form" located on the left side.  You can complete online, save and print.  Your doctor will need to fill out most of page one, you do the rest. (Note: You must got thru the Appeal process & get denied a 2nd time before applying)
You must have your 1st pre-authorization for Harvoni denied.  Then you or your doctor must appeal that. I can pretty much guarantee if they denied you once they will also deny the appeal so don't waste a ton of time doing a 6 page appeal just write a letter stating your case & attach a supporting letter from your doctor - if possible.  Your insurance may even have a form to use; mine didn't and my doctor didn't help at all. Although I did take time to do a thorough appeal it wasn't necessary. I only did it because I wanted my insurance, CDPHP of NY to know they weren't fooling me; I knew the AASLD Guidelines & I knew their reasons for denying me were crap.  I was just a pawn in the fight between "Big Pharm" & insurance companies. 
Anyway, they must respond, by law, within 30 days.
Once you get that 2nd denial you can send in that intake form.  You will need to attach some documentation (see form instructions) along with your initial Pre-Auth from your dr., your 1st denial & your 2nd denial.  Also include any supporting letters from your dr/drs. You don't need to attach your appeal letter, but you can.
To Qualify: As long as your income is below $100k (incl household) & you've been denied coverage, you should qualify for the program.  And if you have your ducks in a row, as I did & provide all the necessary info in an organized manner, you should get thru the approval process quickly.  I was approved within ONE week after they received my documents & intake form. (I was told that was a record!)
They will call to let you know you are approved or if they need further docs. Once approved, they fax a form to your Dr. - basically a script. Your Dr must complete that & fax back to Gilead's S.P..  Definitely keep on top of this: make sure your Dr. got it, make sure they fax it back right away & then make sure S.P received it.
When they get the script, SP will forward it to the pharmacy they use for your area. For me it is Covance.  I called to confirm SP rec'd my script & once the rep found it,  he actually called Covance with me on the phone & put in my first order of Harvoni.  You or someone over 18 must be home to sign for it & I had my first bottle in a less than a week. Since then I call Covance directly myself about a 9 days before I run out.  There has not been one issue or "bump".
Because I'm off work it was easy for me to fall  under the $100k (I don't make that much anyway even when I'm working). Since I fell under $100k I got it for free.  If you make over that but can't get Harvoni from your provider I'm not really sure how it works.  Possibly you have to pay something but I would venture a guess it is a reasonable amount.
Hope that helps.