Greg, Hey there. Glad for another passenger . the train is adding more cars in anticipation of all the new passengers. I can't be happier for you. We'll pick you up. It's been a smooth ride for me. I am hoping for all the rest it will also be easy.

get to the finish line 

Hugs Jen

Greg, I am also on the 24 week ride.

I have labs  (CBC, PLATELETS AND DIFF, CMP, TSH) in 2 weeks.

then 2 weeks later labs (CBC, PLATLETS, DIFF, HEP C, RNA BY PCR - QUAN, CMP, PT, AND TSH

MD  appointment for 1 month after start of meds..

that is protocol I have so far

Pl1952, your seat is waiting....

Ro

Finally!!! Wonderful to hear, Greg. About freakin' time. 

pl1952 wrote:

---

Great News Greg!!!  So happy for you -- I'll be boarding soon with you guys -- save me a seat! :)

---

You've definitely got a seat saved. Many here will be overjoyed to help you, and your husband board. He could probably use some R&R as well.   Curious, how is your husband doing?  Is he showing improvements in energy levels?  Other noticeable signs of improvement?    Thanks     

Great News Greg!!!  So happy for you -- I'll be boarding soon with you guys -- save me a seat! :)

I'm on the extended tour, 24 weeks.   Will be interesting to see frequency of labs the doctor orders.  A huge weight has been lifted.  I continue to pray for others not yet on board, that your tickets get punched.  This is one train that needs to be filled to the max.  I'll sit on the floor or the roof if it will help. 

I'm going to see if there might be some way to request a change in my position description that would allow me to help others going through maze and gauntlet of obtaining much needed Hep C meds.  Don't know if it will happen, but worth a try.  Even if not approved I can probably incorporate some of this in my job duties.  It is truly sad that people are given a light at the end of the tunnel only to be told.... remain in the dark.        We're missing you here Duane.  Hope you are well. 

Greg,

So very happy for you!!!.. We will pick you up on Wednesday, be at the station

How long will you be taking the meds?

Sending more positive thoughts out to everyone!

Ro

Hey Greg,

Thats wonderful news to start the day!!! I'm so happy to hear you've got the meds and are ready to begin the journey. Lets make it the last time!! SVR here you come! Good luck my friend...

Tig

Good news of the day     Finally got my ticket punched for the extended train ride. Meds came in yesterday.  Cautiously optimistic at this point.  Should start Wednesday after my appointment with the doc and pharmacist.  As Malcolm puts it,  SVR!      is just a ride away.  

I am on day 3 of harvoni, and have been taking it without food, when I first wake up..no problems so far....

165 to go.....

Angelsseven. If that was for me.

the Pharmacist said she thought it might be easier for me because I have a problem with nausea when taking other types of drugs. So far so good. I have to have breakfast anyways why not take my Harvoni first thing.

No other problems for me.

I'm So excited to be well.

Jen

darkstar, amazing results after 1 week of tx, that is so encouraging

geeze,  have heard take with or without food,  would like to know why he told  you to take with food??

thanks Matt <:)=

Hey Beacon

I really appreciate your visual illustration of the train station and the anxiety that can come from unrealized time tables. The best part of course is learning to cope through meditative breathing. Dr Andrew Weil has a great Audio book on Breathing called "Breathing , The Master Key to Self Healing" worth the download.

Also noticed your new Avatar, is perfect for your name and a great pic.

matt 

HCV             817,572              31

Darkstar,

That's pretty impressive because if you looked at this in terms of half-lifes, that would be a half-life of less than 12 hours. So after you took the first dose then 12 hours later your viral load was around 400,000. Then 12 hours later it was around 200,000, 12 hours later around 100,000 and so forth. Those are pretty steep drops.

Hi Matt,

Thanks for your encouragement. I need it for sure.

 the pharmacist said to take with food so i am taking with breakfast. Day 2 so far so good

I'm super stoked 

I think i'm not going to have and trouble at all. Positive thoughts always.

Hugs Jen

Jen, enjoy the view and the ride, yours is the short trip to new health.  I'm also looking for a window seat.  Just a matter of time.   

Hey Jen

Nice to have you on board the train, yea the window seats are the best.

Are you dosing in the AM or PM with food or not, just taking an informal poll.

Any side effects yet?

matt 

Hi Guys. I  am in for the 12 Week tour myself. I hope there is good scenery. I have a window seat.

Day 2 is great 

Jen

Lookin good darkstar, some incredible numbers.   Think it's your time.  I was assured by Accredo my meds would be delivered UPS next day air today. Guess I'm gonna have to move to Missouri.  Another disappointing day.  These people are the epitome of gall.   

Absorption is not affected by food, no other special strategy.  I take in the AM with BP meds.

Hey Shadow

Thanks for the reminder about Support Path, if it wasn't for that I would be hopeless.

Really almost just wish my Insurance rejects my appeal as fast a possible so I can deal with the Support Path people, they seems to be very accommodating.

matt

Hey Bob / Darkstar

That's some impression reductions on only one week of meds.

Have you set your mind on a particular strategy this time around?

I'm trying to figure out the best time to take it Am or PM with food or without, any thoughts?

matt

darkstar wrote:

---

One week of treatment and had labs checked today, results as follows:

                         Day 1              Today

AST                 109                   53

ALT                  105                  60

HCV             817,572              31

 

HOPE!!!

---

 I should say so too, Bob, excellent result after one week..congrats!  You`re well on your way! 

I had to go through an onerous process but eventually got the drug.  I feel a little better, but even though I relapsed after S/O I still felt pretty good.  Some possible but not definite side effects.  Insomnia and muscle aches.

Yes,

It was necessary for the appeal to be denied also. It would have been extremely quick if my ins company didn't take a month to deny the appeal. Support Path operates quickly If your insurance operates quickly. Anyone that wants to IM me for specific details, feel free. 

Darkstar,

I can't wait to see SVR from you buddy! Congrats on your progress. It looks good!

-Rob

DarkStar - isn't that awesome?  Do you feel any different?  Like better mental clarity, more energetic?  I know it's only a week but it could happen!!

Get rid of all those nasty little viruses; "die you gravy sucking pigs"........

Was it necessary to appeal and get denied or did you get it on just the denial of the pre-auth?

One week of treatment and had labs checked today, results as follows:

Shadow,

I have completed this route for S/O because my insurance wouldn't approve Sovaldi with any combo. And yes, it is exactly as you describe. Thanks for putting this out there. Gilead is providing a lot of free meds!  I was impressed with Support Path- they get things done. They are way more professional than United Health Care and have a simple process in place. No Express Scripts or Accredo fiasco!

Good luck everyone!

Just keep in mind everyone - Per Gilead's Support Path - If you get denied from your provider, appeal & get denied again; you can apply to get it from them. The form is very easy to complete online & you can print/ save it on your computer. There is one section your Dr needs to complete which is basically their info & script info for you. You send to Gilead & based on your household income you would receive assistance or get it for free. They told me that for a single person the income level is $75k per year. That's pretty high compared to what is normally used as a financial "means" test (around $51k?) so a lot of folks will meet it.  It will probably take, from start to finish - 2 months. In the meantime  you can get registered with Gilead so if your ins company does deny again all you need to do is send the completed form. Gilead has a team that reviews the info & they have to confirm it etc. But as long as the info is legit then Gilead will supply the drug at no charge to you & it comes directly from them.  Yes it takes time but at least you get the prize at the end. And there's a certain amount of personal satisfaction knowing that you are making it happen! 

Also, I asked Gilead: how long this program is going to run for- Is it just something they are doing along with the new release of Harvoni & at some point its going to end?  I was told no, it is ongoing. After all, that could be a lot of free Harvoni being handed out. Considering how much they need to charge  to recoup their costs how the heck can they afford to give it away for free? 

(all this info comes directly from Gilead - HOWEVER, it would be interesting to hear from anyone who has completed this route & just how smoothly it really went)

Tig56 wrote:

---

I don't feel using the photo of the Costa Concordia disaster to make light of our members that are feeling a bit distraught over their denials for treatment is appropriate. We are a global forum and have members from that geographical region that may be saddened by this example. Can this be avoided in the future? Thank you.

Tig

---

I wasn't even aware of where the photo was taken.  Just making an effort to lighten things up, but actually, I'm tired of trying.  

I'm with Duane.  Too much self-absorption here and too many looking for someone or something to be angry at.  Count me off this train.  

I don't feel using the photo of the Costa Concordia disaster to make light of our members that are feeling a bit distraught over their denials for treatment is appropriate. We are a global forum and have members from that geographical region that may be saddened by this example. Can this be avoided in the future? Thank you.

Tig

HARVONI FEVER CONSUMES AMERICA!!

CRUISE SHIP TAKING AMERICANS TO HARVONI SINKS!

Oh Man, some days it doesn't pay to get out of bed!  lol

I can picture a cruise ship full of us getting our generic Harvoni. 

Gilead Announces Generic Licensing Agreements to Increase Access to Hepatitis C Treatments in Developing Countries

http://investors.gilead.com/mobile.view?c=69964&v=203&d=1&id=1967772

NEW DELHI--(BUSINESS WIRE)--Sep. 15, 2014-- Gilead Sciences, Inc. (Nasdaq:GILD) today announced that the company has signed non-exclusive licensing agreements with seven India-based generic pharmaceutical manufacturers to expand access to its chronic hepatitis C medicines in developing countries. The agreements allow the companies Cadila Healthcare Ltd., Cipla Ltd., Hetero Labs Ltd., Mylan Laboratories Ltd., Ranbaxy Laboratories Ltd., Sequent Scientific Ltd. and Strides Arcolab Ltd. to manufacture sofosbuvir and the investigational single tablet regimen of ledipasvir/sofosbuvir for distribution in 91 developing countries. 

Gilead has wasted no time getting the licensing established and approved for generic development. Hopefully this will promote price reductions elsewhere as well. We can only hope!

Tig

(Sorry I put this here Matt, should've placed it in the HCV News!)

Groupergetter wrote:

---

This entire process caused me great mental anguish.  I know this must be true for so many others.

 

---

 This entire thread has caused me great mental anguish.  Seriously guys, waiting doesn't have to be this miserable!!   Snap out of it!!

https://www.youtube.com/watch?v=0x-fkSYDtUY

Hi Matt,

Relax buddy. Another month or two won't make any difference. Just be grateful that SVR is just around the corner.

Imagine if you lived in Australia! Cheers mate.

Matt believe me I understand and feel your frustrations.  I need to total up the hours I've spent on the phone with Express Scripts and Accredo.  I think it is around 25 hours in the past two weeks.  My wife thinks I've lost it.(just kidding) she knows how important this is.  Once I was on hold for 42 minutes only to be hung up on.  I wonder if the people on the other end of the phone have any conscience or compassion at all?  Their goal seems only obfuscation, and delay.  This entire process caused me great mental anguish.  I know this must be true for so many others.

Funny you should mention the conference.  My doc wanted me to bring the meds to my appointment this week which was rescheduled because the meds weren't delivered as promised. Now I may have the meds and have to wait for my doc to get back from the conference before starting them.  As hard as it is, if one meets the criteria, it seems persistence is the prerequisite for these pills     I hope I haven't been bs'd about the delivery.  If so, I will be contacting an attorney.

-- Edited by Groupergetter on Friday 7th of November 2014 07:12:50 AM

Hey Greg / Groupergetter

Good to hear about the final result, indeed I did not foresee how difficult it would be for most of us to get ticketed for the "Harvoni Train" I guess the price of the ticket being so high has a cause for concern among nearly every insurance carrier. The greed of Gilead and the insurance companies has made it very hard on the patients, doctors and all people and family members that surround their lives.

I find myself in a very bad mood nearly everyday that it is prolonged. I had my Doctors appointment on Oct 14 then it took two weeks to receive a denial after all the PA was filed. Then my Doctor says he requested a peer to peer phone meeting on the 29th and so nothing became of that. I called two different times in a weeks period after that to conference with the Doctor and he does not even bother to contact me. Finally I had to beg to talk to one of his nurses and she said he was given the wrong telephone number at the insurance company. I was hoping that I would not have to be squeaky wheel to get things done but thats what I exactly what I had to do.  

The nurse says he will try today (Tuesday Nov 4) because like I reminded her that he will likely be gone a week or longer to the AASLD meetings in Boston. Sure enough he leaves on Wed. and had no contact with insurance people and now have to wait another week or longer. Its likely he might help reverse the denial when he has the peer to peer meeting via phone but no guarantee. If that doesn't work out then the appeal has to be sent in and another week or so goes by. Wait, wait and wait some more, at this rate I'm be getting on the train in the middle of December and they will be carrying my liver in a portable cooler with dry ice to keep the inflammation down.  

So at this time its now a matter of keeping my composure more than anything else because if I dwell to long on it I just get ticked of, and that is not good for my liver or my health.

Hey thanks friends for letting me rant, I needed to tell someone and get this off my chest

matt 

Groupergetter, 

I had similar experience and now I'm on my 9th day of Harvoni, no side effects.  You will be on your way soon!!

Appears my ticket is about to be punched for the H-Train.  I've been dealing with Express Scripts and Accredo for the past 2 weeks.  I have documented every call, name, date, time, and hold times.  Doesn't lend much credibility to Express Scripts or Accredo, unless their goal is to prevent or delay you from obtaining this high dollar med.   Seems a different story line with nearly everyone I've spoken with.  "Hold please" the only common theme.  While those I've spoken to have been "pleasant" the hours I've spent on the phone have not been.  Through it all I've had to constantly remind myself to remain calm, patient, and respectful, (It has been VERY difficult) With my medical history, there should not have been any issue with the approval. 

I was told last Thursday (week ago) my prescription had been approved and was being expedited.  In the past week I've spoken to many different people.  The first person I spoke to at Accredo today, told me she could find no evidence of a prescription????  I almost lost it.  Then I gave her the prescription # and invoice # and politely gave the names, dates, and times, I had spoken to others at Accredo.  After holding 18 minutes I spoke to a "supervisor" and eventually told to call back.    Spoke to 4 different people at Accredo today.  This must be an endurance test.  The final call today, I was told the meds were being shipped.  I pray the ride and results will be better than the difficulty in obtaining the ticket.   I can identify and empathize with others seeking to board this train.  I hope and pray your path to a ticket is smoother than mine.  Perhaps in time the gauntlet will be reduced,  Yes, I remain Thankful.

Will do Matt.

it does get confusing bec you can go to various websites, even those that are up on governmental sites and they can have different versions of the guidelines as they do change . But AASLD is def not pleased with insurance companies using their words against them by cutting out the part about "priority " treatment & leaving out all the rest; then using that as a reason to deny access to Harvoni.  If one didn't know better you would think, as I did that AASLD said only people w/ end stage liver disease need to get treated. 

Will be interesting to see what happens next week! Keeping my fingers crossed ! I've had my bags packed (and this gal doesn't pack lightly!) - all I need is my ticket to board. 

BJ, 

You are right, I'm sure they will be discussing this at the meeting. This link says they are discussing it now & will update their guidance in early December. http://www.hcvguidelines.org/news/us-fda-approval-ledipasvirsofosbuvir

US FDA Approval of Ledipasvir/Sofosbuvir

Wasn't quite sure where to post this but it's just a quick FYI:

This upcoming week the AASLD is having their big "liver" meeting in Boston.  My Dr. is going and "rumor" has it they may be discussing revising their guidelines on treatment  - again. They have not been real happy w/ ins companies using their words against them to deny claims and there is a "possibility" they may add severe chronic fatigue to the list of symptoms requiring priority treatment. No guarantee but I can guarantee there will be a lot of discussion considering the current situation since the release of Harvoni.  So keep an eye out after the first of next week for any guideline changes that may help others get the drug faster and with less hassle. 

Hey Beacon

Nice to hear about your update, all things in time. Don't sweat the co-pay because Gilead will pickup the tab if you sign up with Support path from Gilead.

Keep us in the loop.

matt

Hey did anybody notice that the FDA just gave Johnson & Johnson approval to use sovaldi with olysio. I'm not sure what doctor would prescribe that combo over Harvoni considering the price especially for cirrhotics who would need 24 weeks of s/o. I feel like I'm on a long country drive to the Harvoni train station. Isis is right that everyone is on their own private journey towards treatment. As for me I feel like I'm on a long drive (it's really not that long) to the Haroni train ticket office. Unlike most of you here I will see an Infectious Disease doctor. This time last year I saw another ID doc in the same office, he retired since then and now I've been assigned to another doc and I have an appointment to see her Nov 24. I don't know what her take on treatment is going to be but I will stay the course and hope for the best. Harvoni is not yet on the Blueshield of California formulary(sovaldi and olysio were added) and they meet quarterly to see what gets added, next meeting is in December. So Harvoni (the big H) is at this time a non-formulary drug. It's possible for me to get approved for a non-formulary drug with a PA and it would just be a $50 co-pay instead of $10. So I will see what my new doc says and see how she wants to approach treatment. We'll see what happens.