Bad/Good News Today

[Kat83]

Bad news: Just confirmed Hep C positive as a genotype 1a.


Good news: I have no fibrosis (.07 was reading - but not entirely sure what that means - it seems F1 starts at .21) and my viral load is below 500k (reading is 153,498).  In addition, I've been diagnosed when a cure is possible, which is amazing. 

Doctor will try for Harvoni and an 8 week treatment, but he is concerned that I may be turned down because I have no fibrosis.  Has anyone else been in a similar situation?  It seems ludicrous that a company would wait to treat when the damage is more severe and the treatment possibly longer.   

Additionally, I would like to thank everyone who has shared their experiences with treatment, insurance, and just generally dealing with Hep C.  It's helped me ask the proper questions and go to my appointments informed. 

[lporterrn]

Good news: You have genotype 1 which is now one of the easiest to treat. It means no ribavirin.

Moe good news - Your viral load is low and you will only need 8 weeks of treatment

[Kat83]

The first thing I did when I heard that I may be positive was read everything I could, including your second book.  I'm thankful treatments have changed, but it did give me an amazing amount of information.  Thank you.

Now, a question.  Should I ask if 6 weeks over 8 weeks is an option?  I've never been treated before because I just found out, but I've likely had this for quite a long time.  I was either born with this or I got it from my mother when I changed her chest tubes roughly 20 years ago.  Does length of infection matter?

[lporterrn]

I goofed - my hand slipped on 6 - it should have been 8 - I corrected that so I don't have more bad info out there. So sorry.

[BubbaT]

Hi kat, the. Good news is you have little damage compared to others, so be encouraged about your success , Keep fighting for your right to be treated regardless of how many delays you have to appeal thru!

Also your diet is extremely important, study to eat well and you can help yourself along the way.

We are warriors against a common enemy,  I'm f4, I just got approved, never treated,
Should start harvoni this week, I'm ready, I have been fighting this devil for 20 yrs!

So keep the course!  You win!

[motor]

Amen to BubbaT's remarks.  You've got to be your own advocate.  Plus, be sure that your treatment team is hands on.  Dragonslayer was given 8wks Harvoni with no checkups or interval testing and end of treatment test was not UND.
   The first plan for me was Sovaldi and interferon last summer.  NUTS!! From my research I knew Harvoni was coming in October.
   I got into VA system and tested Fibroscan 0-1.  Come back in 3mos.  I go in expecting more bloodwork and Fibroscan and got nothing except to be told they only treat stage 2 or worse.  Come back in a year!  UNACCEPTABLE.
   After not taking my calls or returning my message, 12/29/14 I go to that clinic without appt and sit until I can tell a nurse I've made an appt at Duke Med and I'm not waiting a year.  BAM! I get bloodwork, I get Fibroscan, I get scheduled for 12wks Harvoni starting 3/3/15.
  I couldn't believe it.  Further affirmation that "the squeaking wheel gets the grease". 

[Kim]

Your doctor is the best one to help you and if not, contact Gilead, the manufacturer of Harvoni, for assistance in dealing with your insurance company.
Good luck!

[BubbaT]

Motor, are you being treated thru the VA or others?

I'm a veteran and haven't been to them, I'm using employer provide insurance.
Did you say that you made an apt with duke? 

I like your fire motor...  How is rx going?

[motor]

@ BubbaT, I am being treated thru the VA.  Are you in their system?  I strongly advise applying if not.  It's not the VA of our youth.  A lot of the care is better than the what's available to most.  Plus, you can't have too many options.  See  the Gold Standard thread in the Considering Treatment Forum.
   I cancelled the Duke appt when the VA scheduled my treatment.  The treatment's been a non-event, no side effects.  I'm anxiously awaiting my 4wk appt 4/1 with my GI doctor and the bloodwork results that I'll get online by the 6wk nurse phone call. 
   I hope it's getting better for you.

[moma]

Doctor will try for Harvoni and an 8 week treatment, but he is concerned that I may be turned down because I have no fibrosis.  Has anyone else been in a similar situation?  It seems ludicrous that a company would wait to treat when the damage is more severe and the treatment possibly longer.   

I don't have fibrosis and was ok'd for treatment. First time around I was rejected, then wrote a letter and was accepted within a week. Yes your right, it is nuts that a company would actually end up spending more money in the long run waiting for a person to get worse before treatment.
Keep pushing on- MoMa

[BubbaT]

@ BubbaT, I am being treated thru the VA.  Are you in their system?  I strongly advise applying if not.  It's not the VA of our youth.  A lot of the care is better than the what's available to most.  Plus, you can't have too many options.  See  the Gold Standard thread in the Considering Treatment Forum.
   I cancelled the Duke appt when the VA scheduled my treatment.  The treatment's been a non-event, no side effects.  I'm anxiously awaiting my 4wk appt 4/1 with my GI doctor and the bloodwork results that I'll get online by the 6wk nurse phone call. 
   I hope it's getting better for you.

Thanks motor, I'm gonna look into it, I'm not happy with the Gi I have now, he is part of a group of 10 and it's like a McDonald's in there, I have had problems with meds and hearing back from the nurse and I'm waiting on a refill now and wondering why they can't give you all the 12 weeks meds at one time?

The pharmacy has faxed the refill 2-3 times and the dr has not  responded , he travels between clinics and must have hundreds of patients. Every time I see them they want me to have another colonoscopy ?
Sheesh, can you say meat market?   dang son, get me outta here!

Next Tuesday I start week 4.  Doing better each day on the treatment. Need a refill on the meds.
I'm glad you got some help from the VA,

[Lynn K]

Hi Motor

I am 8 years active Army I thought you had to have a service disability or be unable to afford insurance or maybe serve in a conflict to qualify for VA medical.

No service injuries, medical through my job and was a cold warrior 1976 to 1988 and 1984 to 1988 all in West Germany. Would I be ellgible?

[Lynn K]

Ok I just found the VA web site and answered some questions they said I don't qualify income too high but did encourage me to apply anyway incase rules or my situation change in the future I would at least have an app in the system

[motor]

Hey Lynn, I always thought same as you that you had to have war injuries, but the requirements are ever changing and it's good to have your application in the system.  It seems there's an ebb and flow to the numbers the VA takes in.
   

[Lynn K]

Hi motor

As I said I did a questionnaire at the VA web site I don't qualify due to my income too high. I guess I don't need VA insurance at this time since I have good insurance through my job. When I thought I was not going to be approved by my insurance I did not qualify for Giliead Support Path either due to too much household income.

Thankfully my insurance finally approved the meds or I would be SOL I guess