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Author Topic: VA treatment  (Read 4206 times)

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Offline bobt104

  • Newbie
  • Posts: 2
VA treatment
« on: August 29, 2015, 05:39:40 pm »
Hi All,
I'm Bob, I was diagnosed with Hep C about 15 years ago, however I believe I've had it since the early 70's. Never had any treatments, as they seemed more debilitating than the virus. Two yeras ago I was told to hold out for the new drugs that are out now which I did.
 
I'd gotten all my sonograms and blood work and told I would begin in the fall. I was then told that there was no more money from the government until whenever..they've got this new program called Veterans Choice Program where they would assign me a civilian doctor near my home town, and now  i'm waiting to be called..

 I was told I'm 1a, 1.450.0000 viral count,and Fibrosure score of F3F4, Fib4 calculated score of 2.01. The VA does not use Harvoni because of the expense. so they recommend ombitasvir/parataprevir/ritonavair 2 tablets each morning and dasabuvir 1 tab twice daily plus ribavirin 1000mg a day x12 wks.

I was told that one of the side effects is anemia, and it's plain to see in my report that i'm anemic..this seems absurd so I'm thinking about telling them I want the Harvoni or nothing.

Any suggestions appreciated

Bobt


 


Offline yag1064

  • Member
  • Posts: 58
  • Enjoy the life you have.
Re: VA treatment
« Reply #1 on: August 30, 2015, 01:05:14 am »
Hi Bob,
    I can relate to what you are saying. However be sure of what you do. The nothing alternative may have consequences that are more severe than the anemia. Be wise and consider ways you can minimize those side effects.
   Have you reached out to Gilead, the company that makes Harvoni? They have a program that can help you get the medication at little or no cost. I believe it is called "The Path" or something like that. There are real people who you can talk with that are knowledgeable and will work with you in many ways. I know because they helped me when I was denied treatment by my insurance.
   If you can, get a Gastroenterologist or a Doctor who is familiar with Hep C. The system you are in is overwhelmed by patients with the disease. The system is broke for many reasons. You may be better served by a private physician. I know because of what I am facing with a University.
    I have gone through two treatment regiments and both failed to rid me of the virus. The first in 2007 I was given Interferion and Ribavirian. After 16 weeks of giving myself a shot which had really harsh side effects, I was told I was a non responder and was taken off the medicine. They said that was all they could do and said goodbye. I Lived with that until 2014 when Solvadi became the wonder cure. My Gastro put together all the necessary paperwork to summit to my insurance company. I was denied treatment. The 12 week treatment of Solvaldi cost $84,000. That is $1000.00 per pill. Not counting the cost of the other medicine. I won my appeal and started the 12 week program. After 2 weeks the virus was undetectable. I remained that way through the rest of the treatment. It was still undetectable 3 months after treatment ended. I thought I was past it. I really started to feel confident that I was cured. Then I was told it returned when I had my 6 month check. My world came crashing down. My Doctor told me he was referring me to one of the top leaders in the field. My Doctor consulted with him for advice. I thought this was good. Little did I know about the problems I would have. Starting with the earliest appoint was in 6 month. I finally saw his assistant  not the Doctor. She said that I was a candidate for Harvoni and they would put together the necessary paperwork to summit to the Insurance company. She said the medicine was more expensive then Solvaldi, about $1300.00 per pill. Not to worry I should be approved because I too am F3/F4. Well time went on and I didn't hear anything. I call my insurance to ask if there were any request for treatment. They said no. So I called the medical clinic and got an answering machine. Finally a nurse call me and thanked me for calling because there are so many patient sometimes thing fall through the cracks.  I finally received a letter from my insurance, another denial for treatment. When I called them back they told me that the Doctor didn't give them the necessary information to make my treatment possible. It has been a constant battle between me and the Doctor to have them give the insurance company the necessary justification information, not to mention they are only available once a week. So that is where I am.
   The VA is overwhelmed too. So take an active role in your treatment. Try not to get frustrated and do anything rash. Think it through the best you can. Action by impulse may be hazardous to your health. Check the results of any blood work that is done. See where your viral load is and the direction it is going. Eliminate as much stress as you can.
   You are with a good group of caring people that will help as much as they can. This is one of the best groups I have ever seen. Good luck on your journey. Stay positive.
   Rick
   
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

Offline bobt104

  • Newbie
  • Posts: 2
Re: VA treatment
« Reply #2 on: August 30, 2015, 10:28:33 am »
Wow Rick
   I certainly shouldn't complain..You've been thru the mill, and I'm sorry for that, yet I'm not. You'll not fail with your great attitude, as I know THAT WILL carry you thru.The battle is 90% our positiveness and 10% the physical.

As for me, it may seem that I'm being impulsive but I'm so confident in God/Life's care for me that it matters not which way I finally decide to go, as I know that it'll work out for the good one way or another. So I listen for God/Mind's direction in all things..cause it's either here or hereafter that I'll find my way, and eternity gives us a long time to work it out.

 You see Rick I must stand on Principle, I'm not gonna allow the otherness of organizations and false standards to deprive me of my God given dominion.. I'm a former Marine and 100% disabled from my time in Vietnam, so I don't have to pay for any medical services.. So you see I will refuse the ribavirin, as it's side effects include not only anemia but also depression, which I cannot afford to go thru again…as I was diagnosed with severe depression due to PTSD. So again you see I've already survived 100 deaths and the 101st hath no power over me..

Peace my brother hang in there nothing can or will stop you.
Bob

Offline yag1064

  • Member
  • Posts: 58
  • Enjoy the life you have.
Re: VA treatment
« Reply #3 on: August 30, 2015, 11:53:25 am »
You and I are on different paths, but spirituality is the common thread. Be well in all your endeavors. This life is just a brief period for us on the journey which lies ahead. Take notice of what is important and be compassionate and kind to all.

  Your faith will make you strong.
 
   Be well in body and mind,
       Rick
Tested positive 2007
Non respond-er to treatment 16wk of 48wk
Started I/R/Sol May 2014
Hep C returned as of Jan 2015
Started Harvoni Sep 16, 2015
1st Test V/L:20
2nd Test V/L: undetectable
Dec 2015 EOT V/L undetectable
12 wk SVR :undetectable  Mar 25,2016
24 wk SVR: undetectable  Jun 24,2016
52 wk SVR undetectable   Dec 16,2016   -- I,m past it!!!
Shambhala

 


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