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Author Topic: HAPPY TO HEAR  (Read 10175 times)

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Offline hoping4thebest

  • Member
  • Posts: 11
HAPPY TO HEAR
« on: November 22, 2014, 04:00:04 pm »
Hello good people, new to the forum and just wanted to say hello, and let everyone know it makes me extremely happy to hear all the success stories patients are having with these new medications. I also have chronic hep c with cirrhosis but was not approved for treatment by AETNA. Hoping and praying ( difficult at times)  ;D in the future there will be different drugs approved by the FDA the I can take.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: HAPPY TO HEAR
« Reply #1 on: November 22, 2014, 11:31:48 pm »
Hello Hoping,
Welcome to the forum. I am shocked to hear you were denied, esp since Aetna has been better than most. May I ask what the basis of denial was?
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline hoping4thebest

  • Member
  • Posts: 11
Re: HAPPY TO HEAR
« Reply #2 on: November 23, 2014, 03:00:55 pm »
Thank You for the welcome Lucinda
AETNA denied coverage for sovaldi and olysio stating olysio should not be given to decompensated individuals per AASLD guidelines. Which i can accept without question, the only problem i have is it just seems like the medical team that care for me gave up and did not even follow up with me after a second denial. I live in the state of new jersey and go to a center city Philadelphia hospital for care that in my opinion is not the best.  Just to let you know I have been on SSDI for well over 10 years and not on any federal or state health plan. I am covered under my wife's health insurance through her employer....

Thanks for your concern L
Steve

Offline Rubye

  • Member
  • Posts: 130
Re: HAPPY TO HEAR
« Reply #3 on: November 23, 2014, 09:06:43 pm »
I'm so sorry to hear this Steve. If you have the energy, you might want to see the doctor in person to see if he will write a letter for you. I also had a hard time getting Sovaldi and Olysio because I had to go to a clinic where most patients are low income. I am on week 8 and doing ok but it was a bit hard for me in the earlier weeks. I am on the line with decompensation but now have a healthy person's labs. The way I was able to get the Olysio was because I have neuropathy from the hep c and other problems due to cirrhosis. Your friend in this struggle. Rubye

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: HAPPY TO HEAR
« Reply #4 on: November 23, 2014, 10:39:03 pm »
Steve - Yes, S+O if you are decompensated is risky. I do know that docs are using Harvoni on their decompensated patients, although safety is not well-tested. Has that been suggested by your docs?
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: HAPPY TO HEAR
« Reply #5 on: November 24, 2014, 11:46:22 am »
Hi Steve,

I am in NJ as well and have a Infectious Disease doctor/practice who I have nothing but positives to say about. If you are interested in reaching out to them for a second opinion let me know via PM and I will share the contact information. No promises they can help but they have been awesome with me.

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline hoping4thebest

  • Member
  • Posts: 11
Re: HAPPY TO HEAR
« Reply #6 on: November 24, 2014, 05:12:30 pm »
I'm so sorry to hear this Steve. If you have the energy, you might want to see the doctor in person to see if he will write a letter for you. I also had a hard time getting Sovaldi and Olysio because I had to go to a clinic where most patients are low income. I am on week 8 and doing ok but it was a bit hard for me in the earlier weeks. I am on the line with decompensation but now have a healthy person's labs. The way I was able to get the Olysio was because I have neuropathy from the hep c and other problems due to cirrhosis. Your friend in this struggle. Rubye
God Bless you Rubye, very happy to hear you are doing well, the biggest problem that I was having is my doctors were all joining other practices that were far from where i live. So i decided to go to where my PCP was affiliated and what do you know 2 hepatologist that I had previously seen, practice there now. It's just there staff are not very good.  I hope you find some relief for your legs. I also have it and use the compression stockings and even the pumps to keep the swelling down for a little while anyway. hepatoligist said they will get better with a new liver, in the mean time my legs sometimes feel like there on fire. lol
Your Friend
Steve



Offline hoping4thebest

  • Member
  • Posts: 11
Re: HAPPY TO HEAR
« Reply #7 on: November 24, 2014, 05:17:27 pm »
Steve - Yes, S+O if you are decompensated is risky. I do know that docs are using Harvoni on their decompensated patients, although safety is not well-tested. Has that been suggested by your docs?
Never even got a call back from the after we left 5 messages, but did manage to set an appointment for early January will keep you guys in the loop.
Steve                                                                                                     

 


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