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Hep C Discussion Forum -> On Treatment -> Doctor's appointment coming up
Post Info TOPIC: Doctor's appointment coming up
Isiscat2011


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RE: Doctor's appointment coming up
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Thank you for reminding us of what is happening in the UK, dragonfly.  It will get better here too and we should consider ourselves extremely fortunate in comparison to many parts of the world.  Americans can be exceptionally impatient and pushy.  Harvoni was only FDA approved ~ 6 weeks ago.  It will take some time to get everyone treated but it will get done.  

I am so glad you were able to receive tx and hope you are doing well. 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
dragonfly


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Trying not to upset you in any way - there are only 300 in the UK who have been provided with this treatment: we are in the UK by no means a pioneer in this research  - Gilead has teased us for years with it's cure and have now only sanctioned it because of partial funding. It will get better - as far as I can see here my consultant is totally committed to getting as many people on this programme; we are way behind the states because we don't have med insurance-please do not give up hope and become bitter  



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Isiscat2011


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dragonfly wrote:

I don't want to sound pretentious but please if this opportunity is offered to you take it.  I now have decomponsated liver disease.  I went undiagnosed for 30 years but when this baby bites it does what any virus does and attacks its host.  It is horrid and makes you not yourself there is a place you get to when all the sides wear off and it is so worth it.

I agree completely but, unfortunately, at the present time in the USA not everyone can be treated at once.  As in the UK the medical profession has established guidelines for treating the sickest first.  Naturally, many people reject serving the sickest first, because they want tx now.  Contrary to popular belief the USA does not have unlimited resources and it will take time to treat everyone. 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Tig


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Thanks for your insightful post Nirmalee. You make a very valid point and it enforces the thought that treatment shouldn't be based entirely on the fibrosis stage, but on the fact that you are positive for the virus, period. My hope is that supply meets demand and demand means immediate and affordable treatment when desired. Not when allowed.

I hope you feel better, I know you've had quite a journey down "that" road. Be well friend!

Tig



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Tig

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dragonfly


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I don't want to sound pretentious but please if this opportunity is offered to you take it.  I now have decomponsated liver disease.  I went undiagnosed for 30 years but when this baby bites it does what any virus does and attacks its host.  It is horrid and makes you not yourself there is a place you get to when all the sides wear off and it is so worth it.



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Isiscat2011


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Harvoninme wrote:

You deserve this cure as quickly as possible. We all do. There are many valid reasons for waiting but this is the sad truth: Your stepping back today does not guarantee someone more "deserving" will have access any sooner. 

 

 Harvoninme:

With all due respect, must you turn every thread into a soapbox for asserting your views on ranking who is deserving?  Medical professionals have established criteria for who is in most medically urgent need of treatment. Can we not leave it at that?  

And, yes, creating a bottleneck by overloading a delivery system necessarily creates delays in treatment for those in urgent need as well as for others later.  That is simply a fact. 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Harvoninme


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zahr: Never underestimate the tactics your INS co may use to delay and defer your treatment. You deserve this cure as quickly as possible. We all do. There are many valid reasons for waiting but this is the sad truth: Your stepping back today does not guarantee someone more "deserving" will have access any sooner. That is the horrible reality of our messed-up system. Lord knows I want it changed.

Best of luck & godspeed.

 



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Isiscat2011


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Harvoninme wrote:

NASH has a much higher rate of cirrhosis than HCV and elevates your need to a higher priority level.

It does NOT elevate your need to a higher priority level.  Considered along with other coexisting conditions, however, NASH can play a role in your doctor's determination and potentially your payer's as well.  Here are the AASLD ratings and tables:

Recommendations for when and in whom to initiate treatment

Treatment is recommended for patients with chronic HCV infection.

Rating: Class I, Level A

Immediate treatment is assigned the highest priority for those patients with advanced fibrosis (Metavir F3), those with compensated cirrhosis (Metavir F4), liver transplant recipients, and patients with severe extrahepatic hepatitis C (Table 1).

Based on available resources, immediate treatment should be prioritized as necessary so that patients at high risk for liver-related complications and severe extrahepatic hepatitis C complications are given high priority (Table 1).

Ratings: See tables

The most immediate and high-impact benefits of SVR will be realized by populations that are at the highest risk for liver-related complications due to progressive liver disease (Metavir F3 or F4) and transplant recipients or those with clinically severe extrahepatic manifestations (Table 1).

Other populations at high risk for liver disease progression (Metavir F2) or with substantial extrahepatic manifestations (Table 1) are also expected to garner appreciable benefits, although the time course for realizing these benefits may be more protracted.

SVR will also remove the risk of further transmission. Treatment of individuals at high risk to transmit HCV to others (Table 2) may yield long-term future benefits from decreased transmission and a potential decrease in HCV disease prevalence.

When and in Whom to Initiate HCV Therapy Table 1. Settings of Liver-Related Complications and Extrahepatic Disease in Which HCV Treatment is Most Likely to Provide the Most Immediate and Impactful Benefits

Highest Priority for Treatment Owing to Highest Risk for Severe Complications

Advanced fibrosis (Metavir F3) or compensated cirrhosis (Metavir F4)

Rating: Class I, Level A

Organ transplant

Rating: Class I, Level B

Type 2 or 3 essential mixed cryoglobulinemia with end-organ manifestations (eg, vasculitis)

Rating: Class I, Level B

Proteinuria, nephrotic syndrome, or membranoproliferative glomerulonephritis

Rating: Class IIa, Level B

High Priority for Treatment Owing to High Risk for Complications

Fibrosis (Metavir F2)

Rating: Class I, level B

HIV-1 coinfection

Rating: Class I, Level B

Hepatitis B virus (HBV) coinfection

Rating: Class IIa, Level C

Other coexistent liver disease (eg, [NASH])

Rating: Class IIa, Level C

Debilitating fatigue

Rating: Class IIa, Level B

Type 2 Diabetes mellitus (insulin resistant)

Rating: Class IIa, Level B

Porphyria cutanea tarda

Rating: Class IIb, Level C

Ratings refer to the strength and level of evidence with regard to benefits of treatment in these settings.

 

http://www.hcvguidelines.org/full-report/when-and-whom-initiate-hcv-therapy



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Isiscat2011


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Harvoninme wrote:

This is life and death. 

Hi zavr:

Nothing you have written leads to the conclusion that you are in a "life or death" situation.  HCV is potentially a life or death situation for those who have advanced liver disease which typically takes decades to develop.  You will find that there is as much hysteria over HCV as there is factual information so please take the time to educate yourself with reliable information.  

Given your age alone it is extremely unlikely that you are cirrhotic.  Your doctor will probably want to do a liver assessment to determine what, if any, liver damage you have.  In the event you are not eligible for all oral medications you may wish to postpone treatment until it becomes available.  Your doctor will be able to determine your actual risks and whether or not you can safely delay tx.  Best wishes.

 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
LC


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smile



-- Edited by LC on Monday 1st of December 2014 03:41:55 PM

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Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 
Harvoninme


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zavr wrote "Getting ready to start treatment w/ Sovaldi, Riba, peg-INF."



It never hurts to ask. Are you already approved for the triple TX? If so, I would ask the DR for a switch to Harvoni because it has less side effects than the triple, and may even be cheaper than triple Tx. Getting the prescription is easy, getting insurance to pay for it is far more difficult. If you get the prescription, Gilead may be able to help you pay for it. www.gilead.com/

Accept that your insurance company will try to delay and discourage you. Be prepared. Be persistent. Appeal, appeal and appeal again.

You and your DR are the best judges of when you should begin treatment. Some things to consider are will you be in a position to afford treatment in 1-3 years? When is your best chance of a cure- will your treatment have as a good of a success rate 1-3 years from now? Do you have fatty liver? 25% of Americans do, according to statistics. NASH has a much higher rate of cirrhosis than HCV and may elevate your need to a higher priority level. [it did in my case]

A last ditch strategy to pay for meds is to open a cyber-panhandling account, explain your situation, and hope some very generous folks donate toward your prescription. This is life and death. I've seen people ask for vacations and get them. Ask the universe for help.

Above all, never, never give up hope. Best of luck to you! Please check in and let us know how you are doing.

Bold = Edited - modified for your viewing pleasure.



-- Edited by Harvoninme on Monday 1st of December 2014 05:29:17 PM

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LC


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If you can't get Harvoni, try to hold out for another all oral treatment if you can. (I'm read your signature about the peg Interferon)

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Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 
Matt Chris


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Hey Zavr

Welcome to your quest for Harvoni, I highly doubt you can say anything other than you have extreme pain. Really your labs and biopsy and overall liver condition with tell the tale.

matt

 



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
zavr


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Hi all,

I'm finally nearing the date of my gastroenterology appointment - at the end of this week (the doctor was booked solid even before Harvoni was approved). I am really excited to ask for Harvoni, but I am worried that I will be denied, because I am not sick enough.

I guess there is not much use in worrying prior to trying, but I just wanted to share. :) Has anyone else run into these feelings?

Also, has anyone figured out the "magical" words to say at the doctor's appointment, to make the insurance company more willing to pay for treatment?

-zavr



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Gen 1b, 33yo. Started 12wk Viekira Pak on 2/28/2015. 

Baseline: VL=517K, AST=34, ALT=56. 

Wk4: VL=<15, AST=16, ALT=14.

Wk8: VL=UND, AST=17, ALT=14.

Wk12: VL=UND, Fibroscan: 3.4kPa, F0.

--->Viekira Pak financial and nurse support<---
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