Turned Down By Blue Shield for Sovaldi

[Leagh88]

Hello all. I have posted a couple of times. Still a newbie. I appreciate the forum. My doctor sent a packet of information off to Blue Shield, requesting treatment for my HCV genotype 2. The pharmacy called me today to say I was turned down. I am unsure how to proceed. Do I try Support path myself? Or do I let my doctor initiate.
    I have the most easily curable type. A viral load of 14,000. I do not have ascites, and my portal vein has flow in the right direction. Hepatopetal, I think they said. My ultrasound shows a smooth liver. Of the AST, ALT, one is almost normal, the other bit over twice the normal. My Fibrotest came back at .85, or F4. I then paid to have a Fibroscan done. It came back at 10.7 KPa, or F3. I used to like to drink wine at nights. I will never drink again, I have 44 days sober today. I quit smoking one year, eight months ago. I do not touch drugs.
     So I think I have had this HCV for 35-40 years. I have one 28 day supply of Sovaldi, and a two month supply of Ribavirin. I bought these from a dear friend who is in need of a transplant, and could not tolerate the meds.
       I would love some advice on what to do next. Maybe some of you have been in my position.Do I contact Gilead, or have my doctor contact them. I am a truck driver, and make $22k per year. I thank you in advance for any advice here. Thank you. Leagh

[Idyllic]

I used Acaria and they will really advocate on your behalf with the insurance company and act as a liaison with your doctors. Like anything you have to stay on top of things constantly.

[jules2551]

Don't worry you won't have to pay for anything.  Just try and remain calm and I assure you will get it by January.

Jules

[Leagh88]

You folks are so helpful. Great information. I would never risk taking the meds I have, w/o a doctors' supervision. I was called today by Acaria Pharmacy. They seem to have taken over as being my advocate. The nice lady said they are filing again on my behalf , for meds. 12 weeks Sovaldi and Ribavirin.
     She said if I was rejected they would then file an appeal on my behalf. She wanted my street address to send the meds by courier. If that does not work, then they will file through Gilead for financial help.
        Yesterday morning, I called Gilead, and explained my situation. The nice man there took my name and information and gave me a case #. He said that I should call back and talk with a case worker, giving that number.
      I downloaded a 25% off coupon, but I would need a little more help than that. Would I max out my $10k credit card? Yes, if that made the difference. I feel like the ball has just started rolling, and I won't give up. I do hope it all will work for me. I have both fingers crossed.
    Since I stopped drinking any alcohol, and quit smoking, I have good energy levels. I work all day 6 days a week, and ride my bicycle ten miles at a stretch w/o fatigue, after work some days. I am mostly vegetarian, and eat beans, rice and fruit daily. Cold lime water too. If anyone ever needed to see a reason for not drinking, watching the BBC youtube video on what alcohol does to the liver worked for me!  Best to you all, Leagh

[JimmyMose]

"The 8 week regimen is a possibility that they are trying now."    

http://hcvguidelines.org/full-report/initial-treatment-hcv-infection
accessed September 10, 2015

This is mentioned for GT1 only with (Harvoni) ledipasvir  (90 mg)/sofosbuvir (400 mg) for 12 weeks is recommended for treatment-naive patients with out cirrhosis
with caution
This analysis was not controlled and thus substantially limits the generalizability of this approach to clinical practice. Shortening treatment to less than 12 weeks for patients without cirrhosis should be done with caution and performed at the discretion of the practitioner.

as others have mentioned.
For GT2 12 weeks is the minimum treatment length for Sovaldi with RBV or daclatasvir  
Extending treatment to 16 weeks is recommended in patients with cirrhosis.

Note: EASL (The European Association for the Study of the Liver )
GT2 12 weeks is the minimum treatment length for Sovaldi with RBV
Therapy should be prolonged to 16 or 20 weeks in
patients with cirrhosis, especially if they are treatment experienced

http://www.easl.eu/medias/cpg/HEPC-2015/Full-report.pdf
accessed September 10, 2015

My personal non medical opinion.
DO NOT take Sovaldi ONLY and not LESS than 12 weeks with  RBV

Fortunately when I took SOV/RBV for 12 weeks April to June 2014 I achieved SVR GT2 with cirrhosis.  I had questioned this before treatment start but accepted doctor saying 12 weeks was enough. Still had in my guess about 80% chance.  Viral Load 800,000 probably helped and liked the fact didn't have to take RBV longer.
This was within a few months after FDA approval and the recommendations have since changed.  

If anyone is interested in reading my lengthy Journals pre- txt-post with labs scans etc click my name link to profile page and journals lower left side.

Best wishes for getting the correct treatment and SVR

[mac790]

Agreed- a hepatologist, esp. @ a major teaching hospital, would be best. He would give you info on any clinical trials they have ongoing there as well. IBC initially wanted $5K per 3 months for a med I'm on, the paperwork was handled by my MD. If you get a patient proactive MD support staff, you are lucky. My MD's staff did the bare minimum, and I was looking at a $5K bill every 3 months for 2 years. I took it upon myself to contact the manufacturer. My income was so far below the maximum they told me during the first phone call I would get the drug free for the entire 2 years. I filled out the paperwork, and now have the meds @ no charge. Sometimes, you have to be your own advocate. I agree with all of the responders, don't take meds w/o supervision. It isn't enough to eradicate your HCV anyway. Go with a big gun Hepatologist, see if their staff can do  better, if not, do it yourself.         Good Luck,  mac

[jules2551]

If you make less than $100,000 Support Path will give you the drugs for free but as of July 1, 2015 they stopped giving free Harvoni out.  Since you will be on Solvaldi and Riba I do not know if they stopped issuing those drugs for free.  So you may have to wait until the first of next year in order to get them.  Which is 4 months away and it will probably take the process that long anyway.  In the meantime you really need to find a qualified Hepatologist as Pooh said.

jules

[susan400]

At that amount of pay, at 22K you should qualify for full coverage with no co-pay at Gilead I think.  My husband made more than that  and he was the only income for household, as far as employment, I get $12K a year SSD and his was about 30K at that time, I was covered completely for the Sovaldi 12 Wks + (Peg and Riba), no copay at all. Support Path worked on my husband's insurance company and got them to agree to pick up part of the cost, after they initially denied me.  I have a different geno than you, 1A, but still.., don't think that should be the issue with coverage or not.  I think that they(Support Path) will probably work it all out for you, but it will probably take a few weeks, at least it did with me.  Susan400

[Leagh88]

Thank you all for that helpful info. I emailed my Dr yesterday. No reply yet. She is an infectious disease specialist, and helped my friend get his meds. She is aware of Support path, and said that if turned down by insurance, (as she thought may happen), we would go with support path. I called Gilead yesterday, and got a case # so I can talk with a case worker next.
      The 8 week regimen is a possibility that they are trying now. I would only need one month supply then. I make $22k a year. Maybe the company would have a program for me, or I could be a test subject for 8 weeks as my viral level is low. I will keep on it. Again, thank you all.

[hrsepwrguy]

"One month of Sovaldi is not aenough to try.  8 weeks seems to be the very minimum that has success"

"You have 2 months worth of riba and a month supply of solvadi. All you need is another month of solvadi"
------------------------------------------------------------------------------------------------------------
Sovaldi does not have any 8 week regimens at all, ``12 weeks is  recommended for geno 2

Sovaldi dosing information

Usual Adult Dose for Chronic Hepatitis C:

400 mg orally once a day

Recommended Regimens:
-Genotype 1 or 4 chronic hepatitis C (CHC): Sovaldi, peginterferon alfa, and ribavirin
-Genotype 2 CHC: Sovaldi and ribavirin
-Genotype 3 CHC: Sovaldi and ribavirin
-Hepatocellular carcinoma awaiting liver transplantation: Sovaldi and ribavirin

Duration of Therapy:
-Genotype 1 or 4 CHC: 12 weeks
-Genotype 2 CHC: 12 weeks
-Genotype 3 CHC: 24 weeks
-Hepatocellular carcinoma awaiting liver transplantation: Up to 48 weeks or until time of liver transplantation (whichever occurs first)

Comments:
-Sofosbuvir should be used in combination with ribavirin or with pegylated interferon and ribavirin.
-Efficacy was established in patients with HCV genotype 1, 2, 3, or 4 infection, including patients with hepatocellular carcinoma meeting Milan criteria (awaiting liver transplantation) and HCV/HIV-1 coinfected patients.
-Sovaldi and ribavirin therapy for 24 weeks can be considered for patients with genotype 1 CHC who cannot use an interferon-based regimen; treatment decision should be guided by benefits/risks assessment for the individual patient.
-Sovaldi and ribavirin therapy is recommended for patients with hepatocellular carcinoma awaiting liver transplantation to prevent posttransplant HCV reinfection.

Approved indication: As a part of a combination antiviral treatment regimen, for the treatment of chronic hepatitis C infection

http://www.drugs.com/sovaldi.html

[keepingOnkeepingOn]

Oh and congrats on not drinking. Keep up the good work.

[keepingOnkeepingOn]

Sorry to say they are only paying for the sickest patients still. You could appeal but keep that in mind to manage your expectations. Some have gotten the treatment who have little to no damage from the virus so it's not impossible as it is improbable. Keep up with the news about the new meds coming out from now on. At some point soon all will get treated no matter the damage especially since the costs are expected to decrease over time.

You have 2 months worth of riba and a month supply of solvadi. All you need is another month of solvadi if you dare ask your Gastroenterologist their opinion but it would seem you could clear in 8 weeks just looking at your numbers and if you are treatment naiive. It's not advisable to take those meds without a prescription but you'll do what you will. You need a doc to monitor the riba symptoms.

[hrsepwrguy]

!2 weeks is the minimum treatment duration for sovaldi and riba for geotype 2

[jules2551]

You need to have your Dr. appeal your denial.  If they deny you again ask your Dr to get in touch with Gilead's Support Path.  But you need to be in constant contact with your Dr, once a week, and see how the process is going.  I went through this also and if I didn't keep on my Dr I probably wouldn't have the meds now.  It took me six months before I received the drugs.  It wasn't easy but I got them.  So good luck and wishing you the best.

jules

[patra_]

what Sue said!  also, One month of Sovaldi is not aenough to try.  8 weeks seems to be the very minimum that has success.  File an appeal to your insurance company.  In order to follow up and get meds from the company, they will require you to appeal at least once.  It is my understanding that if you contact Gilead's My Path, they will help you through filing the Appeal, giving you forms, telling you what to send, etc, so it wouldn't hurt to go ahead and contact them now.

Good luck with this whole process.  

Blessings,

Pat

[sue4hula]

Please do not take any of the meds without your doctors OK!
Are you seeing a Hepatologist?  If the doctor and office is used to dealing with Gilead, they will know the appeal process and direct you on the best path to proceed.  

Wishing you the best and I hope things get straightened out soon.  The insurance part can be so stressful!