Hep C Discussion Forum

P.S.  Gilead will probably pick up that co-pay if your household income is <100K.  There is no reason your PCP should make you wait till Jan. to see a specialist.  He wants to see the real world results?  He won't even be the treating physician.  

Isis that is what he told me back in May. He said he doesn't want to be too quick to send me to the specialist for treatment (I can't see the specialist without a referral from the PCP, HMO rules) because he wants to make sure there are no problems with the new drugs. He tries to be up a little bit on HCV and since he first discovered I had it seems he trying to play a role in my treatment.

Interferon and Riba costs ~ 7-8K for a 12 week course.  Add the Sovaldi (84K) and the total would be around 92K.  Close to what a 12 week course of Harvoni would cost.   

IMO, no competent doc would prescribe the Interferon combo for a gt1a, cirrhotic, 63 year old when Harvoni is available.  Getting insurance to pay should be doable for most cirrhotics if the doc's office is willing to do the work.  

Isis,

Thanks for that info. The two prices are definitely within striking distance of each other. Much too close for this to be an issue. My specialist is an Infectious Disease doc (doesn't seem to any HMO hepatologists in Los Angeles). I've only seen him one time and he seems a little quirky but he was willing to listen to my opinions. He had me take a Fibrosure test at Labcorp which labeled me as a cirrhotic. I know this is not considered a very reliable test but with hcv in my liver for 40 years any test would probably grade me a cirrhotic. :)

Hi Dzdays, I know what you mean, I was confuse as heck when I left that NP visit. I know she read the email I sent this AM, but doubt she sends reply. If in the event you know anyone in need of tx wanting to move to NC, tell them stay out of Greenvile and go to Raleigh , close to DUKE. My next visit with her is 11/11/14, and if I dont have the meds the appt is to be changed. Im trying not to get upset, but it not working for me.   Michaele       Maybe I should try to get Dr Who for my tx

Hi. I did send an Email to the Dr's NP. I havent heard back, suppose I should call her.  I dont want to sound indifferent, but she was the type of person one avoids having to talk to. Told me point blank , " I dont want to hear from you until you have the drugs in your hand."  But she made sure I knew that as a child  her family was socially involved with Dr. Oz familys . When she was young, she had to keep an eye on him during gatherings. LOL Said he was a brat.   I was wondering what the hold up with the drugs is. Perhaps they were waiting for Harvoni , but DR gave impression he didnt want to wait.   Thanks  Michaele       Just sent NP another Email asking what meds were requested, and made sure she knew I still have not heard from Medicare or Pharmacy

Beacon, Let me say this in the strongest words possible.  It would be malpractice to put you on an interferon based regimen today!

Hi Bruce,

Back in 2011, 48 weeks of Peg/Riba cost $30,000. It probably hasn't changed much.

It's of interest to see the protest about the cost of Incivek ($49,000 for 12 weeks) and Victrelis ($48,000 for 48 weeks).

http://fairpricingcoalition.org/2011/05/24/the-fair-pricing-coalition-expresses-disappointment-at-the-price-of-vertexs-newly-approved-hepatitis-c-drug/

Matt,

We are both BCBS and I believe they update their drug formulary on a quarterly basis. So at first Harvoni will be a non-formulary drug. For me that would be a $50 co-pay as opposed to a $5 co-pay. Both Solvaldi and Olysio are in the BCBS formulary and Harvoni will probably added in December. But first I must deal with my PCP and my next appointment is on 10/16/14 to review my latest bloodwork. He told me at the last visit in May that he wanted me to see my specialist (an ID doc) in Jan 15 as he wanted to see real world results of the new one pill combo. I'm going to remind him that Sovaldi has now been in the real world for nearly a year.

Does anyone know the cost of Interferon and Ribavirin as I would like to compare the price of the triple combo of Sovaldi/Interferon/Ribavirin to the cost of Harvoni for twelve weeks. This is just in case my specialist might even consider that as an option.

Hello Michaele

You need to get ready to treat with Harvoni , follow the threads on Harvoni it will help you to get ready for your Nov 11, appointment

matt

Thank you for sharing this information.. I too have printed it out and am just waiting....not sure what Highmark Blue Cross of PA is going to do this time around....

Hi Matt:

Not yet but soon I'm sure.  You probably already have this but here is the FDA search engine for NDCs:

http://www.accessdata.fda.gov/scripts/cder/ndc/default.cfm

If we get really anxious we can always email or call.  Or, camp out on the FDA doorstep.  lol

I was moved to #1 spot my doc's list of 85 priority patients, so here is hoping Blue Cross does not hold me back.

Tomorrow as soon as approval is announced my info will be turned in for Ins. approval...fingers crossed!

Will be looking for the official FDA ID#

The anticipation is unbearable.....I have not been this excited about an impending treatment since the very first treatment I had in 2004 (altho unsuccessful...) I am really hopeful this time

Hey All

If on Friday the FDA approved Harvoni (S&L) they will assign a official FDA Drug ID #

This ID # is what your health insurance company will need to start the prescription process.

If anyone finds out the number , please post here.

matt

Hey All Hep-C friends

Well this week has finally arrived, it been a long long 8 months of waiting for the FDA and Gilead to release this long thought of and almost dreamed of panacea.

(One daily pill Hep-C cure with minimal side FX's)  I hope it lives up to the billing.

If you have never been in treatment before and are in fairly good health getting the treatment drugs might take a little longer, but it will come one way or another. Your medical team will be a big factor on pushing your Insurance and advocating for you. This can be something that we might not have as much control over but at least it informs us of how much our Medical team really cares.

For those of us that are relapsers, non-responders, and cirrhotics it should go  faster and possible smoother.

Being prepared for that initial visit with your doctor is the first order of importance. Our records of treatment, protocol and tests to bring along to the visit can save time and money.

If you have seen only one doctor and he has all your records you might be in great shape, but if not here is a list of important docs to bring.

#1 Biopsy report of liver, and or Fibroscan and any CT, MRI, Ultrasound 

#2 History of treatment with supporting documents , date of treatment, relapse date and Clinical trial results.

#3 Your written diagnosis from second or third opinion doctors, along with there current recommendations.

#4 All liver function test results old and current.

One of the reasons I bring this up is because I researched how my health insurance carrier (BCBS) handles these specialty drugs requests from doctors. Because of the shear cost of these drugs the insurance company immediately puts the request through the Clinical review dept. which in BCBS means its goes under the eyes of Prime Therapeutics which is a Benefit design, cost control, consultation and Clinical analytics / outcomes company.

They will look at everything that the doctor is requesting along with ALL SUPPORTING DOCUMENTS to make there recommendations to the insurance people. So for time and expediency we should be prepared the best we can which should shorted any time from initial request to delivery of drugs.

excited matt   

Same day as my appointment, skewed.  October is going to be an interesting month.  

The S/L combo has been a Plan A for me ever since I started reading about it!  

Huey wrote:

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  It seems like the insurance companys would be letting down these employers who pay into this so they have workers who are healthy and productive ,if they insist on giving them drugs that will make them too sick to work. Just because it is cheaper

 

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Insurance companies are in the insurance for profit business, period.  They are not concerned with how employers are impacted nor do they care about side effects unless the side effects are so severe that patients need to be hospitalized (thus increasing the insurance co's expenditures).  

You are applying a standard of decency that simply doesn't apply in the corporate world (with very few exceptions).  They have their own rules and rule number one is: make money. Rule number two is make more money.  :)

Abbvie isn't my first choice either and I think there is a strong possibility that come December Abbvie will undercut Gilead's pricing.  If that happens we may not have a choice for the S/L option.  I see Oct through Dec as a small window of opportunity where Gilead will have no competition and doctors will prescribe S/L for those who get there first.  After Abbvie enters the race all bets are off.  Check this out:

"Ten out of 10 doctors would pick Gilead in a cost-neutral environment," says Mark Schoenebaum, the New York-based head of health care research at International Strategy & Investment Group LLC. " (Payers are arguing), 'If we get a discount for a less convenient drug, we're fine using the less convenient drug.' They need someone to play ball."

http://www.chicagobusiness.com/article/20140510/ISSUE01/305109990/abbvies-84000-question

The Abbvie combo is not only less convenient but it will almost certainly carry some harsher side effects (it also has significant drug-drug interactions). Nonetheless, once Abbvie enters the market Abbvie will be the tx of choice for insurance companies if it costs less.  If Abbvie's pricing is the same as Gilead's (a cost-neutral environment) doctors and patients will have a choice and Gilead will be the winner.  Abbvie would be pretty stupid NOT to undercut Gilead's pricing despite what its CEO is saying now.

I don't mean to harp on this and if Abbvie's prices are the same as Gilead's then it is a non issue.  I just don't want to see anyone miss out who really wants the S/L combo.  My plan is to do my best to get in on it before December because after that all bets are off.

Isis,

I hear what you are saying. I think with FDA approval that may loosen up my PCP's thinking. SVR-wise the Abbie combo is pretty good but includes ribavirin and therefore not my 1st choice and we'll see about price comps.

With my insurance (Blueshield HMO) I have to go through my PCP with a referral in order to see a specialist. Another thing is I don't see a single hepatologist in any of my offered plans and the few GI's don't seem to be trained in hepc. In other words I'm limited by my insurance options. My ID doc said he is advising all of his non-cirrhotic patients to wait for better options but for those like me with cirrhosis he said they should treat now. So since this was Sept 2013 he wanted me to start on the old triple therapy that was the SOC before Solvaldi/Olysio approval. I told him I would wait for better options. I go back to see my PCP on Oct 16 and at that time I will tell him I would like to see the ID doc and then talk to the ID about my "current" options. That way I can take my PCP out of the equation (it seems that since he "discovered my HVC he feels he has a say in my treatment). The ID doctor I think will go along with my suggestions and then on to the next obstacle===insurance approval.

Hi guys, my appt. is 9/23 for S/L...I think I'll probably need a whole new workup of blood tests since my last ones were months ago...I'm really looking forward to getting treated and I'll just barrel through any obstacles that I run into.  This fatigue that I have is debilitating....I can't wait for the fall....

My PCP thinks Insurance companies will still try to force people (who are not Interferon intolerant) to do Interferon first because insurance companies are that evil.   I agree they are that evil but am hoping docs fight back on this one.    

Insurance companies are influenced by FDA approval, Matt, but what they are really influenced by is the bottom line.  They have to pay for SOC tx so the question will be what is SOC tx.  Having said that insurance cos can always exclude or limit payment for "specialty" drugs. 

Hi Beacon:

I'm in a similar position to you and here are my thoughts on the subject for what they are worth.  Waiting until Jan won't tell you much.  It will be mid- April at the very earliest before we see any real world SVR results and even those will be anecdotal.  I wouldn't expect to see problems "right out of the gate" in terms of safety; that also will take some time.  We have seen enough people on Sovaldi to know it may have side effects, probably worse for cirrhotics, but nothing like we saw with the Interferon/Riba/Incivek combo (which we did see right out of the gate).  The ledipasvir shouldn't add many side effects; probably fewer than the Olysio.

Something else that I am considering is that the Abbvie combo should be out in Dec.  If it is cheaper there is a risk that insurance will opt for that combo instead.  So, if you want the S/L combo, it might be good to jump on it before the insurance co. has another option.  (This is assuming Interferon is not still an option when the S/L combo is approved.)

Finally, since you are cirrhotic best to treat sooner rather than later on the all orals.  We cirrhotics just don't have the time it will take to see how the all orals play out in the real world.  

A word on infectious disease docs.  They are fine if you aren't cirrhotic but for cirrhotics you should find a hepatologist or a GI with hepatology training and with hepc tx experience.  Many Hepatologists appointments are booked 3 months in advance; I'd start looking for one now.  

Hi,

Just ran across an article on Vitamin D and how it might affect your chances of reaching SVR.   Thought I might mention simply getting your health in order before starting treatment.  I could not have been accepted for my trial if my diabetes and blood pressure (which I take meds for) had not been under control.  My general health ( for my age) is pretty good.  So you might want to take care of little health problems before the new meds are approved so you will be in top shape to reach SVR.  I was not allowed supplements for 30 days before or during my trial and don't think they are a good idea during treatment--BuT I was told to take B-12 during the trial.  A trip to the dreaded dentist might be a good idea as well. Click on Healio below to read the entire article.

Does Vitamin D Deficiency Affect SVR and Fibrosis?

-- Edited by suziq on Saturday 12th of July 2014 10:06:19 PM

-- Edited by suziq on Saturday 12th of July 2014 10:10:19 PM

Matt Chris wrote:

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This is part of the early history of the development of Sofosbuvir,  this article follows Raymond Schinazi life and Jeremy Clark the chemists that came up with this compound.

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Looks to me like Jeremy Clark invented it and Raymond Schinazi was just the money man who reaped the rewards of the invention.  Clark filed a lawsuit against Schinazi in 2008 in federal court in Alabama alleging fraud among other things.  The lawsuit was dismissed by summary judgement in 2010 for lack of jurisdiction. Clark was pro se, which means he didn't even have a lawyer; he was all on his own.  As far as I can tell Clark's case was never even heard on the merits.  Very sad.  Meanwhile, Schinazi personally made >4 million from the sale of Pharmasset to Gilead.    

Thanks for posting this Matt.  Interesting back story that once again shines a bit of light on the dark and greedy side of big pharma. 

This is part of the early history of the development of Sofosbuvir,  this article follows Raymond Schinazi life and Jeremy Clark the chemists that came up with this compound.

http://www.rfspharma.com/images/Hepatitis_C-the_cure_FInancial_Times_March_2013.pdf

Another very interesting link was when Jeremy Clark was briefly on the forum 

http://hepcfriends.activeboard.com/t53012406/7977-and-its-creator/

Interesting reading if you like back stories

matt

Hi Matt,

I wonder whether the Geno 3's will be included in the FDA approval. The Geno 2 are doing fine with Sovaldi/ Riba, but Geno 3's achieve 100% SVR if Riba is added to 12 weeks of Sovaldi/ Ledipasvir.

http://www.hepmag.com/articles/ELECTRON2_SOF_2501_25458.shtml