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Sofosbuvir and Ledipasvir Treatment

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Posted 11/8/2013 1:33 PM (GMT -5)
Latest on Hep C treatment for my partner:

At Post TP follow up yesterday, they told us that new drugs would be available at the Post TP clinic starting in January. Several combinations could be prescribed. The hurdle would not be so much which drugs would be effective, but rather who was going to pay what.

The docs said to prepare for the fight of a life time as the center was making the argument that if the insurance companies paid for transplants for those infected with Hep C, how could they, then, deny them treatment for that disease which could lead to death or re transplantation down the line.

With the older treatments, the $$$ outlaid for treating side effects--Procrit, neupogin, platelet transfusions, hospitalizations, blah, blah...when a CURE was at hand seemed short sighted. With advertising and a national response, they felt that the companies would cave.

They said a course of the drugs for 3 months was going to run about $180,000. And a combo twice that, and 6 month regimens..well a half million dollars seems to be the price of returned health. Now. After years of being too sick to pursue a great career making gobs of money, most in this position are hardly holding on financially.

Then today we got a call. They have put Mike back on the front burner for the sofosbuvir/ledipasvir study...he is to come in next week for a take down physical. What????? What??? What???

There is one candidate before him..and they are feeling that they will get more than one slot. Will they, who knows.

But goodbye rotator cuff repair! Good bye, good bye. At least until after we get the news.

We are in a twirl over here at our house.

More when there is more news.

Mama Lama
Posted 11/8/2013 2:57 PM (GMT -5)
Rotator cuff repair vs. Help C treatment

Advantage Help C

Prayers are with you 2.
Posted 11/8/2013 5:43 PM (GMT -5)
In a trial/study, there should be no cost to the consumer.

Keeping fingers and toes crossed for Mike!!!

Hugs,
Connie
Posted 11/8/2013 8:01 PM (GMT -5)
This was the exact trial that I started back in December 12,worked like a charm without any sides at all. I was stage 2 grade 3 on biopsy before trial. Now stage 0 grade 0 AST 21 ALT 22.No sign  of the virus at all. The new drugs are DAA'S (direct acting antiviral ) unlike interferon and ribavirin that interfere with the virus and only give you at most a 50% chance of svr. Sofosbuver/Ledipasvir stop the virus from replicating and the virus just dies, hence you are cured and cleared of the virus. The only way the virus would come back is if you were reinfected.

EzAl yeah cured of hep c, March 2013 undetectable since Jan 6,2013 6 month SVR June 2013

Posted 11/10/2013 3:28 AM (GMT -5)
Think this is the one I might be put forward for , will find out tomorrow...so excited for you! I am trying to stay calm, but there is so much at stake! Everything crossed for us ..... Feeling the force! Xx
Posted 11/11/2013 11:58 PM (GMT -5)
I did that trial back in Dec 12 stage 2 grade 3, knocked it out in 7 days and it never came back. No sides at all and 1 pill a day. I was amazed how well it worked. I had a new biopsy and ultrasound and there is no more damage to my liver at all. I asked the docs if there was anything that I should limit myself to ,they said not at all, go enjoy your life and be happy, you're cured.

Post Edited By Moderator (hep93) : 11/11/2013 10:02:04 PM (GMT-7)

Posted 11/12/2013 9:20 AM (GMT -5)
Mike pulled from trial this morning

Actually all from our center are pulled.

:-(
Posted 11/12/2013 11:26 AM (GMT -5)
Oh nooooooo Carol!! What did they say for a reason?

I can't believe this :(
Posted 11/12/2013 11:59 AM (GMT -5)
Miami lost all their slots.
Posted 11/12/2013 1:53 PM (GMT -5)
OMG, Carol! I know what a huge disappointment this is. Any reason the slots were pulled? Or were all the slots filled and no more open? This is yet another reason not to count your chickens....though he was so close to having this miracle. We can only hope that it will be widely available by the first half of next year....but then, there's the question of who will cover it. I am really sick over this. I won't know if I've been accepted until the 22nd. With the recent problems I'm having, I just don't know...

Hugs,
Connie
Posted 11/12/2013 2:00 PM (GMT -5)
Carol,

I can't believe they would do this...how is Mike taking it, I know you must be devastated but I hope you and Mike don't give up hope. Gosh, so close....I don't really have any words, I'm so sorry, and so bummed!

Hugs,
Mae
Posted 11/12/2013 8:39 PM (GMT -5)
Mike is taking it pretty well. It was up and down so many times and the docs said that the studies were a crap shoot with centers in and out of good favor with the Manufacturer..who knows why. No one from Miami got in this time, it wasn't that Mike was disqualified for a lab being too high or something. So that helps.

And, behind Door #2...he gets his rotator cuff repair on Tuesday!! So though the shoulder fell to 2nd place last week, it is #1 on our to do list for now!

Hugs,

Carol
Posted 11/12/2013 8:57 PM (GMT -5)
Good to know that it wasn't just Mike, and that he is handling it well. So on to shoulder repair! It should make him feel better that he can accomplish SOMETHING positive and that will have him feeling better once he gets through recovery.

Let go and let God has been my mantra for many years...though putting it into practice is sometimes harder than it seems. I also like to be in control of things, but am slowly learning to save my energy for those I do have some control over. The Serenity Prayer works, too, and I use that even more frequently. ("God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.")

Hugs,
Connie
Posted 11/12/2013 9:46 PM (GMT -5)
It's that wisdom thing that gets me every time...

I have the new challenge with my sister too...cognitive dysfunction...early dementia at 65. She has good days and bad.  Terrible short term memory. Lives nearby, alone.  Lost partner 3 years ago and down hill since.

This week, while I wasn't looking, she bought a new car.  If you knew me well you would know I explain it this way...she can't find the (blanket blank) grocery story unless I am in the car...so why does she need a giant new SUV to get there!  And how much longer can she drive anyhow?

GASP. We may need that  $$$ for her care. 

To quote George Costanza's father...."SERENITY NOW!"

Mama Lama

Posted 11/14/2013 5:48 AM (GMT -5)
Oh mama, so very sorry ...they turned me down too, all slots gone in Uk hospital where I am. So much more important for you than me, but the disappointment is crushing. I had a good howl....and slightly comforted by the fact that if we can all just hang in, it will be available. There is lots of pressure internationally for Gilead to release this now for those that need it most, and at a reasonable price...I am part of a pressure group to petition the Government to help. Our argument is that it is bordering on malpractice for the pharmas to let people die while they jockey for position and hike prices for their shareholders. The fact is the drugs are there NOW if they just collaborated or released them for docs to 'mix n match'. Money talks, but patient power helps. I feel so much for you guys in the US, at least here we have free health care, tho that is changing fast. Praying for you and us all, love michaela.
Posted 11/14/2013 9:02 AM (GMT -5)
Michaela,

There were only so many trial slots and who knows what criteria the manufacturers used.

I have posted before that we are prepared to fight with the insurance companies and federal/state government here...there is help on the horizon for thousands and thousands world wide who contacted this virus before testing or warnings were sounded...and thousands and thousands remain untested...especially those known here as Baby Boomers...those many born soon after WWII when things got back to normal around the world for a while.

Then the 60s happened...and we know the rest of the story for a lot of folks.

We will be on the front lines of the fighting on this side of the pond. Mike has public assisted insurance and we feel pretty certain that the meds will only be available at first to self payers with a pile of money...that insurance companies will be slow to put the new drugs on their approved formulary.

The way it works here, they will pay in full for a cheap generic equivalent, and you co pay for the more expensive, exotic drugs...20% or 50% or 80% or 100%. so it seems like you have drug coverage...but  it means you have drug coverage for cheap stuff and nothing for heavy duty stuff...even some chemotherapy drugs are not on the formulary...can you believe that? 

Then the drug reimbursement on a lot of plans has a cap, where you then pay yourself until you are considered a catastrophic case and then the insurance covers again at some new %.  On our Medicare, for seniors, I think we have to pay around $5000 ourselves before the insurance kicks back in.

Right now my asthma medicine is not covered.  Better I be on oxygen 24/7 and in the hospital every 3 months with pneumonia. GASP. And I'm not the one with liver disease in our family.

Got to go...PC needs to be recharged.

Have a nice day,

Mama Lama

Posted 11/14/2013 2:34 PM (GMT -5)
I just read an article which stated that the cost range is going to be reasonable for a 12-wk. treatment...I think the top cost was around $168. But we'll have to wait and see what the reality is when it becomes available. That seems way too low to me.

Hugs,
Connie
Posted 11/14/2013 3:24 PM (GMT -5)
i think one aca law in 2014 is that no standard of care can be refused. and sofo will be the standard of care. so there will be coverage. i remember when incivek was released. my hmo was treating with it in 6 weeks. when i picked up my 1st rx, the cost for 28 days of incivek was $20,000.00. my copay was $15.00. with peg/riba included, my copay was $37.00. so i believe that $168.00 is copay. and my insurance is with kaiser, a low cost hmo.
whats up with Mayo having tx drugs around the 1st of the year.
barry
Posted 11/15/2013 1:16 AM (GMT -5)
I didn't say that, Barry. I said that Mayo expects the new drug to be available sometime in the first half of 2014. Right now, they are submitting names for the trial...or maybe have finished that by now. I won't know anything more until the 22nd.

I knew that the cost stated was co-pays. But that's for the entire treatment.

Hugs,
Connie
Posted 11/15/2013 12:28 PM (GMT -5)
sorry for my assumption. since there are no all oral txs for geno 1 coming until 2015, i assumed Mayo was replacing a trial site.
Posted 11/15/2013 1:03 PM (GMT -5)
2015? I didn't know that! In fact, what I keep hearing is next year. So I'd better pray doubly hard that I get into this trial. I'll know more about all this next Fri.

Hugs,
Connie
Posted 11/15/2013 1:28 PM (GMT -5)
Connie, there is so much misinformation out there. the new treatments coming the 1st of the year are; sofo+interferon+riba for 12 weeks for geno 1

simeprivir+interferon+riba for geno 1

sofo+riba for 12 weeks geno 2

sofo+riba for 16 weeks geno 3

there are no new drug applications pending, other than sofo or simeprivir
barry
Posted 12/16/2013 5:58 PM (GMT -5)
Locking this thread and opening Sofosbuvir and Ledispasvir Treatment #2.

Hugs,
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