Hep C Discussion Forum

Isiscat2011 wrote:

---

Very exciting stuff.   It really makes me wish I could roll back the clock on my HCV/liver disease.  I'd just sit back and let the pharma guys show me what they can do.  It is a seller's market now but that will change.

I don't know if most people really appreciate how much better HCV tx is still going to get.  What Malcolm and Matt have mentioned is the future: Individualized tx, Short tx durations, and 100% SVR rates for all genotypes (especially easier for those who are not carrying a bunch of tx induced mutations).  

 

---

 It is exciting!  To think of 100% cures and even shorter treatment times, wow!  I hope John is reading this, he really needs some encouragement today. 

Hey Malcolm

At the AASLD convention this week my friends from the Texas Liver Institute (Dr. Lawitz) will be presented a LB-33 (Late Breaking) abstract on almost that very combo. Very powerful DAA combo, this will tell us a lot of if its possible to treat HCV in a much shorter time frame.

C-SWIFT: MK-5172 and MK-8742 + Sofosbuvir

In treatment-Naïve Patients With Hepatitis C Virus Genotype 1 Infection,

With and Without Cirrhosis, for Durations of  4, 6, or 8 Weeks,      A total of 102 patients were enrolled.

They will present complete SVR4 data, and SVR8/12 data for the short duration treatment arms.

matt

I saw that you relapsed on a prior AbbVie trial, Matt, that's a shame.    I'd certainly be wanting Harvoni too in your situation.  I'm sure you know (much better than I do) not everyone is going to achieve SVR on any treatment.  I feel like the odds are in my favor and I have the best chance with this combo, but if it turns out this doesn't work for me, I will just have to try again later.  My nurse mentioned I should get a new toothbrush, razor, and nail clippers so as to not re-infect myself.  Perhaps they had you in mind when they said that?

To Isis's servant,  I like honest discussion.  That's the only kind worth having.  I don't want to come off like AbbVie's designated spokesperson, I just want people to feel like the have some other really good options for treatment, because I do believe this is the case.  I am scared some people might sink into depression because they can't get Harvoni.  I do value Mallani's opinion more than anyone else's on here, for sure.  Isn't he a doctor or something?  I hear what he's saying.  But again, I have to go with the odds on this one.  Free treatment doesn't hurt either.  I have high-deductible insurance and should soon have two sons in college.  That $4,000 deductible would hurt not only me, but my ability to help them financially.  Also, all these drugs are just taking their baby steps out into the world, and I don't think we know what any of them are likely to do 10-20 years down the road.  We might grow a 3rd eye for all we know.

Vanessa, you got to do what you think is right for you, when it's right.   It can be very stressful to change jobs, especially a long-term one like you had prior.  A stressful environment probably isn't the best one to go through treatment in.  When the time is right, you'll know.

This is a very excellent topic.  I have turned down the AbbVie Trial as I was feeling that I was jumping because it was a financially great opportunity, even with the Riba arm possibility.  And that was it!!!!!    If I wasn't about to start a new job that will require me to 100% focused ~ maybe, but I was getting the strong gut feeling that now is just not the time.

  I may very well live to wish I had jumped on it with all my toes and fingers -I will meet my new hepatologist in a few weeks.  I will trust that my health has maintained and the best treatment for me will cure this dragon.

I can't thank you guys enough for bringing a ton of digestible information to peeps like me.  I sure have never gotten this from a doctor.

Very useful information, Matt.  I am thinking that in the near future docs will have some tx prescribing choices to make, and being well informed will certainly be in our best interests, because not all docs will have studied this subject so closely.  It may take some time for AASLD guidelines to catch up as well.

We know that insurance companies will want to pay for whatever is cheapest (assuming comparable SVR rates) but that doesn't mean we will have to accept a protocol that is less desirable for our specific circumstances even if we have to appeal an initial decision.  I am just prognosticating here but I'm thinking that since Harvoni will probably be less expensive for 8 weeks than Abbvie for 12 that both Harvoni and Abbvie will need to be on ins. co. formularies (despite Express Script's threats to exclude Harvoni).  In 2015 docs will likely have some other options on the table.

We should continue follow the specific tx options (including duration) closely.  Patients' individual needs should be considered and they will vary widely.  

I hear you, LC, and in your shoes I probably would have made the same choice, and it certainly isn't my intention to question anyone's past decisions; just to let those faced with these decisions know they have options.  It is such an individual decision and for me the factors would also include how long I had the virus (if I knew), my age, any other health-conditions, lab results, and of course whether I had any hepatic or extrahepatic symptoms, etc.  

I like to give people their options because I know health care professionals are not discussing the nitty-gritty details of life post-tx if the tx is not successful.  It can have long ranging effects including fewer future tx options, fewer clinical trial options, more difficult access to tx, and potentially even long term health consequences.  I think people have a right to have all the relevant info when they make their choices.  

I would encourage everyone to read Malcolm's take on the Abbvie combo as well because he understands the science better than anyone.  He indicated that tx failures will be very low, but they could be "disastrous" in terms of RAVS.  That doesn't mean it isn't a great combo for what is available now.   

Like I said, I know this is a touchy subject, and believe me I don't like saying it (people get mad at me!).  But, I feel strongly about patients having access to all sides of the story.  It is devastating to feel you have not been told the truth when things don't work out the way we had hoped.  For most people treating HCV with all-oral DAAs is a no-brainer; it is worth the risk.  But, there are so many different people in so many different situations out there.  I just don't want patients to feel like someone else has made their decision for them without telling them all the facts.

P.S.  We are fortunate to even be facing these potential choices.  Many people around the world will have far fewer options in their near futures. 

I agree, LC, and I'm really hoping that people can also be realistic not only about access to treatment, but also the nature of tx itself.  HCV tx is not perfect but it will improve over time.  

I understand the feeling of urgency to tx HCV, and for many people, the need is urgent and the possible benefits clearly outweigh the potential risks. But, understand that this is not magic; it is imperfect science.  There will still be relapsers with the current tx.  The consequences of failed tx can be substantial and life altering.  It may effect your tx options in the future.  In the future there will be tx drugs that will kill the "wild type" virus 100% of the time in a relatively short period of time (perhaps even a single injection).  Controlling RAVs may not be so easy for those who have failed previous DAAs. This needs to be at least considered by those who have time on their sides.    

I have said before that if I could afford to wait for a few years, until we really see how these new drugs hold up in the real world, and until tx gets even better I would.  I know this isn't a popular thing to write but being realistic is a good thing, IMO.  There is a difference between being proactive and reactive.  

Realism: the attitude or practice of accepting a situation as it is and being prepared to deal with it accordingly.

Hi Guys:

I read that a more realistic expectation is 3 years--and that is just for treating HCV patients who are already diagnosed.  To eradicate HCV (in the USA) will take decades (longer if we don't get the RAVs problem under control).  Not a huge surprise though.  So much for the health care free market system.  Part of the problem is the fear based idea that the Affordable Health Care Act (Obamacare) and other measures that could help citizens equal socialism.  

If the USA knows how to do one thing best--it is propaganda.  Scare the people into believing they will be living in some kind of dystopian socialist nightmare so unrestrained, greed infested, Capitalism can thrive.  This is just the tip of the iceberg.  Millions have already lost their homes, their pensions, their life savings, and their health to the American dream.  The unaffordability of life savings drugs should serve as a wake up call for those who need to be personally impacted by it to believe something exists.