Hep C Discussion Forum

Thank you.  I decided about 2 weeks or so that I am going Advocate after learning that my Grant institution (Health System) " has already been allocated the money for  Hep C treatment  with Harvoni. . Problem is, nobody knows where it is.  Broward Health says they don't have it, but  HHS and others from the Government, say they indeed have the money.

 The liver Foundation was very helpful in getting to the bottom of where the money went, and they finally said to Us " it has been allocated, but"  We were able to find  one small sober facility who got it  specific for Harvoni, even though none of them are great candidates for it as they are still active drinkers and drugs . Go figure, but I don't know any of them are on the meds, they were just the vehicle to get the money which they will use   for anything they want in spite of the money being required  for treatment.   The probably using it for  a Caribbean  bonding trip.    That's how they roll. I was on the board once, and I will not let them spend this money for anything than the grant provides .

The liver people are looking to help people  be their own advocates, and there are a dew high profile people who have been thru it. It is time to go Advocate to make sure that everyone who  needs this medication can get it.  With the way the election  results came out, this would be a really good time to talk to your congressman etc.   They are smart enough that it is cheaper to treat before more  damage is done .  My understanding is they are going to address this issue  pretty quick.  After all, we all know how they love big Pharma . Everyone on the Hill, tell me that mid Jan is when this will be addressed, and allocations go out to the states.

Lastly I thought the Gilliead  people were awesome over the several times I spoke with various people in the Company. Help is on the way but get involved with you reps, your local orgs, and make sure this gets to the people in your community. It will make a difference.  

I had my 2 examinations .Both considered experts in Hep C . I am still waiting  for Fibro scan  which is hard to find at home.  The do not want to do a needle biopsy because of my history of Cancer, more specifically  the  Bilateral RPLND . There are thousands of clips and other stuff from that surgery so they would rather pass on that.    My V-volume was a spec lower, but I feel like crap, then something about ammonia  and  my brain?

The both told me that the time to treat is when I am having problems from the virus. I am going to have a bigger problem if I don't meet my contract obligation . A serious one which would pretty much remove any idea of me paying for it, as  with my grant Dr, I have seen her 3 times, for 10 minutes each and Jan will be the next one.

Rather than sit here and wonder, I am going to do what I can. I am also not up for a gamble  choice .  They both told me, as did someone who is involved in development to market drugs, that Harvoni  was not developed on the typical model.   The cost to develop,  bring it to marke,t was way lower than  what is normal . .  In the scope of things , big time less.   Which the Pharm guy said would be a huge plus . They are going to make their money on volume with a lower cost.   Which makes a lot of sense .

No we cant  say any of us will have the same High priced premiums before they treat. We may get some lower, but because of the ACA law, many people are about to get a HUGE surprise  by the  Caddy Tax,  and if the ACA still exists, they are going to get ailed with HUGE deductibles .  Remember the ACA only exists bc they basically gave the insurance companies  a ton of money to play.

I am more afraid of not getting treated sooner  because of this.  How many of us can pay 10's and 10's of thousands deductibles, and employer based  policies will essentially be gone.  If I had an employer policy,  I would kicking on the door to get treated now, before they are finished by caddy tax

ounds reasonable to me assuming a rationing system is necessary.  Do you think people would be willing to patiently wait their turn?  Say, an F-1, was told "not later than 3 years"?     

Let's ask the F-1s. 

Who decides this ? 

 "would provide some confidence for patients required to wait. Just a thought..."

 I have not had one single Dr tell me   I have to wait  for any reason.  Who decides I am required to wait?  Only one I know, and who would never verbalize it , is the one who wants to chat for 10 minutes  every 2 months  because they dont want to pay for it.  Everyone else is like " Let's go "    I am waiting for the appropriate  documentation  to do just that.   When the ACA blows up, and when the Caddy Tax hits, there will be way more people who will need to have some assistance  with paying for it ..... what's the difference ? 

I do not have a goal in which I  am trying to be first round of what looks like a good drug.  I understand words like assess,  surveillance  and  so on.

My worry is  that I am assessed at the beginning the correct way. It is that simple . I can rememeber the exact day, and the exact time when I woke up a totally different person.  Energy completely gone. Loss of weight, and the most troubling is, and continues to be .  I am  looking at my cat of 9 years and forgetting her name.   This is very disturbing. 

It has taken over one year and 4 weeks to get  the Geno, load etc.  and that is after 5 appointments. It is my understanding my VL is high  from what  this site has told me .   I don't recall any mention of some toxicity  that can happen until the 2 Drs who are helping asked me if this had been explored.  It hadn't or I forgot. 

I also understand the process for new drugs very well . If someone was to say that having  evaluated my situation I am in , that I could easily wait 3 years, I would  perfect for me. I go on Tour in Jan , and I would like to do it with some idea of what ,  is going on so I can plan or adjust .

Lastly, I am looking again to see if some policy on the ACA site  would work for me, but

So, being  that is where it is , I know my goal right now is to get the Drs to get my Dr to assess this correctly and quickly, and they are going to get her in the right direction or I have to switch . With my medical history of Chemo, more  chemo, a very high  number of CT' scans with contrast, they would not use CT to  assess my liver. If the liver looked good, they would treat  immediately . What ever the treatment options that are presented, but it some combo, or Harvoni, I will do whatever the one they see fit, when they see fit. 

I could phrase it differently.  Of course it would cost  more now to treat , but they are probably close to their cost  of production . I have also seen where they have already "sold"  the drug(s) on individual deals with various organizations , Governments etc. 

There are losses in production as an example, that would be a no brainer that a healthy workforce is more productive than a sick one. That is a cost to not only a patient, but employers, insures and so on. 

I will go look at the exact number, but the 8 years I have felt I had a problem , the many many scans, tests,  blood test, er visits  and so on are expensive to the person, and to society... It is the reason for the ACA in the first place  I am fairly certain, but I will look, that the last 8 years of me trying to find out what was wrong cost more than the  85,000 Dollars for Harvoni . Much more if you add in lost of production and such. Weigh that with the good response of the new drugs,  increased productivity and being healthier adds more to the plus side of treating now.  After all wasn't it one of the  main goals of the ACA  to keep people out of the Ers because of cost? 

Brian1412 wrote:

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Eventually,  even my Dr will learn that it is muct more expensive to  ignore than it is to treat the right way.  The good ones already know it, and so do their patients 

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This isn't necessarily true.  HCV is a slow progressing disease that can go without tx for many years with no adverse effects to the patient.  For those patients it is clearly less expensive to wait to tx until costs of tx decrease.  

For sicker patients, it becomes more expensive not to tx, but the comparison of cost to tx to liver transplants a false comparison because few patients will ever receive liver transplants.  Either they won't progress to that point or there will not be a liver available.  

If cost was the only issue then the answer would be clear: it is PRESENTLY less expensive not to tx many, perhaps most, patients.  

Brian1412 wrote:

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So, as long as I have the grant, I am going to need help in understanding the steps of the process, test result interpretation, tests needed   etc. and get this going myself. That is where it is, and where I go advocate . For myself, and others .

Here's a link for an activist/advocate group: http://www.treatmentactiongroup.org/hcv

And this: http://www.thebody.com/content/74888/act-up-calls-on-congress-for-price-cut-on-sovaldi-.html

And this: Go get 'em!! 

 I am not sure what they are. Not sure who had them sent. I guess I will know when I see Dr on Friday .. I did see one  requesting pharmacy info.   Wouldn't they do a Fibro scan  before  choice of drug?  One of my goals  is that I am going to talk directly to the Dr, so that there is a reasonable  time response to this.  If it says I can wait 3 years, great, but I am not going to  have this in me for 3 more years  more.

Having my Ca Drs  and a Gastro specialist I know at OSU,  I  have great advocates to see we can get on this, soon as possible. As my gastro  said at the start, they can get people into the new meds, but I think the trick is to be as informed as can be demand the new meds if appropriate .  The OSU guy said that while it may be cost at the start, but it would turn into the poss

I will let you know what they papers are

Thank you for the responses

Good luck Star! You're one of the lucky ones to start this drug and your odds of success have never been better! I'm happy that you're not experiencing many side effects, lets keep it that way!! Good luck and keep us informed of your progress!!

Tig

What did the letters from Harboni say? are you getting approved for it? Let us know how things go. 

Gigi

Hey Brian,

Good to hear from you! The news sounds promising and I wish you luck in finally getting the treatment you deserve. I'm glad your Ca doctor is providing you some encouraging news! I hope you hear something soon. Keep us in the loop and good luck!

Tig