Hi Adam, good to hear your update, very interesting.  I guess if that`s the policy across the whole of Wales now, then you can only go by what your nurse advises.   I`m glad you`re getting it in writing anyway, and that the funding question has been cleared up.   I take it that the `BBV` team is the `Blood Borne Virus` team.

Well, it`s all good progess and things are looking up!    Keep us posted. 

Hi everyone

saw my nurse last week. She advised me that the re evaluation of my 4 week viral load results is policy across wales now. That anyone starting treatment now would have been classed as UND with my 4 week result, which was <12. She told me that my concerns around possible funding issues (thought it may be my GP practice leaning on BBV team) were unfounded as they were funding both the triple and double therapies as they can purchase the double for about £200 per month cheaper than my GP (primary care team) at the moment, this apparently changes every year or so, then primary care team get double medication cheaper!!. Was not aware of the change here, I had been led to believe that the primary care team were funding double therapy and secondary funding triple. So, just waiting for a written explanation of what my nurse told me from a consultant in Cardiff (the rationale behind the decision to re evaluate my (and all people currently on treatments) 4 week results). Nurse said I could do 48 weeks if I want. I said if I feel reassured by written clarification I would obviously much rather stop at 24 weeks. So looking promising, possibly only 2 more shots left. As soon as I get written clarification will post key points on the forum. Best wishes to all, hope you're having a good day

In Canada as far as I know anything <50 is considered UND.

Rob was detectable at 4 weeks but undetectable since then.  They will check again in April around 24 weeks.  If he is still <50 they have said he can be done treatment at 28 weeks.

Ronna

Hoper you get a good explanation that you can except. I would print off some of the latest publications and use them as your refrance and as the doctor , whats up with the changes in tretment policies.

Thanks for that, Adam, it`s interesting to hear about the situation you have in Wales.   Actually I do remember reading a little while ago that the Health Boards had received extra funding from the Welsh Assembly Government for the new drugs, but it`s quite alarming that you have to rely on your GP`s practice budget to fund the other two meds.   I agree with you that the sudden change in policy regarding your 4 wk viral load result seems suspicious in the circumstances, and it will be very interesting to hear how your nurse responds.

I remember all the waiting and frustration you went through before you could start tx, and it hasn`t been at all straightforward for you so far.  The great thing about joining a forum such as this is being able to talk things over with other people and compare notes, and I`m glad you found us! 

All the best to you, Jill

Thanks for your support Jill I think the Incivo funding came from Welsh goverment through to Local health Boards across Wales. My LHB is Hywel Dar which covers Dyfed. Dyfed consists of 3 counties, ceredigion ((where i live), carmarthenshire and pembrokeshire. It was touch and go whether i would be funded for the Incivo. First issue was deciding how to allocate funds in terms of Hep C patients awaiting treatment. Pembrokeshire and carmarthenshire are much more densley populated, so we had to wait to see how much Ceredigion was allocated. Then there was the issue I previously mentioned that a decision had to be made on whether I would qualify due to my liver being in good shape. Felt like i had been waiting for ages (was originally hoping to start In Oct 2011). The wait then was for NICE to license Incivo. I reduced my work hours to 2.5 days per week at this time in preparation. Had lots of meetings, letters etc saying treatment was iin pipeline, then offered double therapy as no decision on triple seemed to be on the horizon, then suddenly get a phone call out of the blue saying I can start triple in a couple of weeks. Then had to wait another month for my pre treatment v/l test to be processed(they have improved time for processing now), usually back within a week. Even my nurse has voiced her frustration at not being able to access my v/l results herself. Apparently in England they are able to acccess results next day. So....an emotional rollercoaster. At this point the funding issue is pure speculation on my behalf. It does seem odd though that initially they told me my 4 week v/l results could not be classed as UND (I told nurse of some of the feedback from the forum that in some countries my results would be classed as UND). She reiterated that no, they could not be classed as UND. So, why the sudden change of policy? Like I said, I trust my nurse, if this is about funding, its not coming from her. It will more than likely be from my GP practice who are funding the double therapy. Hopefully more will be revealed.......... Soon as I hear anything I will post on forum. Thanks again for your kindness in reaching out to me, I am pleased you are taking over as our forum owner, all the best, Adam

Hi Adam, I`m glad you`ve asked for a written explanation, this is all quite worrying, and we`ll be very interested to see the reply you get, thanks.  If it does turn out that funding is an issue you do have the right to appeal to your local PCT who are able to consider your case and overturn the decision.  There may be other sources of funding too, I`ll see what I can find out.  I know there is a huge problem over here with people not getting the treatments they need due to budget cuts, and it`s quite disgraceful that the new triple therapy drugs are being `rationed out` according to how far the condition of your liver has deteriorated.   So where did the funding for your Incivo come from, by the way?

Keep us posted.  All the best to you, Jill 

ps - Best of luck with your PSA test.

Hi Mal,

The viral load tests are done at The Heath Hospital in Cardiff. All the others Hb, WBC, Neut, Plts etc are done by the path lab in Aberystwyth hospital. I have asked my nurse in the email I sent to clarify which Roche test they are using. Regarding the prostrate am also waiting for PSA test. Don't find you a drag at all, am grateful for your vast amount of knowledge and experience.  Once I get a written rationale from my nurse or consultant I will post this on the forum, and again will appreciate any feedback. Cheers

Adamos40 wrote:

---

 (felt like I was being excluded for turning my life around, 15 years abstinence from alcohol & other drugs). My liver was probably only in good shape because of this.

---

 Great news on the 15 years, that is a very hard battle. I have 14 years clean here. One day at a time..

Found the print out of my 4 week viral load results-:

Hep C Quantitative RT-PCR : RNA Detected@ <1.20(x10^1) HCV IU/mL

My nurse is on leave this week. I have emailed her to ask for a written rationale for the re evaluation and subsequent findings that my 4 weel vl tests are now viewed as Undetectable.

I have also asked her to clarify whether this is national policy for UK (or Wales) now. A concern I do have (albeit minor) is around funding, as my GP practice are funding the Ribavarin and Peginterferon treatment. The Incivo (Incivek) was funded separately. I say minor as I do trust my nurse. She batted for me when I was waiting for a decision around funding for the Incivo. I nearly didn't recieve the funding because my fibro scan result prior to treatment was 4.2 (deemed normal). My nurse put a strong case forward for me to qualify for funding (felt like I was being excluded for turning my life around, 15 years abstinence from alcohol & other drugs). My liver was probably only in good shape because of this. So I don't like to think that my nurse is being leaned on by GP practice to finish at 24 weeks now.

Just need to wait now to hear back from my nurse, otherwise got an appointment due 8th march. Will see what emerges from this.

Thanks everyone for your support, all the best, Adam

P.S. On other health matters, been to GP this morning. Got an enlarged prostrate and small lump in mouth!! Have been referred to Urology and blood tests for prostrate and biopsy for small lump in mouth. Dr was reassuring that enlarged prostrate can be normal at my age (46) and didnt seem overly concerned about lump in my mouth. Have scoured various sites for side effects, none found in relation to prostrate. Sore mouth/thrush not uncommon. Nothing about lumps. Feeling bit anxious but ok. Not sure if its ok to talk about other health matters on forum

Hi Adam,

Your Lab is using very old units and has a high LLD. I wonder which version of the Roche RT-PCR test they are using? Is your Lab in Cardiff  or somewhere in West Wales? Aberystwyth.

Sorry to be a drag, but being Detected at 4 weeks disqualifies you from the 24 week Incivek regime. Even if Undet. at 8 weeks, the current recommendation is for 48 weeks treatment. Worrying about funding is unfortunately a huge problem and it would be disgraceful if treatment duration was modified to suit Practice Budgets. Get a PSA test for your prostate, and if it's normal, don't worry about it. Good luck.

Excellent news, Adam. 

Its a bit of nuisance this difference in VL readings between countries.

Here in Switzerland,  < 15 and UND is the same thing.

They even put as the test result : 

< 15 (no RNA detected).

Thanks Jill will do. Got my next scheduled appointment with my nurse on march 8th, will ask if consultant can attend. Feeling so much better since stopping the Incivo

Hope you get some clarification soon, Adam, let us know what the outcome is once you`ve had a chance to dicuss it with your medical team.  You`re doing really well anyway, keep moving forward.    All the best.  Jill

Hi Mal,

I think I was the 2nd person treated with triple therapy in my area (the first just a few weeks ahead of me ). I can't find my original 4 week vl results. Will get another copy off my nurse(unfortunately she is on leave next week). Thanks for the link. Had a look (and will email link to my nurse and Dr). Looks like my 4 week results were borderline which is what nurse said at the time. So I need to clarify the rationale for the change in my treatment plan properly, with a meeting with my Dr and nurse(only seen Dr twice since starting tx, and this has been when he has popped in whilst I've been seeing nurse anyway). Thanks Mal, You help to keep me on my toes, need to be more assertive with medical team and ask more questions

Hi Adam,

Has your doc had experience using Incivek? The rule is that you need to be Undet. at 4 weeks to qualify for the 24 week Rx. Your 4 week VL did not say Undet. so I'm hoping you're getting the right advice. Other Forum members who had low VL at week 4 ( but the report did not say undet.) have done 36 weeks, but the recommendation is to do 48 weeks. Here's a link. Cheers.

http://www.rxlist.com/incivek-drug/indications-dosage.htm

Hi Mal,

Just checked my original post after my 4 week vl. You're right I posted my results as 6 million pre treatment and 11 after vl test. Not sure where I got 13 million and 15 from. Put it down to the brain fog and or excitement. I have got a print out of my results somewhere. Will find that to clarify. I remember you queried which scale was used to determine tests. I asked nurse at the time and she seemed unsure and said she would get back to me. Think she eventually said it was the roche scale. I remember the point you raised about 6 million or log 6 (1 million). Think I asked nurse after you raised this point and she said it was to the power of 6. Appreciate your feedback as ever Mal. All the best

Hi Adam,

I'm confused again. You are now saying that your initial VL was 13 Million, but in a previous post you said it was either 6 Million or log 6 (1 million). Also you posted that your 4 week VL was 11 but now you are saying it was 15. We had a discussion then as no VL test can give a result of 11. I'm a bit surprised you Rx length has been reduced as this needs an Undet. at week 4. Cheers.

If only we could still go to stone henge....mind you my festival days are long gone!! Cautiously optimistic, still got 5 weeks of treatment and then the wait for the 6 month post treatment svr, but so far so good

Wow! What fantastic news. You must not have had previous attempts. Great. Time to celebrate.

Hi everyone,

Had some great news yesterday. My nurse phoned to tell me my treatment can be reduced from 48 to 24 weeks My original treatment plan was for 24 weeks triple therapy. My first 4 week viral load result was 15 (down from 13 million). I posted my result at the time on the forum. Got some feedback from folks in US and Australia that this would be classed as UND there. Mentioned this to my nurse and Dr.. They said that the way vl are measured here in Uk means that they cannot say my result was und. Apparently a decision was made yesterday after the BBV team had a meeting to re evaluate the way or scale they use to measure vl (not sure if this was at a local or national level, will check this out. Anyway, the upshot of this decision is that my 4 week vl results were re evaluated and classed as UND ( my 8, 12 and 16 week have all been UND), so this means I only have to do the 24 week programme. Hasn't quite sank in yet. This means I've only 5 darts nights left!! Had got my head around the 48 weeks, now need to get it around 5 WEEKS LEFT!! Looking forward (fingers and everything else crossed) to a HCV free life. Hope everyone is well, all the best, Adam