POZ Community Forums
Main Forums => Living With HIV => Topic started by: newt on March 23, 2011, 04:51:16 pm
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Soz for cross-posiing from a UK forum but this is kinda key
http://i-base.info/home/changes-to-hiv-drug-prescribing-in-london/
In summary
The London HIV Consortium, the pan-London commissioning group for HIV services, has just outlined the results of the tender process for purchasing HIV drugs for the next 2 years. This is part of an ongoing process to manage the HIV budget within government-imposed restriction on NHS budgets. Over 2 years the group is faced with having to make savings of approximately £10 million to the HIV budget. The HIV budget that has not increased in line with inflation.
This will change the way that some HIV drugs will be prescribed in London.
All drugs will still be available if necessary.
The changes mostly affect people who are starting treatment. Most people who are currently on stable treatment will not have to change. Some people on stable treatment will be asked to switch one or more of their current drugs.
1) People starting treatment
Preferred option:
a) Efavirenz or nevirapine plus coformulated abacavir/3TC (Kivexa)
When there are clinical reasons not to use any of these drugs, alternatives can be used. This includes: drug resistance, side effects, shift work, pregnancy, high viral load (over 100,000 for abacavir) or high risk of heart disease (a greater than 10% risk over ten years, again for abacavir). If abacavir/3TC is not appropriate tenofovir/FTC is recommended.
Alternatives:
a) Atazanavir/r is recommended as the first choice if efavirenz or nevirapine are not appropriate.
b) Tenofovir/FTC is recommended when abacavir/3TC is not appropriate.
c) Other drugs can be used when there is a clinical need. For example, if you have difficulties with atazanavir, you can use alternative protease inhibitors.
2. People currently on stable treatment
a) Some people using protease inhibitor-based treatment that does not include atazanavir will be recommended to switch to atazanavir unless there is a clinical reason to stay on their current combo.
b) People using NNRTI-based treatment will not be asked to switch. People currently using Atripla will not be asked to change, although they do have this option.
3. Use of raltegravir
Raltegravir will still be used mainly by people with triple-class resistance. It can also be used in a limited number of other situations where there is a clinical need. This includes cases where a rapidly reduction of viral load is important (eg pregnancy).
More in article with downloads for nerds.
This I believe applies to Brighton too, and is likely to influence what clinics do outside London.
The spanner in the works may be informed consent (learn it, understand it, use it people), since as far as I can tell in the UK patients have an absolute right to refuse a particular treatment (but not to demand one).
-matt
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Ta. Timely as I got my call from home health today to schedule my drug delivery. Seems reasonable enough given the circumstances, but I hope people don't stay on mind-fuck Sustiva if they can't tolerate the booziness.
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Thanks Matt. Not in London, but got an appointment for test results next week and was expecting another prescription for Truvada and Raltegravir for the following 6 months to be rubber stamped.
I'll think through why the combo works for me in a bit more detail, just in case.
Colin
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Hi,
Unless I am mistaken, I might be the only one whos has recently been initiated (as treatment naive) on nevirapine plus coformulated abacavir/3TC (Kivexa), on this forum. the only 2 pill buddies identified sofar are 'old timers'
Some of the risks (rash, hypersensisitivity...) are better understood today and once people with a risk profile are screened out, it is a viable choice. Those who can stand it just love it (well... I could do without the entire virus shit, of course...). Problem: not everyone can withstand it (rash, etc), so it is matter of good or bad luck.
This regimen is demoted to alternative in the US, and now, London is promoting it to preferred.
One thing that this regimen requires is a close and continuous follow up at initiation, something that socialized health system (like the NHS) may be better at providing than the US system.
Wait and see...
Eric
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Thanks Matt
theyer
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Who normally pays for these meds? Do you guys have a thing which we call ADAP in London to cover for your meds?
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With a few exceptions, if you are resident in the UK your blood tests, Dr's appointments and HIV medication prescribed by a specialist clinic are free and paid for by the National Health Service through general taxation. (There is a charge for most other medical prescriptions in England, depending on how much you earn and your age).
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Who normally pays for these meds? Do you guys have a thing which we call ADAP in London to cover for your meds?
Treatment & care is free on the NHS - http://en.wikipedia.org/wiki/National_Health_Service_%28England%29
Generally, I believe, one has to prove residency to receive free healthcare in the UK. That wasn't my experience when I moved back to England in December (was in the US for 14 years) - I was able to get an appointment at the local sexual health clinic with no problem & without having to provide any sort of papers & got my meds the same visit, for free. It's wonderful, but not enough to keep me here.
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With a few exceptions, if you are resident in the UK your blood tests, Dr's appointments and HIV medication prescribed by a specialist clinic are free and paid for by the National Health Service through general taxation. (There is a charge for most other medical prescriptions in England, depending on how much you earn and your age).
Well said, exactly this. The charge for other scripts is £7 or so, more for odd things like medical wigs.
It is not always perfectly straightforward. Some treatments are argued over, depending on exactly where you live, apparently on clinical grounds but usually cost (eg hep c treatment) or refused because they are too expensive for the benefit the deliver (some cancer drugs, IVF sometimes).
But in general, the NHS, free at the point of care paid for from general taxation, and we borrowed he money off the US to start it up.
- matt
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As long as "clinical need" remains this should not deny anybody there drugs should it?
And am I right in thinking that part off the consortium's role is to broker the price off the drugs bought ? Or is that done at Central Government level?
theyer
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So, in the UK they still label Kivexa as ''heart unfriendly''. ???
oh well, if I stop posting here, you'll know the reason why. ;D
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Under this arrangement, any doc can prescribe any drug if it's clinically needed.
The NHS will pay for it if they produce the evidence (eg resistance, other health conditions, reports and markers of side effects). If they don't provide evidence the provider hospital picks up the tab. And indeed, the hospital can choose to pick up the tab and do what it likes, which I am sure will happen occasionally.
It's a London not a central Government arrangement. Which works like this...
The Consortium agree what they want to buy. Companies, or groups of companies, tender to supply them for a price. Part of the cost risk is therefore transferred to the supplier (for in-contract prescribing), and part to the care provider (for out-of-contract prescribing).
The drugs list is drawn up in consultation with doctors, and a couple of informed patient reps (who have fought a very good corner in lots of long meetings) and is based on guidelines and evidence as well as cost. The overall aim is to maintain quality and contain cost.
This approach is called "therapeutic prescribing" and is not unique to HIV.
Purchasing groups outside London are free to come up with different options (such is the power of localism). It is possible, for example, Atripla will remain a 1st line choice in, say, Manchester, when it's not on offer in London.
- matt
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Thanks very much matt.
t
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You beat me to a reply Matt (and put it much better). ;D
I will see how it works as I'm off to the Doctors in the first week of April in Manchester for a repeat prescription of Truvada and Raltegravir. If I was going to a London clinic then I would almost certainly be shifted on to a PI rather than Raltegravir on these guidelines.
We'll see, but the other changes in the NHS means its only a matter of time before everyone's combinations are looked at a bit more closely for cost I think.
edited as the date of the hopital visit was wrong.
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Treatment & care is free on the NHS - http://en.wikipedia.org/wiki/National_Health_Service_%28England%29
Generally, I believe, one has to prove residency to receive free healthcare in the UK. That wasn't my experience when I moved back to England in December (was in the US for 14 years) - I was able to get an appointment at the local sexual health clinic with no problem & without having to provide any sort of papers & got my meds the same visit, for free. It's wonderful, but not enough to keep me here.
You don't need to prove residency for HIV care, or for using the sexual health clinics. I guess it's a public protection thing. I know of a couple of iillegal immigrants with HIV who have their care sorted. Plus, you don't even have to give your real name when you go the GU clinic.
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You don't need to prove residency for HIV care, or for using the sexual health clinics. I guess it's a public protection thing. I know of a couple of iillegal immigrants with HIV who have their care sorted. Plus, you don't even have to give your real name when you go the GU clinic.
It goes back to ensuring the treatment off STD that the returning military might have after the world wars 1and 2 .
I think
mhtv
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Hi,
Unless I am mistaken, I might be the only one whos has recently been initiated (as treatment naive) on nevirapine plus coformulated abacavir/3TC (Kivexa), on this forum. the only 2 pill buddies identified sofar are 'old timers'
Some of the risks (rash, hypersensisitivity...) are better understood today and once people with a risk profile are screened out, it is a viable choice. Those who can stand it just love it (well... I could do without the entire virus shit, of course...). Problem: not everyone can withstand it (rash, etc), so it is matter of good or bad luck.
This regimen is demoted to alternative in the US, and now, London is promoting it to preferred.
One thing that this regimen requires is a close and continuous follow up at initiation, something that socialized health system (like the NHS) may be better at providing than the US system.
Wait and see...
Eric
I was started on nevirapine and kivexa in January and have not previously been on treatment.
I didn't have any strong feelings about which drugs I should start with, apart from being a bit wary of Atripila. My best friend went s bit loopy on it and had to come off it and I was a little unsure about mixing depression and Atripila.
At the initial appointment, my consultant seemed keen that I make the choice, rather than being steered to one set of drugs or another.
The extra appointments were a hassle and although I thought it wouldn't mind having to take drugs twice a day, but sometimes it is a bit difficult to regulate the times I take the pills.
Speaking to friends, it did seem that a lot of people were surprised that I started with nevirapine and kivexa.
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So, in the UK they still label Kivexa as ''heart unfriendly''. ???
oh well, if I stop posting here, you'll know the reason why. ;D
The jury of the possible abacavir-heart attack connection is still very much out, especially with FDA (http://www.aidsmeds.com/articles/HIV_abacavir_heart_FDA_2581_19965.shtml) analysis and AIDS Clinical Trials Group (http://www.aidsmeds.com/articles/hiv_abacavir_heart_1667_20134.shtml) analyses failing to find any increased risk of heart attacks among abacavir or Epzicom (Kivexa) takers. I wouldn't be surprised if Epzicom, once again, regains its first-tier standing in the United States.
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Hi carousel,
Welcome to the (pretty selective) club of Nevirapine and kivexa users. When I was offered this treatment I was stunned, but now that I have passed the initial steps, I really find it easy enough to take.
This choice was initially offered to me by my doctor, and after reviewing the info available (including on this site) I certainly made it MY choice...
I have collected a bit of recent info and patients experience here:
http://forums.poz.com/index.php?topic=33062.0
While the extra visits (at the beginning only) and 2 x daily can be a pain, stay reassured, the number of visits will go decreasing and once UD for a while, your doc may be confident to offer you to take it once daily.
I have been offered this option and so far so good
If not, the once daily version is going to be approved real soon (has passed all the required tests and trials), anyway...
Cheers!
Eric
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In my view nevirapine is under-rated. This is the only NNRTI I would take at the moment. Shame it's problematic at higher CD4 counts when starting.
- matt
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Thanks Matt. Not in London, but got an appointment for test results next week and was expecting another prescription for Truvada and Raltegravir for the following 6 months to be rubber stamped.
I'll think through why the combo works for me in a bit more detail, just in case.
Colin
Hi Colin. I just got told that I will be going on that regiment Truvada and Raltegravir. I was wondering how you did with handling it in the beginning? I was just diagnosed in Feb. My CD4;529/VL:5000. I thought I was in great shape until today when the Doc said I had 2 resistant strains of HIV and that I was resistant to all the drugs except for these. That my choices have been limited and if I don't follow theses and tolerate them I will be on the fence waiting for something to come along. Thanks Justin
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Hi Colin. I just got told that I will be going on that regiment Truvada and Raltegravir. I was wondering how you did with handling it in the beginning? I was just diagnosed in Feb. My CD4;529/VL:5000. I thought I was in great shape until today when the Doc said I had 2 resistant strains of HIV and that I was resistant to all the drugs except for these. That my choices have been limited and if I don't follow theses and tolerate them I will be on the fence waiting for something to come along. Thanks Justin
Hi Justin.
Bit of a long reply. Well I started on Atripla but it wasn't for me. I felt zoned out on it, but hung on thinking it would get better, but I got a bad rash after about 2/3 weeks. The Doc suggested two alternatives - Truvada + a PI or Truvada + Raltegravir (Isentress).
I chose raltegravir because it had been recently liscensed for first line treatment in the UK and seemed to have very good results in getting viral load down to undetectable quickly and fewer side effects.
My viral load was about 10,000 in Sept 09 when I started meds and fell to 97 in Oct 09 and was undetectable by December. I haven't really had any problems with it, except some gas. It took a while for me to recover mentally after my experience with Atripla. It knocked my confidence a lot. 18 months on I'm very keen to stay on the same meds - I feel much better than before I started treatment.
A quick look in the 'treatment and side effects' forum showed many people found the combo works for them as well, with few side effects.
http://forums.poz.com/index.php?topic=36161.0
http://forums.poz.com/index.php?topic=35598.0
Sorry to hear your news about resistance, coming so soon after diagnosis, it must be a bit overwhelming.
If you're in the UK there are some great charities here who can provide information and face to face support if you haven't tried them. One here in Manchester really helped me when I was diagnosed.
Colin
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Thanks Colin,
I'm in the US. i'm wondering where this Blog is originated from because the times on the blogs aren't Pacific time? Anyway, Thank you for responding back. I have some information missing in my medication line up. I am sure I am going to be taking 3 things but I only came home with information on 2? I have to go back to the doc next week and follow up. I was very overwhelmed and completely devastated on Friday. I got a lot of help from here though yesterday. Matt(newt) helped me tremendously. I see things much better today. I am sure I will have success with what ever medication I am put on. I think since I have a strain from someone that has already used up quite a bit of the medications and is far advanced in his HIV is why I have this pheno type. I also think my body is doing a good job so far fighting it on it's own. So now with your news, I am looking forward to going on these medications. Thank You for sharing and I wish you the best in your continue success with the med's. PS...I'm in SO.CA. I get to London once a year. I'm in Jazz and we perform at Ronnie Scott's.
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If you are taking Truvada and Isentress then in reality you are taking 3 drugs but Truvada is a 2-in-1. Truvada is composed of the component drugs Emtricitabine (Emtriva) and Tenofovir (Viread).
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In my view nevirapine is under-rated. This is the only NNRTI I would take at the moment. Shame it's problematic at higher CD4 counts when starting.
- matt
Why?
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If you are taking Truvada and Isentress then in reality you are taking 3 drugs but Truvada is a 2-in-1. Truvada is composed of the component drugs Emtricitabine (Emtriva) and Tenofovir (Viread).
Thanks. That's kind of what I thought too after I read the information on them? I'll know soon enough..hopefully sooner. Justin
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Thanks Colin,
I'm in the US. i'm wondering where this Blog is originated from because the times on the blogs aren't Pacific time? Anyway, Thank you for responding back. I have some information missing in my medication line up. I am sure I am going to be taking 3 things but I only came home with information on 2? I have to go back to the doc next week and follow up. I was very overwhelmed and completely devastated on Friday. I got a lot of help from here though yesterday. Matt(newt) helped me tremendously. I see things much better today. I am sure I will have success with what ever medication I am put on. I think since I have a strain from someone that has already used up quite a bit of the medications and is far advanced in his HIV is why I have this pheno type. I also think my body is doing a good job so far fighting it on it's own. So now with your news, I am looking forward to going on these medications. Thank You for sharing and I wish you the best in your continue success with the med's. PS...I'm in SO.CA. I get to London once a year. I'm in Jazz and we perform at Ronnie Scott's.
Hellraiser hit it on the button - Truvada is 2 drugs in one pill, so you would be getting 3 in all. Hope you're doing better, the important thing is to take a little time to digest all the information. It's all too easy to feel your being pressurised into a course of action without being in control. All the best and feel free to PM me if you want to vent without it being public.
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Cheers for the post Newt, it's interesting. Have to say a lot of the upcoming NHS reforms have me a bit worried. I've been very fortunate to have excellent care so far, would hate to think that down the line things could get difficult, treatment options refused, that kind of thing.
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The guidelines clearly haven't reached much beyond London for now. Went to my clinic today in Manchester fearing the worst and the Dr hadn't even heard about them ! The old postcode lottery is back I'm afraid. Got my meds (T&I) for another 4 months and have had great results with them again.
cd4 547 vl undetectable 39%.
Yay, ;D
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I was told pretty much the same thing (as in London) by my doctor in Liverpool in January. He also said that he is not permitted to prescribe first-line therapy for anyone who has CD4s over 500. I was all set to start as my previous two results came back in the 300s, but then I went back up to just over 500, so the idea of me starting got shelved again.