Author Topic: UK NHS and scripting meds (Read 4913 times)

NLEWLAD · « **on:** February 20, 2008, 04:06:20 pm »

after reading the news story about starting meds eairlier, i would like to start meds when my cd4 drops below 450

in the uk we (thankfully) do not have to pay for meds they are paid for by our national health seervice,

my question is as the nhs pays for my treatment do i have the right to ask to go on meds when i drop to 450, or am i at the mercy of my doc who at the last time i asked about meds said she was under instruction to script when cd4 is around 200

newt · « **Reply #1 on:** February 20, 2008, 05:32:44 pm »

UK guidelines (British HIV Association, 2006) state:

"It is recommended that the majority of people should initiate therapy with CD4 counts between 200 and 350 cells/mL. Within this range, the time of initiation in a particular individual may be based upon patient preference, the rapidity of CD4 decline, symptoms, viral load, and co-morbidity such as hepatitis C infection."

The recommendation in the 2008 update will push starting more in favor of the 350 level, rather than the 200.

It is unlikely that you will get combo at a CD4 above 350 at present, unless you are becoming ill from HIV, ie getting symptoms or opportunistic infections, or are part of a study.

However, there is no good reason why you shouldn't start at 350 if that is your preference.

Instruction to script when CD4 is around 200, yes these do exist at some clinics, and (1) are legal but not decent as far as guidelines go (2) are sometimes driven by cost considerations (to be resisted).

Anyhow, by the time you are close to starting treatment, it is likely the guidelines will be different again, and also the treatment used.

If at any time you have problems getting the treatment the way yo want it, there are people around who can advocate on your behalf. Please don't be shy, use them.

- matt

NLEWLAD · « **Reply #2 on:** February 20, 2008, 05:44:41 pm »

thanks for your reply matt,

what do you think my cd4 at time of sero-converion was 1273 why should i wait till 350 and this new research as posted on the aidsmeds news today reveals that it is better to start treatment sooner than later,

the imune system is comprimised when it goes below 500 so i defo wana start at 450?

newt · « **Reply #3 on:** February 20, 2008, 05:58:06 pm »

Here's the article:

Starting Treatment With Higher CD4s Cuts Death Rate
http://www.aidsmeds.com/articles/hiv_aids_treatment_1667_14063.shtml

"People who start antiretroviral treatment with CD4 counts above 350 have the lowest risk of disease progression and death compared with people who start at CD4 counts below 350, say the authors of a study published in the February 1 issue of the Journal of Acquired Immune Deficiency Syndromes (JAIDS) and reported by AIDSmap. The study lends further support to a trend, marked by recent changes to U.S. HIV treatment guidelines, suggesting that antiretroviral therapy should be started earlier than had been previously recommended."

Yes, you have a point.

The limitations of the study are that it is a cohort study, and therefore contains historical factors which are not well controlled.

For example, many people starting treatment at CD4 200 may (for example) come from an age when combo was horrid and have been ambivalent about the drugs perhaps leading to poor adherence therefore worse outcomes -- we don't know. Or perhaps people who started earlier were better organised and had generally healthier lives -- we don;t know. Only a prospective randomised study could answer these questions.

So a little caution about the strong message.

More important is that "the risk of disease progression in people who started treatment at CD4 counts above 350 was lower than in people who started treatment at CD4 counts between 200 and 350" which lends much weight -- as reflected in US and European guidelines -- for starting at or before CD4 cont of 350.

The study does not, importantly, say much about side effects or toxicities from drugs. There is always a trade-off between benefit of treatment and disbenefit from the drugs. Starting at 350 rather than 500 means (on average) an extra couple of years off drugs. Two years, eg, without the bad effects on lipids, liver, kidney etc that can happen from meds.

If you really want to start at 450, stick to your guns, there will be a doc at a clinic near you who will be prepared to do this (may mean going to Liverpool or Manchester though).

- matt

NLEWLAD · « **Reply #4 on:** February 20, 2008, 06:04:30 pm »

matt you see well informed, and i would like your opinion in a few years when i am at 450 i will also take into consideration my vl

i dont know if you know i am also co-infected with syphillis and herpes.

i just carnt see the point of going into the danger zone before i start meds.

i know i will adheere to the treatment and i dont have any problem takeing pills, i have even already chose my prefered combo kivexa and kaletra as abicavir is a prefered option in the uk for firstl line treatment

i am going to refuse sustiva due to the psycotic element in the sides, i have a history of depreesion.

simon

newt · « **Reply #5 on:** February 20, 2008, 06:14:20 pm »

Good to be prepared...

The confections prob not important in terms of starting unless your herpes goes out of control

Kivexa currently gets equal billing with Truvada for first-line combinations. Kaletra, well-known and standard.

It will be interesting to see how similar/different meds recommended for first-line therapy are from the currently used combos when (if) you come to the point of starting therapy.

- matt

NLEWLAD · « **Reply #6 on:** February 20, 2008, 06:19:01 pm »

matt i see from your signature your questioning your firstline treatment

whats your prefereance 2 nukes and 1 none nuke or 2 nukes and a pi?

newt · « **Reply #7 on:** February 20, 2008, 06:26:50 pm »

You can argue the different pros and cons of each type of combo, non-nuke-based and boosted PI-based.

Both work.

The important thing is to have at least 3 active drugs from at least two different classes.

- matt

NLEWLAD · « **Reply #8 on:** February 20, 2008, 06:32:00 pm »

so matt your preference is kivexa and truvada?

i thought that kivex and tru are in the same class

the recomendation for firstl line treatment in uk is sustiva and kivexa?

you need to take kivexa and either sustiva or a pi

NLEWLAD · « **Reply #9 on:** February 20, 2008, 06:36:13 pm »

matt did you edit your last post or was i seeing things

newt · « **Reply #10 on:** February 20, 2008, 07:08:29 pm »

Ahem

Kivexa is abacavir and 3TC in one tablet. Truvada is tenofovir and FTC in one tablet. All of these are nukes

So, one of Kivexa of Truvada -- that makes 2 nukes, 2 drugs from 1 class of drugs

Then you have to add EITHER a non-nuke (Sustiva, Viramune) OR a boosted PI (Kaleltra, boosted Telzir, boosted Reyataz, boosted Invirase) -- that adds 1 more drug from 1 additional class of drugs

Total combo = 3 drugs from 2 classes of drugs

As per the guidelines:

2 nukes + a non-nuke

or

2 nukes + a ritonavir-boosted PI

Is this now clear?

- matt

NLEWLAD · « **Reply #11 on:** February 20, 2008, 07:13:00 pm »

yea i was always clear on my pref choice of meds

kivexa and kaletra a powerful and proven combination (lol thats saying from my work nothing to do with meds )

Ann · « **Reply #12 on:** February 21, 2008, 10:08:52 am »

Quote from: newt on February 20, 2008, 05:58:06 pm

If you really want to start at 450, stick to your guns, there will be a doc at a clinic near you who will be prepared to do this (may mean going to Liverpool or Manchester though).

I don't know of one doctor in Liverpool who would start a patient off at 450 - unless they were having hiv related problems. I know mine certainly wouldn't.

Ann

NLEWLAD · « **Reply #13 on:** February 21, 2008, 05:16:18 pm »

Ann i understand your point but why do us brits not have a say in our treatment, as reported in aidsmeds news there is good research to support starting meds above 350 is beneficial to longterm hiv/aids infections

i just carnt see the point of going into the danger zone - in some countries going below 200 is classed as having aids - its stupid to wait till 200

newt · « **Reply #14 on:** February 21, 2008, 05:31:21 pm »

You have the makings of an activist...

Ann raises a good point, but there will be a doc somewhere in the UK who will treat you at 450, even if you have to travel. It may take a bit of pushing but nowt wrong with that. In addition, research is consitently pushing the "best" threshold up, so I wouldn't be surprised if, when you come to start treatment, the argument is less difficult.

Regardless of guidelines the RIGHT time to start treatment is when the person who will take the drugs is ready and willing, above 350, below 200, don't matter.

- matt

NLEWLAD · « **Reply #15 on:** February 21, 2008, 05:59:38 pm »

thanks matt,

well to be honest when i accepted i was gay i went on the marches in manchester and london for gay acceptence

i have been banned from fitlads.net for complaining about hiv abuse ( have now been reinstated because i kicked up a fuss)

i could see myself as a hiv actavist

just because the nhs (luckily) pays for our meds why the hell do we have to be on deaths door before they will script if i had the cash to go private then there would be no problem

we have all paid our national insurance payments and deserve to get the best possible treatment availabile

not wait till we may get and oi or at the stage when our imune system is weakend to the point that we are diagnosed with aids

i do love the nhs and i am totally proud that we have the best healthcare system in the world but it does have its flaws.

i am being stupid i know, i am so lucky to live in a great country that supports hiv.

but as a person living with hiv i do believe that when our cd4's drops below 500 (the lowest count that is normal) we should have the right to instruct our doctors to script meds

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Author Topic: UK NHS and scripting meds (Read 4913 times)