| Midlands and East Region: Antiretroviral Therapy (ART) Prescribing Implementation Guidance for Adult and Adolescent Patients Starting and Switching Treatment 2017 [PDF] |
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| HIV medication options in your area: information for and by HIV positive people [PDF] |
The main concern as People living with HIV is that the guideline is not reflective of BHIVA first line ART recommendation . As a patient another concern is the waiting time for MDT decisions to be made, the bureaucracy and how that will impact on patients wellbeing. With the changes happening, my question is who has the duty of informing the patients? How will the impact of changes be monitored? Thanks
Community Feedback collected by community rep: Thanks to those community members……
WE WANT ZERO TOLLERANCE ON SIDE EFFECTS:
Current choices mean that, other than a few weeks when your body adjusts, quality of life should mean someone has the choice to find the most tolerable combination for them. The use of banding in the guidelines in many ways helps this.
However, although it is reasonable in principle for an MDT review when switching to a higher band, perhaps this should be dropped in the case of switching from Band 1 efavirenz to a Band 2 alternative if the reason is side effects. We are asking people to give efavirenz a chance in case it works okay for them – and if it doesn’t, then switching should be easy.
RECOMMENDATION 1): to remove the need for MDT review, even though this is retrospective, if people want to switch from efavirenz first ART due to side effects.
RECOMMENDATION 2): that everyone being prescribed efavirenz first-line is given a leaflet explaining initial side effects but what to do if they persist. To make sure that switching from efavirenz because of side effects should be well publicised to both HIV positive people and doctors as an easy and straight forward option. This should be as easy as someone asking to switch – not requiring months of “wait and see” if there are problems.
2 BIG WORRIES
1) not recommending BHIVA 2015 first-line recommended ART
There is an understanding that many people do very well on Efavirenz. Even BHIVA guidelines seem to be recognising this and recommend making it very easy to switch if there are problems.
2) WHAT IF MDT SAYS NO? It is good that the retrospective MDT review (within two weeks of a switch) notes that this is likely to be a bureaucratic process that agrees to prescribing that a doctor has already made. What happens if there is a problem? What would happen to the individual whose doctor has prescribed meds they have started, if the MDT review doesn’t agree with this (based on costs and not on clinical reasons)?
Comments gathered by community rep from other community members
i) it allows greater flexibility for prescribing combinations that are broadly the same cost.
ii) It allows a wider choice of combinations.
iii) It reduces bureaucracy of multidisciplinary teams (MDTs) for basic prescribing (when London required MDT decisions even to use a boosted PI).
So on all these points I think the guidelines support get positive feedback on this.
It would be helpful for the draft guideline document to be simplified so that patients have a very clear idea of the treatment options that will be available to them when they are considering starting treatment.
The draft guidelines contain many drug options that are not yet commissioned by NHS England. This is a concern if (as in the past) commissioning policies for individual drugs can take a very long time (dolutegravir took over 12 months to be commissioned by NHS England).
Whilst it is pleasing to see the inclusion of Truvada(AF) in the guidelines I do wonder the wisdom of awarding one drug company the lion’s share of therapeutic tender arrangements.
I also note the switch away from the use of ritonavir to cobicistat as a pharmakinetic boosting agent. Other than unit cost, I wonder what other analysis has been undertaken to compare ritonavir and cobicistat. All the studies I’ve seen don’t really show any particular advantage of using cobicistat over ritonavir, perhaps some marginal improvements in cholesterol/ triglyceride levels. I also wonder if kidney function results will be correctly interpreted by busy clinicians in relation to the wider use of cobicistat.
Whilst the use of generic efavirenz cannot be criticised due to the cost benefits – efavirenz is now seen as an ‘alternative’ first line treatment option in the BHIVA treatment guidelines 2015. I would like to see a stronger policy around the prescribing of efavirenz to treatment naive individuals. I welcome the inclusion of shift work as a reason why efavirenz is not a suitable treatment option, there are other work related areas that may require consideration (HGV drivers, public passenger drivers as possible examples) so a through assessment of lifestyle and working arrangements is essential.
I also wonder if the lower 400mg dose of efavirenz will be available for individual patients who report ongoing side effects (dizziness, ‘morning fog’) as a possible maintenance therapy.
I agree with Dan Wheals that it would be good to see some detail relating to prescribing treatment at any CD4 cell count (START Study outcome) as this is currently awaiting the development of a formal commissioning policy, which from past experience (see above) can take many many months. Will individual Trusts / Clinics be at a financial disadvantage where prescribing includes the use of ARV’s at any CD4 cell count?
There are many many more question I could raise, but I think I’ve highlighted some of the more obvious points above.
Finally for now:
It is very encouraging to see in the ‘HIV Clinical Reference Group Best Practice HIV Prescribing DRAFT’ point 10 about the importance of explaining changes to patients. I personally am very happy to take generic cheaper alternatives but had a shock to find my prescription substituted thinking they had given me the wrong meds. It is cost neutral to explain these things and part of the wonderful job clinicians do already but no harm in reminding them how important it is. Especially so for switching meds as in is such a mind boggling thing to understand the difference combinations. Thanks.
Hello again.
Also I don’t see anything on the links that work that talk about 1) Treatment as Prevention (TasP), 2) Reflecting the outcomes of the START study that recommended (as recent BHIVA treatment guidelines 2015 also reflect) that treatment should start at any CD4 count. 3) Pre Exposure Prophylaxis (PreP). I think these are important.
Hello
Im a patient in East of England on Generic Evafirenz and Truvada.
Will you be suggesting switching to EVF and TAF and then what happens in 2017 when Truvada becomes generic?
I dont want to switch too much?