Why do guidelines differ in some countries?
14 April 2012. Related: All topics.
I am very concerned about the discordant guidelines that have been recently updated in the UK and the USA regarding when to start treatment in treatment-naive individuals, like myself.
The UK still recommends to start treatment when CD4<350.
However the USA guidelines have decided that EVERYONE with HIV should start treatment as soon as possible, with special emphasis on those patients with CD4 <500.
My CD4 is about 700 and Viral Load about 1000.
Reading these news has made me very concerned and I feel very uneasy as to what guidelines to follow. I dont understand why would both countries differ so much on their recommendations, unless it is a case where the UK is aiming to save money since HIV Treatment is free on the NHS.
Please help me ease my worries, as I feel like every day that passes I should be on treatment rather than wait till my immune system is irreversibly damaged.
Note: Please see this link for an updated answer to this question.
Thank-you for your question.
The different guidelines in the US and UK are due to different interpretations of study findings and different approaches to healthcare. This can be difficult to understand and it is not surprising that this concerns you.
In the UK treatment is provided on the basis of risk of progression. There is a lot of evidence that starting treatment with a CD4 count of 350 or under reduces the likelihood of becoming ill and developing infections. This has been shown through randomised trials- considered to be the most accurate type of medical trial. The potential for added benefit of starting treatment with a CD4 of 350-500 has not been conclusively shown in this type of trial. Therefore UK HIV experts have decided that the proven benefits of starting treatment earlier do not outweigh the costs and potential negative effects.
In the USA they have a different approach to treatment. the USA guidelines have always been to start treatment at a higher CD4, even when the toxicity of drugs was much higher and potentially more damaging than the virus itself. The current guidelines in the USA are based on observational data from cohort studies. These look at databases of information stored about people taking HIV treatment. These have shown some potential benefit of starting treatment earlier. The data isn’t conclusive however, which is why the UK guidelines remain the same.
A second reason why the USA guidelines contain this higher recommended starting CD4 is because of the healthcare system in the USA. Because health insurance providers would not give treatment to people who were not recommended it by the guidelines there is this higher threshold- meaning that those wishing to start earlier would be given that possibility.
This is obviously something you are concerned about. If you really want to start treatment now, but your clinic has refused to do this, you have two options. The new UK guidelines state that treatment can be given to people with higher CD4 counts in order to reduce the possibility of transmission. This is because of new evidence which shows that having an undetectable viral load (under 50) are much less infectious. Therefore if you were to tell your clinic that you are very concerned about transmitting HIV to a sexual partner, and that this worry was affecting your quality of life in a major way, then they would be able to give you treatment in line with the guidelines.
A second way which you may be able to access treatment is through a medical trial. There is a study currently underway which is looking to answer the question of whether starting treatment at a higher CD4 count will have long term health benefits. This is called the START trial. For more information about the trial please take a look at this link.
As your CD4 count is so strong (well above 500) and your viral load is low there is no strong evidence that you should be worried about not being on treatment. The UK guidelines are based on an interpretation of data that may or may not prove to be right. In the past, guidelines have often got this question wrong. If, having looked at the advantages and disadvantages your decide that you want to start, then in the UK you should be able to do this. Please get in touch with us if your clinic does not give you this option in case we can help.
This answer was updated in January 2016 from an answer first posted in April 2012.