Q: I’ve been diagnosed with HIV: am I going to die?
A: We’re all going to die sometime! Seriously, though…HIV today is a manageable, chronic illness, not a death sentence. If you have been diagnosed with HIV recently and promptly, and are otherwise well (that is, your immune system has not been badly damaged due to HIV having been undiagnosed for a long time). then providing you take HIV treatment as required – take your HIV drugs every time, on time – your life expectancy will be virtually the same as the rest of the population. Note that there is as yet no cure for HIV, so you will need to take HIV drugs for the rest of your life. Today’s HIV drugs are much better than they used to be – in most cases, you need to take one or two pills, once or twice a day. Also, the drugs today are very easy to tolerate – they do not have many (if any) side effects, and those that do occur often go away after the first few weeks of being on the drugs. It is vital, though, to take the drugs every time, on time – otherwise, drug resistance may develop, and the HIV treatment will become much more complex.
Q: I’ve been diagnosed with HIV: when should I start treatment?
A:2015 update – New treatment guidelines have been published by both the British HIV Association (BHIVA) and the World Health Organization (WHO). Both clearly recommend that all people living with HIV should start HIV treatment as soon as is practical.
The discussion below (under “older answer”) shows that previously, treatment was delayed until the CD4 count had fallen to a certain level. This is now no longer the case. In the UK, anyone living with HIV who understands the commitment of treatment and is ready to start should receive treatment, regardless of CD4 cell count.
Doctors should talk to their patients about the evidence showing that people who begin HIV treatment earlier have better long-term health outcomes than people who delay treatment. They should also discuss the evidence showing that treatment also substantially reduces the risk of passing HIV on to other people. Clinically, then, there are advantages to starting treatment as soon as possible. The decision to start treatment, however, rests with the person living with HIV.
[Older answer – The UK guidelines for the treatment of HIV suggest that if you are otherwise well, and your CD4 count is about 350, then you need not start HIV treatment. The guidelines suggest starting treatment as soon as you feel able to after your CD4 count has fallen below 350. There are circumstances, though, where even if the CD4 count is greater than 350, treatment should be started – this is usually connected to co-infection with other diseases. There is a lot of debate about when to start treatment, and research continues to be done in this area. As the evidence grows, then the guidelines may be revised. Some treatment advocates suggest that treatment should be started immediately, irrespective of the CD4 count. This is because it is thought that any level of HIV replicating in the body will have a negative impact on the immune system. Evidence for this view is at the moment unclear.
There may be another good reason for starting treatment immediately, no matter what your CD4 count is. Recent studies have shown that the risk of onward transmission of HIV is virtually zero if your viral load count has been non-detectable for 6 months or more. So, if you have concerns or anxieties about the risk you pose, in terms of passing HIV n to someone else, these can be reduced by starting treatment as soon as possible. This is referred to as Treatment as Prevention (TasP). You should be able to discuss this option with your clinical team.]
Q: I’ve been diagnosed with HIV: who should I tell?
A: This is a difficult area, and there is no single answer – everybody’s needs and circumstances will differ. Deciding who to tell – and when and how – is a difficult thing, and requires a lot of thought. Do not rush into telling anyone – think things through. It may be helpful to review the section on disclosure, or to talk with someone from NYAA.