Written by Robert
Your HIV healthcare team
In the UK, a large network of hospital-based HIV clinicians will support you throughout your HIV journey. When we use the term ‘clinician’ or ‘Healthcare Professional’ (HCP) we are not just talking about your doctor, but rather the whole multi-disciplinary team. This includes the nurses, pharmacists, psychologists, health advisors and dietitians you will come into contact with.
The relationships you build with the HCPs responsible for your care will be some of the most important and potentially durable of your whole life. People who are more involved in their treatment decisions feel more satisfied with their care, worry less about side-effects and better understand how antiretroviral therapy (ART) can benefit them.1 So, it is important to find the right clinic and team to support you.
Thriving with HIV – what it means for you versus what it means for your HCPs
Success for you
Success means different things to different people. Is it… being happy? Getting the job you wanted? Raising a family? Or is it something completely different?
It’s the same with HIV treatment. If we asked five people living with HIV what treatment success meant to them, we may well get five completely different answers. Here are some examples of goals people might have for their HIV treatment:
- To feel better
- To be undetectable (in terms of viral load)
- To experience fewer side effects
- To reduce the chances of passing on the virus
- To only have to take one or two tablets a day
In one survey, 9/10 people living with HIV (987/1,111) felt that HIV treatment would improve their quality of life.2
Most people in the UK start ART within three months of diagnosis.3 After discussing the pros and cons of a number of different drug combinations, you’ll come to a joint decision with your HCPs.
Success for your HCPs
HCPs often hold slightly different views about what treatment success means, compared to people living with HIV. They are typically trained to assess your symptoms and evaluate the results of the blood tests carried out. These two things guide the clinical decisions they make.4
HCPs tend to be more focused on the numbers. They look at your regular blood test results to determine how well you have responded to the treatment. These tests show the reduction in your viral load (the levels of the virus detectable in your bloodstream) and the improvement in your immune system, which is assessed by measuring your CD4 cell count. CD4 cells are white blood cells that fight off infection, but their numbers can be reduced by the HIV virus. The lower your CD4 cell count is when you start treatment, the more anxious your HCPs may be to improve your health quickly to keep you out of hospital.4
Your viral load will be tested at each clinic visit. HIV viral load testing became available in clinics in the mid-1990s after studies found an association between higher viral loads and faster loss of CD4 cells and development of AIDS.5 Achieving an ‘undetectable viral load’ has become the ‘holy grail’ of HIV treatment ever since. Being ‘undetectable’ profoundly reduces the likelihood of disease progression.4 Taking ART as prescribed and becoming ‘undetectable’ also helps to prevent drug resistance and means you cannot transmit HIV to your sexual partners.6–8
These clinical markers are important, but you may be more concerned about how the medicines make you feel. For example, getting a good night’s sleep, seeing improvements in your energy levels and maintaining a good body shape can all make you feel more successful when it comes to your treatment.
Going beyond undetectable
Despite its obvious importance, there is more to being healthy with HIV than having an undetectable viral load.
Providing we are diagnosed in good time and stick to an effective ART regimen, we now have the same life expectancy as HIV-negative people.9 This means that the same healthy living advice given to the general population also applies to those of us living with HIV. Trying your best to eat healthily, stop smoking, exercise regularly, maintain a healthy body weight, and moderating your alcohol and recreational drug intake will help your mental and physical wellbeing.9,10
Over the past 5–10 years, there has been wider discussion within the HIV community about ‘going beyond undetectable’ or ‘beyond HIV suppression’. These conversations reflect the wide range of concerns many of us living with HIV still have despite effective treatment, e.g:11
- 1 in 4 people living with HIV think that better training of doctors would counter the stigma we often face,2 so what forms of stigma do we still face in the healthcare setting?
- Can we be ‘out’ about our HIV status without fear of judgement and vilification?
- Does our home environment impact our experiences with HIV?
- Is our mental health being looked after as well as our physical health?
Some of these key issues not only affect how well we can navigate living with HIV, but also impact how likely we are to start ART and how well we can manage treatment long-term. For example, a person in unstable housing may choose to defer treatment. Alternatively, if someone feels anxious or depressed, they might struggle to take their treatment as prescribed.12
Making the most of your HCP appointments
It is likely that once you are taking effective ART, you will only need to visit your clinic once or twice a year. Some clinics only allow for 10–15 minutes per consultation, so it is worth being prepared. This will help you to be an active participant in your care and get the most from time with your Healthcare Professionals.
It is very easy to forget what has been going on with your treatment during the time between clinic visits so writing a list of your questions may be a good idea.
Your doctor may not always have enough time to answer all of your questions in the detail you want. But there are many other people in your healthcare team that you can turn to for more information and support.
Your mental wellbeing is just as important as your physical health
Over half of people living with HIV and taking ART may be depressed.13 It may be that your HCPs are so focused on getting your viral load to an undetectable level, that they don’t ask about your mental health. It is important that you feel comfortable enough to start these conversations with your HCPs.
It may be that the HIV clinic is not the appropriate place to deal with the issues you raise, but your HCP will be able to guide you in the direction of other professionals who can help.
At your appointments, it’s always a good idea to talk about how your health has been, how you’re feeling in yourself and how you’ve coped with taking your medicines. Open and honest conversations with your HCP will give them the best picture of your overall health. For example, three quarters of people living with HIV worry about the long-term effects of their medication,2 something your HCP can help you with. Or perhaps you are concerned about your family’s medical history. Again, this is something to bring up with your healthcare team so they can discuss possible prevention strategies with you if you are genetically at greater risk of developing certain health conditions.
You are the secret of your own success
Being informed and understanding what is going on within your body is the best way to get the most from your HIV care. Remember, you are surrounded by experts. Utilise their strengths and knowledge for your benefit, so that you can live your best life with HIV.
If you have recently started antiretroviral therapy, here is where you can find out more about long-term HIV treatment.