New NAT research into fluctuating symptoms of HIV

There is no doubt that as HIV treatment options have increased and improved, so has the length and quality of life of people living with HIV. But there is also no denying that many people on effective treatment continue to live with HIV-related health problems, including some which are a direct side-effect of their drugs.  

These symptoms and side-effects often vary, sometimes unpredictably, over time.  For this reason HIV is sometimes referred to as a ‘fluctuating condition.’ However, there has been very little research into how people with HIV experience this fluctuation and the impact it has on their lives.  

NAT became aware of this gap in research when we were asked to be part of a working group on how disability benefits assessments could be made fairer for people with fluctuating conditions. The working group, which also includes charities representing people with MS, ME, Parkinson’s and arthritis, was one of the recommendations of the first independent review of the work capability assessment (WCA), chaired by occupational health expert Professor Malcolm Harrington.  

We already knew that people with HIV with fluctuating symptoms were not being accurately or fairly assessed by the WCA, the eligibility test for Employment and Support Allowance (which replaces Incapacity Benefit). However, to develop credible recommendations for changing the WCA, we needed to hear a much wider range of experiences of fluctuating symptoms and side-effects of treatment among people with HIV.

Survey findings
An online survey asking about these experiences, created by NAT and promoted by other HIV organisations and websites, yielded 265 responses from people living with HIV. The majority of respondents reported at least one fluctuating symptom in the previous month.

The survey asked about five specific types of symptom and side-effect. Of these, the most commonly reported fluctuating symptoms was fatigue, exhaustion or lack of energy (57%); followed by depression or anxiety (55%), gastro-intestinal (GI) problems (such as nausea, vomiting and diarrhoea) (48%), and insomnia or difficulty sleeping (46%), and neuropathy (nerve pain) (33%). There were also significant proportions of respondents who said that they had one or more of these symptoms on a constant basis.
Some participants also reported other variable symptoms, which most commonly included joint pain, muscle pain, skin sensitivity/rashes/fungal infections and migraines. Less frequent conditions mentioned included lipodystrophy and vertigo.

One of the most striking findings of the survey was the number of respondents who reported multiple symptoms. Even putting to one side the additional conditions and symptoms noted by respondents in their free text responses, there was a huge amount of cross-over within the five common symptoms which the survey focussed on.

‘Fatigue was the most commonly reported fluctuating sympton’

For example, 70% of people with fluctuating fatigue also experienced fluctuating depression and anxiety. 68% of people with fluctuating neuropathy also had fluctuating GI problems. Insomnia was a concern for 57% of people with fluctuating depression and anxiety.

An unseen disability
These problems will be very familiar anyone who knows about the health impacts of HIV and the common side-effects of treatment. However, they would not fit many people’s idea of what it means to have a disability or serious long-term condition.  They are, on the whole, invisible, and can be socially awkward to explain and deal with.

Fatigue, especially, crops up again and again in the survey findings. It was the most commonly reported fluctuating symptom and is also a very common additional symptom for someone who is already experiencing fluctuation in another area, such as depression or insomnia. It is also incredibly hard to explain to someone who doesn’t experience it, and it can be easily misunderstood. A good definition, used by i-base in their guide to treatment side-effects is ’a general feeling of tiredness that does not really go away, even after someone has been able to rest’. This sort of tiredness is hard to explain to employers and even family and friends, who may have their own opinions about what it is like to be ‘really tired.’

People with HIV who are living with poorly understood fluctuating symptoms like fatigue find that the reactions of others can be as hard to deal with as the health problem itself. One respondent told us that he was consciously ’not going out, as I don’t want friends to think I am not enjoying myself when I am just very tired.’ The stress of managing people’s reactions to fluctuating symptoms can lead to people becoming isolated.

Unpredictable gastro-intestinal (GI) problems resulting from HIV and treatment are particularly hard to manage in social settings, and can be a real barrier to work and participation in other activities. Fear of unpredictable diarrhoea stops some people from leaving the house; with one respondent saying ‘it is difficult to go places where I do not know if a toilet will be nearby enough.’ Even when GI symptoms are more reliable, it is not easy to accommodate them within the demands of a work day which involves a significant commute, or meetings, or a constant customer-facing role.

Impact on work and daily life
Under the Equality Act, employees with HIV have the right to ask their employer for reasonable adjustments which will allow them to do their job while managing their disability (HIV is defined as a disability from the point of diagnosis). This could involve a later start time or the option to work from home when symptoms or side-effects are playing up.

However, there was still a perception among survey respondents that they would need a ’very understanding‘ employer to be able to find or stay in work while living with fluctuating symptoms and side-effects of HIV treatment. It is also the case that in order to access reasonable adjustments, the employee must first feel confident in discussing their health and symptoms with their employer. As well as concerns around disclosure of HIV status, there is the lingering concern that fluctuating symptoms will not be taken seriously by employers.  

”Many people living with HIV still experience health problems that can have a debilitating impact on their lives.”

In particular, one respondent commented; ‘Work situations can be very complicated and awkward - I often tell my employers my status but people often think you are ‘taking advantage’ when you have a day off (perhaps due to fatigue or a particularly bad night or just a general feeling of being unwell) only to return the next day seemingly happy and healthy on the outside. This makes me feel guilty about putting my health first and I will often go to work when I know that I really should rest - feeling guilty about resting and recovering is a big part of my life!’

It’s not only in the work context that people with fluctuating symptoms of HIV are staying quiet about their health. An important finding of the survey was that many would love to talk to their HIV clinical care team about these symptoms and side-effects, but that they feel that no one is interested. One respondent said that ‘generally, doctors don’t care’.

From respondents’ comments it is clear that some people are doing less well, despite being on treatment, and feel that they have been side-lined by the more dominant narrative that people with HIV now live fit and healthy lives. Our expectations of health outcomes for people diagnosed and treated in time today are very high compared to a decade ago. But this should not come at the expense of remembering that many people with HIV – whether long-term survivors, someone who has has been diagnosed late, or someone who is struggling to adapt to their new treatment – still experience health problems that can have a debilitating impact on their lives.

Recommendations
One of NAT’s key recommendations coming out of the research is that people with HIV should have more opportunities to discuss any fluctuating symptoms or side-effects they are experiencing with their doctor, nurse or health advisor. We are also continuing to work to ensure that benefits assessments like the WCA, and the assessment for the new Personal Independent Payment (PIP), are better designed so that they can more accurately assess the impact of fluctuation. The same principle should also apply in social care assessments.

We are also calling for more, clinical, research into this area. One of the main reasons that there isn’t a lot of clinical research into fluctuation is that it is very hard to collect reliable data about symptoms that are occurring periodically over weeks and even months. However, given the significant impact of fluctuating on people’s lives, it is crucial to find out how prevalent these symptoms are.  

NAT’s report ‘Fluctuating symptoms of HIV’ can be downloaded at www.NAT.org.uk