The impact of HIV on physical and emotional wellbeing

The police and courts may have a distorted idea of what life with HIV is actually like because they see complainants who are traumatised either by their recent HIV diagnosis, or by the possibility that they have been exposed to the risk of acquiring HIV. However, this is the exceptional extreme of the experience of living with HIV.

The exact experience of life with HIV differs from setting to setting and person to person, but many people find that there is little they are prevented from doing just because they are living with HIV. Most people find that they need a period of adjustment following their diagnosis. But once they learn more about their condition and acquire the necessary skills to enable them to live with a chronic illness, life with HIV can be remarkably normal. In fact, following their diagnosis, HIV-positive people can and do: remain members of families; continue with, or form, new close relationships; have fulfilling sex lives; have children without putting their partners or children at risk of HIV; work; and make plans for the future.

The shock of an HIV-positive diagnosis can be especially traumatic for someone who had not previously believed themselves to be at risk of acquiring the virus. Read more about the impact of an HIV-positive diagnosis on the ability to process information in the chapter: Responsibility.

Regarding the criminal justice implications of HIV-related harm, it is crucial to bear in mind that HIV does not always cause AIDS, and AIDS is not necessarily fatal. Especially with the increasing availability of treatment, HIV infection can no longer be considered to lead unequivocally to disease or death,² and, in fact, in high-income settings – and increasingly in low- and middle-income settings – HIV infection is now considered to be a chronic, manageable disease.³

Without treatment, a large proportion of HIV-positive people live for a decade or more before the virus begins to take a noticeable toll.ⁱ In addition, there is a small proportion of people with HIV who have immune systems that can naturally resist replication of the virus for an indefinite period of time.⁴

Some people may have outdated concepts of the harm caused by HIV because earlier antiretroviral drugs and combinations did not treat HIV effectively. For more than 15 years after AIDS was recognised in 1981, even those people who had access to the best existing antiretroviral drugs did not have a favourable prognosis.

However, the discovery of new classes of antiretrovirals in the late 1990s resulted in dramatic reductions in HIV-related illnesses and deaths in high-income countries. For example, the age-adjusted HIV-related death rate in the United States dropped from 17 per 100,000 people in 1995 to about five per 100,000 people by the end of the decade.⁵ Similar declines were seen in other high-income countries.⁶

Large-scale studies have since provided compelling evidence that if people begin taking antiretroviral therapy (ART), at the recommended time,ⁱⁱ before significant damage has occurred to the immune system, they are likely to go on to have a normal or near-normal lifespan.^7,8,9 However, if people for whom ART is recommended remain untreated – or if they remain undiagnosed for an extended period of time – an increased risk of illness or death remains.

Consequently, the outlook for people with HIV depends very much on whether they are aware of their HIV status and live in places where high-quality health care is available and affordable. Thus, the impact of HIV on physical wellbeing may vary by setting and the individual's ability to obtain HIV-related treatment, care and support.

In resource-limited countries an ongoing public health campaign of unprecedented scope is gradually leading to the increased availability of ART.¹⁰ More than four million people in low- and middle-income countries were receiving ART at the close of 2008, representing a 36% increase in one year and a ten-fold increase over five years.¹¹ For those who do succeed in gaining access to ART in such settings, good outcomes have been observed^12,13 and antiretroviral treatment programmes have documented notable decreases in HIV-related mortality.¹⁴

Treatment access is not the only determinant of the impact of HIV on physical wellbeing. Not everyone responds optimally to ART, and some who do may go on to develop drug resistance that can impact upon further treatment options, although clinically important drug resistance is now seen much less commonly thanks to earlier treatment and better drugs.^15,16,17 In addition, members of disenfranchised groups,^18,19 people living in poverty^20,21 and residents of rural areas may disproportionately fail to benefit from access to testing, treatment and care, particularly in low-income settings.^22,23,24

i. UNAIDS/WHO now note that the average number of years that people living with HIV are estimated to survive without treatment has increased from nine to eleven years: see UNAIDS AIDS epidemic update  December 2007, and associated press releases and other reports, available from the UNAIDS website at www.unaids.org.

ii. National and local guidelines on the recommended time to start treatment can vary. At one extreme, the San Francisco Department of Public Health guidelines now recommend everyone who tests HIV-positive should consider starting immediately: see ‘City Endorses New Policy for Treatment of HIV’ New York Times, 2 April 2010. WHO recommends starting antiretroviral treatment in all patients with HIV who have a CD4 count < 350 cells/mm³, irrespective of clinical symptoms.

As with the impact on physical wellbeing, the impact of HIV on mental/emotional wellbeing is highly variable. Of course, in some ways there are close correlations between the two – i.e., mental/emotional wellbeing could be expected to decline among people who were experiencing increasingly severe health problems in the absence of access to ART.

Contrary to what might be expected by someone who is not up to date on the effectiveness of treatment, many HIV-positive people living in high-income countries report good mental/emotional health in the ‘ART era’.^25,26 Furthermore, several studies have linked HIV-positive people’s use of ART in resource-limited settings to higher levels of mental/emotional wellbeing as well.^27,28,29

Nevertheless, one cannot deny the ongoing health concerns and other hardships and uncertainties that some people living with HIV may experience at times.³⁰ Notably, HIV-related stigma may have a major impact upon the wellbeing of an HIV-positive individual. For example, a year-long study of factors affecting quality of life among 1457 HIV-positive people in five African countries found that study participants’ perceptions of experiencing higher levels of HIV-related stigma correlated with negative changes in self-reported quality of life.³¹