The impact of HIV on physical and emotional wellbeing

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Clinicians and scientists who work in the field of HIV/AIDS have been witness to a transformation in disease management that is virtually unprecedented in the history of medicine. Notably, antiretroviral drugs now enable HIV-infected individuals to survive indefinitely with good quality life. In contrast, people who became infected by HIV during the 1980s and early 1990s commonly suffered rapid disease progression and died.

Professors Julio Montaner and Mark A Wainberg, current and former Presidents of the International AIDS Society, 2008.1

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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

The impact of HIV treatment

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 observed12,13 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 poverty20,21 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.

The impact of HIV-related stigma

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

References

  1. National Post Success in the fight against AIDS has bred complacency. 14 May, 2008
  2. United Press International HIV Life Expectancy Now Normal. 25 August, 2006
  3. US Government Chronic Manageable Disease. Available online at: http://aids.gov/hiv-aids-basics/diagnosed-with-hiv-aids/overview/chronic-manageable-disease/, accessed 25 June, 2010
  4. Okulicz JF et al. Clinical outcomes of elite controllers, viremic controllers, and long-term nonprogressors in the US department of defense HIV natural history study. Journal of Infectious Diseases 200 : 1714-1723, 2009
  5. US Centers for Disease Control and Prevention Trends in Annual Age-Adjusted Rate of Death due to HIV Disease, United States, 1987−2006. Available online at: http://www.cdc.gov/hiv/topics/surveillance/resources/slides/mortality/slides/mortality4.pdf, accessed 30 July, 2010
  6. Mocroft A et al. Changes in the cause of death among HIV positive subjects across Europe: results from the EuroSIDA study. AIDS 16(12): 1663-1671, 2002
  7. Harrison KM et al. Life expectancy after HIV diagnosis based on national surveillance data from 25 states, United States. J Acquir Immune Defic Syndr 53:124-30, 2010
  8. Lewden C and the Mortality Working Group of COHERE Time with CD4 count above 500 cells/mm3 allows HIV-infected men, but not women, to reach similar mortality rates to those of the general population: a 7-year analysis. Seventeenth Conference on Retroviruses and Opportunistic Infections, San Francisco, abstract 527, 2010
  9. Van Sighem A et al. Life expectancy of recently diagnosed asymptomatic HIV-infected patients approaches that of uninfected individuals. Seventeenth Conference on Retroviruses and Opportunistic Infections, San Francisco, abstract 526, 2010
  10. World Health Organization Universal access by 2010. www.who.int, Date accessed: 14 April 2010
  11. WHO Towards universal access: scaling up priority HIV/AIDS interventions in the health sector. Geneva, 2009
  12. Nash D et al. Long-term immunologic response to antiretroviral therapy in low-income countries: a collaborative analysis of prospective studies. AIDS 12;22(17):2291-302, 2008
  13. Sanne IM et al. Long term outcomes of antiretroviral therapy in a large HIV/AIDS care clinic in urban South Africa: a prospective cohort study. J Int AIDS Soc 17;12:38, 2009
  14. UNAIDS 2008 report on the global HIV/AIDS epidemic. Joint United Nations Programme on HIV/AIDS (UNAIDS), Geneva. (www. unaids.org/en/KnowledgeCentre/HIVData/GlobalReport/2008, 1-357), 2008
  15. Gill VS et al. Improved virological outcomes in British Columbia concomitant with decreasing incidence of HIV type 1 drug resistance detection. Clin Infect Dis 50: 98-105, 2010
  16. UK Collaborative Group on HIV Drug Resistance and UK CHIC Study Group Long-term probability of detecting drug-resistant HIV in treatment-naïve patients initiating combination antiretroviral therapy. Clin Infect Dis 50: 1275-85, 2010
  17. Fox MP et al. High rates of survival, immune reconstitution and virologic suppression on second-line antiretroviral therapy in South Africa. J Acquir Immune Defic Syndr, (advance online publication), 2010
  18. Ball AL Universal access to HIV/AIDS treatment for injecting drug users: keeping the promise. Int J Drug Policy 18: 241-5, 2007
  19. Chakrapani V et al. Barriers to free antiretroviral treatment access for female sex workers in Chennai, India. AIDS Patient Care STDS 23: 973-80, 2009
  20. Ojikutu B et al. Provision of antiretroviral therapy in South Africa: unique challenges and remaining obstacles. J Infect Dis 196: (Suppl 3:S)523-7, 2007
  21. Tsai AC et al. Socioeconomic disparities in access to HIV/AIDS treatment programs in resource-limited settings. AIDS Care 21: 59-63, 2009
  22. Egger M et al. Antiretroviral therapy in resource-poor settings: scaling up inequalities? Int J Epidemiol 34: 509-12, 2005
  23. Jones PS On a never-ending waiting list: toward equitable access to anti-retroviral treatment? Experiences from Zambia. Health and Human Rights 8: 76-102, 2005
  24. Loewenson R, McCoy D Access to antiretroviral treatment in Africa. BMJ 31: 241-2, 2004
  25. Chan KS et al. Combination antiretroviral therapy and improvements in mental health: results from a nationally representative sample of persons undergoing care for HIV in the United States. JAIDS 33: 104-111, 2003
  26. University of Cincinnati Academic Health Center Some patients diagnosed with HIV experience improved outlook on life. Press release, 25 November, 2009
  27. Beard J et al. Economic and quality of life outcomes of antiretroviral therapy for HIV/AIDS in developing countries: a systematic literature review. AIDS Care 21: 1343-56, 2009
  28. Patel R et al. Quality of life, psychosocial health, and antiretroviral therapy among HIV-positive women in Zimbabwe. AIDS Care 21: 1517-27, 2009
  29. Wouters E et al. State of the ART: clinical efficacy and improved quality of life in the public antiretroviral therapy program, Free State province, South Africa. AIDS Care21: 1401-11, 2009
  30. Remien RH, Mellins CA Long-term psychosocial challenges for people living with HIV: let's not forget the individual in our global response to the pandemic. AIDS 21: (Suppl 5:S)55-63, 2007
  31. Greeff M et al. Perceived HIV stigma and life satisfaction among persons living with HIV infection in five African countries: a longitudinal study. Int J Nurs Stud 47: 475-86, 2010

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A writer and advocate on a range of HIV-related issues, Edwin has a particular specialism in HIV and the criminal law. He works with national and international HIV organisations, including the International AIDS Society, GNP+ and UNAIDS, as well having as a long association with NAM as a writer on this topic and as the former editor of HIV Treatment Update. To visit Edwin's blog and respond to posts click here.

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.