McKinsey & Company
Note: This exhibit is illustrative, describing potential experiences of people with disabilities and HIV. The persona and quotes in this exhibit were developed via data from scientific literature, including the Journal of the International AIDS Society, the American Journal of Preventive Medicine, and the other sources cited in this exhibit.
Meet Namazzi.
HIV example
Namazzi is from Uganda. She is 43 years old and was born with impaired vision. HIV is causing her hearing to deteriorate. She lives with her mother. Namazzi contracted HIV seven years ago and has been receiving treatment at a nearby village. It is becoming harder for her to follow through with treatment as her hearing loss worsens.
Preventive care
Screening and diagnosis
Treatment
Monitoring and follow-up
Source: Hannah Kuper, Phyllis Heydt, and Calum Davey, “A focus on disability is necessary to achieve HIV epidemic control,” The Lancet HIV, April 2022, Volume 9, Issue 4; Tarang Parekh, Gilbert Gimm, and Panagiota Kitsantas, “Sexually transmitted infections in women of reproductive age by disability type,” American Journal of Preventive Medicine, March 2023, Volume 64, Issue 3; Sara Rotenberg et al., “HIV knowledge and access to testing for people with and without disabilities in low- and middle-income countries: Evidence from 37 Multiple Indicator Cluster Surveys,” Journal of the International AIDS Society, April 2024, Volume 27, Number 4
Namazzi was hesitant about preventive measures.
People with disabilities are
25%
less likely to have comprehensive knowledge about HIV.
Women with disabilities are less likely to have comprehensive knowledge about HIV prevention, have knowledge of mother-to-child transmission, or know where to be tested for HIV. They are also less likely to have ever been tested for HIV and know the results when compared with women without disabilities.
“I did not feel comfortable asking my partner to wear protection. My limited sight already makes me self-conscious about sex.”
Source: Sara Rotenberg et al., “HIV knowledge and access to testing for people with and without disabilities in low- and middle-income countries: evidence from 37 Multiple Indicator Cluster Surveys,” Journal of the International AIDS Society, April 2024, Volume 27, Number 4
Namazzi has difficulties navigating the HIV pathway.
less likely to know where they can be tested for HIV.
5–6%
“I also did not want to think about HIV. If people find out, they would think badly of me, and men would try to take advantage of me. I cannot protect myself.”
People with disabilities are also
“I generally do not travel much because of my limited vision, and so I kept postponing the doctor’s visit and kept telling myself it was just a flu.”
less likely to have ever been tested for HIV.
5–10%
Economic vulnerability, physical limitations, and stigma act as barriers for patients seeking testing.
Source: Pierre De Beaurap, Muriel Mac-Seeing, and Estelle Pasquier, “Disability and HIV: A systematic review and a meta-analysis of the risk of HIV infection among adults with disabilities in sub-Saharan Africa,” AIDS Care, 2014, Volume 26, Number 12
Namazzi has difficulty adhering to treatment.
“I avoid going to the doctor. It is a very tiring journey, and it is not easy for me to move around. I cannot navigate the steps of the bus easily and am always scared of being judged or attacked in a crowded place. I have to rely on a friend or family member to take me. That is why I often delay medication refills and checkups.”
Adults with disabilities in sub-Saharan Africa are
more likely to have HIV/AIDS.
1.3×
People with disabilities are less likely to adhere to treatment and often must rely on caregivers to obtain treatment.
Namazzi struggles to keep up with continuing care.
HIV-positive individuals with neurocognitive impairments have a
shorter survival time.
19%
Source: Zaeema Naveed et al., “Neurocognitive status and risk of mortality among people living with human immunodeficiency virus: An 18-year retrospective cohort study,” Scientific Reports, 2021, Volume 11, Number 3738
“I am trying to learn new ways to communicate, but I feel so isolated.”
“Since I have started losing my hearing, it has become harder to understand doctors’ instructions. I am struggling to keep up with my treatment.”
Because HIV is a chronic disease, patients experience fluctuating episodes of illness and wellness, requiring varying levels of care. This adds a layer of complexity to the care of people with disabilities.
