HIV Testing and Treatment Gaps in Disabled Adults

Author: Michigan Medicine: University of Michigan
Published: 15 Feb 2024 - Updated: 14 Jul 2026
Publication Details: Peer-Reviewed | Research, Study, Analysis

Table of Contents:
Synopsis - Definition - Overview - FAQs - Insights, Updates - Related Content

Synopsis

This research analyzes epidemiological data from one of the largest studies examining HIV care gaps among people with intellectual and developmental disabilities. The peer-reviewed study found significant disparities in both testing rates and treatment access, particularly for Black patients and those with autism and co-occurring intellectual disabilities - groups receiving antiretroviral therapy at rates far below national targets. The findings are especially valuable for healthcare providers, disability advocates, and policymakers working to address systemic barriers that prevent appropriate sexual health screening and treatment, revealing that outdated assumptions about asexuality in this population directly contribute to preventable health disparities that impact thousands of vulnerable individuals.*

At a Glance

1 - Among people with an intellectual disability and HIV, 59 percent are Black, though Black people make up only 21 percent of that population.
2 - Only 54 percent of autistic adults with a co-occurring intellectual disability and HIV received antiretroviral therapy, far below the 95 percent national goal.
3 - People with intellectual disabilities and a serious mental illness or substance use disorder were more likely to be diagnosed with HIV yet less likely to receive treatment for it.

Topic Definition

Intellectual and Developmental Disabilities: Intellectual and developmental disabilities, often abbreviated as IDD, refer to a group of conditions that arise during the developmental period and affect intellectual functioning, adaptive behavior, or both, frequently including diagnoses such as intellectual disability and autism spectrum disorder. People in this population may face differences in learning, reasoning, communication, and daily living skills, and they often encounter barriers when engaging with healthcare systems. In the context of HIV care, these barriers are compounded by mistaken assumptions about sexuality that can leave individuals without appropriate testing, education, and treatment.

Overview

People with disabilities are often at higher risk for exposure to HIV due to barriers in engaging healthcare and other systemic factors and are thus considered a priority for prevention and testing efforts. However, these efforts don't always extend to people with intellectual disabilities due to the perception that people with intellectual disabilities are mostly asexual.

Researchers at University of Michigan Health conducted one of the largest epidemiological studies of individuals with intellectual and developmental disabilities to closely examine where the gaps in HIV care lie and found large disparities in care for Black patients as well as for patients with autism and co-occurring intellectual disabilities.

People with autism and an intellectual disability and Black people with intellectual and developmental disabilities received worse care outcomes across the board since they were not tested as often for HIV and had disparities in receipt of HIV-related treatment.

"There is a large misunderstanding that patients with intellectual disabilities are asexual and therefore don't require HIV testing or education," said Tyler G. James, PhD, an assistant professor of family medicine at U-M Medical School and lead author on the study.

"This is not true and not providing proper treatment for this population leads to increases in patients with HIV and the spread of HIV."

Of those who have an intellectual disability and HIV, 59% are Black despite the fact that Black people are just 21% of the population with intellectual and developmental disabilities.

The results of the study found that among people with HIV and intellectual disabilities, 71% were receiving antiretroviral therapy in line with global estimates in the general population.

However, only 54% of autistic adults with co-occurring intellectual disabilities and HIV received antiretroviral therapy, well below the national goal of 95%. This result aligns with past research indicating that autistic people with intellectual disabilities experience worse health and social outcomes.

In addition, people with intellectual disabilities were more likely to receive an HIV diagnosis but less likely to receive antiretroviral therapy if they had co-occurring serious mental illness or a substance use disorder.

This infographic highlights significant disparities in HIV testing and treatment for adults with intellectual and developmental disabilities (IDD). It presents three key findings: Black adults with IDD are over 5.5 times more likely to be diagnosed with HIV than white adults with IDD, and while Black adults comprised only 20% of the IDD sample studied, they represented 60% of those living with HIV. Second, only 54% of autistic adults who also had an intellectual disability and HIV received antiretroviral therapies (ART), despite 71% of all people with HIV and IDD receiving ART overall. Third, people with IDD and serious mental illness or substance use disorders were more likely to be diagnosed with HIV but less likely to receive ART treatment. The infographic uses illustrations of diverse adults, medication bottles, an HIV ribbon symbol, and a medical clipboard with a blood sample to visually represent these statistics, emphasizing the critical need to address healthcare inequities in this vulnerable population - Image Credit: T.G. James, Department of Family Medicine, University of Michigan, Ann Arbor, MI, USA.

James and his team want to use this research to spark national conversation about how to ensure patients with intellectual disabilities and other populations that are underserved are receiving proper care when it comes to HIV testing, treatment and education.

"The more we can expose how ableism works itself into our healthcare, the better we can change to improve healthcare for all patients," said James.

"For people with intellectual disabilities, we want you to know that your experiences are seen, and it is important to continue to advocate for yourself and your sexual health. We are advocating with you."

Additional Authors

T. G. James, Department of Family Medicine, University of Michigan, Ann Arbor, MI, USA. M.S. Argenyi, Department of Psychiatry, University of Iowa Carver College of Medicine, Iowa City, IA, USA. A. Gravino, Rutgers Center for Adult Autism Services, Rutgers, The State University of New Jersey, New Brunswick, NJ, USA. T.W. Benevides, Institute of Public Health and Preventative Health & Department of Occupational Therapy, Agusta University, Augusta, GA, USA.

Funding

Funding for this research provided by NIDLIRR (ACL), under 90RTHF0005 and American Occupational Therapy Foundation Health Services Research Grant (awarded to T. Benevides).

Frequently Asked Questions

NOTE: Researched FAQs by Disabled World (DW)

What is antiretroviral therapy and how does it work?

Antiretroviral therapy is a combination of medications that suppresses the HIV virus, helping people with HIV stay healthy and reducing the likelihood of transmission to others.

Why are people with disabilities at higher risk of HIV exposure?

Barriers to engaging with healthcare, gaps in sexual health education, and other systemic factors can raise the risk of exposure, which is why this group is considered a priority for prevention and testing.

What is the 95 percent antiretroviral therapy goal mentioned in the research?

It refers to a public health target that 95 percent of people diagnosed with HIV receive antiretroviral therapy, a benchmark aimed at controlling the virus at the population level.

How does ableism affect healthcare delivery?

Ableism can lead providers to overlook or dismiss the needs of disabled patients, including sexual health needs, resulting in fewer screenings, less education, and reduced access to appropriate treatment.

What is the difference between HIV and AIDS?

HIV is the virus that attacks the immune system, while AIDS is the most advanced stage of HIV infection, which can often be prevented with timely and consistent antiretroviral therapy.

How can caregivers support the sexual health of people with intellectual disabilities?

Caregivers can advocate for routine testing and education, ensure access to knowledgeable providers, and reject assumptions that disabled individuals do not have sexual health needs.

Insights, Analysis, and Developments

Editorial Note: The persistence of HIV testing and treatment gaps in people with intellectual and developmental disabilities underscores a troubling blind spot in public health practice. When nearly 6 in 10 people with intellectual disabilities living with HIV are Black - despite representing only one-fifth of that population - the disparity reflects both implicit bias and structural neglect. What distinguishes this research is its unflinching documentation that these gaps stem not from medical complexity but from ableist assumptions that disabled people, particularly those with autism and intellectual disabilities, do not have sexual lives worthy of clinical attention. The data demand immediate accountability: healthcare systems must implement routine HIV testing and education for all people with disabilities, challenge false narratives about asexuality, and ensure antiretroviral therapy reaches those currently falling through the cracks, because sexual health is a basic healthcare right that no structural barrier should deny.*

Attribution/Source(s): This peer reviewed publication was selected for publishing by the editors of Disabled World (DW) due to its relevance to the disability community. Originally authored by Michigan Medicine: University of Michigan and published on 15 Feb 2024, this content may have been edited for style, clarity, or brevity.

* Editorial additions by Ian C. Langtree.