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Adults With Intellectual, Developmental Disabilities at Risk for Disparities in HIV


Different levels of risk for HIV exist in the different subtypes of intellectual and developmental disabilities.

Patients with intellectual and developmental disabilities (IDD) are at a unique risk for disparities related to HIV, with different subtypes of IDD posing different risks, according to a study published in the Journal of Intellectual Disability Research. The findings suggest prevention programming should be considered in patients with IDD.

IDD is any condition that has affected the cognitive, physical, or psychosocial development of any patient at a young age. Patients with IDD have a harder time, both systemically and interpersonally, engaging with health care, which includes prevention programs for HIV. Although there are barriers, patients with IDD require this prevention education to prevent further spread. This study aimed to assess the prevalence of HIV in patients in the US who are publicly insured and have IDD and determine how many patients with IDD are receiving care related to HIV.

Hand holding ribbon for HIV/AIDS awareness | Image credit: fizkes - stock.adobe.com

Hand holding ribbon for HIV/AIDS awareness | Image credit: fizkes - stock.adobe.com

The cross-sectional study used data from the 2012 Medicare-Medicaid Linked Enrollee Analytic Data Source. Developmental disorders included those of speech and language, those of motor function, auditory processing disorders, and dyslexia/alexia. Patients were included if they were aged 18 to 64 years and had fee-for-service Medicare and/or Medicaid. Patients were excluded if they had Medicare Advantage.

The number of tests for HIV that were paid for by Medicare or Medicaid were assessed, with the data source counting the number taken as well as missing data. All patients with IDD who were also diagnosed with HIV were identified. Patients who received anti-retroviral therapy (ART) through annual prescription drug fills in Medicare or Medicaid claims were considered as receiving care. Sex, race/ethnicity, and age were collected for all patients to identify what contributed to disparities in the care of HIV. Where a patient lived and their income were considered for enabling characteristics and the need characteristics were determined by diagnosis of IDD.

There were 878,186 patients who were included in the study. Patients living with HIV and IDD were most likely to be aged between 36 and 55, covered through Medicaid, and living in counties that were not rural when compared with adults who had IDD but not HIV. Black patients made up 60% of the population who were living with HIV and IDD.

Only 0.12% of the population had received a test for HIV within the past year. Patients with DD had a higher prevalence of testing (aPR, 1.56; 95% CI, 1.18-2.05) compared with adults with ID. Patients with autism and ID had a lower prevalence of testing (aPR, 0.65; 95% CI, 0.52-0.82). Patients who were aged 35 to 44, patients aged 55 to 64, patients who lived in rural environments, and patients outside of the Northeast all had lower rates of testing.

Current claims criteria for HIV/AIDS was met in 0.38% of patients. Patients with other DD had a greater proportion of those who met current criteria compared with patients with autism and ID, autism only, and ID only (1.03% vs 0.12%, 0.25%, and 0.41%, respectively). A total of 6% of patients had HIV diagnosis prior to the age of 18 years.

A total of 71% of patients received ART for their HIV claim year in those who lived with both HIV and IDD. Patients with autism received their ART in a smaller proportion both with (54.7%) and without (64.1%) ID.

There were some limitations to this study. The data source used collected data from 2012, but changes have been made to Medicaid and Medicare since then, which indicates studies with more recent data should be performed. Beneficiaries who were on managed care plans were excluded. Using the fulfillment of ART medication to define the receipt of HIV care is not a usual measurement and does not take into account any viral load tests or the CD4. People who did not have a medical diagnosis of IDD were not included in the study. Vertical transmission is possible in the patients with both HIV and IDD but were not able to be identified.

Patients with IDD who are publicly insured need an improvement in health equity when it comes to care for HIV. The researchers wrote that HIV care should be individualized and centered on patients for adults with IDD to better address the specific needs of the patient.


James TG, Argenyi MS, Gravino A, Benevides TW. Human immunodeficiency virus diagnosis and care among adults with intellectual and developmental disabilities who are publicly insured. J Intellect Disabil Res. 2024;68(2):150-163. doi:10.1111/jir.13099

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