A significant percentage of people living with HIV who have a diagnosed mental illness or a substance abuse problem, or both, are not getting appropriate treatment, according to a study published in the April 1 issue of the Journal of Acquired Immune Deficiency Syndromes.

Previous research has found rates of mental illness or substance abuse among people with HIV that range from 13 percent in a massive national database to 24 percent at the Johns Hopkins Hospital HIV clinic in Baltimore. No study, however, has until now determined whether such individuals were receiving treatment for those disorders.

Marcia Weaver, PhD, of the Department of Health Services at the University of Washington in Seattle, and her colleagues from the HIV/AIDS Treatment Adherence, Health Outcomes and Cost Study set out to determine whether mentally ill and substance-abusing people living with HIV were receiving appropriate treatment. Weaver’s team, which was made up of researchers from six sites throughout the United States, enrolled 803 HIV-positive people who were diagnosed with a mental illness, a substance abuse problem or both. Sixty-nine percent of the participants were African American, 33 percent were female, and the majority had either no health insurance or relied on government programs like ADAP, Medicaid or Medicare.

Weaver’s team found that a significant percentage of people were not receiving services for their specific disorder. Forty-one percent of those with a diagnosed mental illness had not received services in the previous three months, while 53 percent of substance abusers had gone without addiction treatment. In those with both disorders, 67 percent were not receiving necessary comprehensive care. People with private insurance or insurance through the Veterans Affairs (VA) health care system were the most likely to be receiving comprehensive services.

Weaver’s team acknowledges that because they recruited people for the study from service providers who specifically treat mental illness and substance abuse, their findings cannot be generalized to people living with HIV as a whole. They note, however, that the study does offer a bleak picture of what is happening among a population of people most heavily impacted by mental illness and substance abuse. Pointing to the fact that 29 percent of those with a substance-use disorder were involved in self-help groups, the authors conclude it was not unwillingness on the part of study participants that kept them from receiving services, but rather structural and access barriers.

The authors also point out that while ADAP covers antiretrovirals in all states, these programs do not always cover treatments for mental illness or substance abuse.