Mentally ill patients with HIV often have the worst problems

Researchers design intense intervention for group

Research shows that people with severe mental illness are at greater risk of becoming infected with HIV, their care is more costly when they are infected, and their health outcomes are worse than populations without mental illness.1,2,3,4

While health care providers need to pay closer attention to people with severe mental illness in order to provide specialized HIV prevention interventions, HIV screening among this population could be improved.5

Also, Medicaid recipients with mental illness often die younger and have a higher rate of HIV infection than Medicaid recipients who are not mentally ill, says Michael B. Blank, PhD, assistant professor of psychiatry, assistant professor in the School of Nursing, and senior fellow at the Leonard Davis Institute for Health Economics all at the University of Pennsylvania in Philadelphia. Blank also is assistant professor of nursing at the University of Virginia in Charlottesville, VA, and he's on the executive committee of the national Social and Behavioral Sciences Research Network.

"Severely mentally ill people are more likely to be HIV positive and less likely to adhere to their pharmacologic regimen," Blank says.

"We have data showing that people with severe mental illnesses are at much higher risk — over five times the risk — of becoming HIV infected as the general population," Blank says. "Other data show that people who are HIV positive and have a comorbid mental illness have much higher rates of opportunistic infections than the general HIV positive population."

Recent national reports highlight the health care issues impacting Americans with mental illness and outline the fragmentation of the health care system, which serves an estimated 33 million Americans who use health care services for mental health problems. These reports note the problems with having a health care system that provides piecemeal services to the mentally ill, rather than closing gaps, improving access, and making screening, assessment, and referrals the best practice model.6

Mentally ill people are stigmatized and marginalized in society, says Nancy P. Hanrahan, PhD, RN, assistant professor for the Center for Health Outcomes and Policy Research at the University of Pennsylvania School of Nursing in Philadelphia.

"They have a lot of difficulty accessing very well documented, evidence-based treatment that helps people get better," Hanrahan says.

For example, people with mental illness are less likely to receive primary care, which leads to more serious health conditions later, she says.

"The people we care for are very sad stories," Hanrahan says. "The people are generally very poor and they've been in the [Medicaid] system a long time."

Often, the patients have a cognitive or mood disturbance that negatively impacts their quality of life, she adds.

With appropriate care and treatment, mentally ill people can live a fairly normal life, Hanrahan notes.

"One study showed that 65 percent of people with schizophrenia could live a normal life with minimal symptoms," she says.

While evidence-based treatment is available, too few are receiving it, Hanrahan says.

"One reason we're looking at this vulnerable HIV population is because if people don't take their HIV medications at least 80 percent of the time, they can develop mutant strains of the virus," Hanrahan says. "This is a very serious public health problem because mutant strains of the virus result in greater research costs to develop new antiretroviral medications."

Blank began to look into the HIV epidemic among mentally ill populations after a colleague's investigation found elevated AIDS deaths among a Medicaid population in Massachusetts.

"Bruce Dembling used Massachusetts Medicaid claims data," Blank says. "He found 14 years of lost life associated with a mental health diagnosis in the Medicaid system."

While an exam of the causes of death revealed that suicides were the leading cause, Dembling found that deaths from HIV/AIDS were elevated, Blank says.

Blank, who is a co-director of the Behavioral and Social Sciences Core of the Penn Center for AIDS Research (CFAR) in Philadelphia, was funded by the Penn CFAR to conduct a pilot study of Medicaid claims. He looked for both HIV and severe mental illness, and found that about 7 percent of mentally ill people were also HIV positive.

"We looked at the Medicaid claims and found a much higher seroprevalence among people with mental illnesses than we would have expected," Blank says.

Further research included a prevention study, funded by the National Institute on Drug Abuse in Bethesda, MD, for severely mentally ill people who used substances and who were HIV negative.

"The idea was to use a case manager to deliver individually oriented HIV prevention messages," Blank explains. "They have knowledge about their clients' cognitive and emotional deficits and were particularly well suited to deliver these programs.

While the social network model for HIV prevention works well for many populations, it is not suited for serving mentally ill people, Blank notes.

"These are people who have difficulty in social situations and who need the messages reinforced over time," he says. "The message needs to be titrated to their constellation of risk factors."

This population's excess risk for infection is due to both their mental illness, substance use, and their risky sexual behavior, Blank notes.

"Because these folks are community dwelling and vulnerable, they're easily exploited, and they tend to trade sex for food, money, drugs, and a place to stay," Blank explains.

For the approximate 7 percent of mentally ill patients who already are HIV positive, investigators developed a program, funded by the National Institute of Nursing Research (NINR) of Bethesda, called Preventing AIDS Through Health (PATH) Plus.

The PATH intervention includes the use of advanced practice nurses who serve as liaisons between physical health and mental health providers, Blank says. (See the story about PATH, at right.)

The intervention is intensive, resulting in an average of 22.9 contacts per participant, including face-to-face interventions with the nurse nearly half of the time.1

Despite its cost, it will save money by preventing AIDS cases and new HIV infections, Blank says.

Since this population's risk behaviors result in further HIV exposures, the intervention can prevent new infections through keeping clients on highly active antiretroviral therapy (HAART), which lowers their viral loads and their risk of transmitting the virus to other people, he says.

"We think preventing even a single case of HIV will save a huge amount of costs," Blank says.

The PATH research, which received National Institutes of Health (NIH) funding, shows that the public health community has grown more aware of the problems facing mentally ill people with HIV infection, Hanrahan says.

"I think the HIV community has begun to open their eyes about this," Hanrahan says. "The funding of our study was very significant — a five-year, funded study at a time when NIH funding is dropping."

NIH's National Institute of Nursing Research, which provided the funding, had the foresight to see this as a multidimensional problem, Hanrahan says.

"Also, it's a significant niche for nurses because of the mental health and physical health needs of this population," Hanrahan says. "They're generally people who are hard to keep track of, and so we go out to their homes or meet them wherever we can find them."


  1. Blank M, et al. A Community Health Nursing Approach to HIV Treatment Adherence Among Persons with Comorbid Mental Illnesses. Presented at the XVI International AIDS Conference, held Aug. 13-18, 2006, in Toronto, Canada. Available at
  2. Blank MB, et al. Co-occurrence of HIV and Serious Mental Illness Among Medicaid Recipients. Psychiatr Serv. 2002;53:868-873.
  3. Rothbard AB, et al. Cost of Care for Medicaid Recipients with Serious Mental Illness and HIV Infection or AIDS. Psychiatr Serv. 2003;54:1240-1246.
  4. Bogart LM, et al. Patterns of HIV Care for Patients with Serious Mental Illness. AIDS Pat Care STDS. 2006;20:175-182.
  5. Johnson-Masotti AP, et al. Efficacy and Cost-Effectiveness of the First Generation of HIV Prevention Interventions for People with Severe and Persistent Mental Illness. J Ment Health Policy Econ. 2003;6:23-35.
  6. Improving the Quality of Health Care for Mental and Substance-Use Conditions. Committee on Crossing the Quality Chasm: Adaptation to Mental Health and Addictive Disorders. National Academies Press. 2006. Executive summary Available at