Despite amazing medical advances and extensive public education campaigns, much stigma and misinformation still surround HIV/AIDS. The same can be said for mental illness. So when someone has both HIV and a mental illness, he bears a tremendous burden.
“There is so much stigma and so many myths attached to mental healthcare and HIV,” says Gwen Davies, clinical director at Positive Impact, an Atlanta community-based agency serving HIV-positive individuals with mental illnesses (www.positiveimpact-atl.org). “A lot of our time is spent just addressing the myths.”
This is a “doubly hidden” population, says Abe Feingold, a private consultant in HIV and mental health. “People living with severe mental illness and HIV are not always readily identified in the community,” says Feingold, who is also the editor of mental health AIDS (www.mentalhealthaids.samhsa.gov), a quarterly update from SAMHSA's Center for Mental Health Services (CMHS).
The prevalence of HIV in the mentally ill population is much higher than in the general population, according to the HIV Cost and Services Utilization Study (HCSUS).1 Eric Bing and colleagues report that nearly half the HIV-positive participants they studied screened positive for major depression, dysthymia, generalized anxiety disorder, and/or panic attacks. More than one-third screened positive for major depression, and more than one-quarter experienced symptoms of dysthymia during the previous 12 months. Twenty-one percent screened positive for both major depression and dysthymia.
Furthermore, HIV outcomes among mentally ill individuals continue to be poor, despite widespread access to antiretroviral treatment, as a result of several factors. Sheri Weiser, MD, MPH, and colleagues report that people with mental illnesses are less likely to be targeted for HIV risk-reduction interventions, to be tested, to receive treatment, and to adhere to complex medication regimens.2
In 2001, CMHS initiated the $9.5 million Mental Health HIV Services Collaborative (MHHSC) Program to provide technical assistance to 20 grantee sites nationwide that provide mental health services to people living with HIV in underserved communities. James Skinner of Abt Associates in Bethesda, Maryland, is the program's clinical director, and he says it is no longer feasible to have agencies specializing in just treating HIV or just treating mental illnesses—the most effective model is a one-stop shop that addresses the whole person.
“For an AIDS service organization to just address the AIDS issue, leaving the person to go somewhere else to address mental health issues, somewhere else to address substance use issues, and yet another place to get food and shelter, that's a lot for a person to manage,” says Skinner. “If you don't have transportation or if you have to rely on public transportation, that is just overwhelming, particularly when you're dealing with a chronic illness and not feeling well.”
Linda Rosenberg, president and CEO of the National Council for Community Behavioral Healthcare (NCCBH), says increasing numbers of her members are partnering with community health centers to provide more holistic care. “That gives both sides, the mental health specialty side and the health center, the ability to work with the whole person,” she says. “Developing a good relationship with your community health center is definitely important.” Rosenberg says referral services between community mental health centers and community health centers are helping to shed light on this hidden population.
Skinner says Positive Impact is a good example of a one-stop service center. Founded in 1993, the agency has a 20-member staff, 100 active volunteers (including 80 mental health providers), and a $1.2 million budget. As part of its outreach, Positive Impact has a “bridging” program in which clients are brought in for educational sessions without having to commit to treatment. Based on Positive Impact's experience, people are more likely to agree to care after having attended a few meetings to learn about mental health and related issues. Stigma is a huge problem, though, and Davies says staff members initially refer to mental health as “inner health.”
“Even when we're talking to them about other issues, we work on selling mental healthcare, talking about the fact that you don't have to be crazy, how it can be helpful, what does it look like when you go, what's going to happen, and what's not going to happen, so that they can set their expectations appropriately,” explains Davies.
Positive Impact places counselors at AIDS service organizations that provide medical care. If someone receiving medical treatment appears to be down, for example, it's easy for the doctor to say, “You know, you also seem depressed, and we have somebody here you can talk to.” That, says Davies, is a lot easier for patients than making a separate trip to a mental health center. Positive Impact also includes homeless shelters in its outreach efforts.
The Center for Mental Health
Jerry Landers, vice-president of business and finance at the Center for Mental Health in Anderson, Indiana, says his staff evades stigma connected to discussing HIV issues by using an indirect approach: “When clients come in for addictions treatment, for example, we might say, ‘Hey, would you like to have an HIV test, because the things that you've just told me make me, as a clinician, think that you may be at risk. It doesn't cost you anything, and you'll have the results in 20 minutes.’”