HIV Management In Depth

Mental Health and HIV, the Uncharted Territory

Francine Cournos, M.D.David Fawcett, Ph.D., LCSW
Francine Cournos, M.D.David Fawcett, Ph.D., LCSW
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A Conversation With Francine Cournos, M.D., and David Fawcett, Ph.D., LCSW

March 14, 2013

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In the typical conversation about HIV patient care, we talk about antiretrovirals; we talk about viral loads and CD4+ cell counts; we talk about the vast constellation of HIV- and HIV treatment-related complications that can impact our patients' well-being and affect the success of their therapy. In other words, we talk a lot about our patients' physiological health. We don't talk near as much about their mental health.

But if any of us have illusions that a patient's psychological state plays anything less than a critical role in his or her HIV care, and that health care providers do not have the power to dramatically improve that state, then we're due for a little re-education. In this episode of HIV Management Today, we discuss the extent to which mental health is inextricably tied to clinical health in HIV care, and what simple steps providers can begin to take to make mental health a more prominent part of the care they provide.

Joining us for this discussion are Francine Cournos, M.D., a professor of clinical psychiatry at Columbia University in New York City, who has been working in HIV and mental health since 1983 and who speaks and writes widely on the subject; and David Fawcett, Ph.D., L.C.S.W., a therapist in Ft. Lauderdale, Fla., who has been working with HIV-infected clients since the 1980s -- and who has been living with HIV himself for more than 25 years.

We begin our conversation by talking about why there appears to be such a chasm between clinical care and mental health care in HIV.

Table of Contents

Why Is Mental Health Ignored in HIV Care?

Francine Cournos: Mental illness has been separated from other medical illnesses. And you could understand why; mental health is on a continuum. And when you get to real mental illness, the severe forms of it, they're not that much different from medical illnesses, but they're highly stigmatized.

Even outside of HIV, if you look at the World Health Organization: It's been very frustrating for the World Health Organization to bring attention to people with mental disorders, despite many studies that show how disabling they are. For example, severe major depression is as disabling as heart failure and many other medical illnesses. But you can't get the same focus on these disorders.


Most of your mental illnesses are also, in some sense, medical illnesses. What I mean by that is that they have many physical manifestations. Here in this country we tend to make a strong mind/body distinction, which probably is somewhat false when it comes to severe illness. So, for example, severe anxiety disorders: Your heart is beating fast; your blood pressure may go up; you're sweating. Or, for example, in major depression: You're fatigued; you can't sleep properly; you don't eat properly. There's a whole list of medical components to it.

So I think it's important to say that mental health is not apart from other medical conditions you need to think about in HIV-positive people.

Myles Helfand: Dr. Fawcett, would you concur with that? Have we divested mental health too much from physical health?

David Fawcett: I absolutely concur with that. We have made this mind/body distinction, especially in our culture, as Fran noted. And that allows a lot of providers -- and society in general -- to turn a blind eye toward some of the things that are maybe less convenient or more difficult to approach.

I think oftentimes the medical community, at least those treating HIV, tend to look at the objective data; they look at the raw values; and because of time shortages they may choose to prescribe an antidepressant or an antianxiety medication, and that's the end of it.

But, unfortunately, from the patient point of view, that's not the end of it. They get into all kinds of issues that often go unaddressed. And there is a real lack of resources for people to turn to.

This is important across the entire spectrum of HIV. It's putting people at higher risk for acquiring the virus initially: There's mood disorders, or meth addiction, or a history of trauma. And then, at every stage of the illness, from the diagnosis to beginning meds to the first opportunistic infection to overcoming stigma. Each of those presents a real opportunity for any kind of mental illness to flare, and to really complicate the entire picture. So it's really hard to disentangle mental illness from the physiological process, especially with AIDS.

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This article was provided by TheBodyPRO. It is a part of the publication HIV Management in Depth.

Reader Comments:

Comment by: Dr. Billy Levin (South Africa) Wed., Dec. 11, 2013 at 11:13 pm UTC
ADHD should not be forgotten or excluded in both adult and child. HIV + children have the highest rate of ADHD (28%). As it is inherited, the parents, one or both may still need treatment for their ADHD. Treating the condition will make the person more reliable and organized resulting in better adherence to his/her HIV treatment and a better chance for the child'ssuccess.
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Comment by: Dr Billy Levin (South Africa ) Wed., Oct. 16, 2013 at 12:37 am UTC
There is a lot of discussion about adults Aids and depression. Just as important are HIV + children with the highest (28%) incidence of ADHD, who are easily recognized and just as easily treated if seen by an expert. I have absolute proof of this.
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Comment by: Dr Billy Levin (South Africa) Wed., Jun. 19, 2013 at 6:04 pm UTC
My son ,as a paediatrician is a recognized expert on HIV + children. He would often refer HIV children to me with mental problems. 28% of HIV + children have ADHD and respond to stimulants. Among adults with Aids or HIV+ depression is very frequent. One of the main causes is neglected and undiagnosed ADHD who do not respond to antidepressants unless their ADHD is also treated.
Another complication of untreated ADHD is abuse and addiction to illegal drugs.
The use of a Conners rating scale for ADHD and a Hamilton scale for depression is a simple but very effective screening devise in all suspected cases.
Being aware of the possibilities is halfway there to recognition and treatment.
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Comment by: Jim Maciejewski (Sayreville, NJ) Sat., Jun. 8, 2013 at 9:35 am UTC
Try quitting your vises that you used to help with the anxieties of a fast paced world to live a healthier lifestyle, taking meds that are still new as far as long term effects and dealing with new health issues constantly as you live w/ a virus that is able to adapt finding new ways to screw w/ your body. Besides dealing w/ the stress we can cause from worrying instead of celebrating another chance at life. Oh and to top it of being already unbalanced mentally from hereditary issues and then from the years of abuse done by harmful vises of drinking, drugs and smoking. I consider myself to be a bit OCD, ADD/ADHD & b-polar. Without self-medicating I can eventually become a mess and make bad decisions second quessing myself causing more stress. I can be my worst enemy! Ritalin made me more anxious. The same feeling I'd get doing cocaine w/o drinking. I took myself off meds, Zoloft, which seemed to help best at the right dosage for me, 100mg. And later Paxil/Paroxetine which seemed to make me even more moodier then before. I went back on Zoloft after seeing a psychiatrist specializing in psychosomatic medicine, later switching to Cymbalta to help with my neuropathy besides my anxiety/depression issues. Without seeking the help I'd be a mess. I self-medicated since I was 12 yo with periods of quitting my vises on and off throughout my life. I finally surrendered to my issues and plan on sticking with getting the help I need professionally this time.
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Comment by: Bill Coleman (Vancouver Canada) Mon., May. 13, 2013 at 4:57 pm UTC
If you are looking for a study that followed HIV poz guys and mental health. Dr Malcolm Steinberg (Vancouver Canada)headed up a 5 year study of Gay guys who were newly infected with HIV. Part of what he did was follow their Mental Health over the five year period.
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Comment by: cliffwms44 (Philadelphia) Thu., Apr. 25, 2013 at 6:23 pm UTC
As a person infected I have always shouted that HIV/AIDS touches every dimension of our Human Well-being Mental> Physical> Spiritual> Relationship> and> Environment each one charges the next and must stay in alignment, for great overall health (holistic health applied medicine)
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Comment by: subash (India) Fri., Apr. 19, 2013 at 12:40 pm UTC
Here no one is there to care and no organisations I found. Very sad to HIV patients.
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Comment by: Ted F. (Tulsa, Ok ) Mon., Apr. 15, 2013 at 7:59 am UTC
I am glad I came across its refreshing to see that others are are voicing some of the concerns that I as a long term survivor of hiv have about long term therapy and treatment.Ihave suffered from depression most of my life with a family history of depression. I made a decision to stop my treatment after my 10yrs hiv anniversary.I made the decision after a lot of soul searching and felt for me it was time.Really like the info this site provides.
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Comment by: Stephen P. (Cliffside Park, NJ) Sun., Apr. 14, 2013 at 11:40 pm UTC
I just finish one of my own blog posts. I'm a consumer advocate for both HIV and Mental Health, I was dual diagnosed in 1996 and live with compound stigma. My blog and website since 2004 is about this very topic, but as a consumer. I have come out as a gay man, out as a gay man living with HIV and out again as a gay man with HIV and living Bipolar disorder. I joke in that I take two cocktails a day, I take double the number of pills for my mental health. The HIV community is lacking intergrated care, outpatient substance abuse programs, and affordable mental health care. I only now 18 years later receiving real mental health treatment-long term. Cure AIDS and all the ASO's will become HIV Mental Health Clinics, I'm convinced.
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Comment by: Mary Monterrubio (Seattle) Tue., Apr. 2, 2013 at 1:12 pm UTC
I work as an intensive case manager in a program designed to outreach on streets or in reach into prisons/jails. Our clients our highly vulnerable, chronic homeless, chronic addictions. I wrote a paper on Methamphetamine and the accelerated onset of HIV Dementia. Sadly though information is very minimal.

Are you ever coming up to Seattle to give lectures? Or do you both lecture in San Francisco? Do you have any facts, figures, info on that? The population we serve is in dire need of advocacy tools for this situation. Along with the Mental Health, HIV Dementia issues. Because housing agencies are continually finding my clients exasperating but no one is dealing with the mental health as a very big factor in the problems that occur with my clients.

Thank you! Mary Monterrubio
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Comment by: Ted (Louisville, KY ) Sun., Mar. 31, 2013 at 12:09 am UTC
My HIV doc never asked about my mental health. I had to bring up that I had depression and anxiety issues. He just said that I should talk to a therapist. I go to an exclusive HIV practice ran by the university. I first went there, because I didn't have insurance. After getting insurance, I've stayed.

I did seek out a therapist. Whenever I get the opportunity, I tell the docs, nurses, and others at the HIV practice that questions about mental health should be asked at every appointment. It sometimes takes people a while to open up about it. And, I suggest that they have names of therapists and psychiatrists available. If you're really depressed, you may lack the motivation to begin searching for one on your own.

I know this practice works with many, who have no insurance or income. I don't know if the docs don't bring it up, because they wouldn't know where to send them for free services. There is a psychiatry clinic there, but they often have long wait times to become a patient. But, I've talked to fellow poz folks, who go to private docs, and most say mental health is never asked about. They have to bring it up. And, often, they are just told they should "have that seen about."
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Comment by: Lawrence Branford (Johannesburg South Africa) Fri., Mar. 22, 2013 at 2:37 am UTC
I was diagnosed in 2008. For 3 years I suffered depression, by grace I meet a doctor at a Church conference who placed me on medication. Doctors need to check patience mental state as a matter of urgency.
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Comment by: Michael (Hawaii) Thu., Mar. 21, 2013 at 2:51 pm UTC
Thanks so much for the very informative and important 'conversation'. I am both positive and work with folks who are positive also. I believe that it is a most important subject and needs much more input from others doing the same type of work. I am a MSW and Psy. D. and am most grateful for especially the interventions given during my MSW education.
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Comment by: WANGUI NYAGA (Kenya Africa) Fri., Mar. 15, 2013 at 2:40 am UTC
This is very true. The body and mind work in tandem. Every body system is part of the other system.
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Comment by: Dr Billy Levin (Benoni, South africa) Thu., Mar. 14, 2013 at 5:50 pm UTC
In S.A, "Right to Care" educate doctors and treat HIV aids patients. My field is ADHD. I am often asked to lecture at their conferences. Normal incidence of ADHD is about 7%. In HIV positive children the incidence of ADHD is 28%. Clearly a major 'Mental illess" problem often giving rise to depression,especially in the teenage population. It not responsive to antidepressants until the ADHD is treated with a stimulant like Ritalin. Just a thought to concur with the concept of mental illness in Hiv Aids patients.
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Comment by: Robert T. (Cleveland, Ohio) Thu., Mar. 14, 2013 at 1:33 pm UTC
I suffered a t.i.a. a few years back. No noticeable, residual side effects - other than losing my sense of taste and my memory has some lapses. We ARE living longer with AIDS [24+ years here!]. May of us, like myself, live alone. Alone with our thoughts, ugh. Rather than prescribing drugs why isn't someone building A.D.A.-ready, HIV Communities, thereby erasing the stigma and isolation?! Sign me up!
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