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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What the Data Show

Myles Helfand: How much reliable data are there on the ways in which mental health and HIV intersect?

Francine Cournos: The studies suggest that the single most common reason people seek mental health treatment is depression. And the rates of depression in HIV populations vary from very low to very high. But probably, if you look at samples of people in treatment, they hover around 30%. So that's a lot.

David Fawcett: That's right. I've seen various meta-analyses that do come in around that 30% mark, as well. That seems to be a fairly consistent number.

Francine Cournos: There's a lot of descriptive data on rates of mental illness among HIV populations, and almost no research that's been done on the treatment of mental disorders in the context of HIV. So, for most treatment decisions, you can't look to data that's been collected in HIV populations. But in terms of prevalence rates, there are a lot of different studies, both in the U.S. and abroad; and they show very different rates, depending on who is in the study.


What I would say is that virtually all of them show rates of many mental disorders that are much higher than in the general population -- especially for depression, anxiety disorders, substance abuse disorders. To give you an example: If you want to look at injection drug users, close to 100% of those people have opioid dependence. That would mean, since substance use disorders are also mental illnesses, that's a population where 100% of people have mental illness. Whereas if you were looking at, let's say, a population of people who were not using substances at all, you'd get a very different rate of mental illness.

Substance use disorders and mental illnesses travel together. If you have one, you have a 50% chance of having the other. So someone with a substance use disorder has a 50% lifetime risk of another mental illness. And someone with a non-substance-use mental illness has a 50% chance of developing a substance use disorder. So you see a lot of that comorbidity.

When you look at people who are sex workers, they have very poor mental health, in studies that have been done -- in large measure because sex workers, especially those who are on the street, are people with very strong childhood histories of trauma and adult histories of trauma. They have a lot of PTSD, a lot of substance use. So that's a population with very poor mental health.

And then, when you look at men who have sex with men: That's a much more varied population, from people who are very healthy, to people who have had a lot of childhood trauma, bullying, rejection by family, and some of the associated mental health problems that come along with discrimination and abuse.

David Fawcett: One thing I would add to that is that a lot of these symptoms are transient. Someone may have a really severe time with, say, depressive symptoms at some point. And then it might clear. They might get their resilience back, a little bit. And then some other thing might kick it off. So it's very hard to track; it's not a consistent kind of thing over time.

Francine Cournos: I totally agree with that. Mental disorders tend to be episodic: You feel bad, then you go into a remission. And then you go along, and you're well for a while.

David Fawcett: Right.

Myles Helfand: Are there any longitudinal studies that have worked out what rates of depression are among people before they become infected with HIV, and to what extent that changes after a person is diagnosed?

Francine Cournos: No one is doing longitudinal studies, not any that I've seen.

Myles Helfand: Why is that?

Francine Cournos: Because if you look at the National Institute of Mental Health: What have they funded in the way of HIV-related studies? The vast majority are behavioral studies for prevention intervention.

David Fawcett: Right.

Francine Cournos: Looking at mental illness and its treatment has only gotten a very teeny piece of the budget. I mean, of course, prevention and behavioral strategies to reduce risk are really important. But the mental illness component is very poorly represented in the agenda of NIH.

The Hidden Link

Myles Helfand: In the absence of solid research or conclusive data in this area, what can we say about the intersection between HIV and mental health?

Francine Cournos: There are people who think -- and this gets back to the fact that severe depression is probably medical -- that there are certain things going on that are interactions between the things that appear to be mental illnesses and those that are the response of the immune system. Maybe the best example would be treating hepatitis C with interferon, which we know causes very high rates of depression. What you see is that, in the face of getting pegylated interferon, people get an immune response. And part of the immune response, by its very nature, looks a lot like depression. There's incredible fatigue and mood changes, with a very high rate of depression.

My personal feeling is that we're on the wrong track when we think about severe depression as a mental disorder independent of the body. It's really something going on in the body. It may be linked to the immune system. We only have hypotheses. But depressed people die younger. Mentally ill people die younger. And depression and other mental illnesses are very bad for your physical health.

Myles Helfand: We also know that there are some direct cause/effect relationships, such as that of mental health on adherence rates, which also has a direct impact on your overall physical health and your risk of long-term death.

Francine Cournos: Right. Yes. And we know that the two disorders that show up the most in that regard are substance use disorders and depression. Those are the two with the clearest evidence that they interfere with adherence.

Myles Helfand: Dr. Fawcett?

David Fawcett: What I'm hearing a lot -- and, because I'm living with HIV, I'm experiencing a lot, as well -- is this ominous reality of combining aging with long-term survival.

As people are starting to get cardiac problems, and liver problems, and kidney problems, there are concerns about taking all of these heavy-duty medications indefinitely, and putting that with the issues of age; I think there's a little bit of a dark cloud, more so than normal, as we get into the next decade of the epidemic. Those issues of aging and long-term medication use and the virus itself really combine into something that I think people are stressing about a lot. And it's not always verbalized, but it's there, a little bit of a shadow in the background.

Myles Helfand: Are you describing the arc that you've observed in your own therapy practice?

David Fawcett: Yes, in terms of what I see with clients, what I hear people describing, in terms of having more and more complications -- indicative of other problems, not just mood disorders. I had a client who seemed perfectly healthy, started doing exercise and shattered his hip. And there's a whole other podcast we could do about making sure everybody's informed: He was never told about calcium deficiency and vitamin D, and some supplements he might be able to take just because of the impact of the medication.

There are a lot of those kinds of emerging symptoms -- physical, mental and emotional -- that we're seeing that are impacting people right now who have been basically managing and living with the virus for a number of years.

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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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