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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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Battling Our Internal Stigma

Francine Cournos: Because it makes so little logical sense, I have come to think that it must be the stigma of mental illness that makes people so unable and unwilling to think about it for what it is. I don't have any other answer, because it approaches the point of being completely illogical.

If you can show that depression and substance abuse interfere with adhering to HIV; if you're very concerned with the cascade; if you have a goal of viral suppression in a population, and you want to "get to zero" -- as sometimes people say -- by getting everybody on antiretroviral care, and only a quarter of people are on it, and you know substance abuse and depression are a piece of the problem, and you don't address it? I can only assume it's irrational. It's stigma. Because no other explanation makes sense to me.

Myles Helfand: It is such a strange thing to hear you say, in light of what HIV is, and what the HIV epidemic has been. Given the stigma surrounding HIV itself, to think that we have stigmas within the stigmas that we need to resolve amongst ourselves before we can fix them in our patients and clients [is distressing].

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Francine Cournos: I know David, because you have HIV, you are able to not only talk with the voice of a therapist, but with [the voice of] someone who has HIV. I myself have had major depression and post traumatic stress disorder. And at some point, I decided I was just going to talk about it, when I did training, just to have my own, little, one-person, anti-stigma campaign.

I will very often mention it when I give talks about mental illness. Because if I, as a psychiatrist, can't talk about it in public, then how am I going to expect anybody else to overcome the stigma?

David Fawcett: Right. I mentioned I'm part of this training group. We had a group of all the trainers at a conference last year, and a dinner. And I had to take my medications after that dinner. Even in that setting, I was very self-conscious about taking the medication. After all these years, and all this work, that stigma is still very powerful. And it's right there.

Francine Cournos: What happened to me was that I take an anti-depressant. And I always hid it. But then I wrote a memoir about myself. It was mostly about the fact that I was orphaned in childhood, and lived in foster care. I struggled about whether [to mention any of that], because I'm a psychiatrist -- there are all these anonymity issues. What would my colleagues think about me if I included the fact that I had several mental illnesses, and that I was on medication?

Then I just decided, look: I was giving into the stigma of mental illness if I didn't mention it. And then, after I wrote it in a book, I thought: Well, there it is in a book. So now there's no point in my being quiet, no point in covering it over. Might as well just talk about it.

It was very interesting, because I had an experience doing an HIV-related project in Rwanda, which -- following the genocide -- has many people with depression and PTSD. I think my ability to talk about my own experience with it allowed other people to become much freer in looking at the impact of the trauma symptoms, in particular, on that population.

David Fawcett: For me, a similar experience was coming out on TheBody.com, in terms of my blog, and declaring myself as an HIV-positive person, at that level of openness and media. I've had many people come up to me and say how reassuring that was for them to see someone else who was out in public.

One by one, we have to fight back against that stigma, and the shame that goes with it. It comes at us from so many directions. And I think that as providers, of course, that's resonating with them, as well.

I think you're right: It's irrational. But that explains this force field between providers and really engaging in these mental health issues.

Francine Cournos: I think that whether it's HIV or whether it's mental illness, every stigmatized illness needs people to be open about having it, who can serve as models of managing it well.

David Fawcett: Absolutely. Yes.

Myles Helfand: So the key to increasing awareness of, screening of and, ultimately, treatment of mental health problems in HIV is for health care providers to change their minds?

Francine Cournos: And for the health care leadership to change its mind, for the system to change its mind. For example, we give talks at AIDS Education and Training Centers, and we don't get "credit" for speaking to mental health providers. It's interesting. The people we get credit for speaking to are providers who prescribe. Our nurses, doctors, dentists, physicians' assistants, nurse practitioners and pharmacists -- that's our target. We're not supposed to have more than 20% of "others." So, when a social worker comes, or a psychologist comes, those are not people that we're targeted to train.

Well, if we're doing training for AIDS programs, and these programs are filled with people with mental illness and HIV, but our training isn't supposed to count for them -- what does that say about the marginalization of the importance of those topics?

It's pervasive. It's in just about anything you want to look at, at the federal level. I think you'd find it there -- whether it's the research agenda, whether it's important conferences, whether it's the NIH -- no matter where you look, you will find that stigma.

Myles Helfand: Have you seen, or do you feel personally, that a lot, Dr. Fawcett, in your own practice? Do they have this feeling, like, "My provider, or the health care system in general, just doesn't care?"

David Fawcett: Absolutely. Especially the clients I have, they have what I call "layers" of stigma. They may be gay men; they may be methamphetamine addicted; they may be sex workers; they may be HIV positive, or they may just have hep C. There's all this stuff burying this individual under these layers of various stigmas. And it really has a dramatic impact. That itself can be a causal factor for a mood disorder -- for depression, certainly.

I think people are struggling for models. Going back a little bit to the provider thing: Jung had this concept of shadows. I don't want to get too heavy on that. But I think a lot of health care providers, when someone comes in and there's a mental health concern, it touches them, and there's a little fear that's kicked off.

One of the things that could initiate a change in the field is for providers to know themselves and be comfortable with themselves. Because I think a lot of times their own buttons get pushed, and they just don't know how to deal with it, and they're afraid of it.

Sometimes -- and this is the case for all of us in HIV -- in our field, I think we really have to take care of ourselves, and know ourselves as providers, in order to really hold space for our clients, and help them move forward in their own treatment.

Francine Cournos: I want to just highlight the point that David made about fear, because I think that's a very big barrier. People are frightened to talk to people about what's in their minds, and what their mental health problems are. It's very scary.

I know this firsthand because I first trained in internal medicine. I did two years of internal medicine training. When I switched to psychiatry, before I knew anything new, I suddenly felt that I was now supposed to -- and could -- ask people about what they were thinking.

People would come and they would do really irrational things, like not take their medicine when they had gangrene of the leg, and they're going to lose the leg. Before I started psychiatry training, I didn't feel able to say, "Why would you do that? Why would you not take your medicine and risk losing your leg?"

When I started my psychiatry training, I thought: OK, now I can. It's like some strange mixture of feeling permission, and less frightened.

Myles Helfand: So it's a matter of getting over that initial barrier.

Francine Cournos: Yes.

Myles Helfand: Both for providers and patients.

Francine Cournos: Yes.

David Fawcett: Right. I guess, for me, from a provider's perspective, people need to be aware of the stigma and shame in their own issues, and just connect with whoever their patient or client is at a human level. I think that's therapeutic and reassuring, and is the essential first step toward any kind of healing of emotional issues. It's feeling connected, and having the provider provide a little bit of an opportunity, and safety and security, to make that happen.

Dealing with HIV is tough. I imagine there's a lot of burnout, and it's difficult. We see patients decline and patients die. And I think sometimes the way a provider protects him or herself is to put up an emotional barrier and disconnect. I think that doesn't serve anyone very well.

In fact, we have to open ourselves yet have good boundaries, emotional boundaries. I think it's really important to be a human being and give the client opportunity to be able to express himself, both physically and emotionally. It doesn't necessarily mean something that takes a lot more time; it's more of an attitude. Even making eye contact and being warm -- sometimes that's missing from the formula. The basics of bedside manner, I think, go a long way.

Francine Cournos: Right. We have a very costly health care system -- as everybody always talks about, when they compare us to other countries -- because we spend money doing technological procedures at the drop of a hat, even when clinical judgment, if it was relied upon more and depended upon more, would replace some of the excessive procedures.

But for us to move more toward a health care system where there was a real relationship between patients and their providers, and that was valued, and people received holistic care: It could be carved out of the thousands and thousands of dollars that people spend on all the excessive testing that we do.

Myles Helfand: And that, I think, is where we need to leave things for now. Obviously, we have a long way to go to integrate mental health care with HIV care, but you both have outlined the importance of doing so and provided some straightforward steps that providers can begin to take in that direction.

Dr. Cournos, Dr. Fawcett, thank you so much for this discussion.

This transcript has been edited for clarity, grammar and length.

Visit our HIV Management Today home page for more episodes in this series.

Myles Helfand is the editorial director of TheBody.com and TheBodyPRO.com.

Follow Myles on Twitter: @MylesatTheBody.


Copyright © 2013 Remedy Health Media, LLC. All rights reserved.

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Reader Comments:

Comment by: Dr. Billy Levin (South Africa) Wed., Dec. 11, 2013 at 11:13 pm EST
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 EDT
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 EDT
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 EDT
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 EDT
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 EDT
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 EDT
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 EDT
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 EDT
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 EDT
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 EDT
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 EDT
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 EDT
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 EDT
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 EDT
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 EDT
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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