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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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A Legacy of Ignorance

Francine Cournos: I do a lot of training. I have a large training grant; we train providers in New York and New Jersey about best practices in delivering HIV care. And I think what you see is the difference between what gets presented by researchers at conferences that get a lot of attention, and what people tell you on the front lines. That's been my experience.

I've given at least a thousand talks to a thousand places. And I can tell you that from the very beginning of the epidemic, people were talking about their struggles with the mental health problems that their patients were having. It just doesn't appear on the agenda of prominent meetings. It's not there. At the International AIDS Conference, it's not there. You know the HIV updates that people go to? It's not there. Because it's not there in the representations given by the research world, and the agenda that's driven by infectious disease researchers. The primary agenda for HIV is driven by people who study -- and thank God they do -- antiretroviral medication and what the latest combinations are.

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One of the things that's amazing to me is that now that everybody talks about the cascade -- you know, where they show that in this country, if you consider 100% of people with HIV, 80% have been tested, and by the time you get to the end of the cascade, you have only 28% of people who are on antiretrovirals and have a suppressed viral load. Despite that, almost no one at a conference talks about why that is. That's just flashed up [in a slide on a projector screen]; and then people talk about the latest drugs.

David Fawcett: Right. I also do training for a SAMHSA/CMHS-funded program for providers and therapists. And it seems like there's a small world of people who are engaged in HIV, and then there's everybody else, in terms of mental health professionals. I've trained whole rooms of people where 90% of the therapists really have no connection to HIV. And this is in Miami and Ft. Lauderdale, where the prevalence of HIV is the highest in the country. I try to remind them that they all have someone touched by HIV.

But I think a lot of people outside our little world don't see it as an issue.

Francine Cournos: Right. It's interesting you say that, because I do most of my training in medical settings, taking care of HIV-positive patients. And one of the things I would say is that a lot of mentally ill people have migrated into the HIV/AIDS system because it's much more realistic to provide mental health care in the context of HIV care than it is to provide HIV care in the context of mental health care.

David Fawcett: Absolutely.

Francine Cournos: I've seen a migration of people, even very severely mentally ill patients, out of the mental health system into the AIDS system.

David Fawcett: Right. And unfortunately a lot of the people that those patients come to aren't really trained to handle them. Case managers -- or people who are sitting at the front desk at drop-in centers, or people that really lack the training -- are trying to deal with these really complex patients who are walking through the door, and are experiencing real struggle.

Francine Cournos: Definitely. In a way, a typical medical setting that's taking care of a relatively poor population of people with HIV infection is also, in effect, a mental health and substance use program -- but they don't have the resources or the training to do it. But that's who's there.

David Fawcett: That's correct.


How to Make Mental Health an Everyday Part of HIV Care

Myles Helfand: All right. If we've established the necessity of addressing mental health issues as a part of a person's comprehensive HIV care, but we acknowledge that it frequently does not happen very well within the current context of HIV care in much of the United States, how do we begin to change that?

David Fawcett: I know, of course, time is of the essence. But I hear an awful lot of people describing their eight minutes with their provider as really just: eyes looking down at the lab results, and not really interacting, engaging the patient, the person. I think a provider who is intuitive, who is interested, and maybe who has a few screening resources and a collaborative network of other providers to whom they could refer a patient -- I think [that] would go a long way.

People are so busy and so stressed, but it's just a matter of focus. I think people tend to focus on that objective data and not really look at emotional issues that are harder to conceptualize and discern.

One thing we're doing down here in Broward County is trying to really raise the awareness of how these things play out, how they might work. What role does depression have, say, on adherence? There's a tremendous amount of guys that I work with who are using methamphetamine. They are guys who are already positive. We call it kind of a cognitive escapism: They're numbing.

So, if somebody is seeing their clients with excessive addictions -- or, I see dentists who are seeing a lot of guys who are having dental problems as a result of methamphetamine -- maybe that's a sign that there's something wrong with their adherence. I think having awareness and really looking for a broader context, and having a network where they can refer people, is important.

Francine Cournos: I think people have tried to start with depression, the reason being that it's common; it's associated with non-adherence; it's associated with increased morbidity and mortality; and it's easy to detect and relatively easy to treat (not that everybody gets better on the current regimens we have, whether they are psychotherapy or medication). For example, here in New York state, people use a screen for depression. That's a part of being AIDS providers; it's one of the requirements that the New York State AIDS Institute set up as part of the standard of medical care. And I think screening for depression will be the first mental health indicator in the Affordable Care Act.

So it's a good place to start, because of its frequency, its treatability, and the disability associated with it.

Myles Helfand: Whose job is it to start? Do we need to wait for government programs to provide funding? Do we need to hope that individual doctors' offices, CBOs [community based organizations], other organizations and agencies, and health care providers take the initiative themselves to feel: "We're going to take extra time out of our days or our evenings to find a way to start to incorporate this level of care into the HIV care we already provide"? Or is it the patients' job to realize their own depression and advocate?

Francine Cournos: I think that until mental health care is reimbursed like medical care, it's going to be very hard to change anything. Because, you know, most people with HIV need insurance in order to get care. They're not in a position to pay out of pocket for expensive mental health care. So you really need to see more integrated care, more parity, more available care.

To me -- and this is true no matter how severe their mental illness is -- the patient is the person who has to be the most invested in their own survival and health. No one else can do that for them. But making the resources available and affordable: I think that's the job of the health and mental health care system, and the job of providers is to understand what those resources are and how patients access them.

David Fawcett: I agree with that. I would add: Sometimes a basic knowledge of tools, such as "stages of change" or "motivational interviewing," can go a long way towards helping engage someone to root out some of these issues and understand where they're coming from, and how you can help them move forward, in terms of helping themselves; in terms of intervening.

Myles Helfand: Are there any resources out there now that can help health care providers offer better mental health care?

Francine Cournos: First of all, there are a lot of online resources. I'll just name some of the things that I know about; I'm sure David knows about other things.

One is: I've worked on guidelines for the New York State AIDS Institute, and people from all over the world look at them. There's a website: www.HIVguidelines.org. And that website does a very nice job describing the common mental illnesses in HIV in a simple way, meant for primary care, and with some simple information about management at the primary care level.

Part of Ryan White Part F are the AIDS Education and Training Centers [AETCs], and I happen to be principal investigator of the New York/New Jersey AIDS Education and Training Center. We get paid to train people about any aspect of HIV care. That includes mental health and substance use. This may vary from state to state, but I know that in New York and New Jersey, we have a lot of resources to offer people training.

One of the barriers is whether providers have time. They may have time to go to a training; but whether that's going to translate into having time to go back and institute something new -- or, let's say, even learn a brief treatment for a substance use disorder or depression -- is another matter.

Maybe the single most helpful thing that's happened to mental health is the Mental Health Parity law. Not that people have mental health parity in reality; I don't think they do. But at least a law got passed that said people should have the same access to mental health treatment as they have for treatments for other disorders.

David Fawcett: I'm a trainer for something called the HIV Spectrum Project, which is funded by SAMHSA/CMHS, out of the National Association of Social Workers. We train therapists and other clinicians to really help deal with some of these issues of mental health problems, including topics like co-occurring mental health disorders, ethics and HIV, adherence issues, and so on. And I know the American Psychiatric Association and the American Psychological Association have similar programs. So there are some resources out there.

Francine Cournos: Yeah. The American Psychiatric Association -- I'm part of that, too -- gets money from SAMHSA, the Substance Abuse and Mental Health Services Administration. They have resources to do training on mental health care. And that's important. Thank you for mentioning that, David.

People can go online and learn what they are, and find out about getting free training. The AETCs and the American Psychiatric Association, and I think the other associations: The money that we get to do training allows us to do free training. So people don't have to pay for the training.

David Fawcett: And now with the National AIDS Strategy and the "12 Cities" focus, there's even more funding for that training.

Francine Cournos: But I haven't seen anybody being willing to add mental health or substance use treatment to the National AIDS Strategy -- to the primary things to monitor, anyway.

David Fawcett: That's true. It's working in between the lines there.

Francine Cournos: Right. When you look at what people are going to monitor -- because I had a colleague who was on an Institute of Medicine Committee, and managed to convince the whole group of the importance of mental health and HIV -- mental health and substance use as things that should be monitored, you know, the care of those disorders -- as best I understand it, that's been rejected. It's a real uphill battle.

Myles Helfand: What does it take to change those minds?

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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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