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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.
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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