Mental Health and HIV, the Uncharted Territory

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

Executive Editor

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.

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.

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: 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?

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].

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, 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.

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