Diagnosed, in treatment and with undetectable viral load. This is how people with HIV should be according to the UNAIDS 90-90-90 target. But there is a quarter 90 that aspires that they also enjoy an adequate quality of life , and this is a chimera if it is not supported by good mental health.
Its approach is a key element to end the HIV epidemic: neuropsychiatric and mood disorders are a burden that weighs down everything around the patient and endangers not only their emotional stability, but also the evolution of the disease.
The figures show that people with HIV are twice as likely to suffer from depression or anxiety, that more than half of young people with HIV have a mental health problem, or that the risk of serious mental illness can be multiplied by 10.
Why are mental health problems more prevalent in people with HIV? Part of the answer lies in a scenario in which everything overlaps and interrelates: the emotional tsunami that is the announcement of a currently incurable disease; stigma; fatigue from long-term treatment; vulnerability …
If we approach the problem from the clinical side, “there is a set of factors that intermingle”, confirms Dr. Álvaro de Mena, specialist in Infectious Diseases at the University Hospital Complex of A Coruña.
“In the acute phase of HIV, a series of opportunistic infections can occur that can affect the brain and nervous system; likewise, the virus itself is also capable of crossing the blood-brain barrier [structure that protects the brain from the passage of toxic substances] and causing neurological damage ”.
Both situations can affect the brain and nervous system, modifying the way the person with HIV thinks and behaves. In addition, some antiretroviral drugs can have side effects that also impact the mental health of the patient.
It all starts with the first diagnosis
This is the clinical view and also the classical one. “But there are many other mental health and neuropsychiatric problems that go beyond that. We can’t stay there, ”warns De Mena. Jordi Blanch, a consultant to the Psychiatry and Psychology Service of the Hospital Clínic de Barcelona and a specialist in psychiatric disorders related to HIV, agrees with him.
“From the moment of diagnosis there is an emotional reaction of stress and anxiety, which is accompanied by uncertainty about the future,” he explains.
Thus, according to Blanch, the HIV journey borders the abyss of mental disorders from the moment of diagnosis. The announcement, the mourning, the period of acceptance… It is not only about the assumption that one suffers from an incurable chronic disease, but about battling against the possible presence of the ghosts of guilt:
“That old association between HIV still persists and allegedly inappropriate behavior, the ‘He deserves it’. And to that we must add the burden of a lifelong treatment and the perception of lack of expectations ”. A testimony that exemplifies this is that of Carlos, a 52-year-old programmer, diagnosed with HIV in 1992: “I was 24 years old and I was paralyzed.
Terrified. I lived it in total solitude ”.
Carlos acknowledges that he gave up his interest in studying, started using drugs and went through “a season of self-destruction. I even thought about suicide. On the one hand, I felt sorry for myself; on the other, I felt guilty. Later they told me that there were new treatments and that this was going to be chronic. Very good, but it was also a downturn: to be with this forever … ”.
“HIV lives like a stone,” says Dr. De Mena. “Patients are faced with a reality that they do not like, that they have to marry with their personal and professional situations, and to which they must decide whether or not to give visibility”.
As much as, thanks to the treatment, they can lead a full life in the organic aspect, their psycho-affective and social sphere suffers, something that can accompany them throughout their lives. “Company analysis, health insurance, confession to potential partners are scary … And anxiety, insomnia, depression appear. It is what we see most in consultation ”, admits De Mena.
This expert insists on the importance that the doctor treating the patient does not remain in the goal of achieving an undetectable viral load, but is proactive and asks about his emotional situation: “We must break the barrier, remove the taboo and ask for their sexual life, their rest, their relationships, their quality of life ”.
Because one thing leads to another: a poor quality of life puts mental health at risk but, in addition, poor mental health can ruin the effectiveness of treatment. “If you do not treat the mental disorder adequately, the risk of the HIV infection evolving unfavorably is higher,” warns Blanch. “First, because a depression can make the patient have worse adherence; second, because depression itself causes alterations in the brain ”.
For this reason, there is an increasing demand for the necessary collaboration between clinicians who treat HIV and specialized psychologists and psychiatrists. Because, to everything seen, another factor is added: the effect that some antiretroviral treatments can have on the mental health of a patient.
In this sense, Blanch points out: “You have to know the drugs well. There are antiretrovirals capable of penetrating the brain and, although not all are toxic, some are; in these cases, either the brain is protected or that toxic substance can cause neurocognitive impairment ”.
And it abounds: “We also know that some of these treatments can cause depressive symptoms, sleep disturbances (such as nightmares or vivid dreams) … Likewise, confusional syndromes can occur due to interactions with other psychiatric medications.”
All are problems that, in the long run, lead to negative thoughts about life. Hence, the specialists continue, the need to ask the patient, to quantify his viral load, but also to know his emotions and, from there, adjust the treatment to his psychological peculiarities.
“It is essential that doctors take care to know who we have in front of us,” continues De Mena. “Uprooting, abandonment, loneliness… Because, later, we are surprised that some patients abandon treatment. You have to actively work for room 90,and do it from the beginning, from the newly diagnosed patient ”.
Carlos, a person with HIV, is the sample of psychological care long after the first diagnosis and its consequences: “A couple took me by the hand and I went to live in Madrid, to be anonymous. There I went to therapy, I reconciled with my life and I stopped taking the anxiolytics. But it’s still not easy anyway. I feel vulnerable and I have many ups and downs ”, he acknowledges.
Experts agree that this is the key: recognizing the importance of quality of life in these types of patients. “You have to work towards this objective from minute one, not consider it a plus once undetectability is reached. The fourth 90 should be at the beginning, can not be the end , “concludes Dr. Blanch.