What is health? It is becoming increasingly clear that it is not the absence of disease but is associated with Quality of life related to health (HRQL). And this is especially important in chronic diseases, such as HIV, where people who carry the virus face unique and specific challenges.
Now, a multidisciplinary team of 44 experts in HIV publishes in the journal “Nature Communications” a consensus document on actions to improve the long-term well-being of these people.
Coordinated by Jeffrey Lazarus, from the Barcelona Institute for Global Health (ISGlobal), the text seeks to guide global, regional, national and local actors in the development and implementation of comprehensive and people-centered health care, which guarantees the best outcome for people living with HIV.
“The crisis caused by Covid-19 has shed light on problems that have been evident for a long time,” says Lazarus who stresses that health systems must move away from the “acute care paradigm»And take a care approach to«long term».
In addition, he adds, “the compartmentalisation and fragmentation of care prevent health systems from analyzing the health and well-being of the patient in a comprehensive way, taking into account possible comorbidities and the impact of a disease on the general well-being of a person ».
Therefore, as emphasized in the document, the patient-centered approach and CVR “are” crucial concepts “in this much-needed paradigm shift toward a long-term, holistic, multidisciplinary approach to care.
Lazarus explains that HRQL covers aspects related to a person’s “general well-being” and goes beyond simple clinical outcomes.
Because, as the researcher María José Fuster, from the Spanish Interdisciplinary AIDS Society (SEISIDA) points out, “efficiency in HIV care cannot be measured solely with biomedical results.”
Fuster, who is part of a multidisciplinary team of 44 HIV experts who have drawn up the consensus, highlights that “health-related quality of life is a central aspect to guarantee the long-term health of people with HIV, since that influences health outcomes directly and indirectly ”.
In the case of HIV, Lazarus points out, HRQoL covers «biomedical aspects (such as multimorbidity, pain management and fatigue), issues related to personal well-being in general (such as mental health, stigma and discrimination, including self-stigma and guilt), and reproductive health and rights, social isolation, marginalization and denial of medical care ”.
In circumstances where effective treatment and prevention are available and yet multiple barriers persist, “” HRQL provides a tool to fully assess health status and a means to support the provision of comprehensive care, “he says.
It should not be forgotten that the introduction of antiretroviral therapies in 1996 reduced the incidence of diseases and deaths linked to HIV and AIDS. By the end of 2019, 67% of people living with HIV had started antiretroviral therapy (ART) and 59% had achieved viral suppression. Yet despite this, people living with HIV often have a lower quality of life and well-being.
The consensus recommendations, which can be viewed at this link, include a comprehensive approach to the well-being of people with HIV by eliminating HIV-related stigma and discrimination in the healthcare context and addressing multimorbidity as part of long-term careor.
According to Mª José Fuster, “an advance is needed in the care model for people with HIV that includes the management of problems related to health-related quality of life.”
Together with the strategy of the Joint United Nations Program on HIV / AIDS (UNAIDS / UNAIDS), this consensus statement proposes a vision for how to transform HIV care in the coming years.
The declaration advocates that, in addition to continuing to work on universal access andremovable antiretroviral treatment, it is necessary that health systems must also broaden the focus of attention to ensure that people with HIV achieve the highest possible standard of physical and mental health, beyond simple viral suppression.