Kelsey Louie (left), the author, at the AIDS Walk (photo: Matthew McDermott)
From the days when HIV/AIDS first emerged, people living with HIV/AIDS faced horrible stigma, discrimination, hatred and rejection. Those touched by the epidemic also experienced trauma and depression. The emotional pain was searing; with little warning, AIDS robbed thousands of their family members, lovers, neighbors, and colleagues. People dealt with the shattering pieces of their lives as best as they could, often alone, and often with no professional help of any kind.
When Gay Men’s Health Crisis (GMHC), the first HIV/AIDS service organization in the world, was founded in 1981, services were developed based on the immediate needs of people coming through the doors, people with symptoms of AIDS, those who cared about people infected and affected, and the general public. Some came in need of care and support, others came for information or for assistance with grief due to the death of a loved one. In response, services were developed including a hotline to provide information, support groups for people with AIDS, buddy programs to provide care partners to the ill, and support groups for the families of people with AIDS or for those who were left behind after the AIDS death of a loved one.
Trained mental health professionals volunteered to facilitate many different types of support groups under the direction of a salaried clinical supervisor. People with AIDS were struggling with the psychological stress of an AIDS diagnosis, fueled by stigma, discrimination, anxiety, despair, and confusion. Short-term individual counseling was set up for people living with HIV to respond to those with urgent mental health needs, especially for those with AIDS Dementia Complex. At that time, GMHC’s primary jobs were to assist people to die with as much dignity as possible, to help those grieving the loss of a loved one to AIDS, and to provide all, including the broader public, with information about HIV/AIDS.
As new HIV medications were becoming available in the mid-1990s, GMHC’s group and individual counseling services continued to evolve. While HIV’s threat to a person’s physical health was well known, its impact on mental health was less clear, under-publicized, and not adequately researched. GMHC’s mission quickly changed; now it was our job to assist people to live with dignity—it is a mission that continues today.
Research shows a strong correlation between mental health disorders and people living with HIV and AIDS, a correlation that is often overlooked. According to the National Institute of Health, people with HIV have an increased risk for developing mood, anxiety and cognitive disorders, and are twice as likely to live with depression compared to those who do not have HIV. A 2010 United Kingdom study showed that one third of HIV-positive men who participated in the survey met the criteria for a post-traumatic stress disorder diagnosis.
For those living with HIV/AIDS, depression is more than just mental hell: it can be a silent killer. Studies show that if people living with HIV feel stigmatized or suffer from mental illness, they are less likely to take their medication properly, which not only puts their own health at risk by not suppressing the individuals’ viral load, but also raises the likelihood that they pass HIV on to others. Individuals living with HIV and depression are also more likely to think about suicide or even attempt to take their own lives.
Despite what we know about the connection between mental health and HIV/AIDS, too few people living with HIV/AIDS, and those invested in their health and happiness, are getting the mental health support they need. That is why we are proud to announce the opening of the state-of-the-art GMHC Carl Jacobs Mental Health Clinic, which will allow us to incorporate innovative treatment and counseling into our service model. Services will be available to adult New Yorkers of all sexual orientations, gender identities, and income levels, regardless of HIV status.
Past traumas, stress, depression, reduced self-esteem, and other challenges can be grueling to deal with. We aim to offer holistic services that address not only our clients’ mental health issues, but their social, spiritual, and health concerns as well. Meanwhile, the ability to reach more HIV-negative people with HIV preventative interventions and mental health services will allow us to help decrease new HIV infections.
It is now more than 35 years since the emergence of HIV/AIDS in the United States. New tools like PEP and PrEP mean we are closer than ever to ending the epidemic. But that dream will not become a reality until all people living with HIV/AIDS have access to the mental health care and services they need and deserve.
Kelsey Louie is the CEO of GMHC. On Twitter @KelseyLouieGMHC and @GMHC.