HIV, Depression, and Suicide

By: Ranier Simons, ADAP Blog Guest Contributor

In the early years of the HIV epidemic, a diagnosis was effectively a death sentence. There were no robust treatment regimens, and life expectancy was low. People suffered a great deal being overcome by opportunistic infections and lived in a great deal of isolation, whether in a hospital setting or at home. This resulted in a high prevalence of depression. Over the past few decades, medical advances in HIV treatment have transformed an HIV diagnosis into a manageable chronic health issue with people living long, healthy lives on antiretroviral therapy. But has mental health advances kept pace?

Photo Source: HIV.gov

Despite the advances, a high rate of depression and suicide remains among people living with HIV (PLWHA). Depression in PLWHA results in worsened disease states and poorer health outcomes. Data shows that depression can hasten the progression of AIDS, resulting in higher viral loads and lower CD4 counts.[1] Many PLWHA also have mental comorbidities that exacerbate their risk of suicide.[2] A recent study being presented at this year’s European Congress of Clinical Microbiology & Infectious Diseases (ECCMID) in Copenhagen, Denmark (15–18 April), further examines depression and suicide in PLWHA.

The observational study utilized data from Denmark’s national health registers from 1995 -2021. The study compared 5,943 PLWHA with 59,430 sex and date-of-birth-matched controls from the general population. Researchers also investigated 5,807 siblings of PLWHA and 82,411 siblings of controls.[3,4] Overall, PLWHA had twice the risk of depression and treatment with electroconvulsive therapy, 1.5 times the risk of using antidepressants, and 3.5 times the risk for suicide.[3,4] These numbers were higher for the first two years after diagnosis. During this period, PLWHA had a threefold higher risk of depression and antidepressant use and a tenfold risk of suicide.[3,4] The study data also showed an increased risk of depression and suicide for the siblings of PLWHA compared to the general population, but it was not as high as the risk for PLWHA.

Photo Source: AIDSmap

This study was specific to Denmark. Other studies in the past, encompassing a global perspective, indicate that globally PLWHA have a 100 times higher risk of suicide than the general population.[5] Researchers agree that many more studies need to be conducted. The main weakness in the data from present and past studies is the variance. These observational studies try to normalize the data by comparing subjects to general population controls. However, past studies contain many differences in subject selection criteria. There are differences in cultural norms of the subjects, variance in types and availability of antiretroviral therapies or lack of them, and even societal factors that vary between continents.

What does not vary is the urgency of the need to address the mental health of PLWHA. Medical science has a focused, concerted effort to develop medications to treat and prevent. The same energy is needed to address psychological needs. Mental health screening of PLWHA must go hand in hand with treatment. PLWHA often have poor social support, face stigma, and don’t have access to trained mental health professionals.[2] Additional research also needs to thoroughly investigate issues such as long-term antiretroviral treatment's biological and cognitive effects or identifying pre-HIV infection mental comorbidities that may cause a higher incidence of depression and suicide once infected. 

Going forward, the mental health assessment and support of PLWHA must be on a continuum. It should start with psychological counseling and support when someone is about to be tested all the way through positive diagnosis, treatment, and long-term survival. Standardizing evidence-based mental health protocols for PLWHA will prevent suicides and improve the lives of PLWHA and their families and friends.

[1] Tran, B. X., Ho, R. C. M., Ho, C. S. H., Latkin, C. A., Phan, H. T., Ha, G. H., Vu, G. T., Ying, J., & Zhang, M. W. B. (2019). Depression among Patients with HIV/AIDS: Research Development and Effective Interventions (GAPRESEARCH). International journal of environmental research and public health, 16(10), 1772. https://doi.org/10.3390/ijerph16101772

[2] Liu, Y., Songtaweesin, W., Tucker, J., Sohn, A., Latkin, C., Hall, B. (2022). Suicide prevention research is crucial to achieving health equity for people with HIV. The Lancet HIV, 9(11),E745-E746, https://doi.org/10.1016/S2352-3018(22)00296-X

[3] American Association for the Advancement of Science. (2023, April 3). People living with HIV at substantially higher risk of depression and suicide, especially in first 2 years after diagnosis. Retrieved from https://www.eurekalert.org/news-releases/984677#.ZC75j2xKVyk.twitter

4) Medical Express. (2023, April 3). People living with HIV at substantially higher risk of depression and suicide. Retrieved from https://medicalxpress.com/news/2023-04-people-hiv-substantially-higher-depression.html

5) Pelton, M., Ciarletta, M., Wisnousky, H., et al. Rates and risk factors for suicidal ideation, suicide attempts and suicide deaths in persons with HIV: a systematic review and meta-analysis. General Psychiatry 2021;34:e100247. doi: 10.1136/gpsych-2020-100247

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.  

Veterans Linkage to Care: Perspectives on HIV, Viral Hep, Opioids & Mental Health

By: Jonathan J. Pena, MSW, Licensed Clinical Social Work Associate (LCSWA)

*** Reprinted with permission from the Community Access National Network (CANN) ***

Approximately 8 percent of the U.S. population are Veterans, numbering over 18 million Americans with most of them being males and older than nonveterans. But those demographics will change in the coming years, with significant increases in ranks among women and minorities (Schultz, 2017). As a society, we tend to view these men and women formerly in uniform as larger than life figures capable of overcoming almost any odds. The reality, however, is there are numerous ongoing public health challenges faced by Veterans in this country once discharged from the military – among them HIV, Hepatitis C, opioid dependence, and mental health conditions. As a society, don't we owe it to them to provide the most timely, appropriate linkages to care and treatment?

To view the full opinion piece, infographic and video, go to: https://www.hiv-hcv-watch.com/blog/veterans-linkage-to-care.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Hope for Now: Addressing Suicide Among PLWHAs

By: Jonathan J. Pena, MSW, Licensed Clinical Social Work Associate (LCSWA)

“This highway's dark and empty.

Just miles and miles of endless road.

I've got a sickness pounding in my head.

I'm at the mercy of the ghost.”[1]

A diagnosis of being HIV positive back when this epidemic began, was synonymous with death. This, now dark road, was paved with unfathomable fear as more questions arose than answers. The virus was no longer the only infection that had occurred, as despair took form and occupied more mental space than hope. While receiving a diagnosis of being HIV positive no longer is a death sentence thanks to antiretroviral medication, people living with HIV/AIDS can sadly still face this type of mental darkness as a part of their lived experiences that leads to suicide ideation and successful suicide attempts.

Photo Source: Getty Images / tadamichi

Annually, an estimated 800,000 people die worldwide from suicide according to the World Health Organization.[2] In looking at the general population who have suicidal ideation, 1 out of 3 will attempt to commit suicide and one death will result from 286 attempts.[3] When compared to the general population, one in every two people living with HIV/AIDS experiences suicidal ideation and one attempt at suicide will occur according to a study conducted by the Penn State University College of Medicine.[4] Additionally, data analysis from 185,000 people living with HIV/AIDS indicated that this population were 100 times more likely to die from attempted suicide in contrast to the general population.[5] 

“I sought after, after reasons to stay

I was lost, I was lost”[6]

People living with HIV/AIDS experience risk factors that can contribute to the strong sentiments of feeling lost within their diagnosis. One of the most profound sources that impacts healthy experiences of happiness is the connectivity we received from other people. People serve as the bridge and catalyst of shared experiences across time and locations. Societal stigma towards HIV/AIDS works to sever these dynamic and powerful human connectivity by devaluing basic human respect and compassion. Society often labels people living with HIV/AIDS as other within communities and this population quickly become outcasts. Through this process, shame and guilt can be fostered and become increasingly hard to overcome if we are not effectively targeting and addressing mental illness within this population. Dr. Paddy Ssentongo, a researcher and epidemiology doctoral student stated that “there is an urgent need to prioritize mental health screening and care into all HIV testing and treatment settings.”[7] As a social worker within mental health, I really resonate with this statement. Targeting HIV testing and treatment settings can help clinicians to target people who may be suffering with trying to find reasons to stay in this world because the darkness they feel from society as a result of their diagnosis. Additionally, this population faces other risk factors like neurological changes, poverty, lack of access to care and advanced disease.[8] 

“How can I instill such hope, but be left with none of my own?

What if I could sing just one song and it might save somebody’s life?”[9]

When we shift our perspective of HIV/AIDS from an individual issue to community healing, we usher in hope that may have been lost with a positive diagnosis. We need to strengthen and revitalize our approach to HIV/AIDS treatment and prevention to include mental health screening. Effective patient centered care isn’t solely about the diagnosis and approaching it as such would greatly diminish our ability to make effective, long lasting changes when it comes to treatment as a whole. We need to incorporate more of the human component to HIV treatment and care because it is within that sphere that we get to learn about the lived experiences that are occurring. Again, remember that people are LIVING with HIV/AIDS, so we need to understand how the various aspects of their lives intersect with one another. This provides invaluable information that can useful in targeting mental health screening across areas like healthcare, poverty, childcare, employment, and education, just to name a few. 

Living with HIV/AIDS doesn’t need to become a dark and empty pathway that extinguishes the hope of a continued happy and fulfilled life. Modern medicine has changed the landscape of HIV treatment and care opening up the road of this population to live long and healthy lives. Now, in order to strengthen this approach to longevity, we need to remember our own humanity and incorporate that element of strength in order to give hope to those of us sitting in the dark.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

[1] Song Lyrics by City of Colour, “Hope for Now”.

[2] Cox, T. (2021). People living with HIV/AIDS have a significantly higher risk of suicide. Penn State News. Retrieved from: https://news.psu.edu/story/661753/2021/06/28/research/people-living-hivaids-have-significantly-higher-risk-suicide#.YOhQh_nmJ0Z.twitter.

[3] Cox. People living with HIV/AIDS have a significantly higher risk of suicide.

[4] Cox. People living with HIV/AIDS have a significantly higher risk of suicide.

[5] Cox. People living with HIV/AIDS have a significantly higher risk of suicide.

[6] City of Colour. Hope for Now.

[7] Cox. People living with HIV/AIDS have a significantly higher risk of suicide.

[8] Cox. People living with HIV/AIDS have a significantly higher risk of suicide.

[9] City of Colour. Hope for Now.

HIV/AIDS Fireside Chat Retreat in New Jersey / New York Tackles Pressing Issues

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Weehawken, New Jersey among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS. The Fireside Chat took place on Thursday, December 5th, and Friday, December 6th. U = U, Molecular HIV Surveillance, and Mental Health were evaluated by 20 diverse leaders in the fight against the HIV/AIDS epidemic.

Photo Source: Getty Images

The Fireside Chat included moderated white-board style discussion sessions on the following issues:

• U = U: A Foundation for Ending the HIV Epidemic — moderated by Murray Penner, Executive Director, North America, Prevention Access Campaign
• Ryan White Program: Is Molecular HIV Surveillance a Public Health Tool or Weapon to Fuel Stigma  — moderated by Brandon M. Macsata, CEO, ADAP Advocacy Association (planned facilitator was sick)
• Mental Health: Implications of Co-Occurring Diagnosis of a Mental Condition and HIV/AIDS  — moderated by Brandon M. Macsata, CEO, ADAP Advocacy Association (planned facilitator was sick)

The discussion sessions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Fireside Chat. The following represents the attendees:

• Tez Anderson, Founder, Let's Kick ASS (AIDS Survivor Syndrome)
• Guy Anthony, Founder, Black, Gifted & Whole
• William E. Arnold, President & CEO, Community Access National Network (CANN)
• Robert Breining, spokesperson, Positively Fearless
• Patricia Charleston, Program Supervisor, Gaudenzia, Inc.
• Jeffrey S. Crowley, Distinguished Scholar & Program Director at the Infectious Disease Initiatives, O'Neill Institute for National and Global Health Law, Georgetown Law
• Hilary Hansen, Executive Director, US Patient Advocacy & Strategic Alliances, Merck
• Catherine Hanssens, Founding Executive Director, The Center for HIV Law and Policy
• Ben Kelly, VP Operations, Maxor National Pharmacy Services
• Scott Kramer, President & Psychotherapist, Affirming Psychotherapy LCSW PC
• Jen Laws, policy consultant
• Vickie Lynn, Visiting Instructor, USF
• Brandon M. Macsata, CEO, ADAP Advocacy Association
• Julie Marston, Executive Director, Community Research Initiative of New England, Inc.
• Ann-Margaret Navarra, Faculty - Assistant Professor, NYU Rory Meyers College of Nursing
• Stephen Novis, Director, Government Relations, ViiV Healthcare
• Murray Penner, Executive Director, North America, Prevention Access Campaign
• Alan Richardson, Executive Vice President of Strategic Patient Solutions, Patient Advocate Foundation
• Lee Storrow, Executive Director, North Carolina AIDS Action Network (NCAAN)
• Marcus Wilson, National Policy & Advocacy Director, Johnson & Johnson

The ADAP Advocacy Association is pleased to share the following brief recap of the Fireside Chat.

Undetectable = Untransmittable:

Murray Penner provided a basic overview on the science behind "undetectable equals untransmittable" ("U=U"), which is clear and indisputable. Treatment as prevention dates back to the 1990s, including preventing mother-to-child transmission. According to Penner, there have been four large international studies that have demonstrated U=U is sound public health policy.

According to Penner: "Four major scientific studies have proven that HIV-positive individuals who have an undetectable viral load and stay on their medications do not transmit the virus to sexual partners. The findings were initially announced in 2008 with the Swiss Statement, and they were confirmed again in 2016. For many people diagnosed with the virus, the news is nothing short of life-changing. Diagnosis doesn’t mean no more satisfying relationships. And that lifts people out of depression. They feel like they can be intimate and free in their sexual relations, and that’s at the heart of it.”

It was noted that U=U has been endorsed by the World Health Organization ("WHO"), as well as the U.S. Centers for Disease Control & Prevention ("CDC"). The foundation of U=U includes treatment, labs, and connection to care (or "TLC"), and it provides the public health argument for the U=U campaign.

The discussion also focused on the role of providers in educating patients and the general community, as well as how best to communicate the U=U message. There was also some conversation about how the messaging needs to adapt to address diverse communities. The group agreed more needed to be done to use U=U to change the outdated HIV Criminalization laws.

The following materials were shared with retreat attendees:

• Providers Should Discuss U=U with all Patients Living with HIV
• HIVMA Pocket Guide for Providers 
• CDC Letter Approving U=U 
• U=U Basic Fact Sheet – October 2019
• Basic Fact sheet from FHI 360 
• Video: Chloe Orkin is past-chair of the British HIV Association and Gareth Thomas is a rugby player in the U.K. (from Wales) 
• Resources from Prevention Access Campaign (U=U)

The ADAP Advocacy Association would like to publicly acknowledge and thank Murray for facilitating this important discussion.

Molecular HIV Surveillance:

Molecular HIV surveillance involves data collection and sharing between healthcare practitioners and public health departments to track individual treatment resistance, as well as trends in HIV infections. It also leverages cluster detection to identify new infections.

The discussion included an overview on healthcare & privacy rights, which fuel many of the concerns expressed by patients, advocacy groups, and some leading civil rights organizations. Background context included HIV-related stigma, dating back to early 1980s to current times; it also touched on HIV-related criminalization.

Weighing the pros and cons of this took was at the center of the debate on the issue. Whereas it is favored by Health Departments and some public health advocates, there remains considerable push-back from the community. There is no informed consent by patients for data collected using individuals’ blood samples. State and local health departments report de-identified data to the CDC, but there are obvious patient privacy concerns.

HIV Criminalization occupied a lot of the group's time during the discussion. Draconian HIV-specific criminalization laws still exist in 34 states; another 24 states have used general criminal statutes against people living with HIV for “HIV exposure” or non-disclosure of HIV status (CHLP, 2019). These laws relegate people living with HIV to second-class citizenship for numerous reasons. According to the Center for HIV Law and Policy, state HIV criminalization laws “criminalize non-disclosure of HIV status or exposure of a third party to HIV; make exceptions to confidentiality and privacy rights of people living with HIV; provide for sentence enhancements for people living with HIV convicted of underlying crimes such as prostitution and solicitation; and require sex offender registration for people living with HIV” (CHLP, 2019).

The following materials were shared with retreat attendees:

• Molecular HIV surveillance: public health tool or weapon?

Jeffrey R. Lewis, President & CEO of the Legacy Health Endowment, was suppose to facilitate this discussion on Molecular HIV Surveillance but he was unable to attend due to illness. The ADAP Advocacy Association thanks him, nonetheless.

Mental Health:

Mental health and its intersection with HIV/AIDS included important statistics about both health issues in the United States. Research has found considerable overlap between many mental health disorders and HIV infection. Individuals who are receiving care for a mental health condition are four times as likely to be living with HIV compared to the general population, according to a multisite study of the prevalence of HIV with rapid testing in mental health settings.

Increasingly, it is an emerging issue among an aging population living with HIV/AIDS as it has become a chronic disease. As of 2015, over half of the 1.6 million individuals with HIV/AIDS are  50 years, or older. The discussion presented an excellent opportunity to discuss AIDS Survivor Syndrome, which is the term coined by Tea Anderson to describe the “spectrum of sustained trauma survivorship resulting from living through the AIDS pandemic.”

An important tool to address the unmet needs is targeted case management under Medicaid, although not widely utilized for individuals living with HIV/AIDS. Assertive community treatment is an intensive and highly integrated approach for community mental health service delivery. Four states have taken this approach to address the needs of the HIV community.

Once again, HIV Criminalization was discussed because it is linked to numerous mental health conditions among individuals living with HIV/AIDS. According to the CDC's Medical Monitoring Project, four in five HIV-positive patients report feeling internalized HIV-related stigma; two in three say that it is difficult to tell others about their HIV infection; one in three report feeling guilty or ashamed of their HIV status; and one in four say that being HIV-positive makes them feel dirty or worthless (CDC, 2018).

The following materials were shared with retreat attendees:

• Implications of Co-Occurring Diagnosis of a Mental Condition and HIV/AIDS
• MENTAL HEALTH INFOGRAPHIC #1: Implications of Co-Occurring Diagnosis of a Mental Condition and HIV/AIDS (August 2019)
• AIDS Survivor Syndrome & Understanding the Linkages between Mental Health and HIV/AIDS
• MENTAL HEALTH INFOGRAPHIC #2: Implications of Co-Occurring Diagnosis of Depression and HIV/AIDS
• Implications of Health Stigma, Mental Health and HIV/AIDS
• MENTAL HEALTH INFOGRAPHIC #3: Implications of Health Stigma, Mental Health & HIV/AIDS

John Williamson, candidate for Masters in Social Work at Fordham University, was suppose to facilitate this discussion on Mental Health but he was unable to attend due to illness. The ADAP Advocacy Association thanks him, nonetheless.

Additional Fireside Chats are planned in 2020.

References:

• Centers for Disease Control and Prevention. (2018). Medical Monitoring Project. Retrieved from: https://www.cdc.gov/hiv/statistics/systems/mmp/resources.html#Fact%20Sheets,%20
• Center for HIV Law and Policy (March 2019). HIV Criminalization in the United States: A Sourcebook on State and Federal HIV Criminal Law and Practice (Third Edition). Retrieved online at http://www.hivlawandpolicy.org/sourcebook. 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Now a chronic disease, HIV is turning gray

By: Jeffrey R. Lewis

On June 5, 1981, a new public health threat reared its ugly head in the United States: five cases of Pneumocystiscarinii pneumonia (“PCP”) were reported by the Centers for Disease Control & Prevention (“CDC”) in its Morbidity & Mortality Weekly Report (“MMWR”) (CDC, 2001). What was first identified as gay-related immune deficiency, or GRID (Altman, 1982), would later be labeled by scientists as the Acquired Immunodeficiency Syndrome (“AIDS”).  Some years later, it was determined the human immunodeficiency virus (“HIV”) caused AIDS, and it started the dark legacy behind HIV/AIDS.

Photo Source: NAMES Project

This legacy lives on. Since 1982, an estimated 692,790 Americans have died of HIV-related illnesses (Cichocki, 2019). Fortunately, things are changing. Major advances in the care and treatment available to people living with HIV-infection means that they are living longer. In other words, HIV is turning gray!

In the United States today, young adults with HIV-infection who adhere to their antiretroviral (“ARV”) treatment maintain lower viral loads and living longer. Many such patients are expected to mirror the life expectancy of someone in the general population, which is around 78 years (Preidt, 2017). The advent of the highly active antiretroviral therapies (“HAART”) has turned HIV/AIDS from a death sentence to a manageable, chronic illness similar to diabetes, epilepsy, or cardiovascular disease (WHO, 2017). This stands in stark contrast to the early days of the AIDS epidemic (before there was even an HIV-specific test), when life expectancy was often only 1 or 2 years (Quora, 2017).

Several years ago, Prudential Financial Inc. became the first major life insurance company to offer life insurance products to people living with HIV-infection. Although Prudential has discontinued its life insurance products for people with this disease, multiple other companies are now offering policies to people with HIV (LIB, 2019), further suggesting that HIV is viewed as a chronic rather than a fatal, illness.

There are many socio-economic variables contributing to life expectancy, but modern HIV treatment plays a significant role (Preidt, 2017) in extending life. This underscores the need to afford people with HIV the opportunity to access timely, appropriate HIV care and treatment, regardless of their ability to pay for it. Public safety-net assistance, such as the AIDS Drug Assistance Program (“ADAP”) and Medicaid, deserve the ongoing support of our nation’s leaders, along with robust federal funding and liberalized state drug formularies. Anything less does a true disservice to those who stand to lose their lives to this epidemic.

From a historical perspective, we should recall that the partnerships forged between advocacy groups, government agencies, and industry changed the medical, scientific, and political landscape…for the better! Despite initial distrust among stakeholders, slowly, this partnership inched us toward stemming the tidal wave of AIDS-related deaths among family, friends, neighbors, and colleagues (Arnold, 2019).

Fast forward to 2016, when half of the people living with HIV-infection are aged 50 and older (CDC, 2019). What once seemed unthinkable is now more common. According to the CDC, in 2016, an estimated 327,000 people aged 55 and older were living with HIV. Significant majorities of them had received some care (69%), were retained in care (56%), or were virally suppressed (60%). That isn’t to suggest the epidemic is over, because that same year, there were 10,944 deaths among people in the United States aged 50 and older with diagnosed HIV (CDC, 2019).

The demographics behind HIV continue to shift. By next year, as many as 65-70% of people living with HIV-infection will be age 50 or older (Birnstengel, 2019). That is, an estimated 660,000 of  1.1 million women, men, and transgender people living with HIV/AIDS will be over age 50 (Anderson, 2018). Similar to the general population, older patients in this cohort are changing the face of healthcare. We should be doing more to address their needs.

As the face of the epidemic has aged, so have the challenges facing people living with HIV-infection. For many long-term survivors, the evolution of this epidemic has been mentally and emotionally taxing. After all, they watched so many people around them lose their battles to AIDS, only to be left wondering: why did I survive?

For those patients who lived through the dark days of the epidemic, it has also taken its toll on their bodies. AIDS-defining illnesses among people aging with HIV have been replaced with HIV-associated non-AIDS conditions. Common are cardiovascular disease, lung disease, certain cancers, dementia, and liver disease (HIV.gov, 2019). Aging with HIV is also presenting unique health changes for older women living with HIV.

As aging with HIV slowly gains notoriety, some troubling trends are emerging. Co-morbidities among long-term survivors typically associated with people in their 60s and 70s are striking two decades earlier. This phenomenon is most likely linked to the immune system inflammation caused by the virus (POZ, 2019).

The increased likelihood of co-morbidities is ominous. According to AIDSinfo.gov, “People with HIV are more likely to have type 2 diabetes than people without HIV. Additionally, some HIV medicines may increase the risk of type 2 diabetes in people with HIV” (2019). HIV-infected patients are at higher risk (61%) of cardiovascular disease compared to the general population (Triant, 2013). And among patients with lower CD4 counts, their prevalence for developing HIV-associated dementia (7%-27%) increases during the later stages of infection (Huang, 2018). These co-morbidities represent only a few faced by this graying population.

Despite ambitious plans to End the Epidemic by 2030, our public health system needs to adapt to these new challenges. Older HIV patients struggle to cope with many obstacles, among them mental health problems, homelessness, and co-morbidities, daily.

The modern marvels behind HAART have done little to help these long-term survivors with the co-occurring mental health conditions that often plague them, such as the guilt associated with survival when so many others have died, depression, anxiety, or the loneliness that many endure. Tez Anderson, a longtime AIDS activist, has dubbed this condition “AIDS Survivor Syndrome” (Anderson, 2016).

Anderson summarized how many long-term survivors feel about the epidemic: “The people and agencies providing our care is more focused on the future, while older adults are regarded as relics of a bygone era. Our lives are defined by mass causalities, enormous loss, caretaking, illness, and ensuing trauma. We hear little about the astounding resilience of the first generation of people with HIV/AIDS. We do not think of individuals living with this virus for 20 and 30-plus years as the pioneers of the AIDS epidemic. We are survivors of the worst epidemic in history. Alas, too often we are just thought of as old” (Anderson, 2018).

Research has shown that anxiety, cognitive or mood disorders, and depression are common among people living with HIV-infection, yet fewer than one-half of the cases get recognized clinically (Williamson, 2019). Among patients who are dually diagnosed with HIV and depression, as many as eight in 10 are not receiving psychosocial care (Williamson, 2019).

Photo Source: HIV.gov

We have an opportunity to integrate HIV/AIDS service programs and mental health care, which would improve the overall health and outcomes of these patients. Long Term Survivors Awareness Day, which is now recognized nationally on June 5th of each year, represents a good first step in raising the awareness to make the needed changes.

There is a strong linkage between worsening health status and unstable housing status (Macsata, 2017), yet there remains a disproportionate number of people living with HIV/AIDS in care who are homeless or living in marginalized housing environments (NCH, 2009). It is even more concerning because unstable housing status often leads patients to under-utilize the care and treatment needed to achieve viral suppression (Milloy, 2013).

Earlier this year, the San Francisco Chronicle ran, “Aging onto the Street,” highlighting the urgency behind homelessness and its growing impact on people aged 50 and over. According to the Chronicle’s reporting, among survey respondents older than 50 who participated in a recent study, more than 40 percent had experienced homelessness for the first time after turning 50. The piece also features 62-year-old Michelle Myers, who is homeless, HIV-positive, and newly diagnosed with cancer (Fagan, 2019).

I’ve always been moved by the journey experienced by my friend and colleague, Wanda Brendle-Moss, from Winston-Salem, NC. Wanda, who is a registered nurse who cared for AIDS patients during the early days, when some front-line healthcare staff refused to do so, in 2009 found herself HIV-positive and living in her car. Wanda persevered with assistance from family, friends, and a rural AIDS Service Organization. Not everyone has been so fortunate, however.

While gone are the days of local obituaries sprinkled with announcements of another friend or neighbor lost to AIDS, their struggles remain visible on the faces of the many people who remain with us. The face of the epidemic ages before us. It is our societal obligation to help these long-term survivors – whether it is through expanded mental health services, or making affordable housing more readily available, or finding clinicians to treat their emerging co-morbidities. HIV may be graying, but that doesn’t mean we should allow these patients to be forgotten.

And, our ultimate focus should be on the creation of a community-based long term care system that is blind to disabilities, focused on patient-centered care, and a sliding fee scale to ensure that people who can afford to pay more do, and others are not penalized.

The need is great and growing.  The time for real legislative action is now.

Editor's Note: Jeffrey Lewis is the President and CEO of Legacy Health Endowment in Turlock, Ca. The views expressed our his own. He can be reached at jeffrey@legacyhealthendowment.org.

References:

• AIDSinfo.gov (2019, October 18). HIV and Diabetes. U.S. Department of Health & Human Services. Retrieved online at https://aidsinfo.nih.gov/understanding-hiv-aids/fact-sheets/22/59/hiv-and-diabetes.
• Altman, Lawrence K. (1982, May 11). NEW HOMOSEXUAL DISORDER WORRIES HEALTH OFFICIALS. The New York Times. Retrieved online at https://www.nytimes.com/1982/05/11/science/new-homosexual-disorder-worries-health-officials.html.
• Anderson, Tez (2016, August 8). What is AIDS Survivor Syndrome? And Why You Need to Know. LetsKickASS. Retrieved online at https://letskickass.hiv/what-is-aids-survivor-syndrome-dc0560e58ff0.
• Anderson, Tez (2018, September 6). Older Adults with HIV: The Forgotten Majority. The ADAP Blog. Retrieved online at https://adapadvocacyassociation.blogspot.com/2018/09/older-adults-with-hiv-forgotten-majority.html.
• Arnold, William E. (2019). National ADAP Working Group. Community Access National Network.
• Avert (2019, September 26). GROWING OLDER AND AGEING WITH HIV. Retrieved online at https://www.avert.org/living-with-hiv/health-wellbeing/growing-older-ageing.
• Birnstengel, Grace (2019, July 5). Dual Stigma: HIV Positive and Over 50. Next Avenue. Retrieved online at https://www.nextavenue.org/stigma-hiv-positive-and-over-50/.
• Centers for Disease Control & Prevention (2019, November 12). HIV and Older Americans. Division of HIV/AIDS Prevention, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. Retrieved online at https://www.cdc.gov/hiv/group/age/olderamericans/index.html.
• Cichocki, RN, Mark (2019, August 21). How Many People Have Died of HIV? Despite a reversal in AIDS deaths, challenges remain. Very Well Health. Retrieved online at https://www.verywellhealth.com/how-many-people-have-died-of-aids-48721.
• Fagan, Kevin (2019, March 8). Aging onto the street. San Francisco Chronicle. Retrieved online at https://www.sfchronicle.com/bayarea/article/Aging-onto-the-street-Nearly-half-of-older-13668900.php.
• “First Report of AIDS” (2001). Morbidity & Mortality Weekly Report 50 (21): 1 June 2001. Retrieved online at https://www.cdc.gov/mmwr/PDF/wk/mm5021.pdf.
• Huang, Juebin, MD (March 2018). HIV-Associated Dementia. Merck. Retrieved online at https://www.merckmanuals.com/professional/neurologic-disorders/delirium-and-dementia/hiv-associated-dementia.
• Life Insurance Blog (2019, October 11). HIV Life Insurance with Prudential. Retrieved online at https://www.lifeinsuranceblog.net/hiv-life-insurance-with-prudential/.
• Macsata, Brandon M. (2017, June 8). Linkages to Care - Housing is Healthcare: Linking Stable Housing & Medication Adherence. The ADAP Blog. Retrieved online at https://adapadvocacyassociation.blogspot.com/2017/06/linkages-to-care-housing-is-healthcare.html.
• HIV.gov (2019, September 19). Aging with HIV – Growing Older with HIV. U.S. Department of Health & Human Services. Retrieved online at https://www.hiv.gov/hiv-basics/living-well-with-hiv/taking-care-of-yourself/aging-with-hiv.
• Milloy, M. J., Marshall, B. D., Montaner, J., & Wood, E. (2012). Housing status and the health of people living with HIV/AIDS. Current HIV/AIDS reports, 9(4), 364–374. doi:10.1007/s11904-012-0137-5. Retrieved online at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3693560/.
• National Coalition for the Homeless (2009). HIV/AIDS and Homelessness. Retrieved online at http://www.nationalhomeless.org/factsheets/hiv.html.
• POZ Magazine (2019, July 19). Aging and HIV. Retrieved online at https://www.poz.com/basics/hiv-basics/hiv-aging.
• Preidt, Robert (2017, May 10). HIV Life Expectancy Nears Normal With Treatment – Still small, but persistent gaps for some groups with HIV, global health expert says. WebMD. Retrieved online at https://www.webmd.com/hiv-aids/news/20170510/life-expectancy-with-hiv-nears-normal-with-treatment#1.
• Quora (2017). What is the life expectancy of a person diagnosed with HIV in 1982? Retrieved online at https://www.quora.com/What-is-the-life-expectancy-of-a-person-diagnosed-with-HIV-in-1982.
• Triant V. A. (2013). Cardiovascular disease and HIV infection. Current HIV/AIDS reports, 10(3), 199–206. doi:10.1007/s11904-013-0168-6. Retrieved online at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3964878/.
• World Health Organization (2017). HIV: from a devastating epidemic to a manageable chronic disease. Ten years in public health 2007-2017. Retrieved online at https://www.who.int/publications/10-year-review/hiv/en/.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Implications of Health Stigma, Mental Health and HIV/AIDS

By: John Williamson, intern, ADAP Advocacy Association, and candidate for Masters in Social Work

Over decades, we have made considerate advances to turn HIV into a chronic but manageable condition. Despite these advances, people living with HIV/AIDS (PLWHA) continue to endure discrimination and stigma from their communities, families, and professionals. Consequently, millions of PLWHA are impeded from accessing preventative and treatment services (World Health Organization, 2011). In 2014, UNAIDS cited the fear of stigma and discrimination as the primary reason individuals were reluctant to have an HIV test, take HIV medications such as antiretroviral treatments (ART) and disclose their HIV status. As researchers continue to explore the effects of stigma on the mental well-being of PLWHA, they have found significant evidence of the association between HIV related stigma and social outcomes such as heterosexism, racism, and poverty (Earnshaw, V., Bogart, L., Dovidio J., Williams, D., 2013).

For PLWHA, mental health conditions are among the most common obstacles regardless of ethnicity or gender and can impact behaviors related to accessing healthcare services and thereby effecting ones health and overall quality of life (Yi, S., Chhoun, P., Suong, S., Thin, K., Brody, C., & Tuot, S., 2015). According to HIV.gov (2019), people who are HIV positive are at an increased risk of developing an anxiety, cognitive or mood disorder, and depression. A multi-site cross sectional study estimated that individuals who are receiving care for a mental health condition are four times as likely to be living with HIV as compared to the general population (M.Blank et al., 2014). In South Africa, researchers conducted a national survey and found that 44 % of PLWHA had a diagnosable mental health condition; depression accounted for 30 %, major depressive disorder 11 %, and alcohol abuse disorder for 12 % (Freeman M, Nkomo N, Kafaar Z, Kelley K., 2008). The American Psychiatric Association and Office of HIV Psychiatry reported results from a study that found 19% of males involved in psychiatric care were HIV positive and of 320 patients between the ages of 20 and 40, AIDS was the leading cause of death (2012).

HIV stigma refers to negative beliefs, feelings, and attitudes toward PLWHA while HIV discrimination refers to the unfair and unjust treatment based on one’s real or perceived HIV status (Centers for Disease Control and Prevention, 2019). According to UNAIDS (2015), in a study conducted across 35% of countries with available data, more than 50% of people reported that they held discriminatory attitudes toward PLWHA. In 2012, researchers conducted surveys to identify attitudes toward PLWHA and found that many still associated HIV/AIDS with things such as death, fear, promiscuity, and irresponsibility while the majority of participants also admitted to actively avoiding PLWHA (Herek, Capitanio, & Widaman, 2002).

Perceived fear of stigma and discrimination is one of the primary reasons people avoid getting an HIV test. With reluctance to taking an HIV test, people are placed at an increased risk of being diagnosed late meaning the virus may have progressed to AIDS making treatments more difficult as well as increasing the chance of transmitting the infection to others. Being diagnosed with HIV/AIDS involves many lifestyle changes including strict medical treatments, changes in nutrition, and learning how to navigate the medical and social aspects of being HIV positive. These changes can act as a consistent reminder to PLWHA of their status and the stigma associated with the illness making it difficult to adjust. Research has found that PLWHA are diagnosed with depression at a rate of two to five times higher than individuals who are HIV negative and are diagnosed with generalized anxiety disorder almost eight times the rate of someone who is HIV negative (Bing, et al., 2001).

Photo Source: National Minority AIDS Council

During the early years of the epidemic many false beliefs such as HIV/AIDS is the result of moral fault or personal irresponsibility, its only transmission is through sex, and an association of death were developed (Varni et al., 2012). Regardless of advances in medical treatments and public education, many of these perceptions are still found throughout communities. According to the People Living with HIV Stigma Index, findings from 50 countries indicated that about one in every eight PLWHA is being denied health services due to discrimination or stigma (UNAIDS, 2017). In South Africa, a group of women were given access to Vaginal gels and pills as a means of HIV prevention. Many of the young women involved in the study reported fear of using these products because they may be perceived as HIV positive (The Well Project, 2016). Another study, conducted in Mexico found a strong correlation between self-stigma and having never been tested for HIV which included the perception of HIV testing as being associated with homosexuality (Pines, Meza, EV, et al., 2016).

Stigma against PLWHA can be seen in hospitals, communities, families and in our court system. Currently, there are thirty-three states and two U.S. territories that have HIV-specific statutes criminalizing the nondisclosure of one’s HIV status and exposing others to the virus (Lehman, Carr, Nichol, Ruisanchez, Knight, Langford, et al., 2014). Many of the statutes include severe punishments including 25 years to life in prison for being accused of nondisclosure. While many states have included enhancements adding time in prison or additional punishments for people who have already been imprisoned such as exposing a public safety officer to bodily fluids and in some cases, this extends to urine and saliva (Harsono et al., 2017).

Although many states passed HIV exposure laws in the 1980’s, the passing of the Ryan White Care Act in 1990 was pivotal in developing US HIV exposure laws (Harsono, Galletly, O’Keefe, & Lazzarini, 2017). In order to receive federal funds, one of the conditions of the Ryan White Care Act was to require that all US states have a legal mechanism to prosecute individuals who were knowingly exposing others to the virus.

For countries with laws, rules, or policies that discriminate against PLWHA there is the risk of further alienating and excluding individuals and therefore reinforcing stigmatization surrounding HIV/AIDS. UNAIDS (2014) has reported that there are currently 72 countries with laws aimed at prosecuting PLWHA. There are currently 17 countries where upon discovering one’s positive status, individuals are at risk for deportation, in 35 countries there are laws that restrict one’s entry and residency for PLWHA, and in 5 countries PLWHA are completely banned from entry (UNAIDS, 2015).

Many of these laws undermine public health efforts to prevent further exposure to HIV by increasing stigma and discrimination. Through the criminalization of HIV, we are perpetuating a stigma that deters people from getting tested and we are placing the responsibility of prevention on the persons living with HIV/AIDS. Research on the efficacy of HIV exposure laws have repeatedly found little evidence of any protective benefits of these laws. In one study, researchers found that awareness of states HIV exposure laws was not associated with any HIV prevention related behaviors while another study found no association between one’s residence in a state with HIV exposure laws and the number of unprotected sexual partners or sex without prior HIV status disclosure (Harsono, et al., 2017). Delvande, Goldman, and Sood (2010) conducted a multi-state sample that found evidence to support the concern that HIV exposure laws actually inadvertently deter PLWHA from disclosing their HIV status and for people living in states with a greater than average number of HIV related prosecutions, they were less likely to disclose their positive status to their partners. Many not for profit organizations throughout the United States such as Lambda Legal have been working diligently to impact public policy at a local, state, and federal level to help protect and advance the rights of PLWHA. In their publication “15 Ways HIV Criminalization Laws Harm Us All” they outline the way these laws harm public health, resulting in unjust prosecutions, and primarily serve to stigmatize and oppress PLWHA.

Photo Source: Equip Health

Recognizing that HIV-related stigma acts as a barrier to both engagement and prevention, Turan, Hatcher, Weiser, et al., (2017) designed a conceptual framework that highlights the dimensions of HIV related stigma to identify the mechanisms by which stigma leads to worse health outcomes for PLWHA. Turan et al. found that stigma can have negative impacts on the health of PLWHA both directly (physiologically) and indirectly (engagement in care behaviors). The researcher’s framework recognizes the effects of stigma at both a structural level and an individual level.  For example, if students decide to specialize in less stigmatized diseases or work in more affluent neighborhoods we loose a great amount of resources at a structural level; whereas, at an individual level through internalized stigma and micro level mechanisms such as depression, PLWHA are at a higher risk for negative health outcomes. Understanding the dimensions of stigma and its effects on populations can assist healthcare professionals in treating their consumers more effectively and recognize new areas for care.

Limited attention has been given to research on the linkage between HIV related stigma and discrimination and the mental well being of PLWHA. By furthering research, we can learn how to develop more effective community-based interventions that aim at reducing stigma and discrimination and assist PLWHA to cope with obstacles facing their physical and mental health. Increasing the quality of HIV care, revising health policies and legal protections, as well as reviewing strategies for reducing stigma are just some of the ways we can we can begin working to reduce false perceptions of PLWHA and create a more inclusive atmosphere. We must also work to address the stigmatizing and oppressive laws that create an environment where they can be used as coercive tools, where a false accusation is used to manipulate the PLWHA, or where confidentiality is compromised when your partner or healthcare professional share your status (Lambda Legal, 2006). Like the framework posed by Turan et al. (2017), we must address it structurally and individually.

References:

• Bing, E., Burnam, M., Longshore, D., Fleishman, J., Sherbourne, C., London, A., et al. (2001). Psychiatric disorders and drug use among human immunodeficiency virus infected adults in the United States. Archives of General Psychiatry, 58, 721-728
• Centers for Disease Control and Prevention. (2019). Dealing with stigma and discrimination. Retrieved from: https://www.cdc.gov/hiv/basics/livingwithhiv/stigma-discrimination.html
• Delvande, A., Goldman, D., Sood, N. (2010). Criminal prosecution and HIV related risky behaviors. Journal of Law and Economics, 53 (4): 741-782
• Earnshaw, V., Bogart, L., Dovidio J., Williams, D.(2013). Stigma and racial/ethnic HIV disparities: moving toward resilience. American Psychology, 68: 225–236. 10.1037/a0032705
• Freeman M., Nkomo N., Kafaar Z., & Kelley K. (2008). Mental disorder in people living with HIV/AIDS in South Africa. South African Journal of Psychiatry, 38: 480–500.
• Harsono, D., Galletly, C, O’Keefe, E., and Lazzarini, Z. (2017). Criminalization of HIV Exposure: A review of empirical studies in the United States. AIDS Behavior, (1): 27-50 
• Herek, G., Capitanio, J., & widaman, K. (2002). HIV related stigma and knowledge in the United States: Prevalence and trends. American Journal of Public Health, 92, 371-377
• HIV.gov (2019). US Statistics: Fast facts. Retrieved: https://www.hiv.gov/hiv- basics/overview/data-and-trends/statistics
• Lambda Legal (2006). 15 Ways HIV criminalization laws harms us all. Retrieved from: https://www.lambdalegal.org/sites/default/files/publications/downloads/15-ways-hiv- criminalization-laws-harm-us-all.pdf
• Lehman, J., Carr, M., Nichol, A., Ruisanchez, A., Knight, D., Langford, A., et al. (2014). Prevalence and public health implications of state laws that criminalize potential HIV exposure in the United States. AIDS Behavior, 18(6): 997-1006
• Mogga, S., Prince, M., Alem, A., Kebede, D., Stewart, R., Glozie,r N., Hotopf, M.(2006). Outcome of major depression in Ethiopia: population-based study. British Journal of Psychiatry, 189, 241-6
• Pines, H., Goodman-Meza, D., Pitpitan, E., et al (2016). HIV testing among men who have sex with men in Tijuana, Mexico: A cross-section study. Doi: 10.1136/bmjopen-2015-010388
• PLHIV Stigma Index (2015). We are the change: Dealing with self-stigma and HIV/AIDS: An experience from Zimbabwe. Retrieved from: http://www.stigmaindex.org/sites/default/files/reports/Zimbabwe%20People%20Living% 20with%20HIV%20Stigma%20Index%20Report_15-12-14pdf.pdf
• Steward W, Herek G, Ramakrishna J, Bharat S, Chandy S, Wrubel J, Ekstrand M.(2008).HIV-related stigma: Adapting a theoretical framework for use in India. Social Science and Medicine, 67(8):1225-35
• Turan, B., Hatcher, A., Johnson, M., Rice, W., Turan, J. (2017). Framing mechanisms linking HIV related stigma, adherence to treatment, and health outcomes. American Journal of Public Health, 107(6): 863-869
• UNAIDS (2015). On the fast-track to end AIDS by 2030: Focus on location and population. Retrieved from: https://aidsdatahub.org/sites/default/files/publication/World_AIDS_Day_report_2015.pdf
• UNAIDS(2017). Make some noise for zero discrimination on 1 March 2017. Retrieved from: https://aidsdatahub.org/sites/default/files/publication/UNAIDS_zero-discrimination_2017.pdf
• Varni, S., Miller, C., Mccuin, T., and Solomon, S. (2012). Disengagement and engagement coping with HIV/AIDS stigma and psychological wellbeing of people with HIV/AIDS. Journal of Social and Clinical Psychology, 31(2): 123-150
• The Well Project (2016). Stigma and discrimination against women living with HIV. Retrieved from: https://www.thewellproject.org/hiv-information/stigma-and-discrimination-against- women-living-hiv
• World Health Organization (2011). Global HIV/AIDS response: Epidemic update and health sector progress towards universal access: Progress report 2011. Retrieved from: https://www.who.int/hiv/pub/progress_report2011/summary_en.pdf?ua=1
• Zhao, G., Li, X., Zhao, J., Zhang, L, and Stanton, B. (2012) Relative importance of various measures ofHIV related stigma in predicting psychological outcomes among children affected by HIV. Journal of Community Mental Health, 48: 275-283

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

AIDS Survivor Syndrome & Understanding the Linkages between Mental Health and HIV/AIDS

By: John Williamson, intern, ADAP Advocacy Association, and candidate for Masters in Social Work

In the early years of monotherapy treatment, a person living with HIV at the age of 20 had an additional life expectancy of 11.8 years (Gueler, A., Moser, A., Egger, M. et al., 2017). Gueler et al. (2017) reports that since the introduction of the combination antiretroviral treatment, that number has risen to a life expectancy of 54.9 years. As medical treatments continue to increase the survival rate among people living with HIV/AIDS, we must continue working to understand the psychological challenges the infection has on ones mental well being. We are often familiar with the physical and medical aspects associated with HIV/AIDS, however, the social and psychological factors are equally important as they can shape the experience of what it is like to be a person living with HIV (Roger, K., Mignone, J., & Kirkland, S., 2013).

According to HIV.gov (2019), people who are HIV positive are at an increased risk of developing an anxiety, cognitive or mood disorder, and depression. During a cross sectional survey in 2003 researchers found that more than 1 in 3 people who are living with an HIV infection have also been diagnosed with Major Depressive Disorder. While there is a significant amount of individuals who are diagnosed with a co-occurring mental health condition and HIV/AIDS fewer than one half of depression cases get recognized clinically in people with HIV (Asch, S., Kilbourne A., Gifford A., et al., 2003). Asch et al.,(2003) also found that individuals with a co-occurring mental health diagnosis of depression and an HIV infection only get treated 18% of the time for their depression, 7% get treated adequately, and only 5% achieve remission. This means that 82% of people who are dually diagnosed with HIV and depression do not receive treatment for their depression.

There are 1.6 million people in the United States living with HIV/AIDS with over half of them aged 50 or older and an expectation that  it will rise to 70% by 2020 (T.Anderson, 2016). Tez Anderson (seen below), Founder of Let’s Kick ASS, an AIDS Survivor Advocacy Group coined the term AIDS Survivor Syndrome (ASS) to describe the “spectrum of sustained trauma survivorship resulting from living through the AIDS pandemic.” People who are living with HIV/AIDS face a historically unique set of barriers including complicated bereavement, trauma, guilt, loss of relationships or community, and increased risk of depression, suicidality, and social withdrawal (Nord, 1996). One of the factors that distinguishes the trauma of someone living with HIV/AIDS from other tragedies or disasters, is the ongoing impact the infection has on a survivor, ultimately leading to further traumatization. Many people living with HIV/AIDS encounter losses that impact their sense of identity such as assumptions about life, future expectations, self-esteem, and security (Nord, 1997).

Photo Source: NBC's Today Show

Many long term survivors report differing beliefs about why they outlived their peers including the will to live, a healthy lifestyle, support from others, particular treatments, and clinical interventions such as psychotherapy (Sally, 1994). Researchers conducted an 8 site US study consisting of 803 people living with HIV and a co-occurring mental health condition and found that only 59% of individuals were receiving any mental health treatment (Weaver, Conover, Proescholdbell, Arno, Ang, Ettner, 2008). In the same study, Weaver et al. (2008) found that among their participants who were dually diagnosed with a mood disorder, only 40% of them were taking an antidepressant. People who are living with HIV are 2 to 3 times more likely to have depression and anxiety (Mascolini, 2016). Results from the US Women’s Interagency HIV Study (WIHS) (2005) found that women with chronic depressive symptoms had a 70% higher risk of AIDS related death than women with who expressed little to no symptoms of depression. WIHS (2005) also found that receiving mental health services halved the risk of AIDS related deaths in participants.

Through the integration of mental health into HIV/AIDS programs and initiatives, we have the opportunity to improve the overall health and outcomes of people living with HIV/AIDS. Direct care professionals are often not skilled in identifying symptoms of a mental health condition nor are they prepared to take action for referrals, management, or additional assessment. Training healthcare providers in the assessment and treatment of common mental health and substance use disorders as well as completing referrals to specialized services must be a part of the infrastructure of our healthcare system. By combining routine depression screening, provider training, proper supervision, and a closer relationship between mental health, substance use, and HIV/AIDS services we can work toward stabilizing the medical and physical symptoms while beginning to address the long term effects of living with HIV/AIDS.

Organizations such as Let’s Kick ASS, Elizabeth Taylor 50 Plus Network, and The Liberation Institute are taking a proactive step in providing services and research for long term survivors of HIV. Tez Anderson, founder of Let’s Kick ASS has led the way to understanding and treating ASS by working to increase research, dedicating June 5th as Long Term Survivors Awareness Day, and offering networking and wellness events in both Miami and New York as well as other cities. Elizabeth Taylor 50 Plus Network in San Francisco also offers support groups to both HIV positive and negative bisexual, gay, and transgender men over 50. They also offer weekly social events, health and wellness learning events, and community service projects. The Liberation Institute is another great example of organizations who are taking a stand for long term survivors of HIV/AIDS. They are a  not for profit mental health organization that offers psychotherapy, professional counseling, yoga, and meditation as well as other groups on a sliding scale basis.

Photo Source: POZ.com

While offering in person services is incredibly important, it is also important to increase as much access to support and information related to HIV/AIDS as possible. That’s why organizations such as the Well Project have created interactive online communities to increase awareness and access to support and information about HIV/AIDS. The Well Project is a not for profit organization that focuses on women and girls with the mission to change the course of the HIV/AIDS pandemic. They offer free online accounts where members can develop a profile and interact with other members through developing communities, joining/creating groups, sharing research/information, and connection to further in-person and online resources as well as group and private chats. Understanding the unique needs of the aging population living with HIV is crucial to developing effective treatments that will increase both life expectancy and overall well being.  HealthHIV has recently developed the Inaugural HealthHIV State of Aging and HIV Survey in order to assess the needs of people living with HIV/AIDS that are over 50 years of age. This survey will allow researchers to create informed medical and consumer education while also addressing the coordination of care for people living with HIV/AIDS.

For people who are HIV positive or are in need of testing or services, HIV.gov offers many tools to identify and connect you with providers and organizations within your zip code. You can find your state HIV/AIDS hotline, a toll free hotline connecting you with local agencies that can help identify what services you are eligible for and assist you in attaining them. HIV.gov also offers a link to the American Academy of HIV Medicines Referral list where one can search a directory of healthcare providers that specialize in HIV management and prevention while also identifying the different types of care settings.

According to the World Health Organization (2019) more than 70 million people have been infected with HIV since the beginning of the epidemic and about 35 million have died of HIV. The challenges surrounding HIV/AIDS are complex and they will take a unified effort to overcome. We can each play a part in the battle of HIV, whether that is by joining your local AIDS walk, participating in research such as the HealthHIV State of Aging and HIV survey, or joining community awareness and prevention projects.

References:

• Anderson, T. (2016). What is AIDS survivor syndrome? Retrieved: https://letskickass.hiv/what-is-aids-survivor-syndrome-dc0560e58ff0
• Asch SM, Kilbourne AM, Gifford AL, et al. (2003) Underdiagnosis of depression in HIV: Who are we missing? Journal of  General Internal Medicine. (18); 450-460
• Bacon, M., Viktor, W [...], and Mary A. Young. (2005)The women's interagency HIV Study (WIHS): An observational cohort brings clinical sciences to the bench. American Society for Microbiology, (9), 1013 - 1019
• Cook, J., Grey, D., Burke, J., et al. (2004). Depressive symptoms and AIDS related mortality among a multi site cohort of HIV positive women. American Journal of Public Health. (94) 1133 – 1140
• Gueler A, Moser A, Calmy A, Günthard H, Bernasconi E, Furrer H, Fux C, Battegay M, Cavassini M, Vernazza P, Zwahlen M, Egger M.(2017). Swiss HIV Cohort Study, Swiss National Cohort. Life expectancy in HIV-positive persons in Switzerland: Matched comparison with general population. US National Library of Medicine. 31(3):427-436. doi: 10.1097/QAD.0000000000001335
• HIV.GOV (2019). US Statistics: Fast facts. Retrieved: https://www.hiv.gov/hiv-basics/overview/data-and-trends/statistics
• Horberg MA, Silverberg MJ, Hurley LB, et al. (2008) Effects of depression and selective serotonin reuptake inhibitor use on adherence to highly active antiretroviral therapy and on clinical outcomes in HIV-infected patients. Journal of Acquired Immune Deficiency Syndrome.47, 384-390
• Mascolini, M. (2016). High depression rates with HIV and its scathing clinical impact. Retrieved: https://www.thebodypro.com/article/high-depression-rates-with-hiv--and-its-scathing-c
• Murrell , D. (2019). Facts about HIV: Life expectancy and long-term outlook. Retrieved:  https://www.healthline.com/health/hiv-aids/life-expectancy
• Nord, D. (1997). Threats to identity in survivors of multiple AIDS related losses. American Journal of Psychotherapy, 51 (3)
• Nord, D. (1996). Issues and implications in the counseling of survivors of multiple AIDS related loss. Death Studies. 20, 389 - 414
• Roger, K., Mignonette, J., & Kirkland, S. (2013). Social aspects of HIV/AIDS and Aging: A thematic review. Canadian Journal on Aging. 32 (3), 298 – 306 doi: 10.1017/S0714980813000330
• Sally, J.(1994). Psychosocial issues of AIDS long term survivors. Families in Society. 75, 6, 324
• Weaver, M., Conover, C., Proescholdbell, R., Arno, P., Ang, A., Ettner, S. (2008). Utilization of mental heath and substance abuse care for people living with HIV/AIDS, chronic mental illness, and substance abuse disorders. Journal of Acquired Immune Deficiency Syndrome. 447, 449 – 458
• Weber, R., Ruppik, M., Rickenbach, M., Spoerri, A., Furrer, H., Battegay, M., Cavassini, M., Calmy, A., Bernasconi, E., Schmid, P., Flepp, M., Kowalska, J., Ledergerber, B., et al. (2012) . Decreasing mortality and changing patterns of causes of death in the Swiss HIV Cohort Study. Retrieved: https://doi.org/10.1111/j.1468-1293.2012.01051.x
• World Health Organization. (2019). Global health observatory (GHO) data. Retrieved: https://www.who.int/gho/hiv/en/

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Implications of Co-Occurring Diagnosis of a Mental Condition and HIV/AIDS

By: John Williamson, intern, ADAP Advocacy Association, and candidate for Masters in Social Work

According to the National Institute of Mental Health, there are approximately 46.6 million adults in the United States who experience mental health conditions at any time in a given year (2017). People who live with mental health conditions are amongst the most vulnerable populations in our communities. In comparison to the general population, people with mental health conditions are at a higher risk for substance abuse disorders including IV drug use, homelessness, victimization, incarceration, engagement in “unsafe” sexual behaviors, and are more likely suffer from chronic medical conditions (J.Parks, 2006). In 2017, the National Alliance on Mental Illness in conjunction with the National Institute of Mental Health compiled the following data:

• Among 20.2 million adults in the United State who experienced substance abuse; about half of them (10.2 million) were diagnosed with a co-occurring mental illness.
• About 26% of homeless adults living in shelters live with a serious mental illness and 46% are living with a co-occurring serious mental illness and chemical addiction.
• Approximately 20% of state prisoners and 21% of local jail prisoners have a recent history of a mental health condition.
• People who are living with a serious mental illness die on average 25 years younger due to treatable medical conditions.
• Serious mental illness costs Americans $193.2 billion in lost earnings per year.

Photo Source: Patheos

People who are living with a mental health diagnosis have many challenges including symptom management, negotiating the disclosure of their diagnosis due to stigma, access to quality care, training, and education. For individuals who live with mental health conditions, these challenges are significant; yet, for those who have a co-occurring mental health condition and are HIV positive, these challenges can become more difficult to manage. The co-occurrence of a mental health condition and HIV is a public health issue that is important to discuss as it poses challenges for both those who have the diagnosis as well as the persons who are caring for and/or treating them.

Research has found considerable overlap between many mental health disorders and HIV infection. A multi site cross sectional study estimated that individuals who are receiving care for a mental health condition are four times as likely to be living with HIV as compared to the general population (M.Blank et al., 2014). The American Psychiatric Association and Office of HIV Psychiatry reported results from a study that found 19% of males involved in psychiatric care were HIV positive and of 320 patients between the ages of 20 and 40, AIDS was the leading cause of death (2012). In many cases, people with mental health difficulties are also diagnosed with a substance use disorder, amplifying the challenges of treatment and management of their mental and physical health (Parry, Blank, & Pithey, 2007). The Centers for Disease Control and Prevention found that approximately 1 in 10 new HIV diagnoses were due to IV drug users. Kidorf et al., (2004) conducted a study to identify co-morbidities in heroine users at a Baltimore needle exchange. The research found that over 50% of intravenous drug users had a co-occurring Axis I mental health diagnosis. Along with IV drug use, the abuse of illicit substances has also been linked to the increase risk of “unhealthy” sexual behaviors, both of which are cofactors in the risk of HIV transmission.

Access to care is a significant factor when understanding the comorbidity rates of mental illness and HIV infection. The National Alliance on Mental Illness found that only 41% of adults in the United States who have a mental health condition received mental health services in the past year. Of those who received care, African American and Hispanic Americans only received one half the rate of mental health services than that of Caucasian Americans. Individuals who have a mental illness are a largely disenfranchised and vulnerable population who are at a high risk of HIV infection. Research shows a relationship between serious mental illness and low socio-economic status (SES) as well as an increase risk of HIV transmission among lower SES persons due to the concentration of high risk populations (Parry, Blank, & Pithey, 2007). It is the recommendation of the United States Preventative Task Force, that all high-risk persons are tested for HIV at least annually. However, a recent study by found the following results:

• 6.7% of individuals receiving mental health services were tested for HIV infection. 
• Men were 32% less likely to be tested than women.
• Asian & Pacific Islanders were 53% less likely to be tested than white persons.
• African Americans were 82% more likely to be tested than other race groups (C.Mangurian et al., 2017)

For individuals with a prolonged serious mental condition, the risk of transmitting HIV is greatly increased due to symptoms such as impulsivity, affective instability, and exhibiting poor judgment (D.Moore et al., 2012). Therefore, symptoms can create obstacles to adherence such as disorganized thinking which can make it difficult to follow medical recommendations or paranoia, which could make one fearful of care providers or suspicios of medications. Due to factors such as depression, stress, and treatment adherence, which also hinder the immune system, people with serious mental conditions are associated with a more rapid progression of the HIV infection (Leserman, 2003).

Photo Source: Canadian AIDS Society

It is important for both providers who are treating patients with HIV and those treating patients with mental conditions to be aware of the potential co-morbidity amongst the populations. Through understanding the likelihood of a co-occurring disorder, a provider can be more prepared to partner with their patients and other providers in addressing both conditions and improving their potential for healthy outcomes. It is also important that providers are asking patients if they would like to be tested for HIV as both a concern for the individual and for public health. The research shows that people with mental conditions and HIV are at greater risk for negative outcomes; therefore, we must offer a greater quality of care for patients. Comprehensive care that requires providers to be attentive to both medical problems and mental health needs in order to address the public health concern that both pose.

References:

• Blank, M., Himelhoch, S., Balaji, A., Metzger, D., Dixon, L., Rose, C., Oraka, E., Davis-Vogel, A., Thompson, & Heffelfinger, J. (2014). A multisite study of the prevalence of HIV with rapid testing in mental health settings. Am J Public Health. DOI: 10.2105/AJPH.2013.3016
• Centers for Disease Control & Prevention, “Injection Drug Use and HIV Risk”, March 2019; Retrieved from https://www.cdc.gov/hiv/risk/idu.html
• Kidorf, M., Disney, E., King, V., Neufeld, K., Beilenson, P., Brooner, R. (2004). Prevalence of psychiatric and substance abuse disorders in opioid abusers in a community syringe exchange program. Drug Alcohol Dependency, 74, 115 - 122
• Leserman, J. (2003). HIV disease progression: Depression, stress, and possible mechanisms. Journal of the Society of Biological Psychiatry, 54 (3), 295 – 306
• Mangurian, C., Cournos , F., Schillinger, D., Vittinghoff, E., Creasman, J., Lee, B., Knapp, P., Fuentes-Afflick, E., & Dilley, J. (2017). Low rates of HIV testing among adults with severe mental illness receiving care in community mental health settings. Psychiatric Services, 68, 443-448
• Moore, D., Posada, C., Parikh, M., Arce, M., Vaida, F., Riggs, P., Gouaux, B., Ellis, R., Letendre, S., Grant, I., & Atkinson, J. (2012). HIV infected individuals with co-occurring bipolar disorder evidence pooor antiretroviral and psychiatric medication adherence. AIDS Behavior, 16 (8), 2257 – 2266 
• National Alliance on Mental Illness. (2019). Mental health by the numbers. Retrieved from https://www.nami.org/Learn-More/Mental-Health-By-the-Numbers
• National Institute of Mental Health. (2017) Mental Health Information. Retrieved from https://www.nimh.nih.gov/health/statistics/mental-illness.shtml
• Parks, J., Svendsen, D., Singer, P., Foti, M. (2006). Morbidity and mortality rates in people with serious mental illness. National Association of State Mental Health Program Directors. Retrieved from https://nasmhpd.org/sites/default/files/Mortality%20and%20Morbidity%20Final%20Report%208.18.08.pdf 
• Parry, C., Blank, M., & Pithey, A. (2007). Responding to the threat of HIV among persons with mental illness and substance abuse. Current Opinion in Psychiatry, 20, 235 – 241
• United States Preventative Services Task Force (2019). Human immunodeficiency Virus Infection: Screening. Retrieved from https://www.uspreventiveservicestaskforce.org/Page/Document/RecommendationStatementFinal/human-immunodeficiency-virus-hiv-infection-screening#consider

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.