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.
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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)
- 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
Undetectable = Untransmittable:
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)
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:
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:
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
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.
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