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Why It Matters

People living with HIV and those at risk of acquiring HIV have a higher prevalence of mental health conditions.

The impacts of higher prevalence of mental health conditions are significant. They include: ​

  • Increased engagement in less-safe sexual and injection drug use behaviors

  • Difficulty in engaging in care (initially and ongoing)

  • Decreased adherence to antiretroviral therapy

  • Lower viral suppression rates

  • Increased incidence of being denied care (e.g., being "fired" from services)

Why It Matters

Where We Stand Today 

Mental health conditions affect the overall health and wellbeing of people living with HIV (PLWH) and individuals who are otherwise vulnerable to acquiring HIV.


In 2019, the Iowa Department of Public Health conducted an assessment of the needs of PLWH in Iowa. The survey had 555 respondents (about 19% of PLWH in Iowa in 2019). Below are some of the findings from the data collected during the 2019 needs assessment related to behavioral health:


  • Respondents were 2 times more likely to experience a serious mental illness compared to Iowa’s general population, 23% compared to 11% respectively.

  • 42% of respondents reported using drugs within the past 12 months.

  • 46% of respondents reported using tobacco in the past 12 months.

  • Respondents were more likely to experience feelings of depression compared to Iowa’s general population.

  • Respondents were more than twice as likely to have a high ACE score (4+) than the general public. Adverse Childhood Experiences (ACEs) have been proven to negatively impact a person's health outcomes.

    • Respondents were twice as likely to have experienced an incarcerated household member, violence between adults, and physical abuse.

    • Respondents were three times more likely to experience sexual abuse. 


PLWH also experience other mental health conditions at higher rates then the general public:

  • 18% of PLWH experience depression compared to 8% of the general population.

  • 21% of PLWH experience Generalized Anxiety Disorder (GAD) compared to 15% of the general population.

  • 8% of PLWH experience severe anxiety compared to 2.7% of the general population.

  • Estimates of Post Traumatic Stress Disorder (PTSD) among PLWH range from 35%-64%.

What We're Doing Now

Significant funding allocations for Ryan White subrecipients to support the following resources:

  • Behavioral Health Consultants—health professionals who can assess and provide or link individuals to treatment for mental health conditions

  • Mental health and substance use treatment

Provide learning opportunities around the following topics for Bureau of HIV, STD, and Hepatitis staff and contract staff: 

  • Mental health first aid

  • Motivational interviewing

  • Trauma-informed care

  • Trauma-informed excellence

  • Book Club—to provide ongoing training and capacity building to the Ryan White workforce

Integrate trauma-informed principles (TIP) into daily operations by adopting the following practices:

  • Trauma-informed training for all new contract staff

  • Trauma-informed intake/assessments

  • Hiring questions around knowledge of TIP

  • “Clear is Kind” communication 

    • Promote clear, direct communications through weekly emails, capacity building webinars, and monthly calls with contractors

  • Development of a comprehensive organizational assessment to determine level of integration of trauma-informed principles in 10 domains

Promotion and prioritization of self-care/workplace wellness for both Bureau and contract staff.

Hire a substance use/HIV coordinator/liaison: 

  • Special project focusing on the improving systems of care for PLWH who use drugs.

  • Knowledge, Attitudes, and Practices (KAP) Survey of  Ryan White and Substance Use providers

Proposal to hire a Behavioral Health Coordinator approved

Gaps, Barriers, & Challenges

Historical focus on biomedical solutions

For many years, significant focus was on developing the life-saving medications needed to achieve viral suppression for those living with HIV. Once these therapies were developed, focus was on reducing debilitating side effects and pill burden. Now that these therapies exist—one pill/once a day with minimal to NO side effects—the HIV community and stakeholders are better able to identify and address other factors that prevent people living with HIV from getting their diagnosis, linking to care, and staying in care. Some stakeholders, including policy makers, are uncomfortable thinking beyond biomedical solutions. 


Public Health vs. Behavioral Health

Historically, public health officials haven’t focused on behavioral health conditions and instead view these conditions as solely a “personal willpower” situation. Challenges still exist in terms of viewing behavioral health challenges through a more macro level, public health lens. 


Stigma around Mental Health and Substance Use

Mental health and substance use have long been stigmatized conditions. As with HIV, stigma surrounding behavioral health can create debilitating barriers to receiving the care one needs to manage their conditions. 


Complex issue—Technical Challenge vs. Adaptive Challenge

Technical challenges are those that can be solved by the knowledge of experts, whereas adaptive challenges are complex and ambiguous in nature, and may be volatile or unpredictable. Solutions to these types of challenges usually require people to learn new ways of doing things, change their attitudes, values and norms and adopt an experimental mind-set. In addition, there may be more than one way of approaching the issue and thus makes it more difficult to create step-by-step solutions. 


Capacity building offerings could be more robust

Though Iowa has offered many high caliber trainings of the last three decades, the trainings could be more systematic, include providers and subrecipients, and ensure new staff are trained expeditiously.


High turnover in the workforce

Turnover in positions that work with Iowans living with HIV can greatly impact these individuals—especially turnover in case managers, who build relationships and trust with those they serve.  When someone leaves the organization, Iowans living with HIV need to build relationships and trust with someone new.  This can be exhausting for them and create a disincentive for engaging in needed care.  

Ambiguity in Implementing Trauma Informed practices beyond training

Although Iowa has done a lot around training in trauma informed principles, defining what a trauma informed agency or organization looks like is ambiguous (see technical vs. adaptive challenges).

Where We Stand Today
What We're Doing Now
Gaps, Barriers, & Challenges

To stop HIV in Iowa by 2030, this focus area must:

  • Increase the diversity and capacity of health care delivery systems, community health, public health, and the health workforce to prevent and diagnose HIV.

    • Especially: train all staff on trauma-informed care.

  • Increase the capacity of the public health, health care delivery systems, and health care workforces to effectively identify, diagnose, and provide holistic care and treatment for people living with HIV.

    • Especially: utilize novel approaches to address issues of trauma, poverty, and associated conditions that are obstacles to care.

  • Address co-occurring conditions that exacerbate HIV-related disparities.

    • Especially: Develop whole-person systems of care that address co-occurring conditions for people living with HIV or vulnerable to acquiring HIV.

    • Especially: Improve screening and linkage to services for people living with or vulnerable to acquiring HIV who are diagnosed with and/or are receiving services for co-occurring conditions.

To Stop HIV in Iowa
Supportive women hug while attending a group therapy session

Process for Community Engagement 

Engagement Focus

This focus area will work with partners across the state to identify opportunities to increase the capacity of public health, community health, and health care delivery systems, as well as that of Iowa's health care workforce. This increased capacity will allow us to better prevent and diagnose HIV and more effectively identify, diagnose, and provide holistic care and treatment for people living with HIV (PLWH).

The focus area committee will concentrate on three broad areas impacting the behavioral health of PLWH and those at risk of acquiring HIV.

Trauma-informed care
Training on trauma-informed care

Training all Ryan White staff members serving PLWH on trauma-informed care

Novel approaches to care
Utilizing novel approaches

Utilizing novel approaches to address issues of trauma, poverty, and associated conditions that are obstacles to care.

Co-occurring health conditions
co-occurring conditions

Addressing co-occurring conditions that exacerbate HIV-related disparities.

Gathering Feedback

Focus Groups
  • Ryan White agency staff

  • HIV medical providers

  • Primary care providers that serve PLWH

  • Data to Services Coordinator and Disease Intervention Specialists

  • Pharmacists that routinely serve PLWH

Key Informant Interviews
  • PLWH who struggle with behavioral health issues

  • Regional Health Specialists

  • PLWH who receive Ryan White Part B services

Community Engagement
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