1. Trauma-informed care
Integrating Trauma-Informed and Sexual and Reproductive Health Care in the Domestic HIV Response
Sonia Rastogi
U.S. Positive Women’s Network
Revitalizing the U.S. Domestic HIV Response, December 2012
I come to this work as:
Someone passionate about working on and learning about these issues
And also as a young woman living with HIV who has found support in networks of women and people living with HIV
While I am focusing on women and the unique needs of women, trauma is boundless. It affects everyone. Traumas overlap.

2. Poorer health outcomes
HIV-positive Black women have life expectancies that are approx. 6 years shorter than HIV-positive white men due to late initiation and early discontinuation of ART, and higher rates of concurrent health and psychosocial issues (2009)
HIV-positive women have 20% higher death rates, higher rates of hospitalization, and twice as many HIV-related and AIDS defining illnesses per person than their male counterparts
Where is the data on trans women?
Nationally: women account for approximately 25% of the HIV epidemic; in some states it is much higher
Disproportionately affects women of color (over 80% are African-American and Latinas)
Women are more likely to enter care later – potentially with a dual HIV and AIDS diagnosis
Women are more likely to get sick faster and die sooner
Geographic disparities: South
Transwomen: anecdotally we know the rates are higher, the inequalities greater
Women and HIV Factsheet, July 2012,
Kaiser Family Foundation

3. Why?
Rate of Intimate Partner Violence: 55% among women living with HIV, double the national rate of 24.8%
Rates of Childhood Sexual Abuse and Childhood Physical Abuse: 39% and 42% respectively among women living with HIV, more than twice the national rates of 16.2% and 22.9%
Rate of Lifetime Sexual Abuse: 61% among women living with HIV, over 5 times the national rate of 12%
Rate of Post-traumatic Stress Disorder: 30% among women living with HIV, almost 6 times the national rate of 5.2%
Why do women have poorer health outcomes? Why the poorer quality of life? We know that we can achieve stellar health outcomes for women if they are in care, have an open and trusting relationship with their medical team, and when they are ready, are on treatment. So why the disparities? What is missing in our response?
One reason is violence and trauma.
Data source: meta analysis of 29 studies including 5,930 HIV+ women released in early 2012
Source: Machtinger et al., Psychological Trauma and PTSD in HIV-positive Women: a Meta-Analysis, November 2012, AIDS Behavior

4. “Convergence of forces”
HIV criminalization laws
Criminalizing the sexuality of women living with and at risk of HIV
Transphobia & Homophobia
Poverty
High rates of incarceration in communities of color
Politically disenfranchised: lowest voter turnout, voter ID laws
We are seeing HIV enter and reside in communities of color where structural violence is evident
There is a convergence of forces in addition to what happens on an interpersonal level
HIV criminalization laws
Criminalizing the sexuality of women living with and at risk of HIV
Repealed in 2011: Mississippi State Health Department required people testing positive for HIV to sign an “acknowledgement form” -- presented as a legal document pledging to uphold “the necessity of not causing pregnancy or becoming pregnant”. Under Mississippi’s felony HIV exposure and transmission law
Louisiana’s 1805 “Crimes Against Nature” Law. This law labels anyone convicted of engaging in oral or anal sex as a sex offender. It raises a misdemeanor solicitation charge to a felony, including increased financial penalty and inclusion of the sex worker’s name on the state sex offender.
Judge ruled this year that this law is unconstitutional
Transphobia & Homophobia
Brandy Martell

5. Impact Impaired sexual decision- making Four-fold increase in STIs
Higher likelihood of substance use in one’s lifetime
Depression, PTSD, anxiety, chronic stress
Devastating consequences for both prevention and care.
Data source: 2008 review of literature
Impaired sexual decision making
 importance of female-initiated and female-controlled prevention options

6. Impact: Compromised immunofunction
Increased prevalence of stress, depression, and chronic anxiety
Reduced CD4 counts and other HIV biomarkers due to PTSD and depression
Associations between altered red blood cell and decreased T-cell function
Associations between violence and hypothalamic-pituitary- adrenal axis functioning (greater occurrence of altered levels of cortisol and dehydroepiandrosterone)
Altered neuropsychological functioning that can negatively impact immune responses to HSV infection
Relationship between stress and other psychosocial factors with faster disease progression among people living with HIV
This is a summary from the article on the physiological impact of violence and trauma – this is not just for women living with HIV
What scares me about this information as a positive person is that there are physiological impacts on my body and traumas that are lurking around my subconscious and unconscious that I not only know about, but feel like I do not have any control of.
That thought freaks me out and is actually more of a priority for me to process that trauma than for me to take my medication every day.
Source: Campbell et al., The intersection of intimate partner violence against women and HIV/AIDS: a review, December 2008, International Journal of Injury Control and Safe Promotion

7. Living with HIV is traumatic
Health & Wellbeing
Living with HIV is traumatic
Institutional Violence: HIV criminalization laws, War on Women, employer discrimination, etc.
Community-based Violence: homophobia, transphobia, stigma & discrimination when receiving services, etc.
Intimate Partner Violence: stigma, disclosure, isolation, fear, isolation, depression, PTSD

8. UCSF Women’s HIV Program
A multidisciplinary clinic that serves 200 women living with HIV, mostly women of color, founded in 1993
Has expertise in working with women and integrates a family-based model, full spectrum of sexual and reproductive health services, supportive services (social worker, mental health professionals on staff)
Collaborations with CBOs to provide services
Has already looked at trauma in its client population and has piloted 2 trauma-informed interventions
Research study came out this year
The 6 deaths in our program over the past 2 ½ years resulted from: a women being murdered by her partner, a women being murdered by an unknown assailant, two women committing suicide, one woman accidentally overdosing on heroin, and a 21 year old woman with a long history of childhood neglect who we knew since her initial diagnosis at 15 who died of a preventable opportunistic infection because she was unable to adhere to her HIV medications.
woman who died from medication non-adherence had been seen in clinic 54 times in the two years preceding her death
These are women who did not die because they were out of care or because they did not have a multitude of services available; they died because of cumulative lifetime and acute trauma. Emphasis on the cumulative lifetime trauma.
The clinic reflected on its findings from both the research study and its interventions, and is now identifying a replicable and scalable model – essentially a trauma-informed demonstration project that can be used across the country
Intentional integration: training and infusing trauma into every service, health care worker, provider, that walks into the clinic
Rethinking outcome measures: yes CD4 and viral load are important measures, but they do not give us any insight into why women have poorer health outcomes. They also do not reflect what is important to women’s lives.
Primary outcomes are things like PTSD or quality of life indicators

9. Peer-based support: common threads
Small group (8-12) HIV prevention training organized around intensive, interactive, skill- building sessions
Designed to enhance the ability of women living with HIV to understand and share life experiences including HIV and trauma
Peer-based support has been shown to improve the health outcomes of women living with HIV
Peer support can come in the form of supportive services, interventions, and trainings
Have amazing effects on health
Common Threads:
why? Decrease HIV related stigma, increase HIV testing and linkage to care, decrease transmission and poor health outcomes, and build partnerships between public health representatives and wome living with Hiv to support the implementation of the NHAS
Training locations: Albany, NY, 2 in Atlanta, Baltimore, Baton Route, Charlotte NC, Dallas TX, a couple in florida, NY, Orangeburg, SC, Philly, Raleigh, and 2 in DC
Outcomes: safe environment facilitated by peers and clinical support increased their ability to disclose challenging life experiences including trauma and other vulnerabilities
Give ex of one PWN Southern Summit

10. Peer-based support: WORLD
Phoenix Project: short pilot project in 2010 to re- engage/link women who had fallen out of care
Identified 25 women out of care; successfully linked 17
BANPH
Ryan White model
Highlight: the power of peer services to link women back into care
Phoenix Project: collaboration with EBAC
Coordination of services and expertise between peers/social services more broadly and medical care/clinics was helpful in navigating trust, disclosure, acceptance, stigma and other issues for WLWH
BANPH network with many other Bay Area organizations under the leadership of Dr. Cynthia SFSU

11. A Nationally recognized issue
“The research needs of integrated care
in mental health has moved past demonstration of efficacy to address issues of implementation,
effectiveness, sustainability, utilization of technology to reduce costs, extension of the successful
integrated care models to specialty mental health settings, and to clinical conditions beyond
depression.”
Agency for Healthcare Research and Quality, September 2010

12. A Nationally recognized issue
Clinical Preventive Services for Women: Closing the Gaps. Committee on Preventive Services for Women. Institute of Medicine. The National Academies Press, 2011
call for routine, clinic-based, “screening and counseling for all women and adolescent girls for interpersonal and domestic violence in a culturally sensitive and supportive manner
Direct implications for our conversation as these guidelines are now law and are a part of a benefits package in the ACA

13. A Nationally recognized issue
Technical assistance center dedicated to building awareness of trauma-informed care and promoting the implementation of trauma-informed practices in public programs and services
Do not need to reinvent the wheel, there is expertise on trauma and trauma informed care and there are clinics and organizations that are tackling this issue head on

14. A Nationally recognized issue
Working Group established in March 2012 co chaired by Grant Colfax and Lynn Rosenthal, White House Advisor on Violence Against Women
The memorandum calls for “integrating of sexual and reproductive health services, gender-based violence services, and HIV/AIDS services, where research demonstrates that doing so will result in improved and sustained health outcomes.”

15. At the end of the day…
Trauma impacts everyone (similar and distinct traumas of queer and trans men)
Trauma keeps people off their medications. Focus on the treatment cascade by first working through trauma and stigma.
Violence against women and trauma are inextricably linked with sexual and reproductive health and justice
The risk of higher costs if we do not address the glaring issues in the lives of people living with HIV
Beyond screening: trauma-informed care 2.0
Enthusiastically address structural, psychosocial, and behavioral factors
Trauma keeps people off their medications
Trust, people do not know who to trust
Process of acceptance
HIV-related trauma: hard to negotiate your life around a newfound thing – impact on work, family, dating, etc.
All the science and knowledge about treatment as prevention and the treatment cascade is vulnerable to uselessness if we do not address trauma and embedded in trauma is stigma, discrimination, and structural violence
Violence against women and trauma are inextricably linked with sexual and reproductive health and justice
there is no separation of the two. They cannot be siloed.
The risk of higher costs if we do not address the glaring issues in the lives of people living with HIV
increased risk of transmission
increased risk of developing resistance and having to go on more expensive regimens
increased risk of health complications
Beyond screening: trauma-informed care 2.0
screening is needed and is critical, however it does not end there
referrals to a shelter are not only problematic and complicated for women living with HIV, but they also only address acute trauma
does not even begin to dig into the accumulation of and the cumulative effects of trauma experienced throughout one’s lifetime
Enthusiastically address structural, psychosocial, and behavioral factors

16. Recommendations to amend the NHAS
Identify, support, and resource trauma-informed demonstration projects that address violence against women and the impact of trauma in women’s lives
Identify emerging and bolster existing advocacy and policy efforts that combat the structural root causes that put all women at risk for HIV in the first place
Identify and craft strategic entry points into the ACA and Medicaid expansion for the Ryan White Care Model to be adapted into primary care and care for chronic diseases
Meaningful and thoughtful integration of peer services & interventions
Training and capacity building to recognize, articulate, triage, and address trauma
Investing in research
Investment in female-initiated and female-controlled prevention options
Investment in understanding the physiological impacts of trauma
Investment in understanding the hidden health care costs of stigma (how much are we spending on health care that does not recognize or address stigma)
Investment in operational science and implementation science (opportunity to build from the ground level)

17. Sources
Campbell et al., The intersection of intimate partner violence against women and HIV/AIDS: a review, December 2008, International Journal of Injury Control and Safe Promotion
Briefing Paper: Ending HIV-related Health Care Disparities for Women, March 2012, 30 for 30 Campaign
Women and HIV Factsheet, December 2012, Kaiser Family Foundation
Violence Against Women and Trauma Factsheet, U.S. Positive Women’s Network, December 2012
Machtinger et al., Psychological Trauma and PTSD in HIV-positive Women: a Meta-Analysis, November 2012, AIDS Behavior
Fried, S. and Kelly, B., Gender, Race + Geography = Jeopardy: Marginalized Women, Human Rights and HIV in the U.S., July 2011, Women’s Health Issues: Special Supplement
Machtinger et al., Recent Trauma is Associated with Antiretroviral Failure and HIV Transmission Risk Behavior Among HIV-positive Women and Female-identified Transgenders, AIDS Behavior, November 2012
Losina et al., Racial and sex disparities in life expectancy losses among HIV-infected persons in the United States: impact of risk behavior, late initiation, and early discontinuation of antiretroviral therapy, Clinical Infectious Diseases: an official publication of the Infectious Diseases Society of America, October 2009