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Healing Through Barriers: The Connection Between Trauma and Barriers to Care for Women Living With HIV

February 22, 2016

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Healing Through Barriers (Credit: Louis 'Kengi' Carr)

(Credit: Louis "Kengi" Carr)

If we are really serious about retention in care for women living with HIV, we have to do the underlying work. You are bringing everything with you to the clinic, not just HIV.

-- Vanessa Johnson,
co-owner, Ribbon Consulting Group;
co-founder, Positive Women's Network-USA;
founder, Common Threads

Women living with HIV experience multiple barriers to HIV care -- both accessing care and experiencing the full benefits of care once connected.

Decades of research and clinical experience both within and outside the HIV community have shown a stark link, across races, ethnicities, genders, and socioeconomic backgrounds, between past and recent trauma and a wide range of chronic conditions and poor health outcomes. These statistics are especially troubling among people of color, particularly African Americans.

Successful treatment for chronic health conditions such as diabetes, depression, obesity, heart, lung, and liver diseases, substance use, and sexually transmitted infections including HIV, is often disturbingly elusive -- in part because clinicians and care environments fail to address the trauma and post-traumatic stress disorder (PTSD) that underpin them.

A parallel body of evidence shows the overwhelmingly high burden of violence (including institutional violence, racism, and other forms of systemic injustice), abuse, and PTSD among women living with HIV -- about 80 percent of whom are women of color, and most of whom are living in poverty -- including the reality that three in four women living with HIV report a history of gender-based violence.


Meanwhile, there is a crater in the HIV care continuum for women living with HIV, by last gender-stratified count: 70 percent of women connect to care, but fewer than half of them remain in care.

Transgender women, historically, have some of the worst HIV health outcomes by many measures: very low rates of engagement and retention in care, high rates of loss to follow up, and in some studies, lower rates of HIV medication use than among injection drug users. The HIV rate among transgender women is disproportionately high: 2.6 percent among transgender people as a whole, and up to 4.4 percent for African American transgender women.

What's the connection between trauma and barriers to care for women living with HIV?

Women may have specific experiences, compounded by gender, that create unique barriers to their accessing HIV care. Wraparound services like peer-based, gender-responsive programming; transportation, housing and childcare assistance; nutritional support; and mental health and substance use treatment are essential for many women to be able to receive consistent and high-quality care. If these services are absent, a woman's ability to stay connected to HIV care becomes even more tenuous.

But even in a landscape of supportive services, trauma and violence continue to erode the health outcomes of women living with HIV in what Positive Women's Network-USA (PWN-USA), a national membership body representing women with HIV, has called a "crisis of unaddressed trauma among women living with HIV" -- which may be the missing ingredient to account for systemic failure to provide high-quality care for women with HIV.

If the National HIV/AIDS Strategy is to reach the stated commitment of its second goal -- increasing access to care and improving health outcomes for people living with HIV, and to meet the challenges therein -- providers must be supported in their efforts to think and practice outside the box, to adapt innovative models to meet the needs of women living with HIV in their communities.

Medical University of South Carolina Ryan White HIV/AIDS Clinic: Struggling to Keep Women Connected to Care in South Carolina

Part D of the Ryan White HIV/AIDS Program serves women, young people, and families living with HIV in the U.S., and contributes to Ryan White's relative success retaining women with HIV in care -- in part due to the essential wraparound services Part D is able to fund.

The Medical University of South Carolina (MUSC)'s Ryan White HIV/AIDS Clinic is funded in part through Part D. According to Lauren Richey, M.D., of MUSC, in addition to medical care, MUSC provides transportation assistance, social work services including counseling, dental care, medication assistance, case management, peer navigation, housing assistance, nutritional supplements, meal tickets, substance use treatment referrals, and emergency financial assistance. They also have a new, on-site psychiatry clinic, where clients can be seen, evaluated, and followed by a psychiatrist in the same clinic space; and a women's health clinic where sexual and reproductive health care are available to women with HIV at all parts of their lifespan, from PrEP and preconception counseling to post-menopausal care.

Last year, when MUSC staff identified roughly 19 percent of their clients that they defined as "not retained" in care (meaning they didn't meet MUSC's criteria of having had two visits separated by 90 days over a one-year period), they set out to find out what had happened to them, and to get them back into care. Fifty-five percent of those folks were discovered to have "fallen out of care" (others' absence was found to be due to transferring care, experiencing incarceration, or passing away). Those who "fell out of care" were more likely to be female, African American, and have lower CD4 counts and higher viral loads than those who transferred care.

"Linda [the clinic's licensed professional counselor] completed a step-wise series of outreach: phone, letter and home visits to try to reach and re-engage our patients who are lost to care," Dr. Richey explains -- and that intervention has been effective in getting clients to come back for a visit. But barriers remain to reaching clients who may need interventions like substance use treatment the most.

Even this level of care is unheard of for most health conditions -- and is sorely needed in order for tens of thousands of people living with HIV to remain connected to care. But a growing number of providers are taking yet another innovative step to increase the effectiveness of the care they provide -- and their clients' capacity to access it.

The Ryan White HIV/AIDS Program's models of care made it a pioneer in community-responsive health services. Recently, advocates have called for trauma-informed approaches to be the next legacy of the Ryan White HIV/AIDS Program -- to solidify a bold standard in HIV care prioritizing environments that contribute to healing.

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This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware. Visit TPAN's website to find out more about their activities, publications and services.

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