Undetectable is a worthy goal, no doubt about it. A suppressed viral load very often means the individual living with HIV is adherent to medications that are working for his or her particular body. It very often means that HIV-specialized primary care and other health professionals have been successful in engaging patients along every step of the continuum of care.
Many individuals living with HIV in developed nations like the United States have reached, or will likely reach, an undetectable status. A 2011 CDC reports that thirty percent of individuals have achieved viral suppression. Of the seventy percent who are not virally suppressed, sixty-six percent have been diagnosed but are not in care. So, of course, there’s still work to be done to encourage people to engage in regular testing and know their status, and to retain them in care so that access to antiretrovirals is consistent and pervasive.
But while undetectable as a goal may indicate a lot about surviving, it indicates little about thriving. That is, undetectable means little if you are suffering from the effects of trauma, past or present, or anxiously trying to navigate personal relationships or community spaces impacted by violence. Your doctor may be pleased to see your viral load decrease and decrease and CD4 counts jump, and you may be pleased, too, but you may also be worried about an abusive partner or using substances as a way to tamp down painful memories or soothe the barbs of isolation because no one in your life knows that you are living with HIV. The goal of virologic control or increased CD4 cell counts may not be enough to motivate you to stay adherent or seek mental health support, even as you seek to nurture your dreams and make other positive changes in your life.
Some people are dying from HIV and its negative health effects, yes. But, as the Women’s HIV Program (WHP) at the University of California, San Francisco, and others have discovered, many more who are positive are dying from the past or present impacts of trauma and post-traumatic stress disorder (PTSD), and/or violence. And women are particularly affected as communities and relationships continue to be structured by gender inequity and sexism, racism, and poverty. WHP has suggested we need to look at HIV holistically; we need to shift the virologic control paradigm.
“People are not dying from HIV,” says Edward Machtinger, MD, director of the Women’s HIV Program and a Professor of Medicine, “[as much as] they’re dying from violence and hopelessness. End period.” There is hope, however. These deaths, reminds Dr. Machtinger, are preventable deaths.
Detecting trauma as a barrier to health
The Women’s HIV Program has taken up the charge of empowering women to overcome trauma. Established in 1993 as one of the first programs in the nation specifically designed for women and girls living with HIV, WHP is now committed to identifying and understanding the relationship between trauma and HIV, to finding ways to support patients in a trauma-informed primary care setting, and to sharing their innovative ideas with researchers, policymakers, and, of course, other clinicians. But WHP did not always understand the full impact of trauma and violence on health outcomes. Over the past ten years, WHP’s clinical and research team, led by Dr. Machtinger and Carol Dawson Rose, RN, PhD, came to learn how their set goals fell short as a comprehensive response to patients in their care.
When a patient dies at the Women’s HIV Program, the care team convenes to study what happened in an effort to improve its services and improve the health outcomes for its other patients. WHP has been conducting these reviews for over a decade and patterns have emerged.
“What leapt out at us were both the fact that almost no one was dying from HIV and instead the majority were dying either directly or indirectly from trauma,” says Dr. Machtinger. “Of all of the deaths, over the past two decades, three of the nineteen deaths—sixteen percent—were related to HIV. Eighty-four percent of the deaths in our clinic had nothing to do with HIV, and were primarily related to trauma. Directly, through murders, and indirectly, through substance addiction, substance-related diseases, overdose, depression, and suicide.”
Dr. Machtinger and the team at WHP found the high number even more striking—and distressing—for the fact that they knew that everything was in place to provide a gold-standard level of HIV care. As a fully realized Ryan White multidisciplinary care program, WHP offers to its patients a team of doctors, nurses, pharmacists, social workers, case managers, therapists, psychiatrists, and an obstetrician, all of whom are committed to a body-mind-spirit approach. WHP works with community-based and national partners, like The Well Project and Positive Women’s Network–USA, to complement its services. It even offers breakfast.
But WHP team members became acutely aware that they could do better. “We take exceptionally good care of our patients. Over eighty-five percent of our patients are on antiretroviral medicines, and over eighty-five percent of those [patients] are undetectable on their antiretroviral medicines. And because of that we receive all of these commendations, and people assume, and for a long time we were assuming, that we were doing an awesome job taking care of our patients.”
However they were also trying to make sense of how they were falling short. Notes Dr. Machtinger, over fifty percent of patients in clinic suffer from depression and almost forty percent report using hard substances. Many experience intimate partner violence. Many suffer from a lack of personal support because they are not out about their positive status. Not very many patients are employed despite the fact that many patients describe working as one of their long-term goals. Not very many were realizing any of their long-term goals. Combined with the deaths, these health and wellbeing shortfalls began to sound alarms.
Increasingly, Dr. Machtinger and the WHP team realized that “the bar was set far too low in Ryan White primary care clinics across the country.”
He explains: “Our clinics are held accountable to make sure that people have an undetectable viral load for their own health and to not transmit the virus. But in truth we’re not addressing the primary reasons people are dying, which is from preventable illnesses, mostly related to trauma. And that experience in clinic—that mismatch between having this robust, really famous clinic and then looking at the patients and realizing that their actual health outcomes beyond their viral load were actually poor—made me hunger for a deeper connection, a deeper way to help people heal.”
Defining the scope of trauma
WHP conducted a formal analysis involving a majority of its patients, focusing on contemporaneous trauma-related conditions associated with having a detectable viral load.
“Patients who had experienced trauma in the past thirty days were four times more likely to be experiencing virologic failure, having their medications not work, than people [living with HIV] who didn’t experience trauma in the past thirty days,” notes Dr. Machtinger. The numerical data provoked his most concrete epiphany, he says, noting that, at the time, he was still somewhat focused on virologic control as the primary measure of health. “I realized that trauma not only affects all these other aspects of people’s lives, but trauma affects why people fail their antiretrovirals.”
He continues: “Trauma definitely has permanent, physiological impacts on the body. But my belief is that the reason [for] the relationship between trauma and virologic failure is primarily if not exclusively through medication non-adherence.”
Dr. Machtinger points to the three women who have died specifically from HIV over the past decade while engaged in care at WHP. “[They] actually died from medication non-adherence. And they really, really died from hopelessness.”
He shares one woman’s story. “One of them was a twenty-two year-old woman whom I have known since she was fifteen years-old, when she was diagnosed with HIV when she presented alone to the emergency room with pelvic inflammatory disease, a sexually transmitted disease, and was diagnosed with HIV then.
“She had had a life filled with trauma. She had a mom who was a crack addict, who also had HIV and died when she was a kid. I think she spent most of her childhood in the criminal justice system and in foster care.
“When it came to taking care of herself she just could not take her antiretroviral medications, despite massive efforts on so many staff members’ parts. She had a baby one year before she died; she was so excited about her baby. But she fundamentally did not believe that the effort necessary to take her antiretrovirals would make her life better, because for so many years, ever since she was a tiny child, people told her that this next [step] would lead to something better and it actually led to stuff that was far worse. And she was just profoundly without hope.”
In response to its discoveries about the impact of trauma on women living with HIV, the team at WHP began to study the problem and its possible solutions more closely, through more formal analysis, and, in turn, developed partnerships with organizations and advocates on the community and national levels.
One study, titled “Psychological Trauma and PTSD in HIV-Positive Women: A Meta-Analysis” by Machtinger et al., and published in AIDS and Behavior in 2012, collated all known statistics from previous studies of rates of different types of trauma in women living with HIV to calculate the most accurate rates of trauma and PSTD experienced by women living with HIV. The study included participants who met established DSM-IV diagnostic criteria for PTSD trauma, that is, “exposure to an extreme traumatic stressor that is associated with intense fear, helplessness, or horror (e.g., actual or threatened death or serious harm to one’s physical integrity or witnessing an event that involves death, injury, or a threat to the physical integrity of another person),” as well as those who had PTSD but whose traumatic event was not recorded.
“The rates that we calculated were really quite shocking, even compared to the already high rates in the general population,” notes Dr. Machtinger.
The summarized findings include:
• Fifty-five percent of women living with HIV have experienced intimate partner violence, compared to approximately twenty-three percent in the general population.
• Over sixty percent of women living with HIV have experienced sexual abuse, almost five times the rate of the general population.
• Thirty percent of women living with HIV have current PSTD—six times the rate in the general population.
One other finding from WHP’s earlier trauma-related study and data from other studies are pertinent here:
• Trauma is associated with four times the rate of medication failure and almost twice the rate of death among HIV-positive women
These findings, along with their clinical experience, provided the team members with a sharper definition of the severe and differing impacts of trauma on the women in its program. When they conducted the meta-analysis and reviewed studies performed by other colleagues, “we saw that trauma leads to failure at each step of the HIV care continuum,” notes Dr. Machtinger. “And trauma leads to morbidity and mortality, even more importantly off of the care continuum, [related to events] we wouldn’t [normally take note of in the virologic control paradigm] like hospitalizations, and illnesses and deaths.”
Preventing trauma-related deaths
Soon after the studies came out, Dr. Machtinger was invited by Naina Khanna, executive director of Positive Women’s Network–USA, to speak at a press conference at AIDS 2012 in D.C. Khanna had seen the “devastating impact” of trauma on women in her organization and wanted a researcher to be present to provide scientific evidence alongside her experiential data. Meeting and working with Khanna was one of the most moving and career-changing experiences of his life, Dr. Machtinger shares, because he came to understand more vividly the value of advocacy and policy in women’s health.
WHP and PWN-USA became formal institutional partners and have worked together since. Both became unified in their commitment to developing a scalable model of trauma-informed primary care, championing it as potentially the next major innovation in Ryan White care delivery. To that end, the partners convened a meeting in D.C. in August 2013, bringing together twenty-seven trauma researchers, academics, advocates, policymakers, and governmental officials for two days to begin the process of identifying a model to help women heal from past trauma and prevent further abuse.
Subsequently, they published a paper to guide program directors. And the partners have been lending their expertise to forums on the federal level. They continue to advocate with the Office of National AIDS Policy, the Health Resources Services Administration, and other governmental entities and working groups responsible for the design and implementation of Ryan White care.
“Ryan White is an amazing beacon…it taught primary care clinics that they can’t do this alone. [It taught] that primary care has to include robust social services and that primary care clinics need to partner with other agencies inside and outside of medicine to be able to [substantially] affect the health and lives of people in their care, says Dr. Machtinger. But the time has come to revise the virologic control paradigm. “We need to change the expectation of Ryan White primary care clinics [and set new goals] to eliminate preventable deaths among people living with HIV—and preventable deaths include people who die of hopelessness that stop them from taking their medicines that really aren’t being addressed effectively in Ryan White primary care.”
These new goals, as Dr. Machtinger and others suggest, include helping patients heal from trauma along every step of the continuum of care, starting with screening and referrals for recent and past trauma as a core component of HIV treatment. “In this way, Ryan White Clinics can build on the amazing successes we have had treating HIV and more effectively deal with the actual causes of illness and death among women living with HIV, which are almost all related to mental health, substance use, and violence,” says Dr. Machtinger.
Trauma-informed care as primary care
How do we make healing from trauma a reality? It starts with creating a culture of trauma-informed healthcare.
Expanding the job description. Clinicians must first understand that trauma care is part of healthcare. “Many people in primary care don’t think that childhood abuse or intimate partner violence or structural violence like racism or homophobia or transphobia or community violence, like police violence, is in their domain, something they can address and should address in the context of primary care,” says Dr. Machtinger. “They also don’t believe that it’s possible to address it. They have not been taught in medical school that somebody who has experienced child abuse and is experiencing PSTD that that person can heal; and they’re not taught and resourced with ways to help them heal. [However] we as physicians should be held accountable to effectively treat depression, PTSD symptoms, violence (intimate partner violence or random violence), and substance use.”
Primary care sites need partners. To help women heal from trauma, specific evidence-based interventions have been shown to work, starting with screening and ultimately to trauma-specific treatments, such as trauma therapy and peer-empowerment leadership and support groups. In order for trauma-informed primary care to work, however, clinicians and other staff need to partner with other organizations in the community that are expert in this area and also be educated about what a healing response to trauma entails, suggests Dr. Machtinger.
Trauma-informed services focused on body, mind, and spirit help improve the mental health of patients as well as help patients who are substance abusers begin the journey toward recovery. Notes Dr. Machtinger, substance use and mental health interventions are typically “woefully inadequate.” For example, substance use interventions may work for the time a patient is at a residential treatment center but often that patient relapses after he or she leaves. One of the main reasons for these relapses is that trauma and PTSD are not being treated alongside mental health conditions or addiction. “The need to treat trauma alongside depression and substance use for these treatments to be effective has been demonstrated conclusively by research. Yet this is rarely done,” says Dr. Machtinger.
Self-care starts at home. It is important that primary care doctors and staff learn how to heal themselves. “Partnerships are so key in trauma-informed primary care because primary care clinics are typically overwhelmed, primary care physicians themselves are overwhelmed for many reasons because of the pressure put on them by their institutions but also because of the nature of who they’re caring for,” says Dr. Machtinger. “Many of the primary care physicians themselves have had trauma or they would not have chosen this field. Many of us are HIV-positive; many of us have severe trauma histories; and we work with patients who come in and are sharing with us very traumatic events, and that triggers clinicians and they experience a lot of vicarious trauma. And primary care clinics are not resourced to help clinicians care for themselves, to understand the impact of trauma on themselves.”
Creating a healing environment. An important part of creating a trauma-informed culture is promoting peace in clinic. “The design of clinics often reflect the trauma of the patients. Oftentimes clinics are really chaotic. People in clinics are really reactive; they’re really loud. People are really offensive sometimes; the front desk staff can be really barky. People are really rushed,” says Dr. Machtinger. “What patients with trauma need, and what providers with trauma need to care for them, is a calm clinic, one where they’re supported, where they’re not being asked to do impossible amounts of work in very short periods of time, where their own psychological stresses are being acknowledged and dealt with. And that’s not an impossible task. We’re starting to do it in our clinic, by educating our providers about the link between trauma and health in their patients and in themselves, and giving them tools, the skills to communicate with each other and their patients in a more compassionate and understanding way.” A compassionate and calm response will improve staff and patient relationships, as well as relationships between providers, attests Dr. Machtinger.
Primary care can’t opt out. Even though the issue of trauma is systemic, pervading institutions like family, community, school, police, and so on, the health infrastructure needs to embrace the idea that the problems introduced by childhood sexual abuse, intimate partner violence, community violence, and structural violence, like racism and homophobia, are solvable. Healthcare providers need not opt out, as most have done so far, and should opt in. The relationship between trauma and disease is too important, argues Dr. Machtinger.
“The health system is massive, billions and billions of dollars and millions of people. It’s these huge buildings and all of these drug companies. This massive, powerful network of people and institutions, all supposedly trying to help people get healthy. [But] then it’s largely been ignoring a primary if not the primary reason people are sick,” says Dr. Machtinger. “I think we need to break out of our offices and our addiction to prescribing medicines and look at other ways to help people heal. Addressing people’s problems through partnerships with community organizations and through innovative interventions in clinics I think is the best step that I know of towards a more healing system.”
Healing is possible
“Trauma has all of these devastating outcomes. Most people with HIV ended up getting infected with HIV in the setting of some trauma. Not everybody, but many people. And once people are living with HIV, trauma is negatively affecting their health outcomes,” says Dr. Machtinger. “I get to a place when I talk to people and they say fine, what can I do about it?”
To answer this question, Dr. Machtinger along with the WHP team and their partners have conceptualized the response to lifelong trauma in three different ways.
“Firstly, trauma interrupts connections between people and healing from trauma requires repairing those connections through trauma-specific therapies, including cognitive behavioral therapy and sometimes reexperiencing therapy. And it requires healing those connections through creating support and community through organizations like The Medea Project and Positive Women’s Network–USA, where people can come out about their HIV status to people they trust, make friends, share their actual lives, and get the support they need.
“Secondly, trauma interrupts physiological connections in the brain, creates anxiety, and makes people triggered by events that are occuring now because of events that occurred in their past. Healing from trauma requires a physiological approach through the use of medications or the use of physiological techniques like EMDR [eye-movement desensitization and reprocessing].
“Thirdly trauma affects one’s connection with one’s own body. Many people who have experienced trauma have very problematic relationships with their body. A healing response to trauma requires some form of mindfulness-based stress reduction, movement therapy, or yoga. People will choose whatever they relate to first, such as theatrical expressive therapy, or supportive therapy through peers, or individual therapy, or people might not want any of that and want to go to our mindfulness-based stress reduction group. Actually healing from PTSD and severe trauma will likely require a combination of one, two, or three of those categories of interventions.”
One intervention, whose positive effects the WHP team members have seen and studied firsthand, is an expressive therapy program for women called The Medea Project: Theater for Incarcerated Women, started almost twenty-five years ago by Rhodessa Jones. Eight years ago, WHP partnered with the Medea Project to create HIV-specific workshops. The Medea Project: HIV Circle has since toured the U.S. in an effort to share these stories and help destigmatize the disease; a documentary titled Talk Back Live has captured their explorations of what it means to live with HIV in the twenty-first century, as the website expresses it.
“When I first proposed participating in the Medea Project to a number of people I was just flabbergasted that they agreed because most of the women were not out about their HIV status. Actually none of the women were fully out about their HIV status before they participated in the Medea Project. I participated in many of the workshops of the Medea Project. I watched women as they first met one another, started writing about their experiences, reading their experiences to each other, choreographing their experiences with Rhodessa Jones…into this theatrical presentation. And then performing this in their initial theater run to over 1,000 people,” says Dr. Machtinger, who was inspired watching the healing happen right before his eyes.
Through experiences like The Medea Project, women find that they are strong, and confident enough to disclose their status to others, make friends, find support, notes Dr. Machtinger. “If you are not out to anybody, it can be very dark and isolating. It’s really, really hard to share your life if you don’t feel safe enough to be out about your status and form real relationships. That secret is such a huge burden.”
He continues: “What we realized in the Medea Project is when the women were writing stories and then sharing their stories with others, the first stories that they wrote about and were willing to talk about were their HIV status, their history of HIV, their feelings about HIV, and the stigma of being HIV-positive. [However] it took many, many months and for some people many years to write stories about their trauma and their childhood sexual abuse and their victimization by their partners.”
Neither disclosing one’s HIV status nor unpacking one’s history of trauma is easy work. Reflecting on
childhood sexual abuse, for example, can very often be clouded by immense shame. But the catharsis of moving past the secret of both is the same, says Dr. Machtinger. Healing is possible for both.
The WHP team conducted a formal study of the impact of The Medea Project. “An Expressive Therapy Group Disclosure Intervention for Women Living With HIV Improves Social Support, Self-efficacy, and the Safety and Quality of Relationships: A Qualitative Analysis,” coauthored by Machtinger, Carol Dawson Rose, Rhodessa Jones and others, and published in the Journal of the Association of Nurses in AIDS Care, outlines five ways that the women were impacted in a positive, transformative way.
The five impact categories include:
Sisterhood. The formation of deep, honest, and supportive relationships among group members
Catharsis. Freedom from the burden of secrecy about HIV, childhood and adult traumas, and other stigmatizing experiences
Self-acceptance. Reframing the understanding of what it means to be an HIV-positive woman, normalizing life with HIV and embracing a stronger and more positive self-identity
Safer and healthier relationships. Developing safe, honest, authentic, and fulfilling relationships
Gaining a voice. Gaining a sense of purpose and accomplishment as an educator and activist and the desire and confidence to change the social norms that create stigma, isolation and trauma.
“I saw Debra driving a car.”
Recently, Dr. Machtinger was talking to a patient about possibly joining in The Medea Project or one of the other interventions. “She surprised me by saying yes. And this is the first time that I really felt that I was having a real conversation with her. I asked what had changed and she said, ‘I saw Debra driving a car.’
“I knew exactly what that meant because Debra used to be addicted to crack, homeless, and well known in the San Francisco community as somebody who was lost, permanently. Debra joined the Medea Project and is now one of its leading people, and is so much healthier. She’s completely off of crack cocaine, she’s housed, she dresses beautifully, her health is perfect, and she has a car now. And when this patient saw Debra looking beautiful, driving through San Francisco in her car, that to her was something very meaningful. To her that meant it was possible for somebody like Debra, like herself, to get that much better. And I think that she didn’t think that was possible. I don’t think Debra believed it was possible before she went through that transformation. And I don’t think most doctors believed that was possible. [Not believing in the possibility] gets in the way of people trying to be bold and to help people in a deeper way than we do now….”
Empowerment is treatment—it’s the key to improved health and wellness. The first step, notes Dr. Machtinger, is for someone living with HIV to realize that HIV should not be a source of shame. Women should understand “[t]hat getting HIV was not a crime. It was not because you were a bad person. It’s not your fault. There’s so much stigma and so much blame about just having HIV. [They should understand] that being depressed or using substances is not because you’re a deficient person but is a coping strategy that works but is ultimately problematic. It’s about forgiving yourself, and understanding that a lot has happened that has not been in your control. And that you can really reclaim that control, reclaim that sense of self and sense of power and have a voice and have a different perspective on being HIV-positive and on having been a trauma survivor. Your role in the community can be somebody who could actually help change the reality for other people who either don’t yet have HIV or are living with HIV.”
Currently, the Women’s HIV Program is working on transforming its clinic into a demonstration site of trauma-informed primary care. It was one of six sites around the country to be funded by the Robert Wood Johnson Foundation, and WHP was the only one specific to HIV care.
“What we’re working on now is creating all the different interventions and studying them while at the same time trying to make sure that what we’re creating is scalable to other Ryan White primary care programs throughout the country,” notes Dr. Machtinger in closing. “What was missing from our last paper were the details of how you go about, step-by-step, transforming your program into one that effectively responds to people’s trauma instead of primarily focusing on getting their viral load to undetectable.”
For more information, log on to: http://whp.ucsf.edu.
Chael Needle is Managing Editor of A&U. Follow him on Twitter @ChaelNeedle.