In my work as a therapist, I witness daily how my patients’ HIV diagnosis and trauma can intersect and compound one another. Those I work with are often experiencing domestic violence, homelessness, racism, homophobia, and transphobia. Receiving a diagnosis of HIV and living with the associated stigma can also cause grief, anxiety, and traumatic stress. Like HIV, trauma, mental illness, and substance use are public health issues that are also driven by institutional neglect and societal stigma. Hardship is compounded in the community I serve that is impacted by financial, educational, and social disinvestment and oppression. The lack of choices that deteriorate self-efficacy in sexual health also inhibits mental and emotional well-being. Where to sleep? Where to keep prescriptions from being stolen? How to maintain three jobs and get to an appointment? How to have safer sex in survival sex work? How to negotiate violence in the home and community and get out alive? What is the least-worst option when deciding between shelter, medicine, food, heat, or physical and emotional safety? I have come to understand the complex ways in which HIV and other traumas interact. Though there are effective clinical approaches for supporting these journeys, systemic change is needed to intervene with the mental health crisis impacting people with HIV (PWH).
Both first-hand accounts and decades of research in my field show traumatic events impact long-term health outcomes. Trauma exposure increases the likelihood for conditions like post-traumatic stress disorder (PTSD), depression, anxiety, and self-medication or substance misuse. Surviving the circumstances of domestic violence, policing, homelessness, crime, poverty, and oppression take a debilitating toll on the nervous system. Symptoms can be disruptive to maintaining adherence to HIV treatment due to the increased mental load, institutional mistrust, and diminished hope for the future. PWH may feel the virus is another experience that happened “to them” that is outside of their control or for which they are to blame, which can intensify their mental and emotional symptoms. Without adequate mental health treatment, psychosocial support, and financial stability, PWH are likely to continue to struggle with staying in care despite advancements in HIV medicine.
Examples of mental and emotional barriers to care show up in nearly every visit. The most profound instances often demonstrate the shortcomings of the health care industry at large. One individual coming to our clinic experienced abuse from an early age and exists only in “flight or fight mode” most days due to complex PTSD. Since adolescence, he has been prescribed various benzodiazepines to calm his overactive nervous system. He developed a severe dependence on this medication over decades that would later become clinically problematic for his HIV treatment. He was expected to quickly transition to other anxiety medicines that did not deliver the immediate relief he usually needed to function in life. He is one of many with similar stories. The inconsistencies in prescribing guidance have made psychiatric care a minefield for patients.
Pain management (and prescribing of controlled substances in general) also presents the same issue. Patients who were started on opiates for pain control years ago find themselves constrained by a health care industry that often abandons and demonizes them now. Where I work in Philadelphia, the opioid and fentanyl epidemic devastates families and the community at large. For a patient at our clinic who spent several months connecting to substance use treatment, time was not on her side. Within a few weeks of her starting medication assisted treatment (MAT) with her primary care team, she learned she was going into kidney failure and would require dialysis. Though she was successfully collaborating with her HIV/primary care team in addressing her substance use recovery goals, she was denied placement at all dialysis clinics in the city for months. She was expected to spend upwards of 12 hours in the emergency room multiple times a week to get life sustaining treatment – an ask that made impossible choices for someone also facing responsibilities to her family. It was shocking to see medical providers in other settings blame her for her substance use disorder and frequently neglect her care, despite knowing the physiological effects of dependence and withdrawal and the roots of the opioid epidemic in the pharmaceutical industry. After extensive advocacy, she now has a dialysis clinic and continues to be successful in MAT. However, her trust in medical care has eroded after many providers refused to listen to her needs.
In another instance, an individual I worked with spent several years sleeping outside, in-and-out of shelters fighting to maintain their HIV treatment. They faced frequent harassment due to being queer and transgender and only found some refuge in small, underfunded LGBTQ shelters and recovery programs. They shared that their displacement started after the police violence after the George Floyd uprisings. Tear gas, rubber bullets, and officers flooded neighborhoods, creating terror. During this time, they started experiencing acute stress symptoms that worsened into psychosis. They became reliant on drugs to find emotional safety in an unsafe world. They lost their job, housing, and had difficulty keeping a phone. They didn’t have a safe place to keep their medicine, which was frequently stolen. They couldn’t schedule or keep appointments with their HIV rprovider without a phone. Not until they were able to get into stable housing through a recovery program did they have the tools and clarity to care for their HIV.
Other times, the trauma itself comes from the patient’s HIV diagnosis. Patients come in with an immense amount of self-blame for being HIV positive. It is compounded by the shame that family, friends, colleagues, religious leaders, politicians, and some health care providers perpetuate. Again and again, I will say, “This is not your fault and you are not to blame.” I tell them this is an institutional problem. If everyone had the information and resources they needed like free and accessible condoms, needles, pre-exposure prophylaxis, and post-exposure prophylaxis, and health care, we would not be in such a dire public health crisis in the United States. Sometimes, people will believe me, but other times the self blame and internalized stigma cuts so deep that they do not know the point of living, or they can’t imagine a future where they feel they deserve to be safe, healthy, happy, and loved. Without an image of that future, why would a patient keep showing up or take medication?
When the reasons for missing appointments and doses are indescribably tragic, these stories are difficult to unpack in a fifteenminute visit. They do not come up when a provider asks how many times you have missed medication this week. It is not measured in a viral load. It is not captured in an insurance claim. Can rampant dehumanization be explained in medical necessity criteria?
I wonder what it would look like to respond to the mental health crisis in HIV care with the space to hold these traumas. It can’t be done alone, nor should it be done alone. Providers and patients alike will face burnout without a collective approach. A “bootstrapping” mentality that frames one’s health as an individual responsibility is a myth. We are in a political climate in which HIV funding and care must be fought for once again. It may feel essential to minimize cost and prioritize needs, but leaving anyone behind will not get us closer to where we need to be. The work we do now is part of a long legacy of activism and community care.
In order to do better in meeting the mental health needs of patients, we need to move the needle on policy at every level. PWH need medical providers who are nonjudgmental and attentive to the industry’s stigma towards HIV, mental health, and substance use. In 2019, a survey of 330 health care workers across Washington, D.C. showed that 66 percent held negative and stigmatizing beliefs about PWH.[i] The same study found that stigma-focused training was effective in reducing rates of bias. Prejudice towards PWH in the medical field is shown to negatively impact viral suppression and retention in care.[ii] Additionally, for people who inject drugs (PWID), 78 percent reported a stigmatizing experience with health care that reduced trust in health staff and institutions.[iii] These findings point to a clear need for training of both new and veteran medical staff. Training must center the experiences of PWH in curriculum and address bias around reproductive choice, breast feeding, sex work, gender and sexual identity, and substance use.
Medical providers must also have the tools to align with and support their patient’s goals in medication adherence, mental health, and substance use. I and many others in my field have found that the transtheoretical model of change (or “stages of change”) and the harm reduction framework are effective in understanding a patient’s perspective and connecting to their goals.[iv] Stages of change emphasizes a nonjudgmental approach to behavioral modification with strategic support, whether someone is “contemplating,” “preparing” for, or “maintaining” change, while navigating trauma. Through motivational interviewing, health care workers can help weigh the pros and cons of smoking cigarettes, medication non-adherence, and drug use, in a way that acknowledges patient autonomy and the role of these behaviors in helping them cope day to day.
A patient I worked with this year had fallen off on taking his HIV medication after a difficult patch in life. He had started using methamphetamines after his boyfriend had suggested taking it to enhance their sex life. The situation deteriorated as they both became more dependent on meth and the dynamics of their relationship changed. The patient often felt pressured to have sex and the two were increasingly agitated with one another, getting into verbal and physical altercations. Without judgment, we talked about the reasons he stayed with his partner and continued to use meth. I could feel the “decisional balance” shift as he started to reflect on how the relationship and substance use were negatively impacting his mental and physical health. He started to speak with more clarity about what he felt needed to change. He needed distance from the partner, he needed to talk with others trying to reduce their drug use, he needed to restart his antiretrovirals, and start to find ways to start talking about his recent trauma. Motivational interviewing was what changed the tone of our conversation and gave him the autonomy to name his own needs.
Being able to provide mental health and substance use support in primary care settings is essential to preventing gaps in care. Removing barriers to substance use treatment can also help improve health care experiences for PWH. Even before the introduction of fentanyl, xylazine, etomidate, medetomidine, and other adulterants into the drug supply, there was an increase in opioid overdose deaths for PWH by 42 percent from 2011 to 2015.[v],[vi],[vii] Specialty and primary care HIV providers can play an important part in supporting patients with pain and substance use by obtaining the credentials needed to prescribe buprenorphine, naltrexone, and methadone. Patients who are screened and diagnosed with an opioid use disorder during a primary care visit are also more likely to access MAT.[viii] Additionally, prescribing MAT through primary care increases access when it is otherwise infeasible due to distance, availability, insurance coverage, and time constraints.[ix] Outcomes with MAT maintenance also were improved by psychosocial support, which emphasizes the need for mental health clinicians, social workers, peer specialists, and pharmacy and insurance assistance at medical visits.[x]
On a local, state, and federal level, the HIV advocacy community must also continue to support harm reduction services that distribute sterile syringes and pipes, fentanyl and xylazine test strips, and naloxone. Syringe exchange programs (SEP) decreased HIV rates by eighteen percent between 2008 and 2016, and also helped to reduce other blood-borne illnesses and complications like sepsis, endocarditis, and osteomyelitis.[xi],[xii] Naloxone and test strips have helped to reduce overdose deaths and facilitate connections to treatment that otherwise wouldn’t have been possible.[xiii] Additionally, safe injection sites (SIS) are shown to decrease overdoses and increase health care engagement among PWID.[xiv] Despite the research supporting their efficacy, harm reduction and safe injection site programs continue to receive political backlash in Philadelphia and across the U.S.[xv][xvi][xvii] For example, Philadelphia’s mayor has shifted away from these evidenced-based public health strategies, towards displacement, forced treatment, and criminalization of drug use.[xviii] [xix] These policy changes have had a deadly impact, leading to the tragic death of Amanda Cahill in a Philadelphia jail, while her withdrawal symptoms were neglected.[xx]
Though policymakers may view drug criminalization or forced treatment as a way to reduce drug use and help people who use drugs, it can create significant risks as they face unsafe withdrawal and higher risk of overdose post release; it also can lead to a disconnection from friends, family, care providers, and advocates. For PWH, prison is a hotbed of medical neglect, where access to treatment may be denied without outside advocacy or legal action.[xxi]
Multiple studies have shown that recreational drug decriminalization may reduce violent crime and prevent the physical and mental harms bred by incarceration.[xxii],[xxiii]Though critics have feared that decriminalization would increase drug use and overdose deaths, the data proves otherwise, both inside and outside the U.S.[xxiv],[xxv] Decriminalization is also a necessary step in dismantling the caste system created by mass incarceration and surveillance. PWH who are also struggling with co-occurring mental health and substance use disorders in no way benefit from carceral approaches to drug use that limit their own health efficacy and freedom of choice.
The victories for the HIV community in improving treatment, social acceptance, and quality of life have been won through the social movements and mutual aid led by PWH. Groups like AIDS Coalition to Unleash Power, or ACT UP, have organized communities and created the necessary political pressure to make HIV care a priority at the national and international level.[xxvi] They continue to advocate for the financial and institutional support that is required to sustain HIV care as we know it and define the future of care. The policy changes needed to respond to the mental health and substance use needs of PWH will require strategic and creative strategies to make a reality. Clinicians, researchers, and policy advocates that support PWH in political struggle will be much closer to bringing an end to the HIV epidemic and creating care models that support mental and emotional well-being.
