Closing My Time at HIVE

My time at HIVE has taught me a lot about social justice work and how to weave social justice into a professional career. When I think about HIVE, I think about how HIV work is innately activist work for its complex history ridden with homophobia, racism, and sexism. For this reason, finding that activist spark I want is not so difficult at HIVE. Although HIVE still works within a larger, more traditional medical institution, they are actively working towards uplifting marginalized communities. To read about how HIVE is affecting HIV medical providers, visit: https://www.hiveonline.org/for-providers/

HIVE provides many tools for providers and patients for the advancement of HIV care.

The work that I have done at HIVE has been impactful in both the development of HIVE and of myself. The patient database that I have spent so much time working on, and will hopefully be completed by the time my time at HIVE finishes, allows HIVE to answer critical questions related to HIV in the advancement of their work. The database allows users to more quickly pull information about women and couples affected by HIV and how HIV shapes their experiences. For example, the database will shed light on what it takes to be engaged in HIV care and how one might feel the stigma of HIV, among many other things. These questions are ones that are seldom answered or integrated into HIV care but are what necessitate making HIV care dynamic and comprehensive.

What I wish I had known when I had started HIVE was what it would feel like to not be interacting with the patients that I am inputting into the database. Each day, I am reading medical providers’ notes on someone’s physical, social, and mental well-being. The notes are often in depth and cover a lot of vulnerable information, but simultaneously the note cannot capture everything about the patient. Many of the challenges with the database include how to communicate the most key information about someone’s health. Recently, at a HIVE meeting, we were talking about how to capture one’s experience with HIV and stigma. As this is something that many folks affected by HIV experience, it was important to write into the database. While this is true, it’s also difficult to reduce something as complex and ever-changing as stigma into a yes or no option in a database, which is reflected in the fact that I read notes about patients and their most intimate experiences, but will never meet them. It’s difficult to reconcile the two, but seeing how people’s experiences with HIV and the conversation around HIV have changed over the years feels hopeful.

Some advice that I would give to someone who wants to become involved in social justice work is that there are so many people who are doing the work that needs to be done. There are so many pushing back against oppressive systems, and because there are so many ways in which oppression manifests, there is a vast majority of organizations who are all doing different, yet equally significant, work. One experience I had recently was participating in the San Francisco AIDS Walk where organizations from all over the Bay Area gather to support HIV programs and services. There were over 100 organizations who participated, which in turn illustrates the diversity of HIV activism—so many unique organizations who all support a common goal (to read about the AIDS Walk, visit: https://sf.aidswalk.net/About). In other words, there are so many people, from the grassroots level to the institutional level, fighting for activist causes and all that one needs to do is become involved.

A photo from the 2017 AIDS Walk.

HIV + Homelessness in San Francisco

My time at HIVE has taught me a significant amount about how one must advocate for social causes within the network of an institution. As mentioned in a previous blog post, HIVE disrupts the assumed benevolence of medical care because even working within a network that is meant to help people—the medical institution, for example—there still is a lot of prejudice and oppression within the institution.

One case recently is the changes that are and have been taking place in regards to providing housing for San Francisco’s homeless population. There are many details of these changes that I know little about, but the essence of the changes is prioritizing housing for those who are living on the streets and have not had indoor residence for a certain amount of time. But homelessness does not always mean living on the streets. Moreover, these changes are redefining what it means to be homeless and are, in effect, marginalizing other strategies of survival. For many pregnant women, actually living on the streets is not a viable option, and while they still are without a home, they find residence with emergency housing, with friends, in their car, etc. The changes that are taking place within the housing network in San Francisco are indubitably pertinent to HIVE patients who are either homeless or marginally housed and employ these methods of survival. When the news of these developments broke, the HIVE team got to work on pushing back against the changes and continuing to support the patients who were already or were to be affected. This New York Times article explains more about San Francisco homelessness.  Another San Francisco-based organization—Homeless Prenatal Program—is doing similar work.

A photo from an HPP article where the mother featured writes that “homelessness comes in all forms.”
A graphic from The North American Housing & HIV/AIDS Research Summit Series (2012).

Advocating for vulnerable populations takes work, energy and dedication. It relies heavily on resiliency. Because the work that HIVE does is so comprehensive and is not limited to the medicasphere, there is an active energy that is present in each member of the HIVE team. In other words, this work is not passive and each HIVE team member is active in their work and advocacy. When I think about what I have learned so far about myself in the workplace, I think a lot about HIVE’s social worker. As stated before, the HIVE team is composed of people with different career backgrounds so as to provide the most comprehensive care they can. I think specifically about HIVE’s social worker because she works most directly with the effects of institutional changes such as those taking place in the housing network. There is no doubt in my mind that she is working tirelessly for the safety and well-being of HIVE patients. The way she speaks of the obstacles that face HIVE patients, and combatting those obstacles, as well as the way she speaks of their successes strikes a chord with me. I know that whatever field I enter, whatever career path I may take, I want to have the same energy that she has with her in working day to day advocating for and supporting vulnerable populations.

Accessibility in HIV Care

HIVE’s goal is to advance reproductive and sexual wellness for those affected by HIV in the San Francisco Bay Area and across the United States. To achieve this goal, HIVE provides many types of care to these communities. Whether it be medical, social, financial, or otherwise, HIVE makes themselves accessible for those who need care.

As mentioned in my first blog posting, HIVE does a lot of work online through their website, www.hiveonline.org. More specifically, the blog section of their website— www.hiveonline.org/hive-blog/ —is a space where contributors can share their experiences with HIV, sex, pregnancy, disclosure, and PrEP, among many others. The blog proves to be critical in HIVE’s mission because to see and read the stories of others who are experiencing the same things can be greatly affirming. For example, for someone who is living with HIV who is finding it difficult to disclose their status to romantic or sexual partners, it is helpful to read the stories of others who have experienced similar situations.

A HIVE blog post on disclosure

Aside from the blog, HIVE’s website hosts resources for those who are affected by HIV, as well as medical providers who support these communities.  For HIVE patients, the resources can act as a supplement to the care they are receiving. But for those who are outside of the San Francisco Bay Area, or those who cannot access medical care for a variety of reasons, the website is critical in obtaining information that is otherwise unavailable. What is more is that the information that HIVE hosts on their website is presented in a warm and friendly manner. That is to say, in many cases, medical care can feel overwhelming and hostile and can be the site of incurring additional trauma, which is often not talked about. Actions such as misgendering individuals, committing racist or sexist microaggressions, and misrepresenting and devaluing one’s life experiences are all valid reasons for opting out of medical care. But HIVE recognizes the power of language and the assumed benevolence of medical care and transforms their HIV care in ways that are caring and compassionate. For example, HIVE worked with AIDS Foundation Chicago to release a series of videos on HIV and reproductive and sexual health. The videos feature real individuals and couples affected by HIV speaking about their real experiences and reproductive goals. The series is touching and poignant, reimagining what HIV care can look like. To watch, visit: https://www.hiveonline.org/chicagohivlovewinsvideoseries/

The filming of the video series

In sum, HIVE advances reproductive and sexual wellness for those who are affected by HIV by making care accessible both for those who are able to attend clinics and those who are not. For this reason, change and progress in HIV care looks like accessibility and having care be available for everyone. Taking a small step such as sharing one’s story or providing a platform to do so produces an effect beyond what one can imagine in transforming HIV care and reproductive and sexual health.

HIVE + HIV Care

One of the best, if not the best, classes that I have taken in my Brandeis career is Prof. Derron Wallace’s Sociology of Race, Gender, and Class. The course holds these identities “as influential, interlocking dimensions…that shape institutions, dynamics, processes, and cultures.” One’s identity affects the ways in which they interact with institutions, as well as the way that institutions interact with them. Sociology of Race, Gender, and Class relied heavily on Kimberlé Crenshaw’s idea of intersectionality as a lens through which one can analyze systems and hierarchies of power. Professor Wallace’s class, through his emphasis on intersectionality as a critique of institutions, taught me to never take experiences at face value, as they are informed by systemic modes of oppression.

This interrogative energy fuels much of HIVE’s work as they are committed to more than just medical care. HIVE not only provides medical care, but also intensive case management because they recognize that one’s HIV status also intersects with other facets of one’s identity. As I noted in my previous blog post, HIVE holds HIV as an identity that coexists and intersects with other marginalized identities; for example, the ways in which people of color and folks with lower incomes are disproportionately affected by HIV. To read about how HIV intersects with other identities, visit: https://www.hiveonline.org/black-queer-woman-sex-education-advocate/

Every week, the HIVE team meets to discuss updates on patients’ medical, social, financial—and many other—situations. For example, the HIVE social worker might note that a patient who needed emergency housing was able to stay with a friend for a couple of days. Or a patient who was struggling with depression was referred to and attended an OB psych appointment. Taking the time to discuss the needs, the successes, the trials of patients each week signals that HIVE recognizes that each patient’s experience is unique, dynamic and cannot be singly categorized by their HIV status. They are experiencing so much outside of their health that subsequently informs their health. 

More than this, HIVE recognizes the barriers to healthcare, not only limited to initial access but also barriers to retention in HIV care. Much of HIVE’s work is dedicated to keeping patients engaged in HIV care postpartum. There are many obstacles that might stand in the way of someone being engaged in care, with one of the biggest barriers being access—financial, geographic—to medical facilities. Other barriers include mental health and familial and social complications, among others. HIVE recognizes specifically that trauma can act as an obstacle in engaging in medical care and can keep someone from continuing medical care. To watch a video HIVE produced on caring for women with a history of trauma, visit: https://www.hiveonline.org/caring-women-history-trauma/.

Ultimately, HIVE is marked by their holistic and comprehensive approach to HIV care. The HIVE team is deeply dedicated to advocating for women and couples whose lives are affected by HIV and whose HIV status is compounded by their other lived experiences.

HIVE San Francisco

This summer, I am interning at HIVE in San Francisco, CA. HIVE is a San Francisco General Hospital-based organization that focuses on women and couples affected by HIV. This self-described “hub of positive reproductive and sexual health” has provided preconception and prenatal care to those who are affected by HIV since 1989 and since 2004, all babies born in San Francisco have been free of HIV. HIVE also does much of their work online, hosting a website that holds plenty of resources, both for those who are HIV+ and HIV-, as well as a blog, where contributors can share their experiences with HIV, sex, pregnancy, disclosure, and PrEP, among many others. To visit their website, go to www.hiveonline.org

While HIVE’s multi-pronged approach to HIV care addresses many of the inequalities in reproductive and sexual wellness, one of HIVE’s main focuses is tackling the obstacles that stand in the way of one’s access to healthcare and healthcare education. HIVE recognizes HIV as an identity that coexists and intersects with other marginalized identities; for example, the ways in which people of color and folks with lower incomes are disproportionately affected by HIV. HIVE also focuses on PrEP, or pre-exposure prophylaxis, a once-a-day pill for those living without HIV to prevent HIV transmission. HIVE aims to break down the notion that PrEP is solely for one sect of HIV- folks. HIVE champions PrEP as a tool for anyone and everyone as it can relieve the stress of not always being able to express oneself sexually and safely. Read one woman’s story of how PrEP has helped her, or check out another favorite blog post.

My time at HIVE consists mostly of working on a patient database, which will house information about their HIV, sexual, reproductive, and social histories. In other words, the database will allow easier access to the results of HIVE’s work. The team will be able to pull information faster for queries such as how many people were infected with HIV in their pregnancy, how many people had undetectable viral loads at delivery, and how many people were engaged in HIV care 6-12 months postpartum. The database will showcase all of the tireless efforts of the HIVE team to engage women and couples in matters of sexual and reproductive justice. This work will further the mission of HIVE—to advance sexual and reproductive wellness—by illustrating to both the HIVE team and others that their work is making a difference in the lives of their patients. 

By summer’s end, I hope to more acutely understand how HIV affects women and couples, especially in the San Francisco Bay Area. I hope to gain perspective into the lives of those whose sexuality intersects with HIV. Finally, I hope that I can turn HIVE’s manifesto into a daily practice.

Gaby Sandor