WOMEN AND HIV: THE POSITIVES AND NEGATIVES OF LIFE WITH A CHRONIC CONDITION

By Molly Walsh

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The memorial wall at the Pierce County AIDS Foundation in Tacoma, Washington, remembers those lost to AIDS. Photo by Molly Walsh.

A Surprising Diagnosis

In October 2009, Project Homeless Connect, a Pierce County-based nonprofit, hosted their annual health fair at the Tacoma Dome in Tacoma, Washington. Rows of tables and booths lined the venue floor as local health and social service organizations set up to tend to members of the community who were experiencing homelessness. The goal of the one-day event was to connect those in need to medical care, substance abuse treatment, hygiene services and employment resources[1].

 

At the time, Viki Nikkila was living out of her car and attended the event in hope of accessing some of the community resources that were available in the region. While circulating the fair, Nikkila continued to pass by a booth operated by the Tacoma-Pierce County Health Department that was offering free HIV testing. Passing by the booth repeatedly, Nikkila decided that it wouldn’t hurt to get tested.

 

After conducting the test, booth volunteers informed Nikkila that her results would be ready in ten minutes. Nikkila said she had no reason to suspect that the result would be anything other than negative, so she went to visit more booths before returning for her final result. After ten minutes had passed, though, the booth’s volunteers had no answer and asked Nikkila to wait an additional ten minutes. At the end of this second waiting period, Nikkila was escorted to a private area behind the booth and was informed that she had tested positive for HIV.

 

Nikkila is one of over 2,000 women living with HIV in Washington State[2] and across the United States, about one quarter of Americans infected with HIV are women[3]. Across the country, women account for almost one-fifth of new HIV infections[4]. And as of 2020, women accounted for one out of every eight new HIV infections in Washington State[5]. Although HIV infection rates have been lowering amongst women in recent years, it still remains a multidimensional public health concern for women in Washington State and across the country[6].

 

With the advancement of antiretroviral treatments[7], the HIV crisis may look different in the modern-day United States, but memories of the virus still echo current events, especially in the era of the COVID-19 pandemic[8]. In addition to these cultural scars, there are still remaining stigmas and stereotypes, especially for women living with HIV[9]. Women living with HIV continue to face unique stigmas relating to their HIV diagnosis, often intersecting with sexuality, race, class and age[10].

 

A Stereotypical Response

Notes displayed at a World AIDS Day event in Olympia, Washington in 2018. Photo by Molly Walsh.

Women living with HIV may experience stereotyping from friends, family members or acquaintances who are unfamiliar or uneducated about the condition. For Nikkila, she has faced this form of stereotyping from people who continue to hold antiquated views of what it looks like to live with HIV. Nikkila said that she has interacted with people who are surprised to learn that living with HIV today no longer reflects news reports from the 1980s, that showcased images of emaciated figures and breathless patients who were living out their final days in an AIDS hospice[11]

“They think you're supposed to be skinny, looking like death, you know, like the old pictures back in the 80s,” said Nikkila. “Yeah, we were dying back then, but we have medications now that can allow us to live a normal life. It's like they're living in the cave days. I still have friends that you know, taboo, ‘I can’t drink off your glass,’ or whatever.”

 

Widespread stereotypes may also lead to assumptions about a woman’s lifestyle or personal history if her diagnosis is revealed, as in the case of Nikkila.  

“It was really hard on me, because people will automatically classify, ‘oh, she must have been a prostitute,’” said Nikkila. “‘Oh, she must have been shooting drugs,’ you know. So, they put that label on you, rather than just asking you, how did you get it? Well, I had hetero sex, you know, and they don't realize it. So, they're assuming that I'm somebody that I’m not.”

 

Over the past four decades, the HIV/AIDS epidemic expanded from isolated reports into a full-fledged health crisis in both the United States and around the world[12]. Across the United States, over one million people are living with HIV, including a quarter of a million women[13]. From the time the virus was first reported in the early 1980s, the HIV/AIDS epidemic has spurred numerous political controversies, while also jumpstarting social movements tied to sexual orientation, race, class and gender[14].

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A Shifting Narrative

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Jill Royer shares her story at a Pierce County AIDS Foundation event in December of 2019. Photo by Molly Walsh.

For those who have been living with HIV since the 1980s, they have witnessed seismic shifts throughout the decades, both scientifically and culturally. Many have also had to cope with the mental transition along the way, from preparing for an almost certain death, to living with a chronic condition.

 

In the late 1980s, Jill Royer was tested for HIV while following a needlestick protocol. At the time, Royer was living in Alabama and working in an emergency room but was soon set for a return to school. Before Royer could attend classes, though, she was required to receive a certain course of immunizations. Unable to afford the necessary healthcare visits, Royer erroneously reported a needlestick incident, so that she could receive the required vaccinations through her employer.

 

During her vaccination appointment, Royer was already familiar with the process, as she had previously experienced needlestick incidents in the workplace. A new feature for Royer, though, was a free HIV test to accompany the necessary shots. Soon after, Royer left her job at the emergency room to start back at college. In the weeks following the vaccination appointment, Royer almost forgot about being tested for HIV, until she received a phone call from her testing provider asking her to schedule a follow up visit to discuss the results of her HIV test. 

 

At the follow up appointment, Royer’s doctor initially tried to reassure her, ordering a more sensitive test, and informing Royer that her test may have produced a false positive.

“I was driving around,” said Royer. “I was trying to figure out, how am I going to do this...Everything was going through my head. Just like the rug had been pulled out from underneath me. And so, I really was freaking out, like, what's going to happen?”

After further testing, Royer’s HIV diagnosis was confirmed, and results demonstrated a CD4 cell count of 187. According to the National Institute of Health’s Office of AIDS Research, test results that record CD4 counts below 200 indicate Acquired Immunodeficiency Syndrome, also known as AIDS[13b]. Before referring Royer to an outside clinic that cared for HIV and AIDS patients, Royer’s doctor handed her a stack of books that tackled subjects like death, dying and suffering.

“He literally gave me like four books on death, dying and suffering,” said Royer. “I still have one of them. I know that now, he didn't give them to me like, ‘here are four books on death, dying and suffering.’ But when I looked at those books, I'm like, these are books on death, dying and possible suffering.”

With limited treatment options available at the time, Royer started taking AZT. A former cancer treatment, AZT was fast-tracked for approval by the FDA but was known for harsh side effects and limited efficacy when used alone to treat HIV[14b].

“I was put on a mega dose of AZT,” said Royer. “I think it was ten pills a day. So, two pills, five times a day of AZT, a failed cancer drug. Kind of unusual here, I am going into keynote radiation physics, the treatment of cancer, and doing all this stuff with my degree, and I'm on this failed cancer drug to try and help save my life, which it didn't do any good.”

After Royer’s diagnosis, she started to question what it meant to be a woman living with HIV and AIDS and what it meant to be someone who didn’t fit the widespread image of someone living with the disease. Having just turned 25, and with no reliable treatment yet on the horizon, Royer was unsure of how long her life would last or what to do with her remaining time.

“I was just like, what am I gonna do,” recalls Royer. “You know, am I just going to sit around and think about dying?”

 

Once having a clear plan for her education and career, Royer was now unsure how to proceed. As she wrestled with these questions, Royer was grateful to have her mother by her side to help provide additional support and guidance.

“My mom was just like, ‘no, you really need to keep doing what you're doing,’” said Royer. “‘I don't want what you just learned about today change what you're doing tomorrow.’ Which is hard in as far as what your future goals are, but it probably was the best advice I could have received. Because it helped me to go. I just really was focusing on my school and my clinicals and doing everything that I needed to do and get through it. And I think that made a huge difference."

Gradually, Royer revealed to her diagnosis to different members of her family, including her siblings. For the most part, Royer said that her siblings accepted her HIV diagnosis. But, at times, Royer was still subject to widespread myths about how HIV was transmitted[15]. Royer recounts a trip to the movie theater with her family. Royer’s older sister didn’t want Royer to share a drink with her nephews, in fear that Royer could transmit the virus through a drinking glass.

“My sister's very brutally honest, you know, she's very frank,” said Royer. “She's just like, ‘that's what I read in the paper.’ And, you know, ‘Jilly…I do I hate that you have it, you know, obviously, but gosh, wouldn't you hate it if something else happened to somebody else in our family?’ And that was a very good way for her to put it. And I'm like, totally. I know there's no way that I would ever want this to happen to somebody else or to me be a part of that happening.”

Throughout the history of the HIV/AIDS crisis, those living with HIV have been subject to misconceptions or stereotypes about the virus and its transmission[16]. Today, it is known that HIV is not spread by casual contact but is most commonly transmitted through the exchange or transfer of specific fluids like blood, semen or breastmilk[17].

Some research has demonstrated, though, that this increase in knowledge about the virus hasn’t necessarily translated to the public perception toward those living with HIV[18]. A 1991 article for Cornell’s Roper Center for Public Opinion Research reported that even as public education about HIV/AIDS increased throughout the late 1980s, a sizable number of survey respondents reported that they would still take actions to avoid working beside a person living with AIDS[19].

And even as researchers continue to learn more about HIV in the modern day, many myths, particularly those relating to HIV transmission, have been perpetuated by newer generations[20]. In 2019, Merck and the Prevention Access Campaign conducted an online survey, asking young people about their knowledge and perceptions about HIV. Respondents who identified as part of the Millennial and Gen Z generations reported knowledge gaps about HIV[21].  

According to the survey, almost one quarter of HIV-negative millennials and over 40% of HIV-negative Gen Z reported being either “not informed” or only “somewhat informed” about HIV. Over one quarter of millennials who tested negative for HIV reported times that they have averted casual contact or social interaction with those who are living with HIV[22]. Nine out of ten survey respondents who are living with HIV said that they are hesitant to share their HIV status with family or friends, due to possible backlash or discrimination[23].

Decades ago, Royer avoided sharing her HIV status with her father. At the time, Royer’s father was struggling with an addiction to alcohol and Royer worried that news of her diagnosis would lead her father toward a dark path.

“I just felt like, wow, I'm just going to totally send my dad off on a binge or something,” said Royer. “And that really bothered me. So, I carried a lot of weight on my shoulders and didn't want to say that to my father, because I didn't want to have to deal with the possibility of what that would do to my dad. So, it was a while, quite a long time before I told him.”

During the late 1980s and early 1990s, reliable HIV treatment was not yet available, and the few approved medications on the market, including AZT and Didanosine (DDI) were accompanied by harsh side effects[24]. While on a course of DDI in the early 1990s, Royer developed a severe case of pancreatitis. Royer was eventually hospitalized for the condition and she said that due to her declining health, she wasn’t sure how much time she had left to live. After making a recovery and leaving the hospital, Royer was inspired to reveal her HIV status to her father.

“I told my dad and my dad cried on my shoulder,” said Royer. “And suddenly said, ‘oh, my God, Jilly, what am I doing? I should be supporting you.”

Soon after Royer told her father about her HIV diagnosis, she suffered from another flare up of pancreatitis. Royer said she experienced pain so severe that her father had to bring her an emergency room. At the emergency room, Royer was tended to by a young male doctor. Royer informed the doctor of her HIV status, and that her pancreatitis may be caused by her DDI medication. After sharing her medical history, Royer’s doctor responded with invasive questions about how she contracted HIV.   

 

The doctor asked me how I got HIV,” said Royer. “And I still didn't know for sure. I assumed it was through sex…but was that from a needle stick I had? There was one way back when, which was from the venogram that came right out of somebody’s (vein). So, there are all those things, but I put that to rest, right? It didn't matter, because it was gonna treat me the same way, regardless of where it came from, or how I got it. So, he asked me two questions. How did I get it, and was it from prostitution? Or using, not sharing a needle, using intravenous drugs?”

Curled up in pain on the emergency room bed, Royer was upset by this line of questioning. Not only because the questions were irrelevant to her treatment, said Royer, but also because her father was in the room during her exchange with the doctor. Royer was worried that the doctor’s questions would lead her father to make assumptions about her personal history. 

“I can't imagine somebody doing that to me today,” said Royer. “Feeling as bad as I felt. I felt horrible. My father was there. He had just found out. So, I knew he was dealing with, you know, a lot of emotions as well.”

 

The Search for Quality Healthcare

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A table of HIV prevention resources at the a Pierce County AIDS Foundation event. Photo by Molly Walsh.

For women living with HIV, it can be a challenge to both access healthcare and receive quality care. Alix Harvey, an assistant case manager for the Pierce County AIDS Foundation has a long history helping clients living HIV navigate through a healthcare setting. As a teenager, Harvey was the primary caregiver for their father who eventually died from AIDS-related complications. Living in California at the time, Harvey said that they witnessed the pitfalls of an unreliable healthcare system, which as a consequence, denied their father access to live-saving HIV medication.

After moving to Washington State, Harvey became a volunteer for the Pierce County AIDS Foundation (PCAF), a nonprofit organization that provides case management, outreach and prevention services to clients in the South Puget Sound Region[25].  It is one of the few nonprofits solely dedicated to HIV-related causes in Western Washington State. Now as an assistant case manager, Harvey specializes in helping women and children living with HIV. Through case management work, Harvey helps clients to tackle multi-faceted issues that many people face when living with HIV, including governmental applications, funding for medication, or acquiring stable housing.

Harvey said that often times, it can be complicated for women living with HIV to access healthcare, because in healthcare settings, women are at risk for their pain or their condition to not be taken seriously by medical professionals. According to Harvey, this issue can be even greater for women of color or women in the LGBTQ community.

“It's so hard…I can definitely empathize with my clients when they talk about how a lot of doctors just don't take them seriously,” said Harvey. “Or…say just like f***ed up things to them. Because a lot of doctors just like aren't very trauma informed. And, thinking of the things personally that I like had said to me like by like doctors is just like, insane. So, I can only imagine how it is like for like a Black woman also dealing with that. So, I know that's a huge barrier.”

 

Having competent and compassionate healthcare providers continues to be a key issue within the HIV community, especially as those living with HIV continue to be stigmatized in medical settings[26]. According to a 2017 study published in the journal, AIDS Care, the stigmatization of HIV is not just historical, but can still be a barrier facing patients living with HIV[27]. According to a 2009 survey from Lambda Legal, almost two thirds of those living with HIV reported stigma in a healthcare setting, including being turned away from care, a provider using inappropriate language, or a provider faulting the patient for contracting HIV[28]. If a patient living with HIV faces discrimination in a healthcare setting, they may forego regular medical care and may be less likely to continue with their medication schedule[29].

In addition to discrimination, women living with HIV may face additional barriers to care, especially if they live in a rural setting. Today, Royer lives in Washington State, residing in a remote area in Thurston County. When it comes to managing her HIV and other chronic health issues, Royer feels that there is a divide in medical services between the rural and more populated areas.

“I still go to Seattle for my doctor stuff I do, because I just don't think the quality of care down here is as good as it should be,” said Royer.

 

Royer said that living in a less-populated area is also more socially isolating. After moving to the State of Washington in 2008, Royer was in the process of tackling several chronic health issues in addition to her HIV and was forced to step away from her longtime career. Since moving, Royer said it has been a slow process to build community.

“Living out in the country there, I don't meet a lot of people…it's not that there's not people to make friends, and it's not that I'm not an outgoing person. It's just, I think it's more challenging the older you get,” said Royer. “And in many ways, it's always, ‘oh, what do you do?’ You know, and I do a lot of things, but you know, like, I'm not working on my career anymore. And I'm not doing this. And those can become challenges I think, too. And especially when you are older, you're like, ‘oh, well, I've worked for this, and I've done this for all my life.’”

One place Royer has found community is through the Pierce County AIDS Foundation. Originally a client accessing case management services, Royer has also served in various volunteer roles over the years, including as a client advocate, a member of the Community Advisory Board and now as a member of the organization’s Board of Directors. 

“I just try and do as much as I can with (PCAF),” said Royer. “I am considered the girl that represents Olympia, Olympia PCAF, the rural person. I carry two hats on the board.”

 

“I was driving around. I was trying to figure out, how am I going to do this...Everything was going through my head. Just like the rug had been pulled out from underneath me. And so, I really was freaking out, like, what's going to happen?” -Jill Royer

A Public Affair

 

Although HIV is a condition that been heavily associated along the lines of sexual orientation, class and race, it is a virus that can be contracted by anyone. And in the mid-1990s, Judith Billings was serving as the Superintendent for Public Instruction for the State of Washington when she was diagnosed with HIV that had progressed to AIDS. When Billings publicly revealed her diagnosis in January of 1996, it sent shockwaves throughout the local media, catapulting her as an unlikely face for HIV in Washington State.

“It kind of made the papers here,” said Billings. “And there was kind of a big deal that somebody who was a white, elected official would be willing to admit that they had HIV.”

After going public with her HIV status, the response that Billings received was overall supportive. Because Billings didn’t fit into the stereotypical mold that was commonly associated with the HIV community, Billings said that her experience of living with HIV deviated from that of other members of the HIV community.

 

“I think that's one of the things about my experience that is very different than…gay men who initially were the center of the epidemic,” said Billings. “Very different than what a lot of the shunning and discrimination…that they experienced. I think, you know, part of it was that I was a woman. I was a public figure and from as much as we could figure out, I have contracted AIDS from artificial insemination in the early 1980s. So, you know, it was like, oh, probably more sympathy than any kind of excoriation.”

Despite the overarching support, Billings can still recall times she was subject to erroneous assumptions relating to her life expectancy. When Billings shared her HIV status with the public, she made the compound decision to not seek out another term as superintendent. As Billings considered the next move in her career, she temporarily considered a run for the United States House of Representatives. As the news of her potential campaign spread throughout the media, a local news radio show had invited listeners to call in and discuss the possibility of Billings becoming a member of congress. Billings still remembers one particular caller, who assumed that Billings’ death was imminent due to her HIV status.

“Some radio host did a show, ‘well what do you think if Judy Billings would run for congress?’ And some lady called in and said, ‘well we wouldn’t have to put up with her for very long, she’d probably die soon.’ That was the way people looked at it at that time,” said Billings.

At the time of her diagnosis in 1995, Billings, the widespread distribution of combination antiretroviral therapy was on the horizon[30]. Through a cocktail of multiple HIV medications, the prognosis of HIV would transform from a terminal disease to a chronic condition that patients would manage throughout their life[31].

“My attitude from the beginning was hey, I'm not going to die from this I'm going to live with it,” said Billings. “Through the years, of course, that's just become the way that I have thought about it and a lot more of us have begun to think about it.”

During the height of the HIV/AIDS crisis in western Washington State, women became pivotal figures within the HIV community. As case numbers increased and as more organizations were founded to serve those living and dying from AIDS, women accepted a myriad of roles, both as caretakers and the leaders of these new HIV-related organizations.

After retiring from life as a politician in 1997, Billings remained active in the HIV community by joining the boards of several prominent HIV-related organizations, including the Northwest AIDS Foundation, the National AIDS Fund, the National Association of People with AIDS and the Washington State Governor’s Council on HIV/AIDS.

And as a board member for the Northwest AIDS Foundation, Billings helped pave the way for other woman who wanted to get involved in HIV prevention work. In her capacity as board member, Billings would occasionally tour across Washington State, speaking with local students about her experience as a woman living with HIV. At one particular high school in central Washington State, Billings met a woman who was also living with HIV. Although this woman expressed interest in teaching HIV education to the local high school students, Billings learned that the high school would not host the woman. It wasn’t until after Billings arrived at the school to share her story, that the school had a change of heart and let the local woman begin teaching HIV education.

 

“One of the women…who was a Mexican American woman in the middle of the state, said that she was HIV positive and she wanted to do some education in the schools there,” said Billings. “And they would never invite her in or let her do it. And after I announced, she was invited to come in. I guess they thought, okay, if there's a woman and if there's a woman who's an elected official, whose got AIDS, okay, I guess we better hear about it, you know. It was in that sense I think it opened some doors for some other people that had not been open, which made me happy.”

As a member of the Governor’s Council on HIV/AIDS, Billings continued to fight for privacy rights for those in the HIV community. At the time, the Washington State Department of Health was developing a trackable database for those living with HIV, so that they could report cases to the CDC. Afraid of potential backlash or retribution, members of the HIV community were hesitant to have their real name listed in a governmental database. Through her position as chair of the Governor’s Council on HIV/AIDS, Billings worked with the HIV community, healthcare workers, business owners and local leadership to develop alternative means of identification and reporting, so that the rights of those living with HIV could be protected.

“At that time, of course, discrimination in everything, housing, employment, that even with one’s family…was still very much a huge problem,” said Billings. “And so people didn't want their names given anywhere where it could be hacked. And so that was one of the things that I did as chair of the Governor’s Council, was we held a series of hearings around the state to hear from you know, everybody…stakeholders and from the health community and ASOs and so forth, to find out, you know what they had to say about it and recommendation would be to our Department of Health. And we came up with recommending anonymous IDs that would go to the health department, rather than names.”

Now at the age of 81, Billings looks back on her experience as an HIV positive woman as bittersweet. Leading her on an unforeseen path in life, Billings’ HIV positive status brought along both challenges and an unexpected mission, allowing her to meet many people and fight for a range of causes that she never thought possible before her diagnosis.

“I would say is this. I wouldn't wish this on my worst enemy,” said Billings. “But at the same time, I have often been asked if I have the choice of not having it, or giving up all the people I've met. And what I've been able to be involved with the cause of that diagnosis. I even have a hard time saying that I would trade one for the other.”

 

Navigating the Changing Tides

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The largest city in the State of Washington, Seattle was home to many AIDS service organizations at the height of HIV/AIDS crisis. This included the Bailey-Boushay House. Photo by Molly Walsh.

Women who were serving in leadership roles in AIDS service organizations were required to maintain a delicate balance between securing funding, managing the public’s perception of the HIV/AIDS crisis, and meeting the complex care needs of those living with HIV and AIDS. With a background in hospital administration, Christine Hurley gained public health experience at Group Health and the Pike Place Market Clinic before she was chosen to launch and operate the Bailey-Boushay house in Seattle in the early 1990s.

Today, the Bailey-Boushay House is a multi-use care facility for those with living with HIV and other complex medical needs. Providing both nursing home and outpatient services, the Bailey-Boushay House has become a well-known landmark in Seattle for the management of chronic conditions like HIV, ALS and Huntington’s Disease[32]. In the early 1990s, though, the Bailey-Boushay house was created as both a day center and hospice for those living and dying from AIDS.

While serving the multi-layered needs of those with HIV/AIDS, Hurley took on the changing tides of the epidemic. As antiretroviral treatments were introduced to the general public, Hurley was faced with the transition of services from end-of-life care, to the management of a chronic illness.

“Every eighteen hours, somebody died at Bailey-Boushay for about three years,” said Hurley. “And then in 1995, antiretroviral medications were first introduced in clinical trials and they were introduced in Seattle. Seattle was a mega clinical trial center and Harborview, through the Madison Clinic, we began to see the change immediately. All of a sudden, end of life care dropped dramatically. People still were sick, but they would get better if you got them in time. So, you would see people who are really close to, really close to end of life…could be basically restored, and it was sort of miraculous but it changed everything at Bailey-Boushay.”

As HIV transformed into a chronic condition that people lived with, rather than died from, Hurley said many HIV/AIDS organizations across the country faced a transition in the care that was provided to those living with HIV. In this new era of the HIV/AIDS crisis, Hurley carved out a new identity for the Bailey-Boushay House that focused on serving vulnerable populations, those who had complex care needs or those who were having difficulties adhering to medication schedules. Because services gravitated toward case management rather than end of life care, Hurley said the Bailey-Boushay House underwent significant personnel changes, finding staff whose expertise best fit the demographic they were serving.

“It's a different mindset. It's a different skill set…For instance, social workers who are really oriented toward grief and loss, they actually need to be doing something else with people,” said Hurley. “So, all of a sudden…people who were had been in the day program, the day health program, outpatient side of program, they also had a rate of passing through the program. And, all of a sudden, they were going to be with you forever.”

When antiretroviral treatments were first introduced, the course of treatment often required a strict adherence schedule and as many as a dozen pills each day[33]. Hurley said that adherence to a strict medication schedule was more difficult for certain populations living with HIV, including those experiencing homelessness or those struggling with mental health conditions.

“You had to be on top of it,” said Hurley. “If your life was organized and you didn't have a chaotic set of personal experiences, you'd got better most of the time. If you were homeless, if you had a mental health problem, if you had an addiction issue, those are the people who all of a sudden became our primary population. Because they needed…services. So, all of a sudden, we have a massive component of care around mental health services, primarily mental illness, that we really weren't equipped for and needed to get up to speed fast. So…we had to develop new partnerships, we know, new pathways of care are for people, and new staff to be better and better at meeting the needs of people so the, the target population really changed.”

During her time as director of the Bailey-Boushay House, Hurley recalls the prominence of women leaders in the Seattle HIV community, particularly in the early days of the HIV/AIDS crisis. Working alongside gay men, predominantly white men, were a diverse group of women who founded and took on leadership positions in local HIV-related organizations. Looking back at the early HIV community in Seattle, Hurley can’t pinpoint one defining reason why women assumed so many leadership positions, but what she can conclude is that the emergence of women was undeniable.  

“Maybe…it's a territory that women have greater traction in, in terms of career work,” said Hurley. “That women are potentially more willing to put themselves out into a risky area…But who emerged as the leadership of organizations as things got along were women. It’s not totally uniform, but it's largely the case.”

Nonprofit Director Turned Legislator

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State Senator, Jeannie Darneille (center) at a Pierce County AIDS Foundation event in September of 2019. Photo by Molly Walsh.

When Jeannie Darneille accepted the position as the first executive director for the Pierce County AIDS Foundation in 1989, she was inheriting a fledgling organization intended to serve those living and dying from AIDS in the South Puget Sound region. On Darneille’s first day on the job, she learned the organization had only about $1,400 in the bank. As a white, straight, HIV-negative woman, Darneille was initially viewed by some members of the HIV community as an unusual choice to lead an organization that was dedicated to HIV-related causes.

 

But what Darneille brought to the table was a career advocating for women’s and LGBTQ causes through nonprofit work at the YWCA, the Human Rights Commission and as director of the Emergency Food Network. Through her nonprofit experience, Darneille also developed fundraising capabilities that would later prove vital to the long-term success of PCAF.

And as Darneille’s inaugural duty as executive director of PCAF, she spent the day making fundraising calls, so that the organization could sustain itself and continue to provide services in the community. Darneille soon discovered, though, that leading an HIV-related organization at the height of the crisis would foster unique challenges, as the HIV/AIDS community became subject to unique forms of discrimination and stereotyping.  

“I learned that first day, that it was going to be different from anything else I've worked on,” said Darneille. “From women's issues, peace and justice issues, human rights issues, food security issues, wasn't going to be like that. Because one of the funders who I worked with on all of those other projects, said to me, ‘Jeannie, Jeannie, Jeannie, why are you going to work for gay men?’”

Darneille said that at the time, HIV/AIDS was an uncomfortable topic for many people, due to the condition’s stigmatization and because of its association with sexuality. And in the late 1980s, many Americans still held fears, concerns and prejudices about those living with HIV[34]. And that one fundraising call provided Darneille an important lesson that she would continue to carry through her time as PCAF’s executive director.

“(The phone call) was a very pivotal moment in my own education as I took on that job,” said Darneille. “But it's been memorable my whole life…It was shocking to me, you know. That this person I enjoyed a great deal, I really loved working with him over the years, and yet, he felt comfortable enough with me to not censor himself. And he just laid it out there, you know. And so, I knew then that it was going to be hard. I knew it was gonna be hard work but I didn't expect so early in the process to really find out how bias was going to impact my ability to build a strong nonprofit organization…a human services organization.”

With previous experience in the nonprofit sector, Darneille found that although the working in the HIV community spurred its own set of challenges, there were certain principals of nonprofit management that remained consistent. Darneille was able to recruit a dedicated volunteer corps who could contribute their individual talents, from care management to technology. Darneille also build a well-rounded staff, who were able to search for service gaps in the community that PCAF could take on. This included access to mental health services and to affordable housing.

“(Our staff) was full of compassionate people,” said Darneille. “We had a great board. We were building our financial resources. And I took part in a lot of intersectionality with other organizations. We would work to collaborate on anything we could…So, when we found out for instance, that the Housing Authority had a two-year waiting list on Section Eight vouchers, I just went ahead and started a housing program at the Foundation. And we started raising money for that, because our clients weren't living two years, couldn't get stable housing, so we start raising money for rent assistance.”

Echoing a common trend across the State of Washington, Darneille said that early in her tenure as executive director, women served in a wide range of roles at PCAF. And across the state, women became leaders of many prominent AIDS service organizations.

“In the early years, it was pretty much women,” said Darneille. “And I know there's a perception, because that was true in large cities around the country, that gay men took the lead. And I had many gay men on my board and of course, a large percentage of our clients were gay and bisexual men. But the leadership, pretty much all the organizations that were in Washington at the time, were women.”

Women serving in these positions did not come without backlash, though, from critics who felt that women, particularly straight, white women, did not fully represent the HIV community. Darneille said eventually, the HIV community started to see a more diverse range of employees who drew a wider representation of the HIV community.

“I think that was part of the balance at the time, was that the organizations needed people with history and understanding and who could come in and run a 501c3, who could raise money and who could do those things,” said Darneille. “But then, I think that there was a balance that needed to be created as well. And so, when those skillsets started to become more normative for gay and bisexual men, (we) started to see them coming into the work…a lot more. And I just think it was a matter of timing for that to happen.”

As the executive director of PCAF, Darneille helped to launch several women-centered programs to support women who were living with HIV and to help prevent women from contracting HIV. Early in the HIV/AIDS crisis, PCAF’s caseload contained a disproportionate about of women compared to other AIDS service organizations across the state. Almost one quarter of PCAF clients were women, Darneille said, and as a result, it was vital for PCAF to dedicate additional resources to women’s programs. This included community prevention work, education on safer sex practices and outreach to local sex workers, those struggling with addiction and women who were incarcerated. In addition, PCAF instituted a range of women-centered support groups, including a group geared toward African-American women.

“I think there was a real…feeling that women were not going to be the next wave on this on this epidemic,” said Darneille. “It was going to be centered in gay men for a really long time. And indeed, in terms of the majority, it was. But when you got that large of a population that's in your current caseload, you have to pay attention to the fact that we have to create some interventions and education programs with women, too.”

Eventually, Darneille’s interests turned toward state politics and public policy. In the year 2000, Darneille ran a successful campaign for the Washington State House of Representatives and would go on to serve in the Washington State House for over a decade. In 2012, Darneille won her election for the Washington State Senate, which allowed her to dive further into legislative work. Serving as PCAF’s executive director until 2007, Darneille said that her time at PCAF continues to influence her current work as a State Senator.

“In terms of how this work (at PCAF) has influenced my work in the legislature, that has been really, really clear and constant,” said Darneille.

Throughout her time in state congress, Darneille has supported legislation that has advanced HIV-related causes, including expanding access to prevention services. In her first term as a State Representative, Darneille co-sponsored a bill that would allow for the sale of syringes, with the intention of reducing shared needle use[35]. In Washington State, it is now legal to possess sterile syringes to help prevent the spread of HIV and other blood-borne pathogens[36]. Syringe exchange and distribution programs are also legal in Washington State[37].

Since the 1980s, HIV has often been associated with intravenous drug use[38]. According to the CDC, ten percent of new HIV infections were either partially attributed or fully attributed to intravenous drug use in 2018[39]. Spread through sharing and using contaminated syringes, AIDS service organizations in Washington State have dedicated resources to providing syringe exchange programs[40]. Helping to prevent needle sharing, needle exchange programs provide unused and sterile needles to intravenous drug users to stem the transmission of HIV and other blood-borne diseases[41].

Although syringe exchange programs have been demonstrated to reduce HIV rates[42], they have long been at the center of political and social controversy[43]. The criminalization of syringes, combined with the stigmas and stereotypes associated with drug use have often complicated HIV prevention efforts[44]. By decriminalizing the possession of syringes and through the expansion of needle exchange programs, health departments and service organizations are able to help reduce the spread of HIV, while also providing additional social services or treatment opportunities for those struggling with struggling with substance use disorders[45].

 

A New Beginning

PCAF Unwind 2019-80.jpg

Viki Nikkila shares her story at a Pierce County AIDS Foundation event in September of 2019. Photo by Molly Walsh.

For some women living with HIV, finding a supportive community is a vital first step. For Nikkila, her HIV diagnosis in 2009 served as a wakeup call and inspired her to make lifestyle choices to better support her long-term health.

“At that time, I kind of made the decision that, okay, I'm living with HIV right now. I need to change my lifestyle,” said Nikkila. “I need to be off the streets. I need to stop using drugs because that's just making things worse. And I'll probably have a shorter lifespan if I continue doing what I'm doing.”

Soon after diagnosis, Nikkila reached out to Tacoma-Pierce County Public Health department and was able to secure housing within days of her HIV diagnosis. While entering a rehabilitation program, Nikkila was also referred to a support group for women living with HIV, facilitated by the Pierce County AIDS Foundation. Initially uncomfortable with the idea of attending a support group, Nikkila gave it a try and ended up enjoying the camaraderie and credited the groups as the first step in becoming more involved with the HIV community.

Soon after, Nikkila became a volunteer for PCAF, helping with special events, like Dining Out for Life and as eventually as a member of the Community Advisory Board. Through her continued involvement in the HIV community, especially as a peer navigator for PCAF, Nikkila has become more open about her HIV status in hopes that her previous experience can help others with their struggles of living with HIV. Eventually, Nikkila was hired as the first peer navigator for the MAX Clinic, based in Seattle, Washington. The MAX Clinic serves community members living with HIV, often helping them to tackle multi-faceted issues that can make it harder to adhere to consistent medical care[46].

“Having been a substance user in the past, having been through the domestic violence circle and having all that criteria and background, I knew that I could relate to pretty much everybody’s situation,” said Nikkila. “And that's what they were looking for.”

Most recently, Nikkila was promoted to case manager at the MAX Clinic, providing a range of social services for clients living with HIV. This can include helping patients who are newly diagnosed with HIV, experiencing homelessness or struggling with chemical dependency.

“Along with being HIV positive, they may have five or six other barriers that keep them from engaging in medical care,” said Nikkila. “And (that is the part) that the MAX Clinic plays. We're trying to get them treatment adherence and have them get to the stage of being undetectable.”

After being aware of her HIV status for over a decade, Nikkila said that although she is living with HIV, she doesn’t want that to be a basis for how people view her. Reflecting on what it means to be a woman living with HIV, Nikkila said that she is just a normal person who is living with a chronic illness.

“I'm the same person I am,” said Nikkila. “It doesn't change me just because I'm HIV positive. I'm still the same person inside. I'm still kind. I'm still giving. And you should not judge me just because I am HIV positive. If you're assuming that I got it this way, why don't you just ask me…and I'll be more than glad to tell you.”

Footnotes

 

[1] Jacobs, Dawn. “Project Homeless Connect Is Coming Back to the Tacoma Dome!”

[2] Infectious Disease Unit. “Washington State HIV Surveillance Report 2020 Edition.”

[3] “Women and HIV in the United States.” KFF

[4] “HIV and Women.” Centers for Disease Control and Prevention.

[5] Infectious Disease Unit. “Washington State HIV Surveillance Report 2020 Edition.”

[6] “Women and HIV in the United States.” KFF

[7] “A Timeline of HIV and AIDS.” HIV.gov.

[8] McClurg, Lesley. “'They Know What A Pandemic Is': HIV Survivors See Similarities To AIDS Epidemic.”

[9] Durvasula, Ramani. “A History of HIV/AIDS in Women: Shifting Narrative and a Structural Call to Arms.”

[10] Jacobs, Robin, and Michael Kane. “HIV-Related Stigma in Midlife and Older Women.”

[11] Cosgrove, Ben. “World AIDS Day: The Photo That Changed the Face of HIV/AIDS.”

[12] “A Timeline of HIV and AIDS.” HIV.gov.

[13] “Women and HIV in the United States.” KFF.

[14] Christensen, Jen. “AIDS in the '80s: The Rise of a New Civil Rights Movement.”

13b] “AIDS Case Definition: NIH.” AIDS Case Definition | NIH.

[14b] Park, Alice. “AIDS Drug AZT: How It Got Approved 30 Years Ago.”

[15] “You Can't Catch AIDS from a Glass, 1980s - Surviving and Thriving - NLM Exhibition Program.” U.S. National Library of Medicine.

[16] McCarthy, Justin. “Gallup Vault: Fear and Anxiety During the 1980s AIDS Crisis.”

[17] “HIV Transmission.” Centers for Disease Control and Prevention.

[18] Singer, Elanor, and Theresa F. Rogers. “Trends in Public Opinion About AIDS, 1983-1990.”

[19] Singer, Elanor, and Theresa F. Rogers. “Trends in Public Opinion About AIDS, 1983-1990.”

[20] Avery, Dan. “HIV from a Hug? Misinformation Persists among Young Americans, Study Finds.”

[21] “Owning HIV: Young Adults & the Fight Ahead.” Merck.com.

[22] “Owning HIV: Young Adults & the Fight Ahead.” Merck.com.

[23] “Owning HIV: Young Adults & the Fight Ahead.” Merck.com.

[24] Dziuban, Eric J, Elliot Raizes, and Emilia H Koumans. “A Farewell to Didanosine: Harm Reduction and Cost Savings by Eliminating Use of Didanosine.”

[25] “What We Do.” Pierce County AIDS Foundation.

[26] Marshall, Alexandra, Krista Brewington, Kathryn Allison, Nikolas Zaller, and Tiffany Haynes. “Measuring HIV-Related Stigma among Healthcare Providers: a Systematic Review.”

[27] Marshall, Alexandra, Krista Brewington, Kathryn Allison, Nikolas Zaller, and Tiffany Haynes. “Measuring HIV-Related Stigma among Healthcare Providers: a Systematic Review.”

[28] “Lambda Legal Releases Health Care Discrimination Survey Results; More Than Half of LGBT and HIV Positive Respondents Report Discrimination.”

[29] Schuster, Mark A, Rebecca Collins, William E Cunningham, Sally C Morton, Sally Zierler, Myra Wong, Wenli Tu, and David E Kanouse. “Perceived Discrimination in Clinical Care in a Nationally Representative Sample of HIV-Infected Adults Receiving Health Care.”

[30] “Antiretroviral Drug Discovery and Development.” National Institute of Allergy and Infectious Diseases

[31] “Antiretroviral Drug Discovery and Development.” National Institute of Allergy and Infectious Diseases

[32] “Bailey-Boushay House About Us.” Bailey-Boushay House

[33] Tseng, Alice, Jason Seet, and Elizabeth J Phillips. “The Evolution of Three Decades of Antiretroviral Therapy: Challenges, Triumphs and the Promise of the Future.”

[34] Singer, Elanor, and Theresa F. Rogers. “Trends in Public Opinion About AIDS, 1983-1990.” 

[35] “Washington State Legislature HB 1759 - 2001-02.” Bill Summary RSS. 

[36] “RCW 69.50.412: Prohibited Acts: E-Penalties.” Washington State Legislature 

[37] “Syringe Service Programs.” Washington State Department of Health. 

[38] “Injection Drug Use and HIV Risk.” Centers for Disease Control and Prevention. 

[39] “HIV Among People Who Inject Drugs.” Centers for Disease Control and Prevention. 

[40] “Syringe Service Programs.” Washington State Department of Health. 

[41] “Access to Clean Syringes.” Centers for Disease Control and Prevention. 

[42] “Access to Clean Syringes.” Centers for Disease Control and Prevention. 

[43] Singer, M. “Needle Exchange and AIDS Prevention: Controversies, Policies and Research.” 

[44] Frakt, Austin. “Politics Are Tricky but Science Is Clear: Needle Exchanges Work.” The New York Times. 

[45] “Syringe Service Programs.” Washington State Department of Health. 

[46] “The Max Clinic.” The Max Clinic - King County