For over a year, we, as a community, have focused on combating COVID-19. We have focused on keeping ourselves and our loved ones safe. What has not been a primary focus is an epidemic that has caused so much pain, a global issue that shares immense commonalities with our current pandemic, caused by a virus that has yet to be eradicated from our community: HIV.

On June 2, 2021, Vice released a documentary titled HIV: The Neglected Pandemic, which highlights the history of the HIV crisis, the incredible medical advances that have been made along the way, and most importantly, the internal and external struggles of people living with HIV. It shows not only how far we have come with learning about, preventing, treating, and living with HIV but also the long road ahead.

The documentary is narrated by a man living with HIV. He is a prominent host, hairdresser, and author: Queer Eye star Jonathan Van Ness. The narration dives into the history of the HIV/AIDS crisis in the United States and describes how the virus was first identified in June of 1981 by Dr. Michael Gottlieb. Some of his first patients had contracted pneumocystis pneumonia (which is uncommon in healthy adults), as well as yeast infections. The report that month from the CDC stated that five Gay men were experiencing a sort of atypical pneumonia. Not long after, more reports of the same illness began popping up in San Francisco and New York.

In the early 1980s, the virus was called "GRID," or gay-related immune deficiency, due to its impact on the Gay community. By the mid-'80s, renamed AIDS (acquired immune deficiency syndrome), it was popping up outside of the Gay community, in heterosexual people, and even in children. From the get-go, Dr. Anthony Fauci (again well known due to his role combating the novel coronavirus) became heavily involved in studying the HIV, as well as acting as an alarmist in the medical field.

For the documentary, Vice interviewed not only those who have been diagnosed with HIV within the last decade or so but also HIV survivors from the 1980s, a time when the world had little idea of what was taking place, and when the death rate associated with HIV was at an all-time high. These survivors described the difficulties and stigma they faced when trying to obtain information at the height of the epidemic, such as nurses placing biohazard stickers on hospital doors where they were receiving treatment.

Although it has been 40 years, much of the misinformation, as well as societal and medical stigma, still exists today — even with the remarkable medical advancements, and even during this age of information. Many people are still uncertain how the virus is contracted and spread; some believe that becoming HIV positive is a death sentence. Furthermore, many Americans do not have any positive associations with HIV, and frequently draw parallels between the disease and criminal activities, such as intravenous drug use and prostitution.

A Seattle man's tale

Neil Lequia is a Seattle-based HIV-positive man who appeared in the documentary. He grew up in a Mormon household, and by the time he was 21, he had moved to San Diego, where he worked in Gay bars for six years. But after a chain of events, he found himself moving back north to Washington state.

"I was diagnosed in 2013 in the fall. This was when I was in that addiction phase. I had met someone who was all wrong for me, and really quickly I had become an everyday meth user. Within a year, I was an addict, I was HIV positive, and I was homeless," explained Lequia.

As for the specifics of his diagnosis, the story goes like this: One day, he decided to go into the emergency room. He had a lesion on his face, but he also had a skyrocketing fever that was more concerning to him at the time. While at the ER, he was asked if he wanted to receive an HIV test. He agreed and awaited his results.

"They called me in, which kind of made me think that something was up, and my boyfriend asked if I wanted him to join me. I strongly felt that I needed to go in there and do it myself, because if it was positive, then this was something I was going to have to take care of for the rest of my life for myself, and I needed to take that on and be responsible," he said.

When the nurse presented the information, she was on the brink of tears. Although Lequia had anticipated the positive test result he received, he felt numb. How did he contract HIV while in a relationship? Turns out that his partner was already HIV positive and was not taking his antiretrovirals daily.

Pre-exposure prophylaxis (PrEP), which prevents transmission to those who are at risk of contracting HIV, hit the market only after Lequia's diagnosis. If PrEP had been on the market prior to his diagnosis, it could have prevented Lequia from contracting HIV.

Nonetheless, an HIV-positive person can be sexually active with a HIV-negative person without spreading the virus, if they are taking their prescribed antiretrovirals daily.

In the medical field, there is term known as U=U, which means that if an individual's viral load is undetectable, the virus is untransmissible — and antiretrovirals make that possible.

After the diagnosis

At the time of his diagnosis, and as a healthy young man, Lequia did not have health insurance, because it was not a concern of his at the time, but he discovered that his newly needed HIV medications would cost $4,000 without insurance.

In 2015, he moved to Ellensburg, Wash., to help his grandmother out with tasks such as grocery shopping, yardwork, and her pets. It was in Ellensburg where Lequia was able to start afresh. He kicked his drug habit and founded Pride of Ellensburg, "a nonprofit community organization dedicated to inspiring and celebrating love, equality and diversity through local events, outreach and fostering opportunity," according to the website. "It was a pivotal project that helped me turn my life around," Lequia said.

During his time in Ellensburg, Lequia began seeking treatment for HIV, but there was also a long battle with stigma. "I was not getting any kind of respect or acknowledgment from these doctors, who treated me as a punk kid that was trying to score pharmaceuticals. Doctors think you're crazy... and I literally heard a doctor say, 'Meth is a heck of a drug.'"

With no HIV specialists in Ellensburg, Lequia had to come up with an alternative plan. The closest specialist was in Yakima, but the 45-minute drive each way was difficult for someone without a car. So Lequia found it challenging to access the healthcare he required. "I feel like that in itself is a discriminatory bar, to require patients to drive that far for something that's been around for 40 years now. Like, are you kidding me?" Lequia stated.

Since he was struggling with healthcare professionals in Ellensburg and strongly desired to get the appropriate care, it became apparent to Lequia that he needed to move to a city. One day, however, his grandmother discovered his HIV medications, and she threw him out of the house with one day's notice. After he left for Seattle, Lequia's grandmother hired workers to bleach and sanitize the house. According to Lequia, his grandmother believed that she could contract HIV from his coughs or sneezes. "My uncle told her that she was better off burning the house to the ground and starting over from scratch," he said.

(Although there has been some ongoing family tension, when the Vice documentary featuring Lequia was released, he held a Zoom viewing party, which his uncle's daughter attended supportively. "I can still be close with family that understands me, even with all these challenges," Lequia explained.)

While in Seattle, Lequia became heavily involved in HIV studies at the University of Washington. They set him up with a social worker immediately, and he was able to consistently take his medications while also contributing to research. In addition, he was able to hop on a health insurance plan, and finally began receiving the healthcare he needed.

Lequia spent some time working as an outreach specialist for Fred Hutch's HIV vaccine trials, during which time he would talk to people about getting involved in research studies. "I got comfortable talking about HIV that way and understanding exactly where HIV was in the present time, and that really helped me overcome my own stigma," said Lequia.

By sharing information and personal experiences, he made peace with his diagnosis, and later came out as being HIV positive via social media.

The documentary

Prior to the release of the documentary, Lequia had never been so open about overcoming his former drug addiction or living with HIV. During the three-month waiting period in advance of the release, he felt waves of anxiety. Lequia describes himself as guarded, and he finds it difficult to be quite so open or vulnerable — particularly given how toxic social media can be nowadays.

On Facebook, Lequia created a lengthy post explaining some of the information in the documentary. He was unsure how much footage Vice would use, and he wanted to get his full story out there.

After the documentary came out, Lequia received a tremendously overwhelming reception. "I had a lot of people reach out to me and say, 'Me too,'" he said. As a result, his openness has promoted more open dialogue surrounding HIV.

Lequia's hopes for the future are that more people, whether HIV positive or not, maintain both an open mind and an open heart when talking about HIV. He suggests educating oneself via books or online, taking some time to watch the Vice documentary, having open communication with others, and stopping cracking AIDS jokes.

As for those living with HIV who may be struggling, he said, "It's no big deal. It's no longer a death sentence. It's something that a lot of people live with and manage, and the meds have gone a long way. Research has shown that those who are open about their status are more likely to be on their meds. Connect with other people who have it, be open about your status, find people you trust to disclose to. And hopefully, we'll one day have a way out of here."

To watch the documentary, go to www.youtube.com/watch?v=c500I15gLho.