40 years after the first confirmed AIDS case: How HIV community, treatment and prevention have evolved

When Dale Briese thinks about the past four decades, several binaries come to mind.

Life and death. Hope and despair. Medication and no treatment.

Briese is a long-time HIV survivor, who lost some of his community to the human immunodeficiency virus, or HIV, an epidemic that has killed more than 30 million people globally.

This year, Pride month falls on the 40th anniversary of when the Centers for Disease Control and Prevention identified the first case of what would become known as acquired immune deficiency syndrome, or AIDS, in the United States on June 5, 1981.

Briese has found solace and a family in Spokane, where the LGBTQ community rallied around those affected by the epidemic in the 1980s.

“Gay men were dying, and the other parts of the LGBTQ community really wrapped themselves around them,” Briese said.

Briese was diagnosed with HIV in 1985 at the local health department. While he initially sought treatment by periodically taking long drives to San Francisco, he eventually found community and care in Spokane.

The Spokane Aids Network, (now called SAN) a group of friends, caregivers and community members formed in 1985, saw to it that services and care were coordinated for those diagnosed with HIV. Briese, who is a SAN board member now, remembers the food and the gatherings that formed and became vital to survivors at the time.

“There were churches in the ’80s where we could go and gather and talk about life, and it was one of the most heartfelt experiences in my journey, but really humbling because we witnessed and got to know people who are no longer here,” Briese said.

For nearly 15 years from 1981 to the mid-1990s, there was no treatment for HIV.

To date worldwide, 32 million people have died of HIV, and 38 million people are living with HIV today, according to the CDC.

While HIV predominantly afflicts men, particularly Black and Latino men in the United States today, it is a disease that can affect anyone, including women and children.

It wasn’t until the mid-1990s that antiretroviral drugs began to change long-term health outcomes for people living with HIV.

Treatment brings hope

Dr. Joanna Breems remembers a palpable shift in patients she used to visit at hospitals in the San Diego area, while she was in college in the mid-1990s.

Breems volunteered at an AIDS advocacy group that would put together flowers for people who were hospitalized with AIDS in the region. She remembers that every weekend was busy when she first volunteered; she would visit people dying of AIDS for an entire Saturday or Sunday.

By the end of her college career, things had shifted dramatically.

“The hospitalizations plummeted, and people stopped dying every day. Obviously, deaths were (still) happening, but it was remarkable,” Breems recalled.

She went from spending all day at hospitals on her weekends to sometimes not volunteering at all because only one person was needed.

The introduction of antiretroviral drugs was beginning to stem the tide of death, and in some cases, help people stabilize and get better.

Today, antiretroviral drugs are available typically in pills taken once daily or through monthly injections, which have been approved in the past few years. There are more than 200 treatment options for HIV approved or tentatively approved by the Food and Drug Administration.

Breems works with patients with HIV at the Mann-Grandstaff VA Medical Center in addition to teaching at the Washington State University College of Medicine.

In the past decade alone, she’s seen a difference in how the advances in medicine have offered hope and options to her patients.

A decade ago, she might have had only one or two medications to offer patients. Now, most of her patients can take just one pill a day. If one medication doesn’t work or presents side effects, she can suggest other options, because they now exist.

“The counseling I provide someone newly diagnosed with HIV now is so different than 10 years ago, when we sat down for that conversation, it was a bit like talking about cancer, and now it’s much more like reassurance and encouragement,” Breems said. “It’s obviously still bad news for someone to be diagnosed with a lifelong condition, but I am able to offer a lot of encouraging options because of the treatment we have.”

While there is still no cure for HIV, active work on vaccine candidates and cures continue.

With the success of the mRNA vaccine platform used in two of the emergency authorized COVID-19 vaccines in the United States, companies are in the midst of preclinical trials using the same technology to develop vaccines against HIV, among other viruses.

Moderna announced earlier this year that the company is set to work on an HIV mRNA vaccine candidate after a Phase 1 clinical trial of the novel vaccine approach produced promising results.

Briese has seen and lived through these developments in medicine and science, witnessing how HIV studies and treatments have influenced other parts of medicine and disease responses in the past four decades.

HIV survivors, who were diagnosed early during the epidemic, are now outliving their doctors.

“That’s something we never thought we’d see. The doctor that started (at SAN) is retiring before we’re dying,” Briese said.

The shift to prevention

A lot has changed in the decades since the first identified case of HIV, including treatment, access and stigma. What hasn’t changed is the communities of survivors that continue to support one another and advocate for better care.

While there’s no vaccine available, there is protection and preventative medicine out there for those who might be at risk for contracting HIV.

In the past decade, the approval and release of pre-exposure prophylaxis or PrEP in 2012 changed the prevention landscape for HIV. PrEP is a daily oral medication that can be used to help a person who does not have HIV infection from contracting it at all.

Grant Ogren was one of the first people in Spokane to be prescribed the medication. Ogren, who served on the board of directors at SAN for a decade, is its executive director.

At the time when Ogren was prescribed PrEP, there was one clinic in the area offering it. In the years since then, however, it’s being prescribed at doctor’s offices all over the state. There are hundreds of clinics and labs contracted statewide to offer PrEP.

Prevention, via education, testing and prescribing PrEP, has become a new focus for advocates and health care providers.

“Now a lot of doctors are prescribing and more people are going to clinics, and more people are getting tested,” Ofgren said.

He said he’s also noticed a shift in conversation in his community, with people being willing to talk more openly about PrEP and the importance of regular HIV testing.

For Breems, talking to patients about PrEP is in line with talking about safe sexual health and practices like using condoms or birth control. PrEP should be a part of that conversation too, she said.

Studies and clinical trial data published in 2016 also found that antiretroviral drugs were so effective at treating HIV, that patients could get down to a point now called “U=U,” which stands for undetectable equals untransmittable.

The data suggest that people who are using the antiretroviral medications with no detectable virus in their bloodstream are not transmitting the virus through sexual activity, Breems said.

“To know sex can be safe when it comes to HIV, it’s changed the nature of conversations and how they’ve experienced their lives with HIV infection,” Breems said.

Going forward, Breems believes prevention through testing and education around safe sex practices like using PrEP will help continue to bend the curve of HIV infections in the country and the world.

From 2008 to 2014, there was an 18% decrease in newly diagnosed HIV infections in the United States, according to the CDC. Lately, however, the number of new cases has plateaued. This is true in Washington as well.

The number of newly diagnosed cases in Washington has remained stable since 2015, according to the Washington Department of Health.

In Washington, by the end of 2019, an estimated 14,000 people were living with HIV. Of that group, 91% are estimated to have access to treatment.

While Breems doesn’t think a cure is around the corner for HIV, getting to a point of no new infections occurring could be possible.

“No new infections could be curative, and we have the ability to cure infections, so it’s a matter of getting people who need it most access to prevention,” she said.

The work continues

SAN will relaunch HIV testing this summer in July. Ogren is getting certified as a phlebotomist soon, and he will be able to conduct HIV testing at the SAN office in the Perry District, an environment more comfortable for some community members.

“There’s so much stigma out there for getting an HIV test, that’s one of the reasons why we’re starting our internal program in July, because it’s different than going to a clinic,” he said.

Even before then, SAN will host a COVID-19 vaccine clinic on June 19 at nYne Bar & Bistro in downtown Spokane but also offer HIV testing at the event as well. They recently held a similar event at The Globe.

SAN did not receive funding in 2016 to do HIV prevention and care work, so many of the clients there began receiving support at the Spokane Regional Health District.

Following the pandemic, however, Ogren and the SAN team see a real need for offering testing and support in the community again.

“Now we’re back with a vengeance,” he said. “This is the first time in this last year since COVID that I can see the huge difference we’re still making and how important it still is that SAN is still here.”

For Briese, the past year has felt similar to back in the early 1980s with the onset of the HIV epidemic.

“Everyone was feeling vulnerable,” Briese said. “In the HIV positive community, we recognized this. … We already lived with this, we know how not to panic and the best way to stay mentally sound.”

Coming out of the pandemic, the larger community could learn from the HIV community, he said, noting how important gathering together and not being isolated while experiencing a chronic disease was to the overall healing process.

“I’ve never been more proud as a human to be around people who make our community well,” Briese said. “That energy continues in the HIV community, and I don’t take that lightly.”