Kristen Ries moved to Salt Lake City in the early 1980s hoping to set up a medical practice.
By chance, she arrived on the exact day the Centers for Disease Control and Prevention released a report about a new infectious disease mostly affecting gay men.
As the crisis swelled, Ries and her physician assistant, Maggie Snyder, became the only medical providers in the intermountain region accepting patients with HIV and AIDS at time when the cause of the epidemic was still unknown and public fear of needles and blood, of touching anyone who might have the virus and of the gay community in general, was running rampant.
But it wasn’t only gay men who were affected; it was heterosexual men and women, parents and spouses, even children. “Quiet Heroes,” a historical documentary by Utah-based filmmakers Jenny Mackenzie and Jared Ruga, paints a heartrending portrait of sick patients with nowhere to turn, evicted from clinic waiting rooms by staffers who were afraid they could spread the disease or exiled by their families — some of whom refused to visit the hospital even as their children lay dying.
“The film is about two women who were heroic, but certainly don’t see themselves as such,” said Mackenzie. “They just see themselves as people who put one foot in front of other and fought a battle that was right in front of them by providing love, compassion, acceptance, and excellent medical care for all people.”
Through interviews, home videos and a wealth of archival documents, “Quiet Heroes” tells the story of Ries' and Snyder’s tireless fight to save the lives of their patients at a time when most people were turning away in fear.
The film premiered at the 2018 Sundance Film Festival. After the showing, Ries and Snyder joined doctors Adam Spivak and Susan Keeshin, both assistant professors at University of Utah Health specializing in HIV/AIDS prevention and treatment, on a panel sponsored by the Utah Film Commission about the future of HIV treatment in Utah.
“Utah has come a long way since the 1980s,” Ries told the Deseret News.
“One at a time, we have changed people’s attitudes about HIV and AIDS,” Snyder added. “We have helped show people that even if we don’t perhaps agree with a person’s behaviors, that person still deserves respect, kindness and high-quality medical care.”
The University of Utah Infectious Disease Center — known as “Clinic 1A” — now provides the majority of HIV care in Utah, employing eight providers to serve 1,800 patients living with HIV.
Both Ries and Snyder agreed there is still work to do to stamp out a disease for which there remains no vaccine and no cure.
“‘Quiet Heroes tells a beautiful, tragic and human story that is far from over,” said Spivak.
HIV in Utah today
According to the Utah Department of Health, there were 120 new cases of HIV infection in 2015, the most recent year for which data is available.
“Utah isn’t considered to be a high-incidence state, but if you go back to the last year or the year before, the rate of new infections is not going down,” said Spivak. “That needs to change.”
“We’re fairly low,” said Mackenzie Bray, HIV prevention coordinator at the Utah AIDS Foundation. “But that number does not account for estimated numbers of undiagnosed individuals — people who have HIV but have not been tested.”
Indeed, Utah has the lowest rate of HIV testing in the United States, said Spivak. That makes it hard for health officials to know how big the HIV problem in Utah really is.
Stan Penfold, executive director of the Utah AIDS Foundation, said there are several factors that contribute to the failure of Utah’s rate of HIV infection to continue to drop.
The first is what he describes as a generational problem.
“While the overall number of infections has plateaued, we’re seeing more and more people under the age of 25 becoming infected,” he said.
He attributed this to the fact that more than 30 years have passed since the AIDS crisis burst onto the national scene, and youth today have no firsthand memory of the fear that shook the country to its core. In addition, he said, “the highly effective medications developed in the 1990s to treat the virus have created a misconception that there is a cure for HIV.”
“There is a perception with younger adults that HIV is not a big deal, that you can just take some pills and you’ll be fine, ” he explained. “The reality of the harshness and financial expense of being on life-long disease management is hard to translate for people and it doesn’t feel very real.”
Utah’s opioid epidemic is another contributing factor. The CDC identified Carbon County, Beaver County and Emery County among the top 5 percent of counties in the nation at risk for outbreaks of HIV and/or hepatitis C due to intravenous drug use.
Although there is no cure for HIV, its transmission can be blocked by pre-exposure prophylaxis (PrEP). Studies have shown that when taken on a daily basis, an oral medication called Truvada is highly effective at preventing an HIV-negative person from becoming infected through a sexual encounter with an HIV positive partner.
The FDA approved Truvada for reducing the risk of HIV transmission in 2012. But Spivak says that until now, PrEP has not been available to the people who most need it.
That’s because PrEP is extremely expensive, about $10,000 per year. While most health insurance plans cover PrEP, those at highest risk of getting HIV — young men age 18-25 — are also the least likely to have health insurance.
While many LGBT community members are well informed about PrEP, other groups vulnerable to infection — women, IV drug users and young minority group men who have sex with men are often “still in dark” about the existence of prevention or unable to access PrEP services, according to a press release issued by University of Utah Health.
But there is hope in the form of a groundbreaking new endeavor by University of Utah Health. Next month, the center will open a free HIV prevention clinic, only the second such facility in the United States. The clinic will offer PrEP, as well as sexual health and HIV prevention counseling, and sexually transmitted disease testing and treatment.
“There will be no costs to the patient — no bill for the visit, labs, prescriptions, or treatments,” said Spivak. Clinic space will be donated by the University of Utah, and physicians will work on a volunteer basis.
Spivak said two factors make him highly optimistic about the potential success of the clinic: Utah’s HIV epidemic is relatively small, just 100-200 cases per year, and geographically concentrated in Salt Lake County.
“Without spending too much time or energy or resources,” he said, “we should be able to drive down this epidemic.”
On the front lines of the fight
Salt Lake City resident Patrick Rezac, 44, said he’s excited about the opening of the clinic.
Rezac is HIV positive. His seven-year-old daughter is not, due in part to Truvada.
Rezac and his daughter's mother met after he was diagnosed with HIV. When they decided to have a baby together, he began taking Truvada to protect her and their future child from HIV infection.
Taking Truvada in combination with other HIV medication reduced Rezac’s viral load to an “undetectable” level, allowing his daughter and her mother to remain HIV-free.
“I have a daughter who is beautiful and HIV negative,” says Rezac. “People don’t realize that’s even possible.”
Rezac was diagnosed with HIV eleven years ago while living in San Francisco. When he got the news of his diagnosis, he wasn’t surprised. In fact, he said, “I was relieved.”
He said his drug habit had spiraled out of control, and the diagnosis was a wake-up call that “served as a springboard for me to take my recovery seriously.”
After getting his HIV diagnosis, Rezac sought treatment, both for HIV and for substance abuse disorder.
“After I started taking responsibility for my own health, I made it my mission to educate others about the importance of disease prevention,” said Rezac.
After he finished a treatment program at the Maple Mountain Recovery Center in Mapleton, Utah, he founded One Voice Recovery, an organization that helps people with HIV and Hepatitis C as well as those struggling with addiction.
Based in Salt Lake, Rezac and his staff provide services including HIV testing, prevention, and education, syringe exchange, navigation services for people who are HIV positive, and substance abuse recovery coaching.
The organization has also developed a highly effective program of mobile outreach that allows Rezac to get in his car and make contact with high-risk, often stigmatized groups wherever they may be — in their homes, apartments, motel rooms, at homeless encampments, or on the street.
“Unexpectedly, getting HIV changed my life for the better,” said Rezac. “It allowed me to find my life’s purpose: teaching others how to keep themselves and their communities safe and healthy.”
A new era
At the end of the panel discussion, Ries and Snyder recalled bittersweet memories of the past.
“There was so much stigma,” Ries recalls. “Most of my patients ages 27 to 60 … they left and said, you know you’re really too busy for us — which was never true, but it was their polite way of saying they were uncomfortable.”
With a chuckle, Ries shares the derisive nicknames others in the medical community used to describe their practice: "the AIDS and the aged” and "the gays and the grays.”
Ries remembers the unique atmosphere of her clinic’s waiting room, in which “gay guys helped old ladies with their knitting while they shared funeral plans and their hopes for the afterlife.”
“It was a special time, it was a sad time,” says Ries. “I’m glad it’s not that way anymore.”
Correction: A previous version of this story incorrectly stated that the mother of Patrick Rezac's daughter took PrEP when they decided to have a child. Rather, Rezac was taking Truvada in combination with other HIV medication, which protected both mother and daughter from HIV.