EVERETT — When Marko Liias wanted to learn more about a new drug he heard could prevent HIV, he asked his doctor. But his doctor didn’t know anything about it.
“He needed to go do his own research before he could give me advice on it,” said Liias, a Democratic state senator from Everett.
This was almost a decade ago. The concept of taking a pill to prevent HIV was new. And the pre-exposure prophylaxis pill, known as PrEP, was expensive. Private insurers were not required to cover the costs.
In 2012, the U.S. Food and Drug Administration approved Truvada for use as a daily pill with minimal side effects. It reduces the risk of getting HIV from sex by about 99%, and lowers the risk for those injecting drugs by at least 74%, according to the Centers for Disease Control and Prevention.
Since then, Liias said, “We’ve made some great progress.” Other versions of the drug have been developed. State and federal programs have virtually eliminated cost as a barrier to getting the pill.
“This is a treatment that if you use it, it basically virtually guarantees that you won’t die from AIDS,” Liias said. “We could really end the cycle of HIV infection in our state, in our community, in our country if we could get widespread use of it.”
In 2019, almost 37,000 people in the United States were diagnosed with HIV, and 480 of those cases were in Washington, according to the CDC. In Snohomish County, 34 people were diagnosed with the virus last year, according to the Snohomish Health District.
PrEP has been linked to declining HIV infection rates. The CDC calls it a “key prevention strategy” for ending the HIV epidemic” by 2030 in the United States. But adoption of PrEP among those who could benefit from it has been slow and figures have plateaued in recent years.
Just over one-quarter of the 1.2 million people in the United States at highest risk of HIV — as defined by sexual activity, injection drug use or “continued risk behavior” — were using PrEP in 2021, according to estimates from the CDC.
These figures showed that of over 40,000 people at highest risk in Washington, fewer than 10,000 were on PrEP.
The gap is largely due to stigma, Liias said: “In our society, sexual health-related care is still stigmatized for a lot of people. … You have to essentially admit that you are engaging in risky behaviors in order to qualify for access to PrEP.”
Patients may not feel comfortable disclosing their sexuality to medical staff, especially patients who are not “out” as LGBTQ. Some fear their doctor will judge them or reveal personal details to others.
‘The biggest barrier’
Phylis Muthee, a nurse practitioner who runs Essentia Healthcare clinic in Everett, said her patients are sometimes resistant when Muthee brings up PrEP. Some think of it as a pill for gay people — and not just among patients, but medical workers, too.
“The biggest barrier is stigma,” she said. “I have yet to meet one person who thinks of PrEP as something that is good for people who are heterosexual.”
In 2019, 70% of women and almost 20% of men diagnosed with AIDS in Washington were exposed to the virus through heterosexual contact, according to the online mapping tool AIDSVu, using data compiled by the CDC. Most of the patients Muthee sees have heard of PrEP, but don’t realize they may be at risk of HIV and could benefit from the pill.
In late 2021, the CDC updated its guidelines to recommend “all clinicians” in the United States talk to sexually active patients about PrEP at least once and prescribe it to any patient who asks for it. Dr. Demetre Daskalakis, director of the CDC Division of HIV Prevention, called the update a “seismic shift” in how the drug is offered, according to Medscape Medical News.
“Not assuming anything about a patient is where it needs to start. Asking the question and being prepared for whatever answer you’re getting,” said Lisa Roberts, STD/HIV supervisor for the Snohomish Health District.
Yet getting a prescription can still be a challenge.
“A lot of providers up here are barely catching up with what PrEP is,” said Omar Ramos-Gutierrez, PrEP Navigator for the Everett branch of Lifelong, an AIDS outreach organization that works with the Snohomish Health District.
Ramos-Gutierrez said he’s often surprised that some health care providers seem to have no idea what PrEP is. Ramos-Gutierrez has accompanied patients to medical appointments as an advocate or interpreter. He does not have a medical degree, but health care providers occasionally end up asking him questions about PrEP.
Muthee recently took a course about PrEP on her own time to better serve her patients. Ramos-Gutierrez would like to see consistent training and updates on LGBTQ sexual health for clinicians and front-desk staff.
From the start, minority groups have been hit hardest by the AIDS epidemic in the United States. People of color are no more likely to engage in high-risk behaviors such as unprotected sex or injection drug use, according to the state Department of Health’s Office of Infectious Disease Disparities Report for 2022 report. Yet in 2019, Black people accounted for 20% of people diagnosed with HIV in Washington, but only account for 5% of the total population. Almost 25% of people diagnosed identified as Latino, a group representing about 13% of the population, according to AIDSVu. Compared to white people, PrEP usage is disproportionately lower in those minority groups.
Zandt Bryan, an HIV prevention specialist with the state Department of Health, attributed disparities to systemic factors: lower socioeconomic attainment, lower likelihood of insurance coverage and less familiarity with the complex health care system.
“These are historically excluded and discriminated-against communities,” Bryan said. “We have work to do to help ensure that those communities know about PrEP. It’s a combination of reducing barriers and working through potential information gaps, systemic issues and stigma.”
‘Not a failure of effort or energy or desire’
In his work at Lifelong, Ramos-Gutierrez often visits homeless camps and shelters around in Snohomish County to offer HIV testing and PrEP education — for people the health care system often fails to reach.
In his work with people addicted to drugs, Ramos-Gutierrez has seen first-hand how a lack of trust can be a roadblock in getting people on PrEP.
“Trust is a big thing in this community,” Ramos-Gutierrez said.
At first, he said, “no one would talk to me, no one would get near me, no one would come get tested.” It took months of showing up to the same spaces, getting to know people and listening to their life stories.
Medical providers usually focus on trying to get patients to stop using drugs, he explained, rather than starting with harm reduction tools like PrEP.
Unsheltered people are at increased risk of HIV. Without stable housing, getting and staying on PrEP presents a myriad of challenges, Ramos-Gutierrez said. People living on the street or in temporary housing often don’t have a safe place to store medication. They can struggle with taking a pill every day.
Last year, the FDA approved an injectable form of PrEP for the first time. Given as a single shot every two months, it would eliminate the daily schedule that can be hard for anyone to maintain.
“That would change the game completely,” Ramos-Gutierrez said.
“In general, something you don’t have to do every day, we know patients are more compliant,” said Muthee, the nurse practitioner.
But the injectable version has had a minimal impact on PrEP usage so far. There’s one obvious reason: A single dose is priced at $3,700, not including clinic fees for administering the shot, and most insurance plans don’t cover it. In February, almost 60 members of Congress signed a letter calling on the CDC and the Centers for Medicare and Medicaid Services to require insurance providers to cover the injectable form.
“It’s unobtainable at this point, but hopefully not for forever,” Roberts said.
Increasing PrEP usage will require a combined approach, said Bryan, the HIV specialist from the state Department of Health.
“It’s partially engaging communities and individuals. It’s partially educating providers and working with systemic factors,” he explained.
“With the resources that we have in Washington, I don’t know that we’ll be able to attain the 2030 goals set out by the federal government, but we’re certainly going to try,” Bryan said.
To reach the most at-risk populations, public health agencies will need funding and resources that they “just don’t have,” Sen. Liias said.
“It’s not a failure of effort or energy or desire, but really we just need … to continue to fund this until this preventable, treatable disease is gone,” he said, “We don’t need to have people dying of it in Washington, and until we really focus on getting to those last pockets where it exists and eradicating it, I think we will have failed.”