What Happens When You Test Everyone In The ER For HIV?
More than 1.2 million people in the United States are living with HIV — and one in eight of them don’t know they have the infection, according to the Department of Health and Human Services.
Here in the Phoenix area, one hospital is trying to find those people, diagnose them — and get them into treatment.
Maricopa Integrated Health Services has been the home of TESTAZ, a program that brings routine testing for HIV into their Emergency Department, since 2011.
The program, which is funded by the Centers for Disease Control and Prevention (CDC), is the only one like it in the state. And it means that every patient who gets their blood drawn in the emergency department is tested for HIV, unless they opt out.
Opt-in, targeted screening programs are more common for HIV. Under a targeted screening program, providers assess a patient’s risk-factors, like age, race and sexual history, and then test those who they think are more likely to have contracted the disease.
But, at Maricopa Medical Center, they’re testing everyone, and they’re finding people who are HIV positive who might never have known otherwise.
“Historically, public health and emergency medicine are not seen as something that go together,” according to Dr. Kara Geren, an attending physician at Maricopa Integrated Health Systems and the physician lead of the TESTAZ program.
She said some emergency departments have special teams that seek out patients to test for HIV.
“So, it’s basically an additional person and it’s a system outside of the normal emergency department flow,” Geren said.
But, in their emergency department, they knew they needed to make testing a seamless part of the flow. So, in triage, they tell patients that, they test all patients for HIV, unless they opt out, according to CDC guidelines.
The test doesn’t cost you anything extra, it’s covered by most insurance companies, and, if you don’t have insurance, that’s what the CDC’s grant covers, according to program coordinator and social worker Amy Edmonds.
And, she said, testing everyone helps remove the stigma surrounding HIV and AIDS. “We’re not judging them, we’re not saying, ‘You look like you might be at risk for HIV,’" Edmonds said. "We made it easy so we don’t have to ask all those risk questions in triage."
Since 2011, they’ve tested about 40,000 patients, according to Edmonds. That might not seem like a lot, she said, “but, that’s 150 people in the last five years who did not know they were positive and now are linked to care and are aware of it and are able to take safe-sex practices and notify their partners.”
And, they’re diagnosing a surprising number of patients early, when they’re most infectious.
“When you’re in the acute infection, you’re most likely to be able to transmit it to another person,” Dr. Geren said. “And, if you get into care earlier during the acute infection, not only can you stop the transmission but also studies have shown that long term, you’ll do better.”
Almost 20 percent of their new diagnoses at TESTAZ have been acute infections.
Edmonds said one of the biggest myths surrounding HIV today is that it’s no longer around.
“Because it’s not the big billboards, it’s not watching Rock Hudson and everybody who’s passing away from it, because people are living with HIV,” she said.
But, through TESTAZ, they’re getting three new cases every month, “so people are still getting infected,” Edmonds said.
And, Geren said, it affects everyone.
“There’s no socioeconomic, ethnicity, gender barriers,” she said. “It used to be a disease of men that had sex with men and that is not true at all any longer. And hasn’t been for quite a while.”
According to the Department of Health and Human Services, about one in four new HIV infections is among people as young as 13 years old. And most of them don’t know they’re infected.
“We’ve had a lot of young people who have been diagnosed recently and it is quite a shock to them,” Edmonds said.
As a social worker, she is there when every patient is given their positive diagnoses in the Emergency Department, to make sure they know they can live with the disease, and to make sure they’re connected to care.
She said there are lots of barriers to care when it comes to treating HIV — especially for people who don’t get regular, preventative health care.
“Mental health, substance use, homelessness,” she said. “A lot of things that we see in the emergency department here are the biggest things that prevent people from care.”
Once they’re diagnosed, keeping patients actively involved in care is another challenge. According to the CDC, 87 percent of HIV-positive people in the country have been diagnosed. But, less than 40 percent are engaged in and have retained HIV care.
And, to Edmonds, each time they find a new person who tests positive, it’s an opportunity.
“Don’t look at the bad side, like, it’s sad that we found someone, yes, it is sad. But, go to the next step of now they know, now they’re in care and now they can do something about it,” she said. “And I know that we’re in a day and age right now where, really, if you know your status, nobody should die of HIV. If you take your meds, you should live a healthy life.”
Edmonds also works as a social worker at the Infectious Disease Clinic at Phoenix Children’s Hospital. They started treating HIV in infants and children in the 1990s. Back then, a lot of infants were contracting the infection from their mothers at birth.
But, that all changed when providers began testing pregnant women for HIV, and researchers found a treatment plan that has nearly solved the problem, according to Dr. Janice Piatt, medical director of Bill Holt Pediatric Infectious Disease Clinic at Phoenix Children’s Hospital.
“If we do all the right things during pregnancy, we identify the mom is infected, and we can get her on treatment and then do all the right things around labor and delivery, and then help the baby afterwards, we can prevent 98 percent of infections, or more,” Piatt said.
According to Piatt, they used to see up to 1,000 babies born HIV positive a year and, now, they’re seeing just 50 or 100 a year.
And, because of that decline, Piatt said many pediatric HIV clinics around the country are seeing their number of patients decline.
“Those clinics, their patients are aging out, and they’re not getting a lot of new ones, but that isn’t happening here yet,” she said. “I’ve been waiting for it to happen!”
It’s not happening at Phoenix Children’s Hospital for a few reasons, according to Piatt.
For one, there’s a large refugee population in the Valley and they’re still seeing higher rates of infection.
“We see children from Africa, from Asia, from Ukraine,” Piatt said. “So we’ve had, I would say, 35 to 45 percent of our patients now are refugee children.”
And, now, they’re seeing a number of teenagers who are contracting the disease.
When it comes to age groups, Piatt said, young people aged 15 to 25 have the highest risk of contracting HIV.
And, it’s definitely a generational issue, according to Jeremy Bright, marketing and community outreach manager for the Southwest Center for HIV/AIDS. He said young people today don’t have a frame of reference for the epidemic that HIV and AIDS was in the 1980s and '90s.
“There’s an older generation saying, ‘What are you doing?’ And, ‘Why are you being so reckless?’” he said. “Where this younger generation’s saying, ‘I didn’t really grow up with that, I didn’t understand that, and that’s not where it is today.’”
The Southwest Center conducts outreach about HIV to young people in the Valley.
Bright said, years ago, when someone was diagnosed with HIV, the question used to be ‘how long do I have to live?’ Now, he said, the question is more like, ‘How do I date?’
“So, someone who … saw 20 of their friends die in the '80s around them, you know, has a very, very deep connection to that,” Bright said. “And so, if they see the youth not understanding where they’re coming from in their approach to HIV, then that’s where you start to clash.”
The Southwest Center runs a few programs that aim to educate at-risk populations about HIV, and they do regular HIV testing with several groups that work with those populations.
The younger generation is aware of HIV, but often doesn’t want to talk about it, Bright said. And that adds to the problem that many young people are living with HIV and don’t know it.
“So, that person who’s living with HIV and doesn’t know it, one, it could develop into full-blown AIDS,” Bright said. “Or, two, their viral load is so much higher without treatment, that their ability to spread it to someone else is much, much higher.”
Dr. Piatt with Phoenix Children’s Hospital said the first thing that has to be done to combat the spread of the virus among young people is testing.
“I think we’re not doing a very good job screening our youth and I think that’s where we need to do a lot of work now,” Piatt said.
She said she wants to start doing routine, opt-out testing for HIV, much like TESTAZ does at Maricopa Medical Center. And that will take a lot of education, she said.
“There’s a lot of stigma with HIV and I think, to screen everybody, you have to do some work to make that acceptable to people. And to tell a family that’s coming in here for a pediatric visit or an adolescent visit that we’re screening everybody, we have to do some education,” she said. “We had to that for pregnant women. We did a lot of work, it took about 12 years here to really get that going and so we have to overcome that.”