MEXICO CITY — When Mahesh Swaminathan, MD, has to deliver an HIV diagnosis to a patient, he does not know exactly what will happen, but he usually expects "a serious freak out," if only briefly.
"You have to help patients deal with negative emotions now, in the moment," said Swaminathan, who is currently country director in Nigeria for the Centers for Disease Control and Prevention (CDC).
That can be hard to do because at the appointment, "I don't know the patient's whole life story," he told Medscape Medical News. "It's a snapshot in time."
And with the use of genetic testing to trace the path of HIV through communities — which many experts believe will be central to ending the epidemic — the conversation between provider and a newly diagnosed patient is getting more complicated.
"It's not just, 'You're infected. I'm going to get you on therapy'." Now you have to explain the complexities of the tracing process, said Anthony Fauci, MD, from the National Institute of Allergy and Infectious Diseases at the National Institutes of Health.
And understanding that their infection will be linked to someone else "raises big red flags for people," Fauci explained here at the International AIDS Society 2019 Conference on HIV Science.
In some states, it has been the practice to interview the partners of people newly diagnosed with HIV so that a map depicting the spread of an HIV outbreak can be constructed.
But in recent years, the CDC has been using data from HIV blood tests to map how a specific strain of HIV mutates with each new transmission, which can identify people who might not be captured with interviews. This approach was used to follow the spread of the 2015 HIV outbreak in Indiana (J Infect Dis. 2017;216:1053-1062).
A program to test people for HIV using a so-called recency test — which can differentiate a newly acquired virus from a longer-term virus — is being used by countries that receive assistance from the President's Emergency Plan For AIDS Relief (PEPFAR).
"The idea is the same," said Greg Millett, MPH, from the Foundation for AIDS Research (AmFAR). Both are "part of an arsenal of tools to really home in on where the epidemic is taking place, to make sure that investment is going to where there are emerging infections."
Recency, Stigma, and the Hardly Reached
The problem is that people think tracing the mutation of a particular HIV strain through a community can identify who transmitted what virus to whom, but that is not the case. The tests are not as specific as people think.
"None of these tests give you an indication of directionality," Millett said. "But that doesn't keep people from going there. Even with the best effort at counseling, who they think might have infected them might be wrong."
This approach — identifying people who might need care or be candidates for HIV pre-exposure prophylaxis (PrEP) — can make people uncomfortable.
In focus groups of people living with HIV conducted by the International Treatment Preparedness Coalition, the number one concern people had with recency testing was related to negative consequences: fear of rejection by a partner once the diagnosis is revealed; fear of the relationship changing; and fear of gender-based violence.
Add to that concern about civil rights as people with HIV are increasingly policed, Millett said during the session.
In the United States, the people who could benefit most from care and prevention — black Americans, transgender people, young gay and bisexual Latino and black men — are commonly from marginalized communities.
And "those marginalized communities are facing unprecedented attacks in terms of civil liberties by the current administration," he said. "All this testing and tracing needs to be done in that context and with that understanding."
State and local governments have been known to prosecute people for not disclosing HIV status. Activists in the United States have expressed concern about how phylogenic data will be used.
So far, though, it has not been used as part of any criminal prosecution, Millett said.
"We need to make sure, as we move forward, that patients understand that there's no way to determine who infected whom with any of these tests, and particularly phylogenic testing," he said. In addition, the language associated with these tests needs to be specific about how results should and should not be used.
"For instance, they should not be used in criminal prosecutions. They should not be used within the criminal justice system. And if they are used, the test can't be the final determining factor of whether someone should be prosecuted," he emphasized.
Building Clinic–Community Bonds
Meeting the patient where he or she is and seeing the diagnosis from the patient's perspective is a key tenant of patient-centered care.
Or, as Rachel Baggaley, MD, from the World Health Organization, put it, "We are operating under two principles: do no harm, and listen to communities."
Listening to communities is a key part of the CDC's Ending the HIV Epidemic initiative, said Fauci. That does not mean just marginalized communities, like transgender people and young men who have sex with men, but also the 48 counties plus the District of Columbia and Puerto Rico that accounted for more than half of HIV diagnoses in the United States in 2016.
Although listening is key, it is sometimes easier said than done.
Earlier this year, the Health Resources and Services Administration (HRSA) announced a plan to deploy public health experts — called elimination teams — to communities in which phylogenic testing identified HIV outbreaks. This immediately raised alarms among people with HIV.
One advocate guessed that elimination teams would be about "quarantining those they deemed a threat to public health. Or lock us all up." Others linked the idea of elimination teams to efforts being made to deny Green Cards to immigrants who use social services.
Soon after, HRSA removed the term.
Genetic tracing can reduce HIV infections, but only if those administering the tests and applying their lessons really understand "the realities that many of these communities live with on a day-to-day basis," said Millett.
For the past few years, Leslie Williams, PhD, from the University of Illinois at Chicago, and Samuel Friedman, PhD, from the National Development Research Institutes, have been trying to figure out how to easily identify people who have newly acquired HIV.
Laying the Groundwork
In a cohort made up mostly of men of color who have sex with men, Williams, Friedman, and their colleagues found that when the idea of partner notification and phylogenic testing was introduced by researchers as a way to find others in the community who might be infected with HIV, it did not cause distress.
Instead, participants reported "an increase in social support," Williams reported (AIDS Behav. 2019;23:15-20).
The same was true, in general, in groups of people who injected drugs and men who have sex with men in Greece and Ukraine.
But that finding does not mean that concerns are overstated by advocates, said Williams. Instead, she and her team attribute their success to the deliberate way they introduced phylogenic tracing.
In Chicago, for example, the trial started with a long-standing and positive relationship between groups of people with HIV and researchers.
Advocacy groups were then subcontracted to conduct outreach to community members. In some groups, they even held conversations between community organizations and provider groups that amounted to negotiations. They were about "how each of us make the other's job harder," Friedman explained.
Then, at every intake session in Chicago, Greece, and Ukraine, a diagram was used to describe to participants how HIV moves through a community.
"That sort of takes the emphasis away from the individual, and the blame, and just focuses on the fact that this is an epidemic that moves through communities at a rapid pace," said Williams. The patient actually becomes a protector of the community.
"We don't use stigmatizing language like 'vectors of disease'," Friedman said. If you have a high viral load because you recently acquired HIV and you therefore are more likely to transmit the virus. It's not a personal failing. You're just "at that stage. It's going to pass."
Provider health systems could enact a similar plan.
"When you're implementing these interventions in a new context, you need to do that qualitative work," Williams said. That work "will tell us what egg shells we are walking on here, and how we can avoid participant harm before we implement these things."
But there is only so much an individual provider can do, she added. To change the culture of a clinic so it is focused on marginalized populations, you have to look at the system.
"Instead of an individual provider bearing the burden of what to do" with a patient, "I think change can only happen at the group level when it comes to stigma, because stigma is a kind of norm. So providers as a whole need to work together to reduce fears and engage communities as a whole," she pointed out.
Swaminathan, Fauci, Millett, Baggaley, Williams, and Friedman have disclosed no relevant financial relationships.
International AIDS Society (IAS) 2019 Conference on HIV Science: Abstract SUSA05. Presented July 21, 2019.
Medscape Medical News © 2019
Cite this: Physician Counseling After HIV Diagnosis Could Stem Epidemic - Medscape - Jul 22, 2019.