HIV Care Teams Shy Away From Uncomfortable Conversations

Heather Boerner

September 10, 2019

WASHINGTON, DC — HIV treatment that leads to viral suppression for at least 6 months is 100% effective in preventing the transmission of HIV, even in the absence of condoms or HIV prevention drugs, according to the Centers for Disease Control and Prevention. But not all care providers tell their patients that.

A survey in the Midwest showed that 22% of HIV physicians still don't feel comfortable explaining to patients the science behind what is known in the community as U=U, or undetectable equals untransmittable.

And that number is even higher among the physician assistants, nurse practitioners, advanced practice nurses, and traditional registered nurses who serve people living with HIV, said Emily Petran, MPH, from the Minnesota site of the Midwest AIDS Training and Education Center (MATEC) in Minneapolis.

The survey — which was more of a needs assessment than a scientific survey — points to the need for education so that people with HIV have all the information they need to care for themselves and their partners, she said here at the United States Conference on AIDS 2019.

"U=U is a big part" of plans to end the HIV epidemic in a lot of states, she explained.

But "as U=U becomes more mainstream, we need to do a lot of needs assessments to determine where providers are," she told Medscape Medical News. "We can't effectively educate providers if we don't know that."

A Passion Project

Mariah Wilberg, coordinator of the Statewide HIV Strategy and Services in Minnesota, started the project that would turn into the survey as a homework assignment for a class toward her public administration degree. She was hearing anecdotal accounts from people with HIV that providers were not informing them of the effectiveness of viral suppression alone for prevention, and wanted to try to quantify that.

Wilberg, who has been living with HIV since 2006, knew this from personal experience. When she found out that durably suppressing her virus could prevent her from passing the virus on, it had a life-changing effect on her.

Still, her provider never mentioned it.

"As public health providers, it's our duty to provide all evidence-based information to prevent HIV," she said. Instead, "people would look me in the eye and tell me the reasons we should withhold this information. It's unacceptable."

She compiled a list of questions she would ask infectious disease providers if given a chance. And that chance appeared when Petran came on board.

"We figured, MATEC had the emails of providers and I had the questions — let's do this," said Wilberg.

Soon, it went from a survey of providers in Minnesota and Iowa — the region MATEC serves — to include providers in Illinois, Indiana, Kansas, Michigan, Missouri, Ohio, and Nebraska. The invitation to complete the survey was emailed out in February, and analysis of the results began in May.

Geographic and Specialist Variability

Although the survey was not a validated instrument meant for publication in the scientific literature, the results did provide a basic understanding of the level of comfort HIV care providers in the Midwest have when discussing U=U.

Respondents were asked how often they discussed viral suppression as a means of preventing HIV transmission, and how much they agreed or disagreed with the following statement: "I feel comfortable counseling a client with a durably undetectable viral load about viral HIV suppression being sufficient for sexual HIV prevention in the absence of condoms or pre-exposure prophylaxis (PrEP)."

Of the 347 providers who completed the survey, 38% were allied health professionals, such as case managers, outreach workers, or prevention specialists; 20% were physicians; 16% were nurse practitioners; 14% were registered nurses; and 4% were physician assistants. Only 40% of responders were prescribers, but 62% worked in clinical care, such as psychiatry or physical therapy. One-third of respondents, 33%, had been in the field for more than 15 years, and 41% had been in the field for 5 years or less.

The survey results varied widely, depending on type of provider and state.

Table 1. Frequency of Discussions With Patients About Viral Suppression and the Prevention of HIV Transmission and Comfort Communicating the Science of U=U
Provider Discussed U=U More Than Half the Time, % Comfort With U=U science, %
Physician 80 77
Physician assistant 80 40
Nurse practitioner 71 64
Registered nurse 71 43
Other advanced practice nurses 75 50
PharmD 79 63
Allied health professional 84 53

Some of the results weren't surprising. Providers with more HIV patients were more likely to talk about U=U and were more comfortable conveying the science showing that condoms and PrEP aren't necessary to prevent transmission if the patient has a suppressed viral load.

Other results were eye-opening, said Petran. For instance, one provider said: "We should be promoting abstinence to prevent HIV transmission."

"There's a lot of work that needs to be done," Petran told Medscape Medical News. But, she added, she "appreciated that that person shared that. Otherwise we would not have known that that ideology still exists."

The other surprise was that case managers, outreach workers, and other allied health professionals were most likely to discuss viral suppression as an HIV prevention method but least comfortable with the science (MMWR Weekly. 2019;68:267-272).

"This really highlighted the questions we need to be asking," Wilberg said. Are providers telling patients "that an undetectable viral load prevents transmission, but your partner still needs to be on PrEP? What kinds of conversation are happening at the clinic?"

State by State

When the researchers looked at the responses by state, other trends appeared. Although the numbers were too small to draw any conclusions, the results indicate that there is more work to be done in her home state, said Wilberg.

"I was disappointed to see that in Minnesota only 64% of respondents said that they discussed this with their patients," she said. "Disappointed, but not surprised."

Table 2. Survey Results by State
State Respondents, % Discussed U=U More Than Half the Time, % Comfort With U=U Science, %
Iowa 5 81 81
Illinois 29 82 59
Indiana 22 83 49
Kansas 5 67 39
Michigan 5 82 65
Minnesota 15 64 55
Missouri 4 85 69
Nebraska 3 82 91
Ohio 5 100 76
Wisconsin 7 65 48

But there is good news as well. Providers in Iowa and Nebraska are very comfortable discussing U=U. The states with the furthest to go, at least according to this survey, are Kansas and Minnesota.

One explanation for the discrepancy between states might be explained by another survey question: Are you concerned about legal ramifications of discussing viral suppression alone as a means of HIV prevention?

Comfort discussing the prevention power of viral suppression alone was lower in states with HIV criminalization laws than in those without. More than half the providers in Indiana expressed discomfort with discussing viral suppression as a sole means of prevention, and 43% were concerned about the legal ramifications of discussing U=U. There is an active effort underway in the state to change laws that allow prosecution for the nondisclosure of HIV status, regardless of actual transmission.

Iowa changed its law in 2014.

Validating and Repeating

The presentation of the survey results seemed to energize clinicians and outreach workers in the audience, some of whom are living with HIV themselves. The fact that it wasn't a scientifically vetted or representative sample led some in the audience to suggest that the survey be expanded and validated, and perhaps that U=U be asked about as a standalone question.

"Perhaps you'd get a different response if you didn't ask the question as a combination," said one audience member. "I talk about PrEP and condoms and viral suppression vs forcing a choice of one alone."

Another suggested adding qualitative questions about the providers' own experiences of "trauma and stigma" around HIV, especially for providers who treated people through the worst of the epidemic.

Others pointed out that U=U gets muddied by the various definitions of what undetectable really is: Is it fewer than 200 copies/mL, or is it 50 copies/mL? This, one audience member pointed out, can derail the conversation.

A Plea for Patience

Tammy Moran, PA, a physician assistant in Rock Falls, Illinois, said she was sad to see that comfort discussing U=U is so low for physician assistants. But, she reported, the only reason she learned about HIV prevention at all was because she decided to take a free lunch offered at a conference with a lecture. If she hadn't been so hungry, she still might not know.

"We have a lot on our plates," she said. "We just need to be patient and educate."

This resonated with an outreach worker who is living with HIV. He recalled a time when members of his own community-based group were convinced that they shouldn't offer rapid HIV tests because the clients "wouldn't be ready" for the results.

"That's our own group," he said. "I hear how frustrated people are all the time. But I think we need to be patient with our colleagues. While it frustrates me as someone living with HIV, it took time for me to feel the way I feel now."

Jeremy Sandberg, MLA, from the Penn State College of Education in University Park, leads the expanded HIV testing initiative in Pennsylvania and develops pamphlets and education programs on how to prevent the transmission of HIV. For him, U=U "speaks to the heart portion of me."

"But the scientific portion, it just destroys me," he said. There must be a risk, but "it might be 100 digits past the decimal."

However, he said, he has not heard of a case of HIV transmission from anyone with a viral load below 600 copies/mL.

Before saying U=U, "I use more qualifiers than you can imagine," Sandberg said. But, he added, "I'm a convert."

Petran, Wilberg, and Moran have disclosed no relevant financial relationships.

United States Conference on AIDS (USCA) 2019. Presented September 7, 2019.



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