WASHINGTON, DC — Like a lot of clinicians would, emergency department physicians in Arizona looked at this 87-year-old woman and thought, she doesn't need an HIV test.
"Her husband had been her only sex partner," said John Sapero, office chief of the Arizona Department of Health HIV Prevention Program. But Sapero's office had just implemented an opt-out HIV testing program in their emergency department, meaning that they were compelled to do a test unless she refused.
She did not.
The woman's test was not only positive for HIV, but she was diagnosed with AIDS — something that occurs only after a person has been living with HIV without treatment for years.
It turned out that the woman's husband had been to several emergency departments in the area 3 years before for various complaints before he died. Those were likely related to an underlying, untreated HIV infection, Sapero surmised.
"You'd never walk up to that woman and think about" giving her an HIV test, Sapero said here at the United States Conference on AIDS 2019. "The fact that you could screen her for that, regardless of her risk factors, and immediately link her to care and set her on her way to wellness, that's important."
HIV testing can seem like a remote, even unnecessary addition to a busy clinical visit. However, this woman's diagnosis illustrates that HIV testing is necessary for everyone, said Sapero. This case "set the tone for ER docs to be more supportive of the testing project."
It will be essential, as the United States moves to end the epidemic, to expand HIV testing services, he said. Health departments are trying to make taking a sexual history easier on non-HIV providers and to seamlessly integrate testing into their practices, experts reported here at the conference. When that is not possible, they are striving to remove the burden on physicians and to offer people at-home HIV tests.
"You Don't Want an HIV Test, Right?"
The Centers for Disease Control and Prevention (CDC) recommends that every person 13 to 64 years of age be tested for HIV. However, in 2016, only 38.9% of Americans reported ever taking an HIV test (MMWR Morb Mortal Wkly Rep. 2019;68:267-272).
The testing rate was higher in the 47 counties and two cities — San Juan, Puerto Rico and Washington, DC — targeted by the Ending the HIV Epidemic plan, at 46.9%, 2016/17data show, but was lower in the plan's seven rural states, at 35.5% (MMWR Morb Mortal Wkly Rep. 2019;68:561-567).
And for people at elevated risk for HIV — who might benefit most from regular testing and access to the HIV prevention pill Truvada — the 2016/17 data show that the rates are even lower: 29.2% reported being tested in the previous year.
Those data also show that only 26.2% reported being tested in the previous year in the seven rural states covered in the plan. And just 34.3% of people living in the 47 counties and two cities had been tested in the previous year.
This lack of testing is the result, in part, of health systems not following the law, said Stephanie Hubbard, program manager at the New York City Department of Health and Mental Hygiene.
New York State requires verbal opt-out from patients at outpatient clinics, she told Medscape Medical News. But, she said, according to anecdotal accounts and reports from community-based organizations that work with clinics, some physicians get patients to opt out by asking: "You don't want an HIV test, right?"
"It's super frustrating," she said. That is among the "biggest push back" they get.
When the law was changed in Arizona so that HIV testing was done unless the patient opted out, 78% went ahead with the test, at least in an emergency room, Sapero told Medscape Medical News. But if you ask people to opt in to an HIV test, the same proportion declines testing.
Ending the HIV Epidemic, One Test at a Time
When the Ending the HIV Epidemic initiative kicks off in 2020, getting tests to people who might not seem likely to be living with HIV will be one of the four pillars of the program.
CDC data show that 33.6% of HIV transmissions in 2016 were from people with undiagnosed chronic HIV (MMWR Morb Mortal Wkly Rep. 2019;68:267-272). In contrast, there were no transmissions from people who had been diagnosed, were on effective treatment, and had suppressed viral loads.
"Declining rates of HIV mean it's harder to identify people who need to be tested," Hubbard said. "We have to be innovative in the ways we reach people."
To get to that level of HIV testing, medical systems need to make testing "the fabric of these institutions," she added. One way to do that is to streamline the sexual history physicians must take to assess whether someone needs a test.
To help providers with this thorny conversation, Hubbard helped design a framework for primary care providers designed to ease communication and make providers more comfortable testing their patients for HIV.
The framework offers a quick list of sexual history questions to get healthcare providers the information they need from patients in just a few minutes.
It starts with a simple statement: "I talk to all my patients about sexual health because it's such an important part of overall health." That lets the patient know that the provider is there to answer any questions or concerns about sexual health, Hubbard explained.
Then it offers a way to encourage testing in opt-out settings, which is helpful for all providers, said Sapero. The provider states that all his or her patients are tested for HIV and other sexually transmitted infections (STIs), and then asks, "Do you have any concerns about that?"
This is followed with open-ended questions that replace a litany of specific questions about such things as the number of sexual partners a person has had and the frequency of condom use. Providers can ask, "What would you say are your biggest sexual health questions or concerns?" and "How is your current sex life similar or different from what you think of as your ideal sex life?"
Suggested follow-up questions — used to de-emphasize the exact number of sexual partners a person has and instead understand how people protect themselves from HIV or STIs — include, "What would help you take even better care of your sexual health?" This positive approach can motivate patients to move toward healthy sexual behaviors and engagement in care, the framework suggests.
Information gleaned from the patient can then suggest what tests are warranted and can open the door to discussions about HIV prevention, pre-exposure prophylaxis (PrEP), and contraception.
Or you can simply rely on the CDC guidelines, which take sex out of the discussion entirely and might work better in environments in which discussions about sexual health are stigmatized or challenging, Sapero said. And if a person asks for a test, give it whether or not you think it's necessary, he added.
"Sex and sexuality are difficult things to talk about, especially when a client is coming in for something completely unrelated," he told Medscape Medical News. "Even if you're not asking people what their risk for HIV or for contracting an STI is, you can state that this is a recommendation from the CDC," and explain that it is the standard of care.
Meet the Mystery Box
Another way to get tests to those who want them is to take the burden of HIV testing off the shoulders of providers entirely. In Arizona and Virginia, for example, health departments are sending at-home self-test kits to people who request one. And it's been successful.
When the pilot program was launched in Arizona, staff prepared themselves to address any issues that arose from a person confronting a diagnosis alone, Sapero reported.
The self-test box included the phone number of a staff member who volunteered to be on call 24 hours a day. And a van was ready to drive anywhere in Arizona in case a person wanted the self-test kit but was scared to take the test alone.
But not a single person wanted a health official with them when they tested. They preferred to receive the news in their own homes and with partners, family, or friends nearby. This was, it turned out, "the way they wanted to be served."
For the pilot program, Sapero bought 500 self-test kits and placed an ad on Grindr, saying that the department would mail a kit to any state resident who wanted one.
"We thought they would last us 6 months," he said. "Grindr placed our ad a day early, so on the day we thought we were launching, we already had 60 orders." Seven weeks later, they'd gone through 477 kits and closed the pilot.
"I'm not sure exactly how long it takes to assemble 477 boxes, but it takes a long time," Sapero said. "My fingertips will never be the same. I got so many paper cuts and box-cutter wounds."
In 2018, the state contracted self-testing out to a community-based group, renamed it the Mystery Box, and launched a full-scale program. When consumers receive the kit, they find a box that says things like, "Let's solve this mystery," and "The only way to flunk this test is not to take it."
Today, 1045 kits have been sent to Arizona residents. The six people who have reported to state health clinics to have their positive self-test confirmed are all now receiving medical care, Sapero said.
The kits are getting to groups that have been hard to reach, including women 18 to 24 years of age and men 25 to 36 years. In addition, 53% of the requests have been from Hispanic people, 366 people reported that they had never been tested before, and another 745 had not been tested for at least a year.
"Given what I think is a relatively moderate effort to help folks get an HIV test in the way they are comfortable with, we are having a connection with folks we never had connection with before," he said. "Left to their own devices, people do the right thing in coming to get confirmatory testing and coming to get care."
Sapero said he is now thinking about allowing people to receive a self-test if they haven't been tested in the previous 3 months, instead of 13 months. And he is considering allowing physicians to offer the home tests.
"I think we need some sort of marketing to providers to say this is an option for your patient, even if you're not talking to them," he said. Or maybe we could have "a poster that says, scan this bar code and you will get a test."
Sapero and Hubbard reported no relevant financial relationships.
United States Conference on AIDS (USCA) 2019. Presented September 6, 2019.
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Cite this: 87 Years Old, One Sex Partner, Diagnosed With AIDS - Medscape - Sep 11, 2019.
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