For the first time since its inception in 2010, the National HIV/AIDS Strategy Implementation Plan (NHAS) 2022-2025 formally recognizes that quality of life indicators — including mental health, stable housing, socioeconomic challenges, and food security — are as important to HIV outcomes as viral loads and CD4+ cell counts.
This past February, the Office of National AIDS Policy (ONAP) convened a subgroup to develop an NHAS indicator focused solely on quality of life for people living with HIV. Through the participation of stakeholder groups such as the Positive Women’s Network (PWN), the Quality of Life Workgroup members landed on a multidimensional concept, one that integrates key physical, mental/emotional, social, and structural domains that affect HIV outcomes.
The inclusion of these indicators may mark a turning point in efforts to end the HIV/AIDS epidemic, especially for groups that have long been disproportionately affected by HIV and are most at risk for acquiring infections, such as Black and Hispanic/Latina women.
Carl Schmid
“There are so many other things that influence HIV in someone living with HIV, who are at risk for HIV,” Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, told Medscape Medical News. “So much more is the lived experience, the social determinants of health, and all the things that are going on in people’s lives.”
A former co-chair of the Presidential Advisory Council on HIV/AIDS (PACHA) and current PACHA member, Schmid agreed that medications, testing, viral suppression, and prevention are all critical. But some of the factors that help people to stay on medication and remain virally suppressed or HIV negative have often been overlooked or discounted.
Venita Ray
“Black women sit at the intersection of racial and gender inequalities, and both of those things make us vulnerable for acquiring HIV,” Venita Ray, co-executive director of PWN, told Medscape Medical News.
“Everything in our life is about two numbers — our viral load and our CD4 counts — most don’t see us as a whole person. For the federal government through our advocacy to finally acknowledge quality of life, it humanizes us,” she said.
No Silver Bullets
Recent CDC estimates suggest that US women (both those assigned female at birth and transgender persons) account for 18% of all new HIV diagnoses. Although overall rates have declined in recent years, Black women continue to be disproportionately affected relative to their White peers through disparities in HIV incidence and prevalence, in linkage and retention in care, as well as in overall use of and adherence to preexposure prophylaxis (PrEP).
PrEP national-, state-, and county-level data released by AIDSVu in late July demonstrate substantial inequities in PrEP use.
In 2021, Black people represented only 14% of PrEP users and 42% of persons newly diagnosed with HIV (vs 65% and 25%, respectively, among White persons). Among all PrEP users, only 8% were female. The US South was especially affected; the ratio of new PrEP users to new diagnoses was 3 to 1 (vs 20 to 1 among White peers).
Notably, Black people are more likely to live in the US South — areas where Medicaid expansion has been minimal and public PrEP drug assistance programs are uncommon, according to AIDSVu principal scientist and Emory University Rollins School of Public Health epidemiologist Patrick Sullivan, DVM, PhD. In addition, a large portion of the population lives in rural areas, which limits easy access to providers. Other barriers to care ― most notably, experienced or anticipated stigma and copay requirements ― are also pervasive.
Dr Adaora Adimora
“For a long time, at least in certain parts of society, there was a sort of idea that there would be a silver bullet to get us out the HIV epidemic,” explained Adaora Adimora, MD, MPH, Sarah Graham Kenan Distinguished Professor of Medicine and professor of epidemiology at the University of North Carolina at Chapel Hill.
Adimora is lead author of a review published March 2021 in The Lancet, the findings of which underscored the extent to which HIV suppression among women varies by region as well as by race. These distinctions were also found to directly reflect the interplay between access to care and social and economic forces, as well as the adequacy of public health efforts and resources.
“All the evidence today indicates that we’re not going to get out of the HIV epidemic without doing something about these major economic and social problems,” Adimora said.
Attempting to Move the Equity Envelope
The NHAS focus on quality of life is divided into six key areas:
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Setting a minimum standard for quality of life for people living with HIV (including employment, education, housing, benefits, and nutrition)
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Improving the care continuum by providing access to culturally relative, gender-affirmative sexual and reproductive healthcare, mental health services/interventions for intimate partner violence and abuse, and affordable healthcare
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Supporting the repeal of HIV criminalization
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Accurately incorporating metrics/measures of stigma
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Requiring that all HIV-related service materials be translated into primary jurisdiction languages
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Incorporating quality-of-life surveys into federally funded clinical/supportive services settings to improve care linkage and support
However well intended, it remains to be seen whether quality-of-life measures can be translated into real improvements in life quality for key populations.
“How successful this will be remains to be seen,” said Adimora. “It really depends on the will of the agencies, the funding, and how skillful they are in getting out of their silos and working to really deal with these problems effectively.”
Adimora also wondered about the willingness of Congress to allot additional monies toward some of the activities in the quality-of-life strategies. She noted that the current political climate is not especially friendly toward those who are most vulnerable and at highest risk for HIV (eg, LGBTQ, poor Black women and men, and members of other racial ethnic communities).
Schmid concurred.
It’s a whole-government approach that’s needed, he said. “You have to use other programs — funding for housing programs, food programs; it’s not just the HIV programs that we have to look at.”
Accountability Is Key
The NHAS framework is based on a whole-of-nation approach, which calls for active participation by various federal, state, local, and tribal agencies as well as stakeholder groups, researchers, and people with or at risk for HIV. At the same time, Federal laws (such as the Federal Advisory Committee Act) don’t provide a formal opportunity for PWN and other stakeholder groups to sit at the decision-maker table.
The same is true at the local level. The Health Resources and Services Administration has yet to create a policy provision that allows groups such as PWN to participate in a meaningful way in local levels of Ryan White HIV/AIDS Program planning councils, despite being directly affected by these programs, which are designed to serve them.
Ray expressed frustration with the inability to “select our own people to be sitting on the bodies that are making these decisions” while at the same time giving credit to ONAP Director Harold Phillips for consistently meeting with and listening to PWN representatives.
Still, she and her colleagues are keeping a close eye.
“Now our job is to hold them accountable,” she said. “We will be watching and will see how things are implemented. We will be asking for meetings. And we will call out, call in, and be part of the process that says what needs to change and what isn’t working.
“Martin Luther King said that it is the quality, not the life that gives it value,” Ray paraphrased.
“Plans mean nothing without action, and we are not going to wait 5 years to see what [they] do with these measures. We are going to be pushing and asking all along,” she said.
Schmid and Ray Smith report no relevant financial relationships. Adimora has received consultation fees from Merck and Gilead Sciences.
Liz Scherer is an independent journalist specializing in infectious and emerging diseases, cannabinoid therapeutics, neurology, oncology, and women’s health.
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