Primary care for people with HIV: Updated guidance Q&A

As people with HIV live longer thanks to effective treatment, the prevention and management of conditions that often occur earlier and more frequently in people with HIV is increasingly important for those who provide primary care for these patients. Michael A. Horberg, MD, MAS, FIDSA, and Melanie Thompson, MD — co-chairs of the panel that developed the latest updates to HIVMA’s and IDSA’s guidance on this topic — answered several questions from Science Speaks about the new guidance.

In what settings do you envision the updated guidance having the most impact?

The HIVMA/IDSA HIV Primary Care Guidance is for all providers of HIV care as well as those who have patients being cared for HIV by another clinic or provider. Advances in antiretroviral therapy have made it possible for persons with HIV to have a lifespan that approaches that of people without HIV without progressing to AIDS or transmitting HIV to sexual partners or infants. There is, therefore, increasing emphasis on maintaining high quality health throughout the lifespan.

To receive optimal medical care and achieve desired outcomes, persons with HIV must be consistently engaged in care and able to access uninterrupted treatment, including ART. Comprehensive, evidence-based HIV primary care guidance is more important than ever. Except for specific ART recommendations (including references to relevant Department of Health and Human Services guidelines), the guidance covers nearly all aspects of HIV primary care.

What are the most notable updates or changes compared to the 2020 guidance? 

While this guidance primarily addresses care for people with HIV, a patient-centered and individualized approach to HIV prevention and care is required to end the HIV epidemic. This version of the guidance contains an expanded section devoted to patient-centered optimization of HIV care, including the use of multidisciplinary care teams, telehealth and street medicine. The guidance has new sections devoted to immunizations, cancer screening and sexually transmitted infections, including a focus on mpox and STI prevention using doxy PEP. An updated discussion of metabolic diseases addresses statin use in people with HIV (including a discussion of results from the REPRIEVE trial) as well as approaches to comorbidity screening and management. A section on children with HIV has been added, along with updated sections on care for adolescents, persons of childbearing potential, and transgender and gender-diverse populations, and on COVID-19 in people with HIV.

What are the latest recommendations for people with HIV and cancer screening?

Because people with HIV are living longer, and with an increased likelihood of both first and second primary cancers, enhanced cancer prevention, screening and treatment efforts are needed both before and after an initial cancer diagnosis. Specifically:

• Providers should be vigilant for cancer, especially human oncogenic viral-based cancers, associated with Epstein-Barr virus, human papillomavirus, and hepatitis B and C viruses, even if no specific screening is recommended.
• Screening for prostate, breast, lung and colon cancer should be conducted according to guidelines from the U.S. Preventive Services Task Force and the American Cancer Society for the general population.
• A digital anal rectal exam should be performed annually, whether or not high-resolution anoscopy is available. Transgender women, cisgender men >35 years old who have sex with cisgender men, and all other people with HIV who are >45 years old should be screened with an anal Papanicolaou test if there is access to or the ability to refer for high-resolution anoscopy (preferred) and treatment.
• Persons with HIV between 21 and 29 years old should have a cervical Pap test annually. If the results of three consecutive cervical Pap tests are normal, follow-up Pap screening should be done in three years. Unlike for people without HIV, there is no age limit for Pap screening.
• Screening for hepatocellular carcinoma every six months by ultrasound with or without alpha-fetoprotein is recommended for those with cirrhosis from any cause, those with chronic hepatitis B, and those with a history of chronic hepatitis C and stage F3 or F4 fibrosis.
• Cancer screening for transgender and gender-diverse persons should be conducted based on guidelines for the organs and tissues present in the individual.

See the guidance for more details.

What information does the updated guidance provide regarding mpox, which was declared a public health emergency of international concern in August 2024?

Although the 2024 declaration refers to spread of clade 1 virus (the 2022 global outbreak was clade 2), recommendations for vaccination and treatment have not changed. Vaccination with two doses of the live, nonreplicating Jynneos vaccine has been effective in limiting the spread of mpox and reducing its severity in persons who acquire the infection following vaccination. Unfortunately, many people who may be at increased likelihood of infection have not yet been vaccinated or have received only one dose of vaccine.

The guidance recommends that all persons at increased risk of acquiring mpox, as defined by the Centers for Disease Control and Prevention, should be vaccinated. It is crucial to recognize the increased vulnerability of people with HIV who are untreated or have low CD4 counts, as they are at much higher risk of death from mpox. People with mpox also may have other concurrent STIs, therefore, HIV and STI screening should be done at the same time as diagnostic testing in a person suspected of having mpox (which should be done by PCR testing of lesions). HIV treatment should be started immediately for people with HIV who are untreated when diagnosed with mpox. Additionally, both vaccination and treatment with tecovirimat should be delivered with a racial equity lens.

How do you see this updated guidance contributing to the goal of ending the HIV epidemic in the U.S.?

Ending the HIV epidemic will require better aligning our care delivery systems with the needs of patients. We have not adequately succeeded in helping people diagnosed with HIV to engage and remain in care and to access and continue HIV therapy to attain long-term viral suppression, which enables optimal immune restoration while also preventing sexual transmission to partners or neonates. Therefore, the guidance begins with an expanded section on optimizing care engagement, medication adherence and viral suppression to encourage evidence-based interventions that have shown efficacy in improving these outcomes.

Such interventions include rapid initiation of ART at care entry, integration within the HIV care setting of gender-affirming care, services for mental health/substance use disorders, and differentiated service delivery using multidisciplinary care teams and a variety of care models. The goal must be to create welcoming environments that are stigma- and racism-free, with staff diversity that mirrors patient demographics as much as possible. Recognizing and addressing patient needs for housing, transportation, food insecurity and other needs of daily living is essential in order for individuals to stay in care and on ART for the long term.

What else should health care providers know about the updated guidance?

The American health care workforce was devastated by the COVID pandemic, and the HIV-workforce has particularly suffered. The number of people with HIV continues to increase as life expectancy grows, while over 31,000 new HIV acquisitions occur annually. Just as persons with HIV are aging, so are their care providers, with increasing numbers retiring or otherwise leaving the HIV workforce. We need substantially more HIV care providers if we are to meet the needs of a growing population of people with HIV.

This guidance is intended to aid workforce expansion by providing a key resource for providers who have not previously cared for substantial numbers of people with HIV. It’s also intended for those who are currently providing longitudinal care for people with HIV and who struggle to keep up with changing standards. The guidance supports multidisciplinary care and is intended for the entire care team, including nurses, advanced practice providers, pharmacists, case managers and care navigators. It emphasizes comprehensive care as a way to minimize care fragmentation as well as costly and inconvenient visits to multiple providers, while promoting long-term relationships between patients and their care providers.

To learn more, see the full updated guidance, “Primary Care Guidance for Providers of Care for Persons With Human Immunodeficiency Virus: 2024 Update by the HIV Medicine Association of the Infectious Diseases Society of America.”