By: Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy
The Centers for Disease Control and Prevention (CDC) released its latest update to the Behavioral and Clinical Characteristics of Persons with Diagnosed HIV Infection in September 2026. These data represent findings from people living with HIV/AIDS (PLWHA) collected in 2024, and could point to significant trouble ahead for PLWHA (CDC, 2026).
 |
| Source: CDC |
Key Findings and Discussion:
While 80% of respondents were prescribed antiretroviral therapy (ART) to treat their HIV, only 63% reported taking every dose as prescribed. Among those who missed doses, 22.7% missed doses for 1 to 2 days, 10.2% for 3 to 5 days, 1.5% for 6 to 10 days, and 2.3% for 11 or more days. The most commonly reported reasons for not taking medications included:
- Forgetting to take them (69.1%)
- Changes in daily routines or travel (42.3%)
- Falling asleep early or oversleeping (38.4%)
- Feeling depressed or overwhelmed (21%)
- Problems getting prescriptions or refilling medications (18.5%)
- The person didn’t feel like taking them (14.1%)
- Alcohol or drug use (10.3%)
- Problems paying for medications (6.9%)
- In the hospital or too sick to take medications (6.6%)
- Difficulties with medication side effects (5.8%)
When disaggregated by sex, Female respondents were slightly more likely to be adherent to treatment (66.2%), while 62.5% of Males reported being adherent.
When disaggregated by race, Multiracial Americans were the least likely to be treatment adherent (59.5%), followed by Black Americans (62%), Hispanic/Latine Americans (63.1%), and White Americans (65.6%). Asian Americans had the highest rate of treatment adherence, at 70.6%.
When disaggregated by age, adults aged 50+ were most likely to be treatment adherent (69.9%), followed by those aged 40-49 (58.3%) and those aged 18-29 (53.6%). Adults aged 30-39 were the least adherent, at 50.6%.
These data are particularly problematic, as failure to adhere to treatment regimens can result in the mutation of the virus to become resistant to specific ARTs or drug classes, making HIV harder to treat and limiting future treatment options. Additionally, nonadherence to ART regimens can leave the virus unsuppressed, increasing the likelihood of transmitting it to others (HIV dot Gov, 2026).
 |
| Source: Marley Drug |
How to Improve Treatment Adherence
The HIV treatment landscape has changed significantly over the past twenty years. While treating HIV once required patients to take and keep track of multiple pills a day (or daily injections), single-pill oral regimens became the norm in the 2010s, and now, we have long-acting injectable (LAI) medications that can be delivered monthly or every other month.
A recent study published in The New England Journal of Medicine found that patients treated with LAIs were significantly less likely to experience regimen failure (n = 29; 19%) than patients taking a standard oral regimen (n = 55; 36%). While most regimen failures in the standard group resulted from virologic failure (58.2%), treatment discontinuation or abandonment caused regimen failure in the LAI group (82.6%). At the 48-week mark, regimen failure was 22.8% in the LAI group and 41.2% in the standard oral regimen group, indicating that LAIs are a key component to improve treatment adherence and virologic suppression (Rana et al., 2026)
ADAP Advocacy’s own research found that 52.3% of patients who responded to a 2024 survey would prefer LAI treatment regimens over oral regimens (Johnson et al., 2024).
 |
| Source: ADAP Advocacy |
Quality of Life and HIV
Additional findings of the MMP found that structural challenges continue to negatively impact PLWHA, with respondents reporting hunger or food insecurity (22%), unstable housing or homelessness (20%), and unemployment (15%) as being primary drivers of poor physical, mental, and emotional health. Moreover, many PLWHA reported unmet needs for ancillary services that could improve living conditions and well-being, including access to dental care (24%), meal or food service assistance (15%), and stable sheltering or housing services (15%).
Trouble Ahead
The real concern in these data is not the data themselves, but that they were gathered before the Trump Administration took wrecking balls to nearly every aspect of public health provision and services. With state ADAP programs facing increasing budgetary shortfalls that could result in constriction of state programs (Hopkins, 2026), the forthcoming Medicaid implosion that the Trump Administration and its allies in Congress forced through in the One Big Beautiful Bill Act (Hopkins, 2025), and exploding costs of living related to the ongoing war against Iran and nonsensical tariffs, including skyrocketing costs of fuel, diesel, food, goods, and services (Wile & Murphy, 2026; Zahn, 2026), PLWHA are going to be squeezed more than ever. The reality is that patients living with HIV are going to be significantly worse off financially and are likely to face significantly higher barriers to accessing not only HIV care and treatment, but basic necessities, like food, shelter, and transportation.
While we should have been preparing for this for a while, many of us were caught flat-footed by the wholesale destruction being wrought by the Trump Administration. Hopefully, we will be able to course correct enough to avoid the majority of the devastation many are predicting.
Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website.
Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association; rather, they provide a neutral platform for the author to promote open, honest discussion of public health-related issues and updates.
References:
[1] Centers for Disease Control and Prevention. (2026, September 10). Behavioral and Clinical Characteristics of Persons with Diagnosed HIV Infection. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: National Center for HIV, Viral Hepatitis, STD, and Tuberculosis Prevention: Division of HIV Prevention: HIV Data: Medical Monitoring Project. https://www.cdc.gov/hiv-data/mmp/behavioral-clinical-characteristics-pwh.html
[2] HIV dot Gov. (2026, September 24). Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents With HIV. Rockville, MD: United States Department of Health and Human Services: Office of Infectious Disease and HIV/AIDS Policy: HIV dot Gov: Clinical Info: Guidelines. https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adult-and-adolescent-arv/interruption-antiretroviral-therapy
[3] Hopkins, M. J. (2025, July 30). Preparing for One Big Beautiful Disaster. Washington, DC: PlusInc: Blog. https://www.plusinc.org/blog/one-big-beautiful-disaster
[4] Hopkins, M. J. (2026, September 24). ADAP: A House of Cards Waiting to Fall. Nags Head, NC: ADAP Advocacy: ADAP Blog. https://adapadvocacyassociation.blogspot.com/2026/09/a-house-of-cards-waiting-to-fall.html
[5] Johnson, R. D., Hopkins, M. J., Laws, J., & Macsata, B. M. (2024). HIV Long-Acting Injectables: Patient access considerations for injectable HIV therapies and injectable HIV Pre-Exposure Prophylaxis. Nags Head, NC: ADAP Advocacy. https://www.adapadvocacy.org/s/2024_ADAP_Project_Long_Acting_Injectables_Final_Report_062524-wgxy.pdf
[6] Rana, A. I., Zheng, L., Castillo-Mancilla, J., Bao, Y., Sieczkarski, S., Brooks, K. M., Lake, J. E., Fichtenbaum, C., Heath, S. L., Belaunzaran-Zamudio, P. F., Klingman, K., Fox, L., Morton, T., Stirratt, M., Li, J. Z., Acosta, E. P., Venuto, C., Galárraga, O., Shoptaw, S., Wohl, D., … ACTG A5359 LATITUDE Trial Team. (2026). Cabotegravir plus Rilpivirine for Persons with HIV and Adherence Challenges. The New England journal of medicine, 394(9), 858–871. https://doi.org/10.1056/NEJMoa2508228
[7] Wile, R. & Murphy, J. (2026, September 23). The U.S. economy before and after the Iran war, in five charts. New York, NY: NBC News: Business: Economy. https://www.nbcnews.com/business/economy/us-economy-iran-war-five-charts-rcna598412
[8] Zahn, M. (2026, August 25). Tariffs will cost US households over $1,000 a year, Yale Budget Lab says. Burbank, CA: ABC: ABC News: Business. https://abcnews.com/Business/tariffs-cost-us-households-1000-year-yale-budget/story?id=135945432
No comments:
Post a Comment