5 Key Facts About Medicaid Coverage for People with HIV

Lindsey Dawson, Priya Chidambaram, and Jessica Mathers
Published: Apr 01, 2025

Medicaid is the primary source of insurance coverage for people with HIV, playing a key role in financing HIV care and prevention efforts. Despite the importance of Medicaid for people with HIV, they represent a very small share of program enrollees overall (less than one-half of a percent). Most Medicaid enrollees with HIV qualify for the program through the Affordable Care Act (ACA)’s Medicaid expansion and disability-related pathways.

Policy proposals being considered by Congress to reduce federal spending for the Medicaid program could have negative implications for people with HIV and those at risk. It is unclear what specific policies might be implemented to achieve federal reductions and a range of options are being considered, but reductions in federal Medicaid funding would shift costs to states and could result in coverage losses, reduction in benefits, cost-shifting to HIV safety-net programs, and/or reductions in payment rates to providers, if states do not offset federal dollars. Policies imposing Medicaid work requirements, which could happen through the Congressional budget process or via waiver approvals, would impact people with HIV as well, likely leading to coverage losses. Coverage losses among people with HIV would likely increase demand on the nation’s HIV safety-net program, the Ryan White Program (which could also face cuts in Congress though the program’s funding has already not kept pace with inflation or growing need). Loss of Medicaid coverage could result in interruptions in HIV care and treatment, which could lead to increased morbidity and mortality as well as HIV transmission.

1. Medicaid is the primary source of insurance coverage for people with HIV.

Medicaid is the single largest source of coverage for adults with HIV in the U.S., with four in ten estimated to be covered by the program (40%). By comparison, only 15% of adults in the general population have Medicaid coverage (Figure 1). Medicaid has helped to provide HIV care since the HIV epidemic began in the early 1980s. Coverage and benefits have grown over time as people with HIV are living longer, new infections continue to occur, and due to the Medicaid program’s expansion under the Affordable Care Act (ACA). Higher rates of Medicaid coverage reflect the fact that people with HIV have lower-incomes (33% of adults with HIV have incomes below 100% FPL compared to 11% of adults overall). Additionally, a large share of people with HIV have a disability (42%) and one in four (25%) people with HIV on Medicaid are dually eligible for Medicare, compared to 14% of enrollees without HIV.

2. Medicaid is the primary payer for HIV care and treatment

While Medicaid spending on people with HIV is a small share of all Medicaid spending, it accounts for an estimated 45% of all federal spending on HIV care and is the largest source of public financing for HIV care in the U.S, followed by Medicare. Still, in FY 2022, CMS estimates federal Medicaid spending on HIV represented less than 2% of total federal Medicaid spending. In addition, states also contribute to Medicaid spending on HIV (Medicaid is jointly financed by state and federal governments). Medicaid spending on HIV has increased over time, reflecting growing numbers of enrollees with HIV and the rising costs of care and treatment. In this way, it differs from the Ryan White Program, which is dependent on Congressional appropriations and funding levels do not automatically adjust to meet the needs of a growing population and increasing medical costs.

3. Medicaid expansion is the most common pathway to program eligibility for people with HIV.

Over four in ten (42%) Medicaid enrollees with HIV have coverage through the ACA’s Medicaid expansion, making it the primary pathway to Medicaid eligibility for this population. In Medicaid expansion states, over half (51%) of adults with HIV have coverage through the expansion. This pathway was created under the ACA to provide coverage to low-income adults on the basis of income without other categorical requirements like disability or pregnancy. Individuals with HIV who qualify through the expansion pathway may be able to access early treatment that could help stave off disability and significantly improve health outcomes. However, not all states offer the expansion pathway and today over one-third (35%) of people with HIV live in one of ten states that has not opted to expand Medicaid. Medicaid enrollees with HIV continue to enroll through the disability pathway at much higher rates than those without HIV (36% v 15%) and it remains the primary entry point to coverage for adults with HIV in non-expansion states, two-thirds (66%) of whom have disability- related coverage (compared to 30% in expansion states).

4. Medicaid enrollees with HIV are more likely to have substance use disorders, mental health conditions, and other chronic conditions relative to those without HIV.

Medicaid enrollees with HIV experience comorbidities at higher rates than those without HIV, including those related to mental health and substance use disorders. Nearly three-quarters (73%) of Medicaid enrollees with HIV have one of 34 other chronic conditions, compared to 42% of enrollees without HIV (see Figure 4 notes for details). Enrollees with HIV are more than twice as likely to be medically complex than enrollees without HIV, with about one-third (32%) having three or more chronic conditions in addition to HIV, compared to 13% of enrollees without HIV (data not shown). Adult enrollees with HIV are also twice as likely to have either a substance use disorder or mental health condition diagnosis (44% v 23%) compared to those without HIV. Enrollees with HIV are nearly ten times more likely than enrollees without HIV to have a hepatitis diagnosis. However, likely reflecting curative treatments now available, that share has declined from 14% of enrollees in 2013 to 6% in 2021 (data not shown). These differences between enrollees with HIV and without HIV likely reflect a range of both medical and social factors that combine to increase the risk and prevalence of these co-occurring conditions.

5. Spending for Medicaid enrollees with HIV is nearly three times higher than spending for those without HIV.

Spending on people with HIV enrolled in Medicaid is substantially higher than on those without HIV, reflecting higher health needs and costs of care. Average Medicaid spending per adult enrollee with HIV was about $24,000 in 2021, nearly three times that of adult Medicaid enrollees without HIV (about $9,000 per enrollee). While spending on enrollees with HIV was higher across all spending categories, the difference was especially marked in the drug/treatment category reflecting the relatively high cost of HIV medications (though notably, the drug spending data reflects pre-rebate amounts). Still, because people with HIV represent less than one-half of a percent of Medicaid enrollees overall, the net impact on Medicaid spending is small (less than 2%, see point 2 above).

Methods

Medicaid Claims Data: Figures 3-5 in this analysis use the 2021 T-MSIS Research Identifiable Demographic-Eligibility and Claims Files (T-MSIS data) to identify Medicaid enrollees with HIV.

Identifying HIV in Medicaid Claims Data: Enrollees with HIV were flagged if they had a relevant ICD 9 or ICD 10 code, any drug claims for a single tablet regiment (STR), or two or more other non-STR ARVs. A list of diagnosis and drug codes that were used for this analysis are available upon request.

Enrollee Inclusion Criteria: Enrollees were included if they were ages 18 or older and had at least one month of Medicaid coverage. Figure 4, which identifies rates of chronic conditions among those with and without HIV, also excludes those who had at least one month of Medicare coverage. These enrollees were excluded from these calculations since they may not have had sufficient claims in T-MSIS to identify chronic conditions.

State Inclusion Criteria in Medicaid Claims Data: To assess the usability of states’ data, the analysis examined quality assessments from the DQ Atlas for service users in the “Other Services” and Drug files for 2021. 49 states and D.C. were included in this analysis. Mississippi was excluded since it received an “Unusable” rating on these measures.

Defining Chronic Conditions (Figure 4): This analysis used the CCW algorithm for identifying chronic conditions (updated in 2020), excluding its definition for mental illness, which was pulled from a different source. This analysis also included in its definition of chronic conditions substance use disorder, mental illness, obesity, hepatitis C, and intellectual and developmental disabilities (ASPE definition).

Calculating Spending (Figure 5): Average annual per capita spending calculations include fee-for-service spending, payments to managed care plans, and payments to Medicare. Spending was calculated by summing the total spending of all claims per enrollee in the T-MSIS claims files and manually adds Medicare premiums for those who are also enrolled in Medicare. Estimates here do not include prescription drug rebates and most supplemental payments to providers.