Human Immunodeficiency Virus (HIV) Fact Sheet
Introduction
Approximately 1.2 million people in the United States are living with HIV, which disproportionately affects men and underserved communities. While it was once a deadly diagnosis, HIV is now a health condition that people can manage through their lifetimes with access to safe, appropriate, high-quality treatment and support services. Thanks to the advancement of science, U=U, or undetectable equals untransmittable, means that people with HIV with an undetectable viral load cannot sexually transmit the virus to others, transforming lives and reducing stigma.
The Centers for Medicare & Medicaid Services (CMS) is proud to celebrate World AIDS Day 2024 with the theme "Collective Action: Sustain and Accelerate HIV Progress” through our continuous focus to provide affordable, accessible, high-quality care to all individuals enrolled in our programs, including people with HIV/AIDS. CMS is helping to drive progress across each of its strategic pillars and its commitment to advance equity, expand access, engage partners, drive innovation, protect programs, and foster excellence.
Advancing Equity and Expanding Access
CMS has sought to advance equity through expanded coverage for essential HIV/AIDS care across coverage programs and has taken important steps to strengthen the full continuum of care for people with HIV and AIDS.
Coverage and Access to PrEP: In 2023 and 2024, CMS expanded coverage for and access to Pre-exposure Prophylaxis (PrEP) for HIV, FDA-approved antiretroviral drugs prescribed to prevent HIV infections in individuals at increased risk of acquiring the disease. CMS expanded coverage of PrEP for HIV across Medicare and private health coverage.
- Medicare: As of September 30, 2024, Medicare Part B now covers PrEP — as well as associated counseling around HIV (including risk assessment, risk reduction, and medication adherence) and HIV screening — without cost sharing, deductibles or copayments.
- Private Health Coverage: After the U.S. Preventive Services Task Force (USPSTF) updated its recommendation in 2023 around clinicians offering PrEP, the Departments of Health and Human Services, Labor, and the Treasury released FAQs to clarify that long-acting injectable PrEP, as well as related baseline and monitoring services, must be covered without cost sharing. The FAQs also clarify how plans and issuers can mitigate challenges with coding and processing of claims for recommended preventive services, to ensure that individuals are not improperly charged for PrEP and other preventive care.
- Medicaid: CMS has issued landmark regulations that address known barriers to coverage and high-quality care for people with HIV who are enrolled in Medicaid. On April 22, 2024, CMS released two regulations — Ensuring Access to Medicaid Services and Medicaid and CHIP Managed Care Access, Finance, and Quality final rules — which will increase transparency and accountability, standardize data and monitoring, and create opportunities for states to promote active beneficiary engagement in their Medicaid programs with the goal of improving holistic access to care. For example, the managed care rule establishes maximum appointment wait times for primary care, obstetric/gynecological services, and outpatient mental health and substance use disorder services.
Capping Yearly Out-of-Pocket Prescription Drug Costs. In addition, the Inflation Reduction Act provides meaningful financial relief for millions of people with Medicare prescription drug coverage by improving access to affordable treatments. In particular, the new cap on annual out-of-pocket prescription drug costs makes it easier for people with HIV/AIDS to afford their medications and improves their medication adherence. For many enrollees with high drug costs, costs are capped for 2024 at about $3,500. For 2025, the law sets a lower, uniform cap of $2,000 for everyone with Medicare prescription drug coverage.
Financial Help to Purchase Health Coverage. IRA also extends financial help to purchase health coverage through HealthCare.gov and state-based Marketplaces until 2026, lowering premiums for millions of people — including those with and at risk for HIV. Four out of 5 HealthCare.gov customers can find plans for $10 or less per month after expanded financial assistance in the form of tax credits that lower the cost of their monthly premiums and lower out-of-pocket costs. Health insurance gives people with HIV access to appropriate HIV medical care and helps them stay healthy and prevent transmitting HIV to others.
Catalyzing Safety and Quality for Those Living with HIV/AIDS. The CMS National Quality Strategy aims to promote the highest-quality outcomes and safest care for all individuals. It describes a person-centered approach across an individual’s lifespan and the continuum of care, from home- or community-based settings to hospital to post-acute care, and across all payer types. CMS is working to set clinical outcome goals for high priority clinical areas, including HIV, to track progress toward achieving the goals of the CMS National Quality Strategy. For example, the quality measure HIV Viral Load Suppression is on the Medicaid Adult Core Set of Quality Measures, and CMS provides technical assistance to states and works with federal partners, such as HRSA, to support state reporting of this measure. CMS has also sought to better link routine care with specialty care, improving the care of all its enrollees, including those with HIV/AIDS.
Expanding access to specialty care. In January 2023, CMS issued guidance that allows state Medicaid and CHIP programs to pay specialists directly when a beneficiary’s primary health care provider asks for a consultation. For example, if a primary care provider consults with an infectious disease provider about a patient’s HIV treatment plan, both providers may be reimbursed for their time — even if the patient is not present. This guidance allows more people to benefit from practitioners with specialized knowledge and will expand access to specialists for Medicaid patients living with HIV/AIDS.
Delivering Care to People Where They Are. CMS created a new place of service (POS) code 27 (Outreach Site/Street) effective October 1, 2023, which can be used to seek payment for providing street medicine to unhoused people with HIV/AIDS. This is a non-permanent location on the street or found environment, not described by any other POS code, where health care providers provide preventive, screening, diagnostic, or treatment services to unsheltered, homeless patients. This code has been used frequently by health care professionals serving populations experiencing homelessness and has been adopted by payers, including Medicaid programs in Pennsylvania and Hawaii.
Engaging Partners and Driving Innovation
Innovation can improve access and utilization of health care for people with HIV and AIDS. CMS has worked to engage with partners and drive innovation across our programs to improve the health and lives of our enrollees.
Medicare Care Teams Helping Patients Manage HIV: CMS created new coding and payment for principal illness navigation and community health integration services to support health system navigation, person-centered planning, referral to supportive services, and home- and community-based care coordination. These services can be especially important for patients with high-risk conditions like HIV or AIDS, and can help care teams, patients, families, and caregivers design care and medication plans together that will work for each individual when they leave their doctor’s office. CMS also pays providers for social determinants of health (SDOH) risk assessments that can aid providers in connecting Medicare patients living with HIV/AIDS to needed resources and help providers tailor treatment plans to the unique needs of their individual patients.
Medicaid Flexibilities to Support Whole Person Care: CMS announced new opportunities for states to address important drivers of coverage, health care utilization, and health outcomes. These drivers, such as inadequate access to housing and food, and interventions, such as case management and referral to community services, are known to be important for people with HIV to stay connected to high quality care. These include:
- States may elect to adopt the Health Homes benefit to cover certain services that can help improve care coordination for people with Medicaid who have chronic conditions. Many of the services included in the Health Home benefit, such as comprehensive care management, health promotion, and referral to community and social support services, are also recommended strategies for improving engagement in care among people with HIV. As of August 2024, 19 states and the District of Columbia have a total of 34 approved section 1945 Medicaid Health Home state plan amendments, including three states that have specifically included HIV infection among their eligibility criteria.
- States may also elect to cover Home- and Community-Based Services (HCBS) as part of their Medicaid programs. HCBS make it possible for individuals to receive services in their own home or community rather than institutions and can also provide opportunities for states to address unmet HRSNs of people with HIV. Subject to CMS approval, states have flexibility to determine the types of HCBS they provide and the populations they serve, as well as whether HCBS are offered under the Medicaid state plan or a waiver program. For example, under section 1915(c) HCBS waiver programs, states can cover a range of services that address unmet HRSNs, such as housing and tenancy support, case management, or home-delivered meals. All states currently provide some form of HCBS, and as of August 2024, eight states operate HIV-focused section 1915(c) HCBS waiver programs.
- Through Section 1115 Demonstration projects, states can test innovative approaches for addressing unmet HRSNs in ways that consider local challenges and response capabilities. For example, subject to CMS approval, states can use Section 1115 Demonstration authority to test the effectiveness of providing housing transition and navigation services for individuals experiencing, or at risk of experiencing, homelessness. States can also request approval from CMS to test coverage for evidence-based nutritional assistance and medically tailored meals for certain individuals where there is a demonstrated clinical need. As of August 2024, ten states have received approval for Section 1115 Demonstration authority to provide both housing and nutrition interventions, and CMS continues to work with additional states that are interested in these opportunities.
- CMS has authorized reentry Section 1115 demonstration opportunities, which may aid people with HIV/AIDS who are returning to the community after a period of incarceration. CMS issued guidance for designing demonstration projects under section 1115 of the Social Security Act to improve care transitions for certain individuals who are soon-to-be former inmates of a public institution and who are otherwise eligible for Medicaid. Improving care transitions is especially important for individuals living with HIV to ensure their HIV care remains uninterrupted and does not progress to AIDS.
Resources
While some people with HIV/AIDS do not identify as LGBTQI+, the following informational tools can assist with offering more culturally appropriate care and reducing the impact of HIV stigma among patient populations.
- Caring for LGBTQI+ Patients Training Course on the Medicare Learning Network: The Caring for LGBTQI+ Patients online course, offered on the Medicare Learning Network, is designed to improve staff member understanding of sexual orientation and gender identity terminology, and improve understanding of disparities among older individuals who identify as LGBTQI+.
- Assisting Marketplace Consumers in the LGBTQI+ Community: This job aid provides information and guidance that Navigators, Certified Application Counselors (CACs), and Enrollment Assistance Personnel (EAP) need when working with members of the LGBTQI+ community and their families on enrollment in coverage.
As we seek to advance equity, CMS looks forward to working with partners across the health care system to increase access to services and improve the quality of care for people with HIV. More information may be found at cms.gov.
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