On Dec. 5, the national organization HealthHIV released its Sixth Annual State of HIV Care National Survey. This survey identifies obstacles that HIV care providers and patients face, illuminates their perspectives on existing resources, and highlights both gaps and progress in HIV care in the United States.
The federal health system in the U.S. has set some ambitious goals through their ongoing Ending the HIV Epidemic in the U.S. initiative. Primarily, those goals include reducing the rate of new HIV infections by 75% by 2025, and by 90% by 2030. While progress has been made, thanks to the expansion of Medicaid under the Affordable Care Act, more than 40% of Americans remained underinsured in 2022.
This report, based on insights from frontline health-care providers, offers a critical look at the current state of HIV care in the context of EHE objectives. Understanding the systemic gaps and challenges faced by health-care professionals is crucial for informing strategies that will improve HIV prevention and treatment, ensuring progress toward the 2025 and 2030 targets for ending the HIV epidemic in the U.S.
The individuals participating in the survey included professionals from all aspects of HIV care, including doctors, nurses, pharmacists, clinical social workers, dentists and more. Also included were non-clinical providers, such as social workers, case managers, researchers, administrators and more.
In asking respondents to capture the State of HIV Care in one word, “improving” emerged prominently at the center, symbolizing the significant advancements in treatment and support, and a collective optimism for the future.
But the report’s findings are not universally positive — especially given the upcoming White House Administration’s open hostility to public health programs. There still remain obstacles and gaps in care for the LGBTQ+ community, minorities and the economically disadvantaged, and are likely to get worse if Trump’s cabinet picks get confirmed.
For example, the general consensus among providers is that anti-LGBTQ+ policies are undermining HIV care and widening health disparities. Anti-LGBTQ+ health-care policies present significant obstacles for HIV providers working to deliver equitable and effective care. These policies foster stigma and mistrust, discouraging LGBTQ+ individuals from engaging with prevention, testing, and treatment services. Marginalized groups, such as Black and Hispanic LGBTQ+ individuals, often experience compounded discrimination, further deepening health disparities and inequities.
According to the report, “Providers widely recognize the harmful impact of anti-LGBTQ policies on public health outcomes. In addition to creating hostile healthcare environments, some state-level interventions intended to address public health challenges inadvertently reinforce harm. For example, statutes empowering public health officials with broad authority can alienate LGBTQ communities and hinder progress in fostering culturally affirming care.”
The vast majority of health-care providers (93%) believe that anti-LGBTQ policies negatively impact the health of their clients or patients. Meanwhile, at least half of providers believe the recent escalation of anti-trans policies has already negatively impacted the mental health of their transgender or gender non-conforming clients.
Some of the other key findings of the report include the following:
• Workforce shortages, largely caused by inadequate compensation and burnout are major obstacles to quality HIV care. Survey respondents insist that this shortage illuminates the urgent need for increased funding for programs and agencies providing HIV caregivers and staffing support for those programs and agencies. Some of the services being limited by the lack of a trained workforce include childcare, crisis support and/or hotlines, gender-affirming care, housing services and many others.
• More training on new treatments and health equity is required. Clinicians and service providers emphasize the need for training in innovative HIV treatments, such as long-acting injectables, as well as guidance on addressing health disparities and navigating funding challenges. These areas are vital for improving care delivery and addressing systemic inequities.
• Lack of essential behavioral health services is driving gaps and undermining care for people with HIV. Many organizations are missing essential services, particularly in behavioral health and social services, resulting in the exclusion of social determinants of health from necessary care. Fewer than 30% of respondents offer services like childcare, inpatient detox and crisis support, highlighting a national shortage of behavioral health care providers.
• Ongoing stigma hinders retention in HIV care for priority populations. “Retention” is the term used to refer to keeping a person with HIV involved with their long-term care and following their treatment regimen. Stigma significantly complicates retention in HIV care, as many organizations struggle to provide sufficient behavioral health support. Fear of judgment and distrust in health-care systems create significant barriers to care, particularly for priority populations—those at the highest risk of infection or disease progression, such as individuals experiencing homelessness or substance use.
• Insurance barriers continue to hinder access to PrEP and HIV care, highlighting the need for reform. Barriers, such as formulary restrictions, high co-pays, and prior authorizations, delay access to PrEP and other treatments, disproportionately impacting priority groups.
The survey findings highlight the urgent need for advocacy against HIV criminalization laws and anti-LGBTQ+ policies to protect patient well-being and public health. Survey respondents identified the role of providers in advocating for policy reform as essential — not only to safeguard patient rights but also to create a care environment where patients feel safe and supported. By working toward policy changes, providers can help reduce barriers to HIV prevention, treatment and support, ultimately improving health outcomes for patients facing discrimination and legal stigmatization.
The report suggests that HIV advocates address the following issues: 1.) significantly expanding the HIV care workforce (as well as the required long-term funding to support it); 2.) addressing entrenched inequities in policy; and 3.) policy advocacy, especially on the state and local levels — at least until the incoming administration finishes its term. The report argues that to effectively address the pressing concerns surrounding HIV, advocacy priorities must be flexible and cross-disciplinary, incorporating adaptable strategies that integrate diverse fields and perspectives.