Deeper Look: HIV among Women

Black Women: Bearing the Greatest Burden

The HIV epidemic among women is heavily concentrated among Black women, who face extraordinarily high rates of infection that reflect the intersection of racism, sexism, and poverty. Black women accounted for half (50%) of HIV diagnoses among women but represent only 13% of the female population. This represents a diagnosis rate that is dramatically higher than women of other racial and ethnic groups.

Black women had the highest HIV diagnosis rate (19.6 per 100,000), which was 3 times the rate among Hispanic/Latino women (6.7) and 11 times the rate among White women (1.8). These stark disparities reflect not individual choices but rather systematic inequities that have created conditions of vulnerability for Black women.

The Structural Roots of Disparity

The disproportionate impact of HIV on Black women cannot be understood without examining the historical and contemporary structural factors that create risk:

• Economic Inequality: Black women experience poverty at higher rates than other groups, limiting their ability to negotiate safer sexual practices, access healthcare, and leave relationships that may put them at risk.
• Geographic Concentration: Many Black women live in areas with high HIV prevalence, creating community-level factors that increase risk of exposure to HIV.
• Healthcare Barriers: Systematic racism in healthcare, limited access to quality reproductive health services, and provider bias all create barriers to HIV prevention and care for Black women.
• Mass Incarceration: The high rates of incarceration among Black men create disrupted social networks and relationships that can increase HIV transmission risk within Black communities.
• Limited Partner Options: The intersection of racism and economic marginalization can limit Black women’s pool of potential partners, potentially increasing the likelihood of relationships with men who have undisclosed HIV risk factors.

The Prevention Gap: PrEP Utilization Among Women

One of the most significant challenges in HIV prevention for women is the dramatic underutilization of pre-exposure prophylaxis (PrEP) relative to both need and awareness. The gap between PrEP availability and utilization among women represents a critical missed opportunity in HIV prevention.

The Numbers Tell the Story

The disparity in PrEP use by gender is stark and concerning. While women comprised 19% of new HIV diagnoses in 2023, they represent a much smaller proportion of PrEP users. This prevention inequity reflects multiple barriers that prevent women from accessing this highly effective prevention tool.

Barriers to PrEP Access for Women

• Provider Knowledge and Bias: Many healthcare providers lack training in HIV prevention for women and may not routinely discuss PrEP with female patients, particularly heterosexual women.
• Misperceptions of Risk: Both providers and women themselves may underestimate HIV risk among women, particularly those in seemingly stable relationships.
• Healthcare Access: Women may lack regular access to healthcare providers who are knowledgeable about and comfortable prescribing PrEP.
• Insurance: Coverage limitations can make PrEP inaccessible, particularly for women experiencing economic instability.
• Stigma and Disclosure Concerns: Women may be concerned about stigma associated with taking HIV prevention medication or may worry about having to disclose PrEP use to partners.
• Side Effect Concerns: Real or perceived concerns about side effects, particularly those that might affect reproductive health, can deter women from starting or continuing PrEP.
• Complex Lives: Women often juggle multiple responsibilities as caregivers, workers, and community members, making it challenging to maintain regular healthcare appointments and medication schedules required for PrEP.
• Addressing the PrEP Gap

Closing the PrEP utilization gap among women requires comprehensive approaches that address both individual and structural barriers:

• Provider Education: Healthcare providers need training on identifying HIV risk among women, discussing PrEP appropriately, and addressing women’s specific concerns and questions.
• Community-Based Services: PrEP programs that meet women where they are—in community health centers, reproductive health clinics, and community-based organizations—can improve access.
• Integrated Care: Incorporating PrEP services into routine reproductive health care, family planning services, and other healthcare encounters can normalize HIV prevention for women.
• Addressing Stigma: Community education and messaging that destigmatizes HIV prevention and positions PrEP as a tool for sexual health empowerment rather than risk compensation.
• Economic Support: Programs that address cost barriers through insurance navigation, patient assistance programs, and free or low-cost services.

Health Disparities and Structural Determinants

HIV among women cannot be understood without examining the broader context of health disparities that affect women’s health outcomes across multiple domains. Women with HIV face intersecting challenges that extend far beyond HIV itself.

Economic Vulnerability

Many women living with HIV face significant economic challenges. The financial burden of HIV care, combined with employment discrimination and the stigma associated with HIV, often leads to loss of income and financial instability. This economic vulnerability creates cascading effects:

• Healthcare Access: Economic instability can limit access to consistent, high-quality HIV care and treatment.
• Housing Stability: Financial challenges can lead to housing instability or homelessness, which directly affects health outcomes and treatment adherence.
• Food Security: Economic hardship can lead to food insecurity, which can interfere with medication adherence and overall health.
• Competing Priorities: Women facing economic hardship may need to prioritize immediate survival needs over long-term health management.

Geographic Disparities

Living in low-income areas significantly impacts HIV risk and outcomes for women. These areas often have:

• Limited Healthcare Infrastructure: Fewer HIV specialists, limited clinic hours, and long waiting times for appointments.
• Higher HIV Prevalence: Community-level factors that increase the likelihood of HIV exposure.
• Fewer Economic Opportunities: Limited employment options and educational resources that could improve economic stability.
• Social Determinants: Higher rates of poverty, housing instability, and other social factors that increase HIV vulnerability.

Research and Representation Gaps

Much of the existing HIV research in the United States has historically focused on men, particularly gay and bisexual men, leading to significant knowledge gaps about HIV in women. This research bias has several consequences:

• Limited Understanding: Insufficient knowledge about the biological, behavioral, and social factors that specifically affect HIV risk and outcomes in women.
• Treatment Protocols: HIV treatment guidelines and protocols that may not adequately address women’s specific needs and concerns.
• Prevention Strategies: Prevention approaches that may not be optimally designed for women’s experiences and contexts.
• Clinical Trials: Underrepresentation of women in HIV clinical trials, limiting the evidence base for treatment recommendations.

HIV Stigma and Women’s Experiences

Women living with HIV often experience unique forms of stigma that intersect with gender-based discrimination and social expectations about women’s roles and sexuality. HIV-related stigma varies by gender, with women and transgender individuals reporting higher levels of stigma than men.

Gender-Specific Stigma

Women with HIV may face particular stigma related to:

• Sexuality and Morality: Judgmental attitudes about women’s sexual behavior and assumptions about how they acquired HIV.
• Motherhood and Reproduction: Stigma related to pregnancy, childbearing, and parenting among women with HIV.
• Caregiver Roles: Challenges in fulfilling expected roles as caregivers and family nurturers while managing HIV.
• Beauty and Femininity Standards: Concerns about physical changes related to HIV or treatment that may affect appearance.

Impact on Health Outcomes

HIV-related stigma has direct consequences for women’s health outcomes:

• Delayed Testing: Fear of stigma may prevent women from seeking HIV testing.
• Treatment Adherence: Stigma can interfere with medication adherence and engagement in care.
• Disclosure Decisions: Complex decisions about when, how, and to whom to disclose HIV status.
• Mental Health: Increased risk of depression, anxiety, and social isolation.

The HIV Care Continuum for Women

Women’s experiences along the HIV care continuum—from testing through viral suppression—are shaped by the multiple structural and social factors that affect their lives.

Testing and Diagnosis

Many women living with HIV are diagnosed later in the course of infection compared to men, often because:

• Limited Risk Perception: Both women and their healthcare providers may not recognize HIV risk factors.
• Healthcare Access: Irregular healthcare access can delay testing and diagnosis.
• Testing Practices: HIV testing may not be routinely offered in healthcare settings that women typically access.

Engagement and Retention in Care

Once diagnosed, women face various challenges in engaging and remaining in HIV care:

Competing Priorities: Women’s roles as caregivers for children, elderly parents, and others may interfere with their own healthcare.

Transportation and Childcare: Practical barriers such as lack of transportation or childcare can prevent regular clinic attendance.

Provider Relationships: The quality of relationships with healthcare providers significantly affects women’s engagement in care.

Mental Health: Depression, anxiety, and trauma can interfere with care engagement.

Viral Suppression Outcomes

While many women achieve viral suppression with appropriate treatment, disparities persist across racial and ethnic groups. Factors affecting viral suppression include:

• Treatment Adherence: Multiple factors can interfere with consistent medication taking.
• Side Effects: Concerns about medication side effects, particularly those affecting appearance or reproductive health.
• Social Support: The availability of supportive relationships affects treatment success.
• Economic Stability: Financial resources affect ability to maintain consistent care and treatment.