Structural Barriers to Care and Social Isolation Identified in HealthHIV's Inaugural State of Aging with HIV™ National Survey

For Immediate Release                                                                        Contact: Lisa Frederick
April 3, 2020                                                                        202-507-4733 /

Washington D.C. - Structural barriers to care and social isolation were identified as the most significant Issues for people aging with HIV, according to HealthHIV’s Inaugural State of Aging with HIV National SurveyTM. The survey also identified significant gaps in care coordination and a lack of comprehensive resources for people aging with HIV, complicating the provision and quality of services for this growing population. It is estimated that 70% of people with HIV (PWH) in the United States will be 50 years or older by 2030.

HealthHIV has issued a comprehensive report on the survey, which includes detailed findings and implications on care coordination. The report can be viewed at: The report identifies the need for increased resources, as well as areas for improvement and best practices. The national survey covers six key areas: care coordination; HIV management; provider interaction; healthcare expenses; pharmacy usage; and aspects of living with HIV for PWH over the age of 50.


Key survey findings by topic include:

Care Coordination
Structural and financial barriers are negatively impacting care coordination. One quarter of respondents experience lack of convenient appointment times, long wait times, insurance coverage, and cost of care. 14% had difficulty paying for medication and 12% had difficulty paying for provider visits.

HIV Management
Over half of respondents live with at least one comorbid condition; experience depression and have high cholesterol. Although engaged in routine care, respondents indicated that when their HIV and primary care provider are the same person, they are less likely to receive treatment for comorbid conditions such as asthma, kidney disease and diabetes. 50% reported experiencing stigma, 25% reported ageism, and 24% reported homophobia when accessing healthcare. 

Interactions With Providers
Three quarter of respondents have seen a HIV care provider in the last six months and over half also have seen a primary care provider in the last six months.

Healthcare Expenses
One quarter reported cost and the lack of in-network provider insurance coverage as barriers to seeking care.

Pharmacy Usage
The majority of respondents are likely to contact a pharmacist with medication issues.

Aspects of Living with HIV for PWH over the age of 50
One quarter have experienced survivor's syndrome and nearly half felt lonely or isolated within the past two weeks (at time of survey).

Struggles with lack of social support and isolation persist. One-third of respondents indicated lack of an emotional support system. Survey findings also indicate that providers may need additional training to conduct fully comprehensive assessments of the additional services PWH over the age of 50 need.

 “The broader care coordination implications show that we need to leverage program activities to creatively and comprehensively respond to the health inequities that impact people aging with HIV,” said HealthHIV’s Executive Director Brian Hujdich. “These findings suggest that this community requires additional resources to address social support, depression and isolation. People aging with HIV still manage the burden of survivors’ syndrome, stigma, and feelings of isolation, which is especially concerning in the context of the COVID-19 pandemic and the need for physical distancing."

 “The impact of both ageism and HIV stigma compounds the problem of care coordination for this community," said Pozitively Aging Program Manager Lisa Frederick.

About the Survey

The national survey was conducted with 1,086 respondents from July 16, 2019 to August 12, 2019. The survey was distributed using survey monkey and no incentive was provided. The respondents were people living with HIV over the age of 50 representing 39 U.S states and Puerto Rico. The majority of respondents were lower income, 60% White, 21% Black, 12% Latino, 6% Multi-Racial with smaller percentages from Asian American, American Indian and Pacific Islander. The gender makeup was 66% gay, 22% heterosexual, 5% bisexual, 2% queer, 1% two-spirit and other 2%.

Key findings from the survey will inform the development of enhanced programs and services focused on improving care coordination for people aging with HIV.

About the Pozitively Aging Program

HealthHIV’s Pozitively Aging program is part of Gilead’s Age Positively Initiative and seeks to improve access to quality services and care coordination for PWH over 50. As this community continues to grow, health outcomes can be improved and sustained for PWH over 50 by enhancing care coordination/access, health literacy, and the co-management of conditions associated with aging with HIV through data collection and medical education. Pozitively Aging offers consumer education materials to strengthen self-management of care and address health literacy challenges. The program engages consumers, HIV specialists, primary care providers, and gerontology specialists to inform these education efforts and capacity building activities.

The HealthHIV's Inaugural State of Aging with HIVTM national survey report can be accessed at To download the full report, click here:

For more information about the Pozitively Aging program, please email, call 202-507-4733, or visit


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