A new syndicated research study from Health Union, HIV In America 2019, finds that despite the positive impact of treatments that lead to viral suppression, people living with HIV continue to face various stigmas and stresses that negatively impact their lives. The survey illuminates the perspectives and experiences of people impacted by HIV.

The findings help support the launch of H-I-V.net, Health Union’s 25th condition-specific online health community.

Nearly nine in 10 of the 400 respondents living with HIV said they feel their condition is under control with their current treatment plan. On a similar level, six in 10 respondents said they feel like they are in control of their health.

This view of their health is likely related to the positive effects of treatment these respondents have experienced, as nearly nine in 10 respondents said they have an undetectable viral load. Continued use of antiretroviral therapy is critical to achieving viral suppression and reducing a person’s viral load to an undetectable level. According to the National Institutes of Health, an undetectable viral load means that there is effectively no risk of transmitting the virus.

HIV In America 2019 respondents appear to represent a greater percentage of people who are virally suppressed compared to the national HIV population. The most recent data from the Centers for Disease Control and Prevention reports that 53% of people with HIV in the U.S. are virally suppressed.

However, despite the impact of treatments for survey respondents, the findings indicated that various stresses remain.

“The current state of treatment has greatly impacted my life in a good way because, without the advancements in treatment, I probably would not still be here,” said H-I-V.net patient advocate Dee Conner. “The stigma around HIV has changed, but not enough. We still have so much work to do when it comes to HIV stigma, and I think having an online health community like H-I-V.net can help in so many ways, including helping people living with HIV to not feel so alone.”

Seven in 10 respondents said they currently experience symptoms, although more than half said they are coping well with symptoms and side effects. And more than three-fourths of respondents are living with at least one other diagnosed condition, with hypertension (28%), anxiety or panic disorders (27%), high cholesterol (25%) and mood disorder (24%) most represented.

In addition to managing their conditions, respondents deal with a significant amount of stigma. Nearly half said they feel like they’re judged for being HIV-positive. Only three in 10 said they feel comfortable disclosing their HIV status with others.

The sources of stigmatization vary among respondents, with the greatest proportion – more than a quarter – saying they have felt stigmatized by sexual partners. Additionally, nearly a quarter have felt stigmatized by their friends, 18% by social media and 15% by healthcare professionals.

Respondents cited multiple misperceptions and inaccuracies as reasons for being judged or stigmatized by others. These include misperceptions about who can acquire the virus and not understanding that it can’t be transmitted when the virus is undetectable.

“Although it surfaces in different ways and has varying impacts, we have found that stigma, especially when it’s based on misperceptions, is a reality experienced across all of our online health communities,” said Tim Armand, co-founder and president of Health Union. “One of the many hopes with a community like H-I-V.net is that people living with the condition, regardless of how in control of their health they feel, have a safe, supportive environment to share experiences and obtain the information, support and validation they need.”

HIV In America 2019 surveyed 400 people diagnosed with HIV from July 12 to Oct. 3, 2019. A summary infographic of the results is available on H-I-V.net; additional survey results may be available upon request.

About Health Union

Since 2010, Health Union has encouraged social interactions that evolve into valuable online health conversations, helping people with chronic conditions find the information, connection, and validation they seek. The company creates condition-specific online communities – publishing original, daily content and continuously cultivating social conversation – to support, educate and connect millions of people with challenging, chronic health concerns. Today, the Health Union family of brands includes 26 online health communities, including LungCancer.net, ParkinsonsDisease.net, MultipleSclerosis.net and Migraine.com.