The following information was written by and is provided through a partnership with the Tennessee Department of Health:
On November 27, 2019, Tennessee Department of Health became one of the first state health departments in the Southern U.S. to join the “Undetectable Equals Untransmittable” (or “U=U”) campaign. The U=U campaign raises awareness about the fact that people living with HIV who stay on treatment and maintain an undetectable viral load cannot transmit the virus through sex and are much less likely to transmit it through needle-sharing.
For a person living with HIV, being undetectable means that the amount of HIV virus in their blood is so small that it is “undetectable” to HIV viral load tests. When this happens, the person is incapable of transmitting HIV via sex. This has enormous health benefits for the individual as well. Staying undetectable can help a person living with HIV avoid the health complications from the virus and live a longer, healthier life.
Getting to undetectable status is a health goal for people living with HIV. To achieve and maintain an undetectable viral load, people need consistent access to treatment without fear. The fear that stigma creates can build barriers between medical providers and their clients.
The Centers for Disease Control and Prevention define stigma as “discrimination against an identifiable group of people, a place, or a nation.” This identifiable group of people can be a group of people who all share the experience of living with a health condition. For people living with HIV, stigmatization is a shared fear and, unfortunately, one grounded in reality.
According to Needs Assessment 2020 Special Study conducted by the Tennessee Community HIV/AIDS Partnership, one out of every three people living with HIV in Tennessee lives with the fear that their HIV status may be discovered by someone living in their community (Tennessee Community HIV/AIDS Partnership. "Needs Assessment Special Study). One in five experienced stigma related to their HIV status while receiving medical services.
In deep dive interviews, people living with HIV in Tennessee reported choosing and staying with one provider and/or avoiding medical treatment altogether to avoid potential HIV stigma. Stories about stigma demonstrated that people living with HIV might be stigmatized because of their HIV status and because of their race, gender, and sexual orientation.
One important dimension of stigma is that it provokes a fear response where fear is not needed or helpful. Study respondents described fear from people who lived in their community and from medical professionals in situations where HIV transmission was not possible. This fear made them more likely to limit their own options for treatment and in some cases served as a barrier to treatment itself.
In 2021, we understand that treatment is a key cornerstone of prevention. Our state is healthier when everyone living with HIV has easy, uninterrupted access to treatment. Over the years, many barriers to such access have been dismantled in Tennessee; people living with HIV can get treatment even if they are uninsured and cannot afford it through the Ryan White HIV/AIDS Program. To help people get access to HIV treatment early and stay in care, services like transportation, housing, and psychosocial support are in place. Expert case managers are available to help people new to this network of support navigate to the services they need. But even with all of those resources, stigma can make a person living with HIV think twice about taking advantage of them.
Ensuring that all Tennesseans, not just people living with HIV, understand that HIV treatment substantially reduces the risk of transmission fights stigma. When people living with HIV take their medications as prescribed and maintain an undetectable viral load, their efforts benefit their personal health and protect their community.
All of us, whether we live with HIV or not, can play a role in dismantling stigma. If you or someone you love is living with HIV, here are some resources you can use to help a person achieve undetectable and untransmittable status:
- Get into care (if you aren’t in care already) by connecting with a Ryan White Medical Case Manager. A case manager can tell you whether or not you qualify for Ryan White services and can answer any questions you have about your diagnosis and your options. Click here to find a case manager near you.
- Get back into care after a lapse, a move, or any other type of care interruption with the help of an Early Intervention Services (EIS) specialist or a Re-engagement specialist. Click here to read more about EIS services in Tennessee or here to connect with a Re-engagement specialist.
- Identify and overcome your barriers to daily medication. Maintaining an undetectable viral load requires people living with HIV to stay on a daily medication regimen. If that is something you haven’t had to do before, it can be challenging. Identify what makes it hard to take your medication daily and share your concerns with your case manager and/or medical provider. Click here to learn more about all of the supportive services Ryan White offers to help people maintain stable access to care.
- Set up a system of social support. Living with HIV can be challenging, especially if you are living in fear that people will discover your health status. One way to fight this fear is by telling the people in your life about your health. Planning a disclosure can be difficult, but there are lots of professionals and peers in Tennessee that can help. Your Ryan White medical case manager can support you in planning a disclosure. For people new to living with HIV, Anti-Retroviral Treatment and Access to Services (ARTAS) linkage coordinators can help you get into care and plan a first disclosure. Healthy Relationships is a series of workshops for people new to living with HIV that uses a peer model to help people get comfortable and good at talking about their HIV status. Click here for more information about ARTAS and Healthy Relationships.
HIV stigma has its roots in a time when we didn’t know what HIV was, how it spread, or how to treat it. Stigma alienates people living with HIV and is often part of a person’s thought process when considering care. No one should be afraid to do something good for their health, especially when it will also benefit their community. We all have a role to play in eliminating HIV stigma in our communities. Spread the word about U=U, bring up HIV and educate your friends and family, and spread the word about all of the resources people living with HIV in Tennessee have to maintain their health.