The first time I ever heard about Molecular HIV Surveillance (MHS) was in 2018 at a Positive Women’s Network (PWN) summit in Myrtle Beach, SC. As  someone who has advocated for the rights of women living with HIV for 20 years, MHS was news to me!  I really did not understand the depths of what it meant for the Center of Disease Control (CDC) to have access to my personal data without my consent. I have been living with HIV since the age 15,  and from what I understood about my diagnosis was that my labs were collected through blood draw and sent to the CDC for general research and data tracking. That being said, I begin to think about how I have  participated in so many research studies where they told me I would just be seen as a “number”.  I also thought about the number of times I’ve had labs drawn, and did not question who it was shared with.  I never thought about whether they could locate me based on a genetic molecular sequence between myself and other folks living with HIV. I don’t think it mattered to me at that time, since I had believed I was just another and knew they couldn’t find me no matter what. I did not put much effort to look into it further.

Years later after going to several conferences, I continued to learn and grow in my policy and advocacy skills through my role as a PWN policy fellow and state lead. I began to understand more about the impact of MHS and how it directly harmed my  community. After hearing multiple horror stories of  how MHS has directly impacted the lives of PLWHA, it made me furious, sad, and angry. I felt as if my community was being targeted for their diagnosis. The folks in power were stripping us of our rights as human beings. The intentional act of neglecting to inform PLWHA that we were being surveilled in such an intrusive way.  It made me feel like at any moment in my life I could be at risk of  being criminalized for how they are using MHS.  Question in why is it only PLWHA , why are we the ones in the world with a human condition that makes us a target to the rest of society. This I will never understand, but what I do know  is that they are taking our data without asking or disclosing this information to us. They continue to steal our private health information and use it to target PLWHA.

My anger and mistrust led me to the why behind my fight. I began to mobilize around MHS here in Oregon. I quickly learned that Oregon is very stagnant and doesn’t like to properly inform the community. In many of the public health spaces I entered,  I used it as an opportunity to bring up information that is important for our community to know. I addressed MHS in several meetings I attended, asking if the people knew about it, and was surprised by the feedback I received.  In one meeting some long-term survivors   made remarks like “oh I have been positive for so long , I don’t care what they know or have on me” While others directed questions to the staff members who were present and didn’t seem too happy that I brought it up. The staff members responded with excuses like, “MHS is a very touchy topic and it’s not open for discussion”. In another meeting I attended when I brought it up, they explained it to me as it is ONLY used to help with gaps in treatment and prevention. I know that is not the truth based on the multiple training sessions I received at PWN.

On multiple occasions, I was shut down while attempting to educate my peers about such an important issue. Refusing to acknowledge that criminalization can be used as a weapon if multiple “Clusters” are detected within the same area. Public health officials utilize HIPAA to defend the use of MHS without accepting the multiple loopholes HIPAA does not protect against. What is even more alarming is how many data breaches happened this past year which led to Oregon’s Privacy Act or OCPA going into effect in July of 2024. Even more of a reason to advocate on behalf of this issue, so we can ensure OCPA includes the rights of PLWHA. 

Advocating for Molecular HIV Surveillance (MHS) as an advocacy campaign for our PWN-State Lead projects last year was very challenging. At many times, I became discouraged and felt like MHS may not be a issue I can address or educate our community here in Oregon around. I am only one person fighting multiple entities that will continue to lie and cover up the truth about MHS. I don’t have the backing I need to create state-wide change, but fighting for my community to have access to information is important to me. My hope is that PLWHA in Oregon will take MHS more seriously and we can come together to mobilize around this issue. The folks in power will have no choice but to listen to us and acknowledge our concerns! Our resistance will make people angry but as a community we can hold decision makers accountable. 

Being who I am, I will continue to vocalize how harmful  MHS is and its  direct linkage to criminalization. My community deserves to know the risk and understand how their data is being used and survelled. There will always be folks who just don’t want to hear about it and will continue to go about their day. I will continue to put information out and educate folks, even if it takes talking to one person at a time.

Eventually the seed grows and people will start to grasp exactly how Molecular HIV Surveillance (MHS) directly impacts us and our daily lives! “We Are People and Not Clusters!”