Trans advocates have forged our own paths and led efforts where there were none. The CDC needs to meet our experts on equal ground and acknowledge this divide that it too has been guilty of perpetuating.
“Nothing is developed for us, without us,” Arianna Lint said as she handed the Centers for Disease Control and Prevention (CDC) director, Robert Redfield, a copy of Positively Trans’ new needs assessment of transgender and gender nonconforming people living with HIV. Lint was joined by a large group of people living with HIV on stage at the United States Conference on AIDS in Washington, D.C., earlier this month to disrupt the opening plenary with Redfield and create a dialogue where there wasn’t one.
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I feel that the most important message people need to get from my community about living with HIV is that we are not the stigmas that they have come to know. That every day, every week, every month and every year we are thriving through life. For those who have the courage to be open about the status we are being vulnerable and being ourselves. We have decided to become more than a status.
The most important lesson or message for the community about living with HIV is that treatment is available to control HIV. The best scenario I use is you are always in total control when operating a vehicle. HIV is always in the back seat as your passenger. Follow all the rules with taking your medication. Along with treatment, getting in and staying in care. At times you may have to switch around to get the perfect fit of a great primary care physician. Since being with the Campaign it has given me the opportunity to become a better advocate by raising hell if something is not right and not going with the flow. Very likely not having some type of bond or feeling uncomfortable with you primary care physician at times may make you feel the need to drop out of care. Do Not. Fire them and get someone that will work with you and encourage you through the process. Remember you are the one in total control with HIV in the backseat.
I believe the U=U message (undetectable equals untransmittable) can be a big part of decreasing the stigma, myths and fear some still have of HIV, and of people living with it. Now with good medication adherence, there is hope of enjoying a better quality of life and living longer than ever before. Viral suppression stops HIV transmission through sex and that is good news for all of us. I know it has made me feel better about my future. HIV is everyone’s problem and we all need to do our part to end the epidemic. The HIV Stops With Me Campaign has brought much needed public awareness towards those of us living with HIV and I am honored to be part of it!
The most important lesson that I learned about the community that I live in this year is that true “power” comes from standing in my truth and walking the path laid out before me without fear or reservation. After becoming a part of the HIV Stops with Me Campaign, I had very high hopes of making new friends and having people that I could connect with on a very personal level, people who would understand the darkest and loneliest parts of this journey. What I found, as I laid out my plan to challenge stigma and build a community of purpose was an indifference, that I never experienced before, nor did I expect. People in my inner circle who shared the same diagnosis, who were a part of the support network I belonged to, started to distance themselves from me, I had “come out of the closet with my diagnosis”. They did not want people to speculate about their status because they “hung out with me”. My initial reaction was one of hurt, but as time passed and my momentum as a leader in the community began to build, their departure was of no consequence, I was too busy getting the job done to give it a second thought. The lesson in that was: “as you are leveling up, everyone is not supposed to go with you, they are not equipped for the journey”. I have also learned that no matter what kind of challenges or difficulties I go through living with HIV that I have something deep within myself, that I can reach inside and find the inner strength to get through it. And these things that have become part of the message of hope and resilience that I continue to convey in word and deed, every day.
We have come a very long way. Education is a key in ending stigma. Together we can make a difference. Many of us who are fighting this war, cannot stress enough the importance of ending the epidemic. It has been a long and rough journey. However we are finally making a difference. We are strong in our beliefs, but our willingness for survival goes beyond what we believe, it is helping us continue to progress. I am proud to say I am much more involved making the right choices for myself, while educating my community- I am practicing what I preach.
That there are still many within the Latino community that do not know or do not want to know their status. I often talk to people that are either too scared to know or they still think that it could not happen to them because they do not inject drugs. I am constantly talking about how you do not have to be an IV drug user to become HIV positive. I want everyone to know their status. On the other side of that coin are the people that are dealing with their diagnosis with little concern. They still have not grasped the importance of being adherent to HIV medications and doctor visits. I want my community to understand that PLWHA are living long, productive lives, because of taking medications and continuing to follow up with their medical providers. I am grateful that I have friends, family, and providers that have continuously helped me along this journey, and are always there for me when I need them. This has not been an easy journey but with love and support from others it has been an amazing one for me.
The message/lesson that I would like people to take in about my community and living with HIV is that we live just as normal as someone without HIV. It does not make me less human or less of a man. It makes me a survivor, not a victim and I am blessed for it.
Looking back on 2019 the most important message that I feel people need to get about my community and living with HIV is that we now live in a time which allows people living with HIV to experience life while being apart of life. People living with HIV are no longer just existing with no sign of hope due to many breakdowns within already established systems. People living with HIV are living today not only because of themselves and undoubtedly their will to live, but couple that with the action and courage of “others” and others being the countless allies and partnerships made over three decades of relentless efforts to ensure that healthcare laws were passed and therefore lives would be saved. Here we are today sharing with the world that “I AM U” Undetectable= Untransmittable. Who could have imagined such a reality. It is ok to be scared or have fears about HIV that is natural, so I would like to encourage those that may have these feelings to research about what resources are available in your area or nearby to aide you further in educating yourself about the importance of knowing your status. Everyone has a status, it is our responsibility to know what it is. Let us save others by saving ourselves, by doing these Three things: 1. Get Tested! 2.End Stigma! 3. Build Community! We are more than the Epidemic We are more than HIV #IAMU
The message I can relay to my community the HIV Community is You are not ALONE. There are so many people I have met, worked with and/or helped who feel that they are alone with their thoughts and feelings. I am working with a client who for 20 plus years has not told anyone she is HIV positive. Not even her children. Until I revealed I am positive she was alone with her feelings. I opened up a door to the community that is parties, dinners, events, trips, mentors, support groups, women groups, etc. She had no idea this connection and support existed, and thus she was alone with her diagnosis, depression, and questions. Never think you are alone, that no one knows or understands what you are going through. There are so many people that are willing to help, guide, support and befriend you.
I would like us to focus highly on educating all communities not just MSM or LGBT. U=U needs to be talked about with prevention efforts such as PrEP. Doctors also need to be educated on this matter a whole lot better, such as the OBGYN’s that believe this will weaken women’s bodies and put them at risk for miscarriages. We need to dispel the myth that you are on PrEP then you are gay, or already have HIV. These are beliefs I encounter when doing outreach. So I say education and communication are important and the messages should be tailored to fit the communities being engaged, because we need to meet people where they are at.
Looking back on 2019…U=U, Undetectable equals Untransmittable is the most important lesson/message people need to get. The only way anyone can receive medication/treatment for HIV is if they get tested. Then into care and treatment in order to achieve an undetectable viral load…This means that then they cannot transmit HIV sexually. This, plus continuing to work diligently on removing the stigma by educating our communities, is how we will end the epidemic.