World AIDS Day, December 1, will mark the launch of a national council of youth activists who are living with HIV. Known as ECHO (Engaging Communities around HIV Organizing), the council will focus on decriminalizing HIV and eradicating stigma, according to a press release by Advocates for Youth, the organization that founded ECHO, trained its members and supports the sexual health and rights of young people.
Read more here.
The impact I would like to have in the community is my take home message that I always use when doing community outreach. This message is about communication with your partner or potential partner(s). Having an open dialogue about U=U or PrEP (if one person is HIV negative) is what I believe is a critical step in lowering the transmission rates of HIV. Having those heart to heart conversations before the clothes come off. Because Babyyyy, Communication never happens when clothes are off.
I am a spokesmodel because I became an example in my community where people can “think they are safe,” but actually be in a comfortable danger that can be fatal to their identity. For many years I worked in the healthcare field as an advocate, had plenty of knowledge yet unconscious pain. Those years of not dealing with that pain and having an acceptance issue, needing to be apart of everything. I believe lead me down this path. So I choose to stand for “Better Days.” I find this opportunity to be one of many bold statements. I Am U…. I/You can be anything and therefore… I am U. My message, our message for all to hear is Love beyond words, love beyond action.
It is Senior Year and it is the last day of class, as I sit with excitement my mind is just thinking about how I can continue to give back to the community by being a blood and platelets donor? See now by this time I have been donating blood throughout my whole high school years, doing this brought me great satisfaction because I knew it would help those in need. This project was so dear to me because my mother had suffered with a blood issue my entire life. It is now 3 years post high school graduation and I find myself working at a temp agency and guess where they placed me? I was now working for American Red Cross (ARC) and my job was to call people who had donated platelets before and to see if they wanted to donate again. At this point I am filled with joy because I have a chance to donate again so that is actually what I did. Again this was about helping to save lives. Now the standard of protocol was after one has donated you would receive a thank you letter urging you to donate again. Sadly, to say this go round I did not receive a letter. Two weeks go by and I come home to find in the mail a letter from ARC I was so excited upon opening the letter my heart dropped. It was not a letter of thank you but rather a letter saying we found some antibody your results are abnormal. It was then in 2004 that I found out I was HIV positive. I had only been sexually active once with a male and prior to that several times with a female. After the letter I began to educate myself on how the virus worked and how I could live a healthy life despite this new diagnosis. The key is taking your regiment as directed, minimizing substance use or none at all, and routine blood work. By being compliant I managed to get to a status of UNDETECTABLE. Now here I am 15 years later. I am healthy and alive “I Beat It”. Today I have found myself giving back to my community in many ways and one is by serving as a primary HIV/HEPC tester at In Our Own Voices and Making sure that testing is free and available to all with a P.O.C focus. Knowing your status will not only save your life but also saves others; just as being a spokesmodel will allow me to do so, by sharing the message that undetectable=untransmittable. #IAMU#Undetectable=Untranslatable
Being asked to be a spokesmodel for the 2019 campaign HIV STOPS WITH ME became the highlight of my life. As a Peer Educator, Facilitator, and Speaker I am able to educate and help a limited amount of people. Sometimes it is during an occasion which I may never see them again or did not give out my contact information. In becoming a spokesmodel provides recognition, puts me in contact with more new people who I can help. It also allows me the opportunity to reconnect with those I met at past events such as conferences, health fairs etc. I received a message on Facebook last week from an older female who saw my poster and remembered. The poster location is in the Bronx, N.Y. (173rd and Webster Ave). She asked me questions about depression and widowhood and how I was dealing with it. Others have reached out via the site congratulating me and giving warm wishes and thanking me for the work I have done in the past and now. My wish is to reach the women who are without partners, husbands, living alone and depressed because society has told us that as women we should have a man. Some are still grieving, feeling helpless after being a caretaker for others it is hard to take care of yourself. I would like to set the example that you can live alone and not be lonely. I am 55 years old I have good friends, family members and three daughters who I travel with, wine and dine, viewing museums and art galleries, shopping concerts, etc. Sharing my interests, thoughts, and feelings with those I love and care about. On Thursday April 4th, I spoke on this very topic at ACRIA’S 2019 Women’s Conference held in NYC. I must have made an impression for Dr. Stephen Karpiak, Associate Director of Research at ACRIA Inc. to ask me back again for the third time discussing the topic of Women over 50 with HIV who are living with depression; because they live alone, are lonely and/or do not have a partner. Whatever the reason I am honored and blessed to be the one that others feel can help my community, Women who are HIV positive.
Being a spokesmodel is important to me because it means I get to start a conversation about living with HIV. I can talk to people who have fear, concerns, or questions. The impact that I would like to make on my community is for people not to hide or be afraid to get tested, or if they are tested and have a positive reaction know that it is going to be alright. I would tell people that I was diagnosed with AIDS in 2006, at the same time I had to be put in a coma to prevent my vitals from tanking(death). After being in the hospital 27 days, I weighed 97 pounds, was on 14 medications, I was released, told I would not walk again and to apply for SSI. I want my specific impact to be “Get tested and get into treatment”. Both saved my life, and by being adherent, taking my meds, going to therapy I was able to walk again. Now I am undetectable, I am a case manager and counselor for New York Harm Reduction Educators, and most importantly I am living my best life like each one of you. At the end of the day, I AM U.
Being a spokesmodel is so important to me because of the effect it has. I see the effect each time I speak in a class or during an event. I see it every time someone recognizes me from a poster or video. The look on people’s faces, in their eyes, even their body language and how they look at me, everything about them changes in that moment. That moment is priceless to me. When I tell them my story or facts about HIV they never knew, it’s like they suddenly see me as someone else and then they see themselves in a different light. It’s truly amazing. All the positives that come from being a spokesmodel are great, but the effect it has on individual people is the reason why I do it and is the most important part to me. The impact I want to have on my community is the same it has always been, to help individual people. To reach out to that kid out there who thinks they are all alone. To talk to the drug addict and let them know that there is a light at the end of the tunnel. To tell the newly diagnosed that it is not the end of the world, there is always a tomorrow. If I can reach even just one person this entire campaign then it has been worth it. If any good can come out of the wreck my life once was then this is it and HIV Stops With Me is how I can do it.
Being a spokesmodel is important to me because I feel like I have changed coming out to my family and friends. I am not ashamed to tell people my experience about living with HIV. I also know that as long as I commit to taking my meds and keeping regular doctor’s appointments I will be able to live a healthy life. What I plan on doing for my community is to hit the ground running by going to parks, schools, public events, free concerts, and speaking engagement around the city promoting the HIV STOP WITH ME: I AM U campaign, the U=U movement overall , and promoting PrEP, so that my community can have the knowledge to protect itself.
As a spokesmodel I am a role model and able to teach young newly infected PLWHA/HEPC that there are steps they can take to become undetectable/cured including connecting with organizations and people to ensure that access to medications is a viable option. As a community activist I would like to influence young people to do more in their neighborhood and peer groups.
I am honored to be a spokesmodel this year because, I am proud of being a representative of the Transgender Community. I have been busy at several events already thus far as a spokesmodel and it has allowed me the opportunity to show the World that we are more than statistics. I am looking forward to building a platform for my community to be able to speak its narrative and live in its authentic truth unapologetically.
Being a Spokesmodel for this campaign is important to me because it expands my platform as an Educator, Community Leader, and Advocate. I have been concentrating on Community Building as it relates to all people. It is my opinion that the fight against HIV has divided communities. My participation in this campaign and leadership in this community is a vehicle for me to deliver a message to all people, whether, black or white, gay or straight. I AM U in my opinion is about being able to relate to all people. A specific example of something that I have in mind is organizing community events that are inclusive. This will foster diversity; the opinions and unique contributions each person has to offer can be utilized to create unity. In a truly inclusive setting, every person feels safe and has a sense of belonging. People can participate in setting standards for care and take part in decisions that impact the entire community.
Being a spokesmodel is important to me because I have the ability to improve a person’s quality of life by speaking to them or have them listening to my/our stories. I would like to get in to the prison system more this year. Having been incarcerated, I have seen a need for services pertaining to HIV/AIDS prevention and awareness.
Being a spokesmodel for the HIV Stops With Me campaign affords me the honor to put my face out there and show the world that people living with HIV/AIDS come in all races, genders, and ages. It is important that people see diversity when they look at the site, posters, palm cards, and billboards because many still think HIV only happens to certain populations. My hope is that when folks see or meet a 61 year old caucasian, heterosexual woman living with HIV for 33 years many of the myths will be eradicated. Putting the U=U message out there also can help people who are uneducated about HIV understand the importance of an undetectable viral load and can help educate them about transmission myths and hopefully lessen the long term stigma attached to HIV. I would like to plan some kind of event in the upcoming year with older people who may be at risk for HIV and educate them about the importance of safer sex with partners of unknown HIV status, U=U, PrEP, treatment as prevention and the importance of testing regularly if they are sexually active even if they are married. I have already made a small impact on my community when I disclosed my HIV status and educated some people in my town who I walk with several times a week and it felt good to know I was bringing much needed awareness to HIV, especially when one lady said to me “Are people still getting HIV?” HIV education is still needed so many still just do not know enough.
Being a spokesmodel is important to me because it gives me the opportunity to reach people on a broader range outside of my community. It allows me the opportunity to help raise awareness about how far HIV/AIDS treatments has come. I am the face that is not ashamed of sharing with the world my HIV/AIDS status.
The impact I would like to make on my community in 2019, letting PLWHA know it is important to get treatment and be adherent to medication. Doing this helps us become undetectable and that “I, WE” do not transmit the virus to anyone sexually. Treatment has come a long way and we can live to become who we want to be.
Being a spokesmodel is important to me because it gives me a platform to express to everyone the importance of knowing their status, preventing the spread of HIV, and getting and staying on medication. My community needs to know that HIV is not a contained virus, and hits every family in our community and surrounding areas. HIV is no longer a death sentence, people are living longer and healthier lives by getting and staying on their meds.
To me being a spokesmodel means that I can talk about HIV and really know that I am teaching everyone that I am living a positive life with HIV. It is also important that through being a spokesmodel I would like for others to view me as their equal and not as someone who has a disease. I want this not just for myself but for others living with HIV to be treated better and for people not to fear them because they are HIV positive. Because when people are afraid they discriminate. As for my community I want it to be well informed, well educated, and unafraid of the unknown. This is why I stand before everyone and speak on something that really is taboo in my Hispanic community. I want it to be discussed without hurting anyone else. People need to understand and see PLWHA are still living creatures of God.