Posts Tagged ‘living with hiv/aids’

“She grabbed me in her arms, put me in her arms, and whispered in my ear ‘we will get through this’ to hear those words by my mother were like…it was the most amazing moment in life.”

Adrian Neil Jr. Shares his heart warming story about when he was first diagnosed.



On the Daybreak this morning, Noel Cayasso-Smith and guest speaker Thomas Davis talk about CAF’s mission.

Mr. Davis’ presentation will focus on the stigma and discrimination with persons living with HIV/AIDS.

Mr. Cayasso-Smith says that there’s so much discrimination and that it has stopped people from getting tested.”It’s a community awareness thing with the stigma and awareness that we are trying to break,” he said.

Mr. Davis shares his story of when he was diagnosed with HIV in his early 20′s. He also said education is important and that not educating young people can cause more harm than good.

This is the third year that CAF has hosted this event.

Thomas shares the moment when he told his parents he was HIV+ and talks about what the year was like disclosing.

Sources: CDC Fact sheets (Understanding the continuum)


Alexandria Health Department – Photo by Todd Franson

Rainbow Tuesdays is a clinic that I started to volunteer at when I initially started working in HIV.  This clinic is every Tuesday between 5:00pm-6:30pm and offers screenings for STIs (Gonorrhea, Chlamydia, and Syphilis) and rapid/confirmatory testing for HIV. Hepatitis B vaccinations are also available as well. This clinic is run by gay, bisexual, queer, same gender-loving men and their allies.  I also find it amazing that the staff can also see individuals of the Trans experience!  Generally this clinic is not like others in the area (including some in DC that can get pretty crazy with line) and although it may not be directly off the metro you can navigate it by easily taking a bus, which will drop you just feet away from the Alexandria Health Department (7A or 7F from Pentagon Metro Station).

Debby Dimon, who is Nurse Supervisor at the Alexandria Health Department, oversees the Rainbow Tuesdays Clinic and provided us with some history. “Rainbow Tuesdays clinic started in July 2009 because of the Syphilis outbreak in Northern Virginia and the absence of stigma-free health care to meet the needs Gay, Bisexual, Transgender, Queer and Same Gender Loving Men. It started as a screening clinic the second and fourth Tuesday of every month at Alexandria Health Department working in collaboration with the HIV prevention nonprofit organizations (Inova Juniper Program, K.I. Services, Inc. and NOVAM) with other organization serving on the Advisory Committee,” says Dimon.  Her personal goal is to provide syphilis testing and treatment for every gay/bi/queer/sgl man and Trans woman to stop the spread of the curable bacterial infection.  A special exclusive that we were able to gain was that Debby plans on providing Hep A/B/C testing in the new year!

The Rainbow Tuesdays Clinic Program is a partnership that fully engages the community to foster trust and awareness of services among of men having sex with men to encourage those at risk for HIV and/or sexually transmitted infections to seek services and refer others potentially exposed for services. If you are ever free, in the need for screening/treatment or want to know more about the Rainbow Tuesdays Clinic then stop by the Alexandria Health Department during clinic hours.


Ken Williams

There are a few things I want you to know about my positive experience. Whether you’ve worked in HIV for decades or are new to the epidemic, we all start somewhere. I’m a filmmaker and, ironically, my first introduction to the epidemic was through film. It was film where I started and film where I continue to this day.

Well before I became positive, my first in-depth look into the HIV epidemic was through the lens of a film called Philadelphia. For two hours I watched Tom Hanks’ character die on screen. What I took away from watching Philadelphia was that the typical HIV positive experience can be one of rejection and discrimination. It can be a stigmatized and demoralizing experience. Some people may think that your fate is considered your fault. As a person who has been living with HIV for four years, I now know this is not true.

The truth about my positive experience is that my life can often be seriously impacted by the social and physical implications of living with HIV. Almost every day, living with HIV means something different to me. Some days I feel hopeful because I take my medications and stay in care, while on other days, I feel shame because I am confronted head on by the stigma that is associated with living with HIV, leaving me feeling that I need to remain silent about my disease for fear of ridicule; the expectation that I must be dangerous because I am living with HIV. Having tested HIV positive just 4 years ago, I am still adjusting. Adjusting to how best to deal with stigma; how best to understand and manage what is happening in my body; how best to keep moving forward.

Much of this adjustment, for me, at least, is best handled by practicing optimism instead of fear. Optimism brought on by scientific advances; optimism brought on by my own personal growth and understanding of how to live a healthy life with HIV; and optimism that we are now talking about the real possibility of a generation free of HIV/AIDS. I learn daily and I listen to the outpouring of similar stories in my community and I take my meds and I live! I live despite the stigma. I live despite the fear. I share my story behind and in front of the camera and through these stories and connections I stay hopeful. I hope for an AIDS-free generation and a generation free of the stigma and fear and blame. I hope for a generation where I can continue to share my truths. My optimism drives me to want to see that generation.

What are you doing each day to bring us all to an AIDS-free generation?

– See more at:



I am honestly excited about this project and want to see it succeed. Currently, there are no programs that discuss life living with HIV from a protagonist and their point of view.  This is something that we so desperately need to educate more individuals, break down stigma, but most importantly have something that us individuals living with HIV can related to.   Please check out for more information on the project and the kickstarter campaign!


fc85e3031fe45518fddd2a7b49360d42_large Real HIV? Nowhere on T.V.! This series will explore many of the issues that affect HIV-positive people as they live on, and stay positive. Unsure/Positive is a Dramedy. What exactly is a Dramedy, you ask? Also known as tragicomedy, comedic drama, seriocomedy, or Unsure/Positive (the Series). Humor and Drama combined! A hybrid! The primary goal of the series is to entertain. Fair warning: we may entertain you *while* raising awareness about life with HIV. In an age of mobile devices, hookup culture, antiretroviral treatments, and the ongoing stigma that resonates with our own societal fears, Unsure/Positive offers a healthy dose of reality, honesty, and humor. You haven’t seen anything like this (because we’re still busy making it happen!) We have a fantastic cast, a baller crew, and we’re itching to get started– so much so that we already shot the first ten pages of our script on July 12th and 13th, 2014— well before securing our Kickstarter funding. The plan? To show you what you’re backing. Our sneak preview can be viewed right here: HIV is no longer a death sentence. That’s (somewhat) common knowledge… so much so that the other complications of living with the disease often get overlooked. The social stigma of an HIV-positive diagnosis is, on its own, a serious ongoing issue for “poz” persons. Unsure/Positive will explore this, and also the variety of situations– stark and mundane– that come up when human beings try to grapple with this complicated disease. With Your Help They Can:

  • Pay our professional director of photography, Ben Proulx (this is the guy in charge of the camera!)
  • Feed our cast and crew for (at least) 8 days (nom-nom!)
  • Pay our awesome, hardworking crewpeoples
  • Cover the cost of liability insurance
  • Secure a U-Haul for equipment pick-up and return
  • Buy cases of water for our set (You don’t know muggy till you’ve been in Boston in August!)
  • Buy a hard-drive on which to save all our footage
  • Buy a second hard-drive. (Just in case!)
  • Work with a professional sound mixer during post production
  • Work with a professional colorist during post production
  • And more!

Thanks in advance for supporting our project. We look forward to bringing you this brand new series very soon!

Unsure/Positive faces the challenge of combating the stigma associated with HIV/AIDS– many people are reluctant to fund the project only because of the negativity associated with these acronyms. One possible risk is that this stigma will undermine our efforts to reach a wide audience. We feel this is an ongoing challenge– but you can bet we’re here to fight the good fight. While stylistically our project is a “single camera” show, much of Unsure/Positive will be shot with two cameras. This means extra crew and personnel to manage the production. Translation: it’s not cheap! (But the good stuff rarely is.) We are very much a grassroots production and support from you, our community, will help make this project a success. Please let us know if you have any questions or concerns, and thank you for your continued support!

Black Voices: Having (and Using) My Voice To Address Stigma

Check out my newest article with!  So excited to be able to have a platform to get the word out.


So remember when I said I was going to involve more individuals and their stories on HIV, LGBTQ issues, or anything they want to sound off about?  Well National Black HIV AIDS Awareness Day is here and I am proud to present to you a blog by my friend and colleague Kemisha.  


ImageBefore I became involved in the field of HIV/AIDS, I thought I knew all there is to know about it.  I knew it was something you could get through having sex or by IV drug use and it was something you wanted to avoid. I believed that if you did have it meant that you were being reckless with your body and did it to yourself. I always saw it as you made a mistake with your sexual activity and now you have to deal with it.  I was fortunate enough to go to schools, especially a high school where comprehensive sexual education was taught. I will say that even though I knew the do’s and don’ts of sex, that doesn’t mean that I always made the best decisions for myself. Yes, I knew that HIV/AIDS was something that was really out there but I also felt as if it was something that would never happen to me. I had that feeling of being invincible, a feeling that I think a lot of teenagers had at that time. When I think back to that time frame I will say that I did take a lot of risk. I wasn’t running around having sex with multiple partners but the person I did chose to have sex with, we never had the conversation about our sexual history. We never asked each other “have you ever been tested for HIV”, “when was your last STD screening”. It was more like we just believed that if there was something to be told that the person would say it.  Now that I look at it, that is a scary thought. By not choosing to ask those questions and trusting that person with my body, I was taking a chance with my body and my life every single time.

When I went to college, I started as an Athletic Training major and loved it. Two and half years into the program I realized that I no longer had the passion for it, I wanted to change my major but still be involved in Health. My professor recommended the Health Promotion program to me. It was there in that program I became very interested in HIV/AIDS. I began volunteering with the Wellness, Alcohol, and Violence Education Services (WAVES) office at George Mason University. The first program I helped with was the HIV/AIDS awareness week and from there I became hooked.  I took a class called Interventions on Populations at Risk. I chose to do and intervention for high school teenagers geared toward sexual education to help lower the high rates of teen pregnancy. After that course I had to take a course in Research Methods, I took the information I gathered in the previous class and took it a step further for this one. My final research paper for undergraduate degree was based on whether sexual education courses had an effect on the actual sexual activity of teenagers.

In order to complete undergrad I needed to complete 400hrs of a health related internship. The first internship was all set and ready to go and at the last minute the organization lost the funding to host and intern. I then came across Fredericksburg Area HIV/AIDS Support Services (FAHASS). They decided to take me on as an intern and it was a perfect fit because this was the field I definitely wanted to work in. While interning here I learned so much information that I didn’t know.  From understanding what exactly HIV does once it’s inside your body, to what the experience of having an HIV test done is, even an understanding and different out look on what its like for people living with HIV. I have learned about the services people that are living with HIV are eligible for that I had no clue about before interning here. My eyes were opened to so many things that I had no idea of; it showed me that there is always more to learn and not everything on the surface is the whole story. It allowed me to see that everyone’s story is different and you cant generalize people in the same category.

I was fortunate enough to receive a part time position with FAHASS and then eventually a full time position as a Prevention Specialist after my internship with them. I now do testing under the Care and Prevention of the United States grant (CAPUS). This specifically focuses on African Americans and Latinos. Now that I am out there in the field-testing, it is eye opening. In the rural community of Fredericksburg that I work in, I have seen how uneducated people are on the topic of HIV. Some people have no idea what HIV even stands for and it amazes me that this happens especially when there are so many resources for them to receive that information and begin to process and understand it. It feels good when I am able to give people information on HIV and see that they are interested in what I am saying. They are learning and becoming informed about it. I can only hope that they are passing on this new knowledge to others because it is something that needs to be shared with others.

Every day I learn something new being with this organization and it is only growing my knowledge base of HIV/AIDS. If I do not know something I have no problems asking questions because I believe that the more I know the better equipped I am to help educate people about HIV/AIDS and give them the tools to help make better decisions for themselves.  Eventually my ultimate goal is to help work on the different HIV/AIDS initiatives in the Caribbean. They are doing the best they can with what they have now and I commend than for all their efforts but I feel that more could be done. They really need to break into the communities and push outreach and testing and having those conversations but it is very hard to do that when there is still such high stigma associated with HIV and such strong stances against things such as, homosexuality. These walls need to be broken down in order to effectively provide the best outreach, prevention and care services to the people of these islands and their communities.

Kemisha is currently the prevention specialist at FAHASS, and just like many of us in prevention is continuing to learn more about the field every single day.  If you are interested in sharing your story with email


New Year New Us!

So bringing in 2014 there will be many of our loved ones, friends, family, colleagues, and strangers who will be ready to begin their New Year Resolutions in hopes of completing them all by the end of the year.  Let’s be honest though, who ever completes every single New Years’ Resolutions?  This year I plan to do something different that I think will be successful and I invite you all to do the same.

I often tell people that my HIV diagnosis two years ago involved me going through a sort of metamorphosis.  During this process I evolved as a person, on very physical, emotional, and spiritual levels that were all for good.  I saw things more clearly and made a point to go forward with any dreams I had.  Can anyone relate?  As an 18 year old in high school I wanted to do it all.  From an officer in the United States Coast Guard, a professional tennis player, entertainer, author, a business owner, and married to the most perfect partner with the most phenomenal family.   I honestly wanted to have it all.  As time went on and my dream of not making it in the military and my tennis lacking success, I began not to day dream as much about those potentials.  Days that were once spent always day dreaming about my potential future became replaced with more “realistic ideas,” that were more fitting of survival in this world.  When I was diagnosed with HIV my eyes flashed before my eyes.  Like I talk about in one of my first videos I could have easily not have opted to test for HIV.  By not testing my plan was to remain in denial for the rest of my life.  Due to this life-changing event I made a choice to look at all of my dreams again and find ways to make them happen.

How is this relevant many of you may ask?  Well it is simple.  As Brian Litrell says, “Shoot for the moon. Even if you miss, you’ll land among the stars.”  I looked at ways I can give back to my community (advocating and speaking out about different things that negatively affect it).  Although there are policies that prevent me from serving in the military there is hope, and we should definitely continue to pressure Congress and the Department of Defense in allowing individuals living with HIV to serve their country.  I also started playing a tennis league and also starting to look for opportunities like using YouTube for my video blogging, singing, and other projects like the MTV documentary to entertain individuals from around the world.  In 2014 I will also be focusing time on my book and creating a line of products I hope you all will enjoy.

I think it is important that we all reach out for our dreams and wants, no matter what they are.  Illnesses or even failure should not keep us from fighting what we want.  If we pray on our dreams, continue to work on them, and have affirmations then they will happen.  Affirmations are very important and Dr. Harra explains this very well in her Huffington Post Article.    Even if you are completing them at 50% that is better than never thinking you can.

  My three challenges for you all this year is very simple:

  1. 1.    Be there for others because there is always room to do more in this department.  Even by giving a friend a hug, a text during the day saying you are thinking of them, a nice thank you message to your boss (even if they are incompetent), and even saying congratulations or liking a comment of a rival are ways you can be there for others.  Volunteering your time or even donating to an AIDS Service Organization (ASO) or Community Based Organization (CBO) can be a way to give back.  A database of such organizations can be found here.
  2. 2.    Patching up issues with adversaries.  This is something that is very hard for me.  This will be tough for me because I may forget about the past but never forget, which can affect my actions.  We should learn how to forgive people for what they do and say.  No one is perfect so apologies are definitely fitting.  Our egos can be huge barriers at times where reconciliation can take place.
  3. 3.    Personal Growth can take place is so many different forms.  This can be traveling more, taking more vacations, learning a new skill, making new friends, soul searching, and even getting to a place where you can be more open about your HIV status. Personal growth can also include things professionally.  There is always room for self-improvement and we should always look at ways to better ourselves.

These three simple things can reach literally every goal people make each year.  I also think that to be able to accomplish these goals we have to have more realistic expectations.  A perfect example is how in the first of the year gyms see an increase of activity that soon tapers off by February/March.  By easing into to being physically active and going to the gym on a more consistent basis you start of small with goals like going at least 3 times a week for an hour or so, and then increasing it weekly with an additional day until you are going at a frequency that balances out in your everyday life.  Writing my book has seriously resulted in nothing ever happening past a few sentences a quarter; however, now I will dedicate a few minutes out of the day to brainstorm and write a few things.  The following month I will increase my writing to something more consistent and realistic to completing by the end of the year.  Fixing interpersonal issues can take place with exes, ex-friends, lack of a father-son relationship, etc.  They may not be enemies but I think that working on improving communication and ending conflicts helps to relieve stress and drama in one’s life.

In 2014 will you work on reaching the moon by having reasonable expectations and progress that will take place over time? Or will you rush into something head on, burn out, and give up halfway through?  Again HIV does not mean we cannot accomplish our dreams, so we must make sure that we don’t give up if we hit a brick wall.  Breaking through that wall and overcoming our fears and anxieties about such possibilities will result in us having success on some level.

IMG_0766  In this New Year and beyond it is important to simply do what is best for you.  Also, keeping in mind that this also includes doing what is needed to manage your HIV and all other outside sources that may influence it.  If anyone has issues with you or the healthier choices you are making to better yourself, then be the fabulous person you are and keep on strutting into the future!


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During the first week of November, ViiV Healthcare welcomed invited individuals from across The United States, Puerto Rico, and Canada to Atlanta, Georgia for the 15th Annual Community Summit.  I became familiar with the summit during the U.S. Conference on AIDS and was immediately interested.  I arrived to Atlanta on November 7 and made it to the W Midtown.  I made it to the posh hotel were the next few days came and gone.  I reunited with friends and colleagues that I have known as well as new ones I met at USCA 2013 in New Orleans.   The Community Summit also gave me and others in attendance the ability to expand my network, make new contacts, and form new friendships.

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The purpose of this year’s Summit is to discuss new challenges and solutions to the HIV epidemic.  I experienced some of the greatest discussions this year.   Topics ranged from surrounding the changing healthcare environment to how the Affordable Care Act and the changes to the Ryan White HIV/AIDS Program will affect the HIV population in our country.  Also, there was a phenomenal panel discussion titled “The Future Generation: Youth Leaders in HIV/AIDS.”  The informative yet entertaining, Trina Scott Associate Director, Health Equity and Youth Empowerment at Advocates for Youth moderated this discussion.   On the panel was Emily Carson from IGLHRC and HIV Young Leaders Fund, as well as Lawrence Stallworth II, Youth Services Coordinator at Beyond Identities Community Center.  Trina Scott provided a briefing regarding HIV, which gave great insight to those who attended both physically and virtually.  Ms. Scott gave some staggering statics:


  • 60% of new HIV infections in youth occur in African-Americans, 20% in Hispanic/Latinos, and 20% in Whites.
  • Over half of new infections among gay and bisexual males are in African-Americans
  • About 87% of young males get HIV from male to male sex, 6% from heterosexual sex, 2% from injection drug use, and about 5% from a combination of male-to-male sex and injection drug use.
  • 86% of young females got HIV through heterosexual sex and 13% from injection drug use

One of the final statistics that were given that reiterated the sizeable epidemic among African-Americans were that young African-American males have more new infections of HIV than in any other group of youth by race/ethnicity and sex.  Outside of these staggering numbers the entire panel discussed interventions, prevention initiatives, and strategies that have been effective at reaching youth who are at most risk of HIV infection.  During the question and answer portion, I posed a question, which was how we empower more youth national, more specifically in the south, to be advocates for themselves and their communities.  Ms. Scott and the panel agreed that giving youth the opportunity to utilize their talents, having a seat on a board, being placed in leadership positions, and most importantly creating a space for youth to be empowered enough to speak up were things that we discussed.  Also, the entire panel agreed to my question, that comprehensive sexual education in schools (beyond abstinence based talks) and encouraging adults to talk about sexual health and ways to protect or reduce the chances of being infected wit HIV or STDs are actions that must take place.


In addition, on day one, there was a panel discussion on ASOs and Community Health Centers: Partnering for Health.  This discussion was very interesting because it discussed how ASOs and CBOs were being creative and evolving in an effort to expand services to individuals affected by HIV and to adapt to the changing policies.  One of the major topics discussed in this panel discussion was merger.  One of the things I took away was that it was more important to discuss potential mergers when organizations were healthy compared to when they are struggling to make ends meet.  I learned that when organizations are not healthy and are looking to merge the conversation is no longer about merging but move to acquisition.  One thing that every individual on that panel discussion stressed was that egos definitely needed to moved aside at the door.  Bronx- based Boom!Health can related to that due to both Robert Cordero and José Dávila, serving as Co-Presidents through a merger of  CitiWide Harm Reduction and Bronx AIDS Services.  Both organizations’ presidents came together to work for the common good of their community, which can serve as a lesson for so many different community based organizations who refuse to do so based off of conflicting personalities.  The Community Summit definitely was a place to have this conversation so the attendees from across the nation can go back to their organizations and remind their leaders of the impeding changes that will soon take effect for all of us who work in HIV.

IMG_1058 I personally think that ASOs/CBOs really need to start considering potential mergers and partnerships when negotiations can commence on an even playing field.  Seeing so many organizations either struggling or closing and personally affected has encouraged me to being to have that conversation with my own organization.

This year’s ViiV Community Summit had other fantastic sessions surrounding medical updates, PrEP/PEP, and early treatment.  The shared detailed community and medical information impressed me.  ViiV also flipped the script this year by offering breakout sessions on Women and HIV/AIDS, HIV and Aging, and Bio Statistics in HIV Research. IMG_2346 IMG_2345 IMG_2344

I attended both the sessions on Women and HIV/AIDS and Bio Statics in HIV Research.  It was great to learn additional information on how Women are also greatly affected by HIV/AIDS.   Especially in a field where it is so easy to focus on same gender loving men. I also appreciated the free biostatistics course that tied in HIV research.  The presenter Amy Cutrell from GlaxoSmithKline definitely made it easy to understand the complexities that surround bio stats.

Overall, this was an experience of a lifetime. The speakers came from all occupations and provided information and stories. Stories on how it was like living with HIV in prisons and receiving updates from the CDC were just the icing on an amazing peanut butter chocolate cake. In addition, as a youth, being able to connect with so many knowledgeable individuals in this field has given me additional insight.  There may not have been a huge attendance of youth at this year’s summit; however, the ones who were there definitely made a presence. I really appreciated the attention to detail, friendliness, information, and networking opportunities ViiV Healthcare provided during the entire 15th Community Summit.  Since meeting and interacting with ViiV staff at USCA 2014 and now at CS 15, I have become even more appreciative of their efforts to support all that are involved in the cause to end HIV/AIDS.  I have never dealt with a pharmaceutical company who placed so much focus on communities.  From participation in conferences, their positive action community grants, and hosting events such as this shows the ViiV Healthcare’s investment.  ViiV’s staff continues to impress me and I am truly thankful for all of their hard work.  Bill Collier, Head of North America; Marc Meachem, Head, External Affairs, and Ashley Mahoney, Manager of External Affairs always were available and willing to talk to anyone.  When available, they sat and visited with us and wanted to know what we though about everything. ViiV staff also wanted to know what they could do to better address those who are at risk or living with HIV.  IMG_2385

I really appreciated the opportunity to be apart of the 15th Community Summit.  I hope that I will be able to attend next year and take away more information and connections that will help my community better address and fight and HIV epidemic.