Archive for the ‘Guest Contributor’ Category

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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: http://blog.aids.gov/2014/08/the-truth-about-my-positive-experience.html#sthash.1A8VLl08.dpuf

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This year was the first year that I attended the ADAP Advocacy Association’s (aaa+) annual conference. I went there knowing that some states have AIDS Drug Assistance Programs (ADAP) that are under some questionable measures and are causing many who need meds to be put on waiting lists and even some who have been experiencing trouble accessing care. My purpose in attending was to learn ways in which to support as an ally and advocate for family members, friends, and those that I work with in regards to ADAPs and the possible changes to come with the implementation of the Affordable Care Act (ACA) and Medicaid expansion. Little did I know that attending this conference would touch me way beyond the spectrum of my current position as linkage to care coordinator, and allow me to connect with true champions in the fight against AIDS and become more empowered than ever before.

Day 1: Right from the start of the first plenary session I was introduced to Bob Bowers, One Tough Pirate, AIDS activist, educator and survivor. Living in the small city that I am from, I had never met such a warrior, so full of ambition, motivation, and courage to stand up speak on his combat for justice for himself and those living with HIV/AIDS. He absolutely blew me away. He was so real and so blunt that I almost wasn’t ready, but I knew that if he could get on stage and be so passionate about this fight, that I had to become more than just a health department worker; I had to become a rebel against those opposed to true nurturance, the true belief that diversity of any kind is indispensible to a truly healthy society.  

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 But that wasn’t all! The rest of the day consisted of breakout sessions on the topics of Africa’s use of technology to provide continuity of care – the use of an electronic health record system where clients utilized a simple health card to take to appointments that kept track of all their dates of visits, lab results, etc.; and HIV medication self-management – how individuals in one community were able to create their own intrinsic/holistic ideals of empowerment to deal with their diagnosis and manage care, all from many different walks of life.   The day ended with the wonderful launching of the ADAP directory…

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The fabulous invention of aaa+, a resource page full of word lists and links that handily locate AIDS Drugs Assistance Program information for all US states and territories! This is a way for those newly diagnosed or currently living with HIV/AIDS, those who are moving, plan on moving to another state, or just need to locate info within their own state, to review all the ADAP information and find ways of locating healthcare coverage and other financial sources; to improve the quality and accessibility of HIV/AIDS healthcare and support service organizations; and provide grant information. The best part is that the creators of the site are connected to the states info in a way that they are able to keep the information listed online as up to date as possible. So…as soon as something changes, their notified and updates are made!! How awesome is that?!?!? This is a way to keep people connected and even aware of changes that may need to be made or added in their areas. That’s true advocacy at work and making sure that we’re starting to push toward creating consistency across the US and its territories!

Day 2: Lots of information provided this day! A rep from the National Alliance of State and Territorial AIDS Directors (NASTAD), “the voice of the states”, provided and excellent presentation on AIDS Drug Assistance Programs. As of February of 2014, only one state has a waiting list consisting of 35 people and other states that had previous lists are now on cost containment measures. Meaning they have put a plan in place to attempt to avoid tight budgets and not being able to provide everyone with the care and medication that they need.

More good news concerning this program is that as of 2013, the ADAP budget (consisting of Federal, state, and rebate dollars), exceeded a budget of 2 billion dollars for the first time! This means funding for the program is steadily increasing to where care and meds can be provided to those who need it within the ADAP income eligibility range of the federal poverty level.  We as advocates just need to be sure that within our own states, the money is actually reaching the people!

The day continued on with powerful breakouts from organizations such as Positive Champions Speakers Bureau (http://www.positivechampions.org), a group of HIV positive people who share their first hand experiences and the effects that HIV has on communities. They work to educate their community on the issues of living with HIV & AIDS and work to fight against stigma. This breakout allowed the speakers themselves to not only share, but also engaged the participants to share and connect as well.

I could go on and on but because there was so much information shared that I believe was helpful to both PLWHA and allies….but I don’t want to take up too much of your time lol. So I’m listing some websites that I believe are truly beneficial and that you should definitely checkout:

www.speakup.org – enables youth to make positive life choices and parents and educators to support them as they navigate the journey to become happy, confident adults (great resource)

www.needymeds.org – a national non-profit organization maintained website of free information on programs that help people who can’t afford medications and healthcare costs

http://www.panfoundation.org/ – offers assistance and hope to people with chronic or life-threatening illnesses such as HIV/AIDS in which costs is the reason for limited access to advanced medical treatments

http://www.lambdalegal.org/ – founded in 1973 as the nation’s first legal organization dedicated to achieving full equality for lesbian and gay people

Later that night, I met this fabulous guy…

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a fighter, an advocate, a trailblazer, a survivor…the true definition to me, of a believer. He is a believer of life, a believer of living, and believer of the fight being bigger than just himself. I was honored to have sat with him at the 4th Annual ADAP Leadership Awards dinner as he accepted the award for Social Media Campaign of the Year for himself and his co-creators of the The Poz Life. P.S. – you guys are doing amazing things!

Day 3: The conference ended with a town hall meeting in which all attendees met to discuss issues and set plans to go home with to continue working, begin new initiatives, and move forward in empowering others to join in this movement towards social/civil justice and equal rights.  

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So…as I left DC and headed back to my little old city, I thought about how if associations such as aaa+ remain in the fight to ensure care and funding is available, accessible, and awarded to those in need, programs such as ADAP have no choice but to remain. But we also have to become part of the battle and we can’t be afraid to speak up. If we remain in the background, watching as others struggle for our rights and necessities, then what are we doing? Why aren’t we helping? Are we really a part of the fight? Are we really standing up for what we believe in? If not, I think we have to then start asking, what do we believe in? What is our purpose? I think if we follow the quote made by Dr. Martin Luther King, Jr. and read by the keynote speaker of the awards dinner, John D. Kemp, we can only go up from here…

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”

By moving forward, we work towards growing our communities from repulsion, to tolerance, to acceptance, to support, to admiration, to appreciation, to true nurturance for all – believing that diversity is indispensible to a truly healthy society. And in order for our society to truly be healthy, we have to all have all be treated as equal and have consistency in access to medical care, medicine and other resources that keep us living in this fight TOGETHER!

On another note…I LOVE DC AT NITE!!!

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Rimage-2yane Hill, from Akron, Ohio is a  University of Cincinnati graduate with a Bachelors of Science in Health Education and Promotion with a Community Health focus. Currently she is working towards her Masters of Public Health at the University of Akron while working at Summit County Public Health with the HIV/STD Education and Prevention Program.  Ryane‘s dedication is working to educate those in underserved populations and communities on risk behaviors, prevention, treatment, and ways to access care while empowering them to self advocate for their health and future.  

Last month, the White House Office of National AIDS Policy hosted the much-anticipated meeting on HIV in the Southern United States. Federal stakeholders, policy makers, national and regional venton-e1396560969818advocates were in attendance to outline the current state of the HIV/AIDS epidemic in the South and identify solutions for reducing the impact of HIV in this region of the United States. According to the Center for Disease Control and Prevention, the South has the highest number of people who are becoming infected and the majority of the people who are living with HIV in the South are people of color. During this important meeting, I had the opportunity to share my perspective as a person from the South living with HIV and also share recommendations for addressing the existing challenges around eradicating HIV in the South.

I am originally from Dallas, Texas. I grew up with a passion for health care as most of my family were involved in various aspects of health-care service and delivery. After obtaining my Bachelor of Science in Community Health from Texas A&M University in 2006, I moved back to my hometown to start my career in public health. I then completed my Master of Science in Healthcare Administration. My primary area of interest was health disparities and understanding its impact within communities of color. This led me towards an interest in HIV/AIDS and its disproportionate impact on Black gay men and men of other races who have sex with men (MSM). Early on in my career, I realized the stigma and fear that was associated around addressing the needs of this population.

During my time in Dallas, I was involved with a number of local and state-level HIV groups, including the Texas HIV/STD Community Planning Group. One of my first jobs in HIV prevention was working with United Black Ellument Exit Disclaimer. This project, funded by the University of California’s Center for AIDS Prevention Studies, aimed to adapt the Mpowerment HIV prevention Exit Disclaimer intervention for young, Black, gay and bi-sexual men, between the ages of 18-29. Throughout my work, a major challenge I faced while living in the South was around getting health systems to understand the unique social and structural challenges that act as barriers to effective HIV prevention, care and treatment efforts within populations of Black gay men and other MSM. These include, but are not limited to: racism, homophobia, lack of culturally competent service delivery and a lack of Black gay men in leadership positions throughout the community, HIV/AIDS organizations and government.

This part of the country is directly in the cross-hairs of challenges that persistently contribute to increased HIV infection rates and low rates of viral suppression. I believe in order to get the HIV/AIDS epidemic under control in the United States and ultimately, to move to an AIDS-free generation, we must continue our intentional focus on the issues facing Black MSM.

How are you focusing your efforts on those issue facing Black MSM? People in the South?

– See more at: http://blog.aids.gov/2014/07/black-voices-independence-from-hiv.html#sthash.PD0u8gjU.dpuf

Join the men of The Poz Life for our first live show on June 27th, 2014 at 8 pm EDT in recognition of National HIV Testing Day. We will have special guest Justin Toro as we discuss the importance of knowing your status. To engage in the conversation with please use #thepozlife. Also check out our blog http://www.thepozlife.com and our twitter:@thepozlife. If you have any questions or suggestion feel free to email us also at thepozlife03@gmail.com!!! Can’t wait to hear from you!!!!

The LGBTQ community has seen many facets of resistance to marginalization but perhaps the most imperative and poignant was the unapologetic grassroots activism of ACT UP (AIDS Coalition to Unleash Power). An international, direct-action, and advocacy group, ACT UP works to impact the lives of people with AIDS and was created in response to the AIDS Crisis. I am involved in this work because as a queer person, my history is intertwined with this struggle. The late 80s and early 90s witnessed rampant homophobia and stigma surrounding AIDS that thwarted research and funding. Such antagonisms from an apathetic, stingy government and pharmaceutical companies killed a generation of what could have been the mentors and role models for my queer generation. My initial inspiration for prevention work came from the lessons of this despicable period of US history and recognizing that today, much progress remains in terms of eliminating stigma and providing equal access to care and prevention for those living at the bottoms of stratification. When I entered the harm-reduction world, I was unaware of the many other facets of myself, the struggle for an AIDS free generation, and queer liberation I’d discover.

AID Atlanta, the largest AIDS Service Organization in the Southeast, was the first work environment that welcomed “all of me”.  Growing up in the South with multiple oppressions (I am queer, Peruano-Americano that was living in an agricultural, white, and small town) I learned the heaviness of prejudice and hate. So, I was grateful to enter an organization pivoted around harm-reduction as an intern. Eventually, I became a full-time employee, serving as a Program Coordinator. During my time there, AID Atlanta colleagues inspired me to understand and embrace my lived experience (all of them).  I had the wonderful opportunity to work with amazing community members that are still constant reminders that there is no such thing as “a single life issue” (thanks Audre Lorde).

The resilience I gained from experiencing interlocking oppressions made me proud to call myself a sero-negative (a person without HIV), fierce ally for those living with HIV and an advocate for prevention and care.  HIV stigma operates similarly to other oppressions in the gay community. Every time one writes “clean” or “white only” on dating/hook up sites, entire communities are slandered as ‘other’.  HIV rates increase in the communities and areas that experience the most oppression and lack resources. Therefore, because I’m young, Latino, Southern, and a man who has sex with men – health departments tell me I’m in a high–risk category. While this might be true in terms of where new infection rates are multiplying, what such labels lack is the impetus necessary to change the conditions that put me at risk (i.e. poverty, racism, and stigma surrounding HIV).

There is interconnectivity between transcending risk factors, combating new infections, advocating for comprehensive health-care, and fighting for community space that embraces each aspect of identity. All are necessary for an AIDS free generation. ACT-UP served as a rage against hetero-cis-patriarchal hegemony that silenced the very existence of HIV. Today, that same silence is echoed on the faces of those not represented in white media and all who experience internal and external barriers to seek testing or treatment. It is now the responsibility of this generation’s activists, to advocate for HIV prevention, obliterate stigma, and dismantle oppression on all levels.


 

 

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– Edric Figueroa is a queer, first generation Peruano-Americano with organizing roots planted in the Dirty South (ATL!). He has worked in and volunteered with traditional AIDS Service Organization’s as well as community organizing efforts for over four years. Currently, he works to empower young people at a youth-led, social justice non-profit, Seattle Young People’s Project and is part of the Youth Scholar Steering Committee for 2014 United States Conference on AIDS. Transformative justice, the process of recognizing oppression as the root cause of all forms of injustice and creating personal, community-based and beyond alternatives to such- is at the core of all the work Edric does. –

 

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Full Film Stay Positive | 8 min | 2013
A teen comes face to face with his HIV status when pressured into a blood drive by his grandmother and runs the risk of isolating himself and missing out on life.
Excerpt from Director’s Statement
“The personal tone in Stay Positive was birthed from my experiences testing for HIV. I had always been afraid of HIV, because I was taught to be afraid. I was taught to believe that HIV/AIDS is bad, a punishment for being gay, and a death sentence. In many ways, creating this film has allowed me to come face to face with my own fears and ignorance about HIV/AIDS and ask the questions I was too afraid to ask.”
-Robert-Carnilius

Special Thanks Thanks:
In filming, we were very thankful for Howard Brown Health Center and Broadway United Methodist Church for allowing us location usage and other resources.

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KenLikeBarbie and Patrick Ingram behind the scenes photo shoot for AIDS.gov (and no folks this was just for play-both are not together).

[This was brought to you by one of our guest contributors who wanted to share their story.  Want to share your story then click here!]

    If one were to ask me six months ago my thoughts on being in a relationship with someone who was HIV positive, I would have responded that it wasn’t an option. From a young age, I always imagined myself having the ‘fairytale’ ending. Well, the fairytale that always seems to be portrayed in media, at least. The handsome, well-groomed, great mannered gentlemen; three kids, two dogs, luxury cars, a four-story house with a green carpet of grass…all concealed by the security of our bordering white picket fence. For years, I’ve been daydreaming of the fantasy. Being a gay black male, however, my parents found it necessary to remind me that life was going to be hard enough considering I would already have those ‘three strikes’ against me. With the silent whisper in my mind, I made it a point to never involve myself, or get caught up with something that could potentially put my fantasy lifestyle in farther reach. As simple minded as it may seem, I always assumed that contracting HIV would be equivalent to putting a loaded gun to my head and pulling the trigger. Death to the luxurious lifestyle; a suicide to ravish reality. An HIV negative and HIV positive persons could never coincide together, I would tell myself. Looking back, I realize that it was a mere lack of education and knowledge that brought me to this elementary conclusion.

            It wasn’t until three months ago that my ideologies began to quickly change. I met this amazing guy who seemed to have all of the qualities that I was searching for, and countless more. He made it a point to be very open and honest about his lifestyle, and quickly shared his status of being HIV positive. It may seem odd, but the mere fact that he was willing to be so open and honest shortly after our introduction was very reassuring to me. Just in that one statement, he showed more self-confidence than I could ever hope to have. It was in that instance that I knew it was time to be more open minded, trustworthy, and take a chance on love…a chance on true happiness. A few weeks later, it was apparent that he was becoming a much-needed positive – no pun intended – influence in my life. He was patient with me, showing great interest and care in my well-being, as well as his own. This allowed me the time to take into consideration all that would entail in being involved in a sero-discordant relationship. Engaging in conversation and activity with someone who was HIV positive, which once seemed like a detrimental mask, was only a small blemish – per se – in realizing that my real life fairytale was coming true.

With a quick press of the fast forward button, I am grateful to say that he is still in my life; with hopes that he will remain forever. Being an advocate for HIV awareness, he has educated me tremendously on the pressures of living with HIV. While we have not yet had any backlash of negative stigma surrounding our relationship, I feel the time may be approaching for me to be open with my close friends and family about our sero-discordant relationship. A part of me still feels a sense of anxiety, wondering how others will view us, or quickly pass judgment. I contemplate on a daily basis over when is the ‘right’ time to share the news. But knowing that I have him in my corner to help weed out the negative opinions of others is making this internal battle all the more easier. When I look at him, I don’t see or think about HIV; I’m simply reminded of all the characteristics that make him a wonderful individual. I know this is only the beginning of the journey, but I couldn’t think of anyone else I would rather take this adventure with.

Moving forward, we have made it a point to maintain open communication in all aspects of our relationship. Staying on top of one another about getting tested regularly, maintaining healthy eating habits, and staying active are towards the top of the list. We have also been discussing methods of practicing safer sex. Aside from the frontrunner of condom use, PrEP has been a big part of the discussion. If used correctly, PrEP can greatly reduce the risk of contracting HIV. After recent discussion with my doctor, as well as, educating myself on the costs and benefits of using PrEP, I think this will be a major benefit for our relationship. My only advice for those who find themselves in a similar circumstance is to keep an open mind, but be honest with yourself about the struggles of the future. Educate yourself, as well as others, because with knowledge, each day is another step forward in winning the battle of the HIV epidemic. Be kind to others, as you never know another individuals feats and triumphs. And finally, stay humble and be fortunate for all that you have been blessed with.IMG_0225