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Louis "Kengi" Carr

Louis

Louis "Kengi" Carr is a California native, born and raised in Santa Monica. He is a published photographer, writer and guest speaker. Formerly a private chef and events caterer, this formerly homeless, HIV positive, proud Angelino is now a activist and advocate for people with HIV and homeless individuals. He is the creator/founder of Project Kengikat, Do Something Saturday, Unplugging HIV and the author of 29 Months.

A lover of photography, blogging and vlogging and USC Football, Kengi has been rediscovering his love for Los Angeles, ceramics, painting and cooking while elevating the conversations of HIV and homelessness. He enjoys being outdoors, spending quality time with his friends and his amazing rescue dog Dodger.

May03

Being Alive, A Cure By Design

Written by // Louis "Kengi" Carr - L.A. Correspondent Categories // Gay Men, Activism, Louis "Kengi" Carr, Living with HIV, Population Specific

Kengi reports in on the LA’s AIDS service organization Being Alive’s Spirit of Hope Awards, and takes time to sing the praises of Being Alive itself.

Being Alive, A Cure By Design

I've been a member of Being Alive since 2008. After being diagnosed with HIV and having a very difficult time accessing services, care and still waiting for an appointment to get case-managed at AIDS Project Los Angeles (APLA), someone reading my blog all the way in Australia sent me a message telling me to go to Being Alive. 

As many of you know, I was already over a year into homelessness when I was diagnosed. When I walked through the doors of Being Alive I was very nervous and worried that I'd be judged for being homeless. Topping things off, I had just been in a bloody fist fight the night before for my laptop and digital camera. I was dirty and had not been able to access a shower in over a week. I did my best to clean up in the bathroom at the Hollywood and Highland Center, but even that wasn't much help.

The first person I met was Craig. I told him I was there to see about being a client. He told me to have a seat and he'd get someone to see me. I met with Bart for about 30 minutes before I broke down in tears. I was carrying so much and it just felt safe for me to release a little bit. Bart went to get me a cold towel for my face and we began to talk about things going on in my life. I had a chemotherapy appointment the next day and I had no clue as to where I was going after that. To say that I was very lost and beginning to get very depressed is a huge understatement.

Bart told me about the ceramics studio and right away I started going to the studio. That studio became my safe place and from the very first day of going to Being Alive, Bart, Craig, Kevin and the staff became my blessing in the storm.

Recently John Balma asked me if I would like to attend the Spirit of Hope Awards. I was shocked, because I'm never invited to something as prestigious as The Spirit of Hope Awards, which recognize individuals who have worked in the trenches of HIV and AIDS. All honorees are selected entirely by people living with HIV or AIDS.

The ceremony was held at the Mondrian Hotel in West Hollywood on the Sunset Strip, where comedian Bruce Vilanch served as Master of Ceremonies. The night featured a silent auction, entertainment by Scotch Loring and awards were given to the UCLA AIDS Research Team, Mondo Guerra of Project Runway, (season 8) Academy Award Winner David Weissman for his film “We Were Here” and my personal favorite, the Emmy Award Winning actor, Leslie Jordan who delivered a heartfelt and damn funny speech that drew laughs, cheers and plenty of applause when he told certain members in attendance to “shut the fuck up”

I also had the honor of being introduced to Mr. David Weissman, by John Balma. I was able to share my film project Breaking the Silence  with him and he was very generous with his advice and guidance.

It was time well spent raising money for an organization that for me and many others has been a place of peace, love and safety. An organization that does far more than just say they care or work in the field of HIV and AIDS, but demonstrates their compassion and great care to its members by offering a wide array of quality services FREE of charge that include ceramics, emotional support, wellness center, education, advocacy, prevention and speakers bureau in an environment that supports as well as encourages a better quality of life.

Twenty-nine months of homelessness is now nearly three years behind me, my cancer is in remission, I've spoken on Capitol Hill twice, continue to run my Do Something Saturday and Unplugging HIV outreaches which I started while homeless, published two books  - 29 Months and Occupy LA, facilitate an HIV support group for people of color, currently filming a documentary Breaking the Silence and I now write for PositiveLite.com, Canada’s online HIV Magazine. But most of all I am healthy and I now have an awesome doctor (Dr. Ardis Moe) terrific clinic (North East Valley Clinic) and am currently not required to take any HIV medications. HIV is no longer something that I'm afraid of and because of places like Being Alive I am able to help people LIVING with HIV and educate my friends about HIV and AIDS.

As I said before, Being Alive was a blessing in the storm for me, and from the happenings in my personal life I've learned what my "nia" (purpose) is. I've been able to learn, grown and come out on the other side a more compassionate human being with a huge desire to be of service. To this day they (Being Alive) continue to allow me to grow and evolve with the caring, supportive services they offer day in and day out, without fail, without guilt, without shame, without stigma but with great pride and compassion.

I am proud to be a member of Being Alive, honored to have had the opportunity to attend the Spirit of Hope Awards and humbled that they have allowed me to serve people with HIV through my outreach efforts.

Apr26

Strength, Courage & Wisdom

Written by // Louis "Kengi" Carr - L.A. Correspondent Categories // Gay Men, Features and Interviews, Louis "Kengi" Carr, Living with HIV, Population Specific

Our LA Guy Kengi interviews a poz friend “Recently I asked Dante to do this interview with me for PositiveLite.com, mainly because I knew he'd be completely honest and because he's such an awesome young man.”

Strength, Courage & Wisdom

Dante has been LIVING with HIV since July of 2007. He is one of the people featured in my film “Breaking the Silence”. From the first time I met him, I was impressed at just how well he's been dealing with his diagnoses and his desire to continue to live his life and not become someone that allows HIV to completely take over his life. Recently I asked him to do this interview with me for PositiveLite.com, mainly because I knew he'd be completely honest and because he's such an awesome young man.

Kengi: Before we start, let me first say thank you for doing this interview with me. I really appreciate it.

Dante: Thank you for having me. It's a great thing you're doing and I'm glad to be sharing my story through a magazine. Yay I'm excited okay let's get started.

You once described to me your life before being diagnosed as being in the fast lane. What exactly does this mean?

The fast lane to me was just partying, drinking, having wild and spontanteous sex. I would work in the day and party at night. If I was too tired from partying or the sex was that good I would call work the next day and say I can't come in because my back hurts. Me and a few other friends would get online, meet guys, set up our own sex parties and just have a ball. That's what the fast lane was for me,  hot guys, sex, partying and alcohol to let good times keep on coming.

So is it safe to say that you were just living in the moment?

Yes I was living in the moment. There were no boundaries that I wouldn't cross. Like you heard this saying, "I was young, dumb, and full of cum".

There are those who say that younger people just aren't paying attention to the message about HIV and AIDS. Did you hear any messages about HIV or AIDS in your neighborhood prior to becoming HIV positive?

I didn't see any billboards like I do now where they're in your face and you have to look at it and talk about it. On television, yes I may have saw a message but my mind wasn't thinking about HIV.

 Ultimately, why did you decide to get tested?

I decided to get tested cause I was in a relationship at the time and things started to progress where condoms weren't being used. So to be on the safe side I wanted to know my status and have a clear head space. I didn't have any symptoms prior to getting tested I just wanted to know my status.

Were you worried you may have caused your boyfriend to be HIV positive?

Yes I was worried. I was scared I never been through something like this, so I didn't know how things were going to play out. 

So you're sitting waiting for your test results. What was going through your mind while you waited?

I didn't know what to feel. Part of me felt like this can go either way. In the past I was playing Russian Roulette. So now I see the game caught up to me. 

About a year prior to testing positive, you told your parents you were gay. Was there ever a concern that your parents would throw you out or no longer love you?

No, not loving me or throwing me out was never an option cause my parents love me from the day I was born to the day I came out. I'm their child and only son, so disowning me? No, not my parents. They love me to much to do that.  I'm grateful to have my parents who love and adore me cause not everyone gets the opportunity to feel that. 

Did you feel like you had let them down by not being careful?

Yes, I felt I let them down, but myself as well. How could I be so blind by lust to not take the precautions and protect myself every time I had an encounter. But like I said when you play Russian Roulette you're gambling everything for that good time. 

Contrary to what we hear and read about when it comes to Blacks and Latino families as it pertains to HIV and AIDS, Your family has been very supportive. Even going with you to medical appointments.

Yes, once my mother found my doctor's slip, she put two and two together and grilled me. I fest up, told her the truth and then talked to my dad to assure them that I was going to live. I told them not to come, actually and they said no, we're coming with you to the doctor. "We love you too much to lose you to this." So from that moment on I knew my parents were right by my side. 

How is life different now that you're HIV positive?

Life is good, real good. My health is 110 percent. I do what I'm suppose to and I look at life in a whole new light. There is life after this and I tell people that all the time because when you going through it it's hard to understand.

Do you ever have feelings of not being able to fall in love because of the HIV?

I did at first, but now I'm in a good place and I stay knowledge up on medical updates and when I disclose my status I can say it proud 'cause I have come so far in this and when I hear the guys' reaction to it, it brings joy to my heart that they still see a person who needs love too. 

Do you feel you can only date people with HIV?

I feel I can date anyone who is open to it (HIV) and willing to get educated on it (HIV). if they don't know much about it, whether you're positive or negative ask me questions cause when you know more, you connect more and yes, Kengi, quote me on that. (laughter)

Recently I had the honor of hearing you read something you wrote at a public reading called "Love the way you lie" What was the inspiration behind that?

I was in a dark place at the time and I needed to express myself in the way I know best  - which is writing. Once I put that pen to paper I surrendered to what I was feeling. And I'm proud that you and all in the audience loved it, but it was this one person who pulled me to the side and said “you touched me. I'm going through that right now and thank you for letting me know I'm not alone and that hope is still alive.” 

You've been involved with two of my projects, the film "Breaking the Silence" and my HIV support group, JustUs. What have these experiences been like?

Being part of the film project has just opened my eyes up to the fact that my story matters and it has value to someone out there who needs to hear it. For the group JustUs, it's refreshing cause we all come from different walks of life and we share our stories without any judgment and to feel safe to open up is pretty special to me. 

You're also a writer with aspirations of writing a book or two. How is that coming along?

Its coming along great. I'm in the process of finding an editor that can edit my work and build a close bond 'cause this person is going to be my right-hand man. So the first book is about relationships and the second book is between a collection of short stories or my tips on the do's and don't of styling and designing yourself inside and out. 

My friend Carlos asked if he could paint you. What did that feel like?

It was such a surprise that he wanted to paint me and use it for a show I was like wow, really, me? It's such an honor to have someone paint you and display it where people can see, I'm still in shock. Plus he only does woman and this time he decided to paint a man and the man happens to me. June is around the corner and I can't wait to see me live and in color. 

So what's next for you?

Working on my baby.... the book, and I want to travel more this year and going into next year. I have a passport and I need some more stamps. So next time you hear from me maybe from a postcard. So watch  out cause good things do happen when you push it to the limit. 

Dante, again, thank you very much for taking the time to do this. From the time I was introduced to you, I knew you were pretty exceptional and were destined to do great things. I pray nothing but the best for you.

It was my pleasure Kengi thank you for having me on the couch. We made magic today.

When it is all said and done, we are either LIVING with HIV or dying with HIV, but at the end of the day YOU and ONLY YOU can make the choice to LIVE with HIV. Dante has clearly made the choice to LIVE with HIV and because of this, outside forces like guilt, shame, fear and stigma have no place in his life.

Apr12

And This Too Shall Pass

Written by // Louis "Kengi" Carr - L.A. Correspondent Categories // Gay Men, Louis "Kengi" Carr, Living with HIV, Population Specific

Our LA correspondent Kengi said of last week “Today marks four years since I was diagnosed with HIV. As the tears falls down my face, they are not tears of sadness, but from being so grateful.

And This Too Shall Pass

It's 5:15am on Tuesday April 3, 2012. I'm sitting on the floor in my apartment with the blinds slightly open. Tears are falling from my eyes, but no sound is coming out. My friend Christina is here visiting from Atlanta and I don't want to wake her, nor do I want her to be worried about me, because the tears that fall are not from sadness, but from being so grateful.

Very quiet, very still and very peaceful outside. There seems to be a calmness about it all. I'm thinking about April 3, 2008, the night I was diagnosed. After making it from the emergency room to the floor where I would be for the next 11 days, I was left holding onto a window sill. The bed was too far for me to reach. Looking out that window all I could see was the light on the walkway down below and the rain falling.

 My life is much different now; in fact everything in my life is much different.

Today marks four years since I was diagnosed with HIV. As the tears falls down my face, they are not tears of sadness, but from being so grateful., The first year was a complete nightmare that I honestly thought I would not survive. I changed doctors 5 times and clinics 4 times and I was homeless. I was starting to believe the lies being fed to me. Starting to believe that Skid Row was my only choice and that I was a “fuck up” and my thinking was “backwards”. Starting to believe that I was a complete failure.

However, in my darkest hour - what believers call the midnight hour - God turned it all around. For the past 3 years I've had an amazing doctor who has demonstrated time and time again that she cares about me as a person, that she takes my overall health and well being very seriously.  Not only am I in great health, I no longer worry about HIV, nor do I cry about it. I'm more than just some patient ID number, some random patient who she does not know or care about. Just sitting here looking at the window of my apartment is a direct result of being under her care and for this I am so grateful.

My clinic is awesome. I do not feel like a number, or some person that equals federal, state or local dollars. They know my name, they know about the work I do and have supported it several times. They take great care of me from the crown of my head to the bottom of my feet. From dental care to any health need that come up, my clinic is there to help me when I can't figure it out on my own. For this I am so grateful.

My inner circle of friends are people whom I trust with my life, people I know won’t walk away when things get rough, people I know I can call on no matter how late the hour. People who truly get the fact that even though I have housing, things are still very hard for me each month. Ma use to tell me to get some confidants in my life.  She said those are the people who stand with you in good times and bad and will not leave me. She told me I would be a blessed man if I had one or two. I guess I am abundantly blessed because with Andy, Tina, Eric, Willow, Carlos, Christina and Darlyna I know that whatever comes my way, no matter how hard or easy things may get, these people will stand with me no matter what, without fail, without question, without guilt or shame and for this I am so grateful.

I've also been blessed to have some HIV wisdom that I can call on, the type I can’t get from my doctor or clinic, but from people who have LIVED with HIV and are doing awesome. Brian, Dante, Tony, and Travis. I like to call these men my brothers from other mothers. Strong Black men I can call on to ask question, if and when I start HIV treatment or when I experience things I've never had with HIV. For this I am so grateful.

Looking out this window I can celebrate. Everything I was told I could not do, each time I was told I could not help anyone,  I've done just what they said could not be done and accomplished what they doubted. As a kid I never understood what the meaning was when I heard older people say "what God has for you is yours and no one can stand in the way of it, or prevent it from happening." At 43 years old I fully understand the meaning, but more than that I fully understand what it is to say that God is my provider, my strong tower, my way maker, my wheel in the middle of the wheel. I know what it means to say "if God be for me, who can be against me."

I have a doctor’s appointment this morning and I'm not the least bit concerned about it. I know that I am fine and even if I have to start HIV meds, I will still be just fine. I'm also speaking this evening at Loyola Marymount University with my long time friend (since 7th grade) Michelle Simek who is a bi-lingual HIV treatment educator.

Dodger has just moved from the sofa to sitting right beside me with his head on my legs. My friend Christina just asked if everything was alright. I looked over at her and smiled saying “just fine. Everything is just fine.”

As the sky begins to lighten, I am reminded of just how blessed I truly am. I have a great set of friends, my health is awesome and my small grass roots effort to reach out and help homeless people and those living with HIV grows each year. Yesterday when I opened my mailbox I had a letter from an HIV housing organization in Santa Monica. They want me to come in and start my paperwork. Santa Monica is where I was born and raised. It's been my family’s home for over 80 years and this is where I started Do Something Saturday as well as Project Kengikat, so it would seem that with this sunrise my life is coming full circle and for this I am eternally grateful.

I have HIV and this too shall pass.

Mar28

Work in Progress

Written by // Louis "Kengi" Carr - L.A. Correspondent Categories // Gay Men, Features and Interviews, Louis "Kengi" Carr, Living with HIV, Population Specific

Our LA guy Kengi interviews his friend Brian, living with HIV for twelve years and sober for three.

Work in Progress


I met Brian at an HIV support group I used to attend
. After the meeting we shared some conversation which led to complete laughter and comedy about the group, which led us to hang out more.

It wasn't long before I invited him to go out on a photo safari and through the magic of photography we've become pretty close. However the friendship is not like any other friendship I share with my other friends.  Brian is gay and HIV positive and my close circle of friends is straight and HIV negative. Our friendship is unique and comes with plenty of challenges, but as is the case with anything worth keeping in my life, Brian is both special and dear to me. I thought it would be very cool to interview him so he could share a small part of his awesome story with my readers.

Kengi: What's up Brian? Thanks so much agreeing to this interview. 

Brian: Thank you for asking me. I'm very excited about it.

Kengi: So, you've been living with HIV for 12 years and sober for 3 years, but things have not always been as they are now. You've had to fight many things to get where you are today. Tell our readers just a little about that.

Brian: Yes, that is true, but to be honest I lived in denial of my HIV for ten years or more. I've been able to break the cycle of denial as a result of being clean and sober for three years.

Kengi: Now when you were diagnosed with HIV, you were also diagnosed with diabetes as well, right?

Brian: Yes, that is true. Currently I'm taking oral medications and by changing my diet as well as getting proper exercise, I hope to one day stop taking these oral medications.

Kengi: I recall you saying that for a while you hid behind your diabetes diagnosis and HIV was something you would take with you to your grave. Why was that?

Brian: The day I was diagnosed I decided right then and there that I would never tell anyone .I was not going to be associated in any way with HIV.That would be the ultimate secret that I take to my grave. Diabetes was my disease and I would use it to explain any illness or other conditions.

Kengi: How much does your sobriety play a role in your HIV diagnoses?

Brian: It plays a huge role. If I wasn't for my sobriety I'm pretty sure I'd still be in denial about HIV, I wouldn't be taking care of my overall health. and I'd still be engaging in risky unprotected sexual behavior.

Kengi:  How hard is it to live each day clean and sober?

Brian:The hardest thing for me is to make sure my daily life is structured around my sobriety. If not I can quickly slip back into my alcoholic, addict selfish and self centered behavior

Kengi:  Has it been hard to establish new healthy friendships and release any secrets you've kept?

Brian:  Yes, it's  hard and establishing new healthy friendships is still a work in progress on my part. As for my secrets, that too is something I must work on daily. Right now I'm a work in progress, my biggest concern is, no longer living in the shame of my secrets.

Kengi: Recently you shared with me that you disclosed to your father. Was that as hard as you thought it would be?

Brian: You know Kengi, disclosing to my father, surprisingly,  wasn't hard at all. It was something I wanted to do in my own time and on my own terms, but to be honest all the fear of it was all in my head.

Kengi: You once told me that you're learning the truth about yourself and it isn't so bad. What does that mean?

Brian:  I was referring to some personal issues I'm working through in therapy and that everything I beleived about myself isn't all bad. The day I mentioned this was one of the best days I've had so far in therapy.

Kengi: After all that you've been through, you've decided to be part of a film called Breaking the Silence. What has being part of this film meant to you?

Brian: First of all, I'm honored to be a part of this film. For me this film has meant that I get to break my own silence about living in denial, shame, fear and stigma about my HIV diagnoses, sharing all that I've been through openly and out loud. This film has also opened my eyes to the tremendous lack of access to services of minorities, predominatel, the African American communities. Most of all it's allowed me to be heard in my own voice and in my own words.

Kengi: You've also become a shutterbug?

Brian: Yes, I have. I've been exploring all aspects of picture taking including subscribing to photography magazines and going on photo safaris with my friends. I was part of my first art show for World AIDS Day and looking forward to the ENUF Art Show in June for National HIV Awareness Month. It's been a very relaxing and stress-releasing hobby for me. I'm enjoying it very much.

Kengi: Brian, thanks for taking the time to do this interview and share a small part of your amazing story us.

Brian: Thank you for asking Kengi. It was my pleasure.

My circle of friends is pretty eclectic, representing very diverse backgrounds and life experiences. Brian is no exception to this. Although our friendship presents challenges, there is something about him that tells me to stay the course. There's this shine in his eyes that comes through every now and then and the trace of joy and fulfillment that shines bright when he's able to let his guard down and relax. At the end of the day, he truly is a work in progress and I am honored to be able to see the transformation taking place right before my eyes.

Mar19

HIV and AIDS? That's NOT How We're Going Out!!

Written by // Louis "Kengi" Carr - L.A. Correspondent Categories // Activism, Louis "Kengi" Carr, Living with HIV

Our LA correspondent Kengi, against all odds, has started a peer support group for people living with HIV. Here’s his story.

HIV and AIDS? That's NOT How We're Going Out!!

Last year when Bob interviewed me I was all set to move forward with my HIV peer support groups as well as starting my HIV support group. After providing a wide range of HIV education services for residents living with HIV on Skid Row in Downtown Los Angeles for well over 2 years and just two days before the program was to start offering services in other buildings that residents had requested, my entire outreach was blocked and I was banned from offering any such services.

To say that this took me by total surprise is a huge understatement and to say that many of the residents were not just upset, but angered is also a huge understatement. Here were a group of residents LIVING with HIV in need of all sorts of HIV supportive services not being provided by their housing organization and it was completely shut down because someone had the power to do so.

Skid Row just happens to be one of LA's hot spots when it comes to new HIV infections and AIDS deaths, so to block these vital services and not provide anything in its place is nothing more than the reckless authority that drives HIV ignorance and is the breeding ground for new infections and deaths among the population hardest hit by HIV and AIDS. Although the outreach was blocked and I've been banned from the buildings, the outreach grew and continued to offer HIV supportive services to residents without fail.

Last month, after several people mentioned to me that they needed an HIV support group tailored to address their needs and concerns, I once again began working on finding a way to move forward with the HIV support group. On February 16th, the middle of National Black History Month, JUSTUS was formed I held the first HIV support group for men of color living with HIV. The meeting was attended by 6 men and since the first meeting the group has held several successful meetings with attendance as high as 11.

Last weekend the group held a meet and greet at Venice Beach which even welcomed people who wanted to get information on HIV and AIDS as well as those who just wanted to come out to show their love and support to members of the group.

It's been so amazing to me to see people go from someone who was very afraid of talking about HIV to laughing and enjoying life on Venice Beach. I was a bit worried about how the group would do in such a public space. I even tried to find a part of the beach where not many people were gathered, but the members picked an area right in the thick of things and the afternoon was filled with talking about life, finding love again, telling jokes, sharing our experiences and simply enjoying the heat that reached the low 80's.

Our group is very now traditional in the fact that we meet in different places and our meetings include outings such as trips to the movies, coffee houses, photo safaris, hikes, day trips and even dancing. The group is focused on LIVING and exploring all the things we did prior to becoming HIV positive and doing all we can to support each other along our paths of living an abundant life.

I had my video camera with me because some of the guys are participating in the HIV documentary I'm currently filming about LIVING with HIV. While at the beach I was able to simply pull people from the board walk and ask them their views and understanding of HIV and what came forth were people who were well informed, but also spoke directly to the lack of access to care and prevention where they live.

We've had six meetings so far and each time I'm simply blown away by the information, friendship and love that is being shared - the bonds that are being formed and the spirit of brotherhood that has been transforming lives and breaking down walls that prevent us from living the best life.

It's always so funny to me how some people seem to think they can prevent me from providing HIV services. It's strange how they do not have the capacity or intelligence to understand or provide; that strikes great fear in them. Instead of embracing the work I do, they feel they must do all they can to make it go away in order to make them feel better about their own inadequacies.

As if we don’t have enough to deal with just by being HIV positive, it saddens me that people with HIV have to deal with people, places and things in positions of power and authority causing the most hurt, harm to forcing far more guilt shame and stigma than any other place. I guess what this boils down to is that we can't force people to care.

Last night when we finished our meeting one of the guys turned to me and said “Thank you for giving me a place where I feel fully supported and a place that has given me permission to love myself, but most of all permission to live free.”

In the coming weeks I'll be interviewing some of the men in this group who happen to be my friends. I can't wait to share their amazing stories with you.

Until then, LIVE LIFE FREE!!!!!

Feb29

Healthcare Reform & HIV: Who can you trust?

Written by // Louis "Kengi" Carr - L.A. Correspondent Categories // Activism, Health, International , Louis "Kengi" Carr, Living with HIV, Opinion Pieces

Our LA guy Kengi writes “People with HIV have enough to deal with, enough to worry about. We should not have to worry about anyone else taking advantage of us, pressuring or threatening us.”

Healthcare Reform & HIV: Who can you trust?

Recently I had the opportunity of hearing Herb Schultz from the United States Department of Health speak at a medical update about healthcare reform and what it means for people with HIV. The one thing that stands out for me is when he said “you are entitled to your own opinions, but you are not entitled to your own facts” when it comes to healthcare reform. He was referring to all the noise we've been hearing about healthcare reform here in the United States.

He was on a panel with other distinguished people presented by AIDS Project Los Angeles designed to help people with HIV understand what healthcare reform means to them. Joining him on this panel was Julie Cross from the Office of AIDS Policy and Programs

They each had very convincing presentations and by the end I felt that I had a better or at least a more clear understanding of what healthcare reform means and how it will affect people with HIV and by the time it was over I had better, or at least a more clear, understanding about what healthcare reform really was. However I asked what measures were being put in place to make certain that people hardest hit by HIV and AIDS would not fall out of care or fall victims to potential scams by people, places and things offering to take over handling of meds and insurance billing. I even gave them examples of people I do HIV peer support for who had in fact fallen out of care for this very reason, but the only answer I received was dead silence.

Until now I've never had any concern about falling victim to such scams because I access my care through the Ryan White Act. I do not have any sort of insurance that can be billed. However with all the changes coming,  I will now be required to pick a healthcare plan and this is now something I MUST be concerned with.

Recently I started taking meds to help my body build its resistance to TB. After 29 months of homelessness and being exposed to it by living on the streets, in shelters, missions and transitional housing, my defence is low. This will help me build it up.

I also had to apply for ADAP which was pretty simple, but for me the problems started when a company offered an incentive to allow them to handle my pharmacy needs. At first, I saw no harm in this until I started asking questions as to why I had to release all my medical records to them and I needed to allow them to make all medical decisions that I make with my doctor. They even offered to help me get into the new plans along with helping me with any housing authority issues I may face.

It all sounded too good to be true and at the end of the day it was. My friends and I who are also HIV positive had started talking and in our conversations we discovered that they too were offered all sorts of things to move their HIV care, even claiming to be better than the Veterans Affairs.

We all felt harassed and one friend said they felt “violated” and “uncomfortable” with this company and how they had aggressively pursued all of us even after they said “no thanks” and in my case after I asked to have my meds changed back.

Today I find myself lost in a system with no answers and my medical care is now in the hands of some company who only cares about getting the right to bill county, state and federal programs top dollar for my HIV meds. I've been dealing with this for two days now and today I looked up and discovered that I have been under so much stress that I've now missed two doses of my current meds to treat my resistance to TB.

At the end of the day, when it is all said and done, we all have the right to pick who handles our HIV care. We have the right to say no and we have the right not to feel pressured, threatened or bullied into changing things in our healthcare that are only in the interests of making a profit for our sickness that we must live with daily.

So again I'm left with the question of who protects people at greater risk from companies who will take advantage of the fact that many people with HIV are also low income and struggle each month to make ends meet? Who will protect us from people, places and things that will promise the sun, moon and the stars, simply to get control of billing for HIV meds?

I'm sure this is only the beginning of things to come when it comes to caring for, or should I say pretending to care, for people with HIV and AIDS. In many ways what has happened to me sounds, looks and smells like the very same type of predictor type practices aimed at senior citizens.

People with HIV have enough to deal with, enough to worry about. We should not have to worry about anyone else taking advantage of us, pressuring or threatening us. My faith in God is at the center of all I do and in this moment I'm placing my full trust in God because he has never failed me yet.