Others like me...

It had been a while since I had attended a conference or other activities centered around health advocacy. This was partly due to a choice that I had made to focus more on myself as well as simply focusing on my career and recent return to the classroom to work on my Master of Social Work at Saint Louis University's School of Social Work. All in all, life had been going well. There is was this strange duality that I had felt, we fight to be healthier so we can have "normal" lives yet sometimes we don't live healthy lives... I have found that as of late I have not made as many videos as when I first started making them. When I was first diagnosed with HIV on June 6, 2011 making videos was therapeutic for me. It was my way of handling my diagnosis.

I found my voice and through it all I shared my life with viewers from around the globe. Many who would tune to YouTube in their hour of despair to find that there was someone else like them. There was someone living with HIV and that made them feel better. This was even something that I had done when I was first diagnosed. There is this natural desire to reach out and to feel that we are not alone in a world that is changing directly under our feet. A world with which we are not familiar and we do not yet know all of the rules or implications. 

After a period of time things "normalize" and we settle into our new health routines. We adjust to the limitations or changes which occur. What was once unfamiliar and scary now is simply part of our DNA. So it goes for my work on youtube and other health advocacy. When I saw a friend post about the Healthevoices16 gathering in Chicago, I instantly knew that I wanted to attend. Thanks to Janssen my travel and hotel arrangements were covered so that was one less thing that I had to be concerned with. My sole purpose was to meet with other health advocates and to learn how to better care for myself and also how to improve my health advocacy. Below are a few of the things that I walked away with after a truly amazing weekend!

1. The team at Tonic Life Communications was simply amazing!

I have never met so many amazing people who were genuinely concerned with our well-being and how we were feeling. This wasn't simply an act or just a job to them. The entire team clearly loves their job and it showed! Personally, I am biased towards Rachel Yurchak. She is amazing!!! I had the amazing opportunity to have her in my small group dinner on Saturday night. Rachel is a beautiful person who is making the world a better place. 

2. Janssen is genuinely concerned with patients!

This was nevermore apparent than during the opening remarks when leadership from Janssen welcomed us. As we went into the evening we were all amazed as we were greeted by the Executive Vice President of Pharmaceuticals, Joaquin Duato via Skype! His passion towards clients was clear and his energy came through the screen as the room interacted with him. He even shared a touching story about his grand-mother and her health journey.

3. I met so many amazing health advocates from across all health conditions. 

Sometimes it is easy for us to think that we are alone in this fight against whatever health condition we are dealing with. For the first time ever, I was in a room with more than 90 other health advocates who are just like me. No, not all of them were living with HIV but they all know what it is like to get a diagnosis that will forever change their lives. I also had a moment of clarity when I realized that as a person living with HIV, it impacts my life and health in such a small way. As I listened to others share about their health journeys, it made me realize that it doesn't matter what the diagnosis is; we are all on the journey together. That was one of the things that we all had in common. We had started as health advocates because we wanted to have control over our lives and our health. 

4. Josh Robbins... need I say more? 

This was the first time that I had the honor of meeting Josh. I felt like I had come to know him through his videos but let me tell you... I cannot say enough good things about him. Besides being a social butterfly, he is an overall great person. 

I am so glad that I sat in on his session on how to improve the use of video in our health advocacy. Did I mention the fact that Josh is a genius!!! If you ever get a chance to attend one of his sessions, do it! You will not be sorry. 

His personality had us all in stitches and his positive attitude is truly contagious. Not to mention that his momma is just as amazing! It isn't hard to see that the apple doesn't fall far from the tree. 

5. Self-care, Self-care, Self-Care...

There were so many great sessions to sit in on however one of the sessions which stood out was about self-care. As I sat in on the session I heard others share feelings that I thought I was the only one who felt that way. When I first started blogging I loved to do it. Over time that joy began to fade and it began to be more of an obligation. What the session taught me is that in order for me to be able to help others, I have to take care of myself first and foremost. 

6. There are so many great HIV advocates and I got to spend an entire weekend with them!

Benjamin Di'Costa, Bob Leahy, Brian Ledford, Guy Anthony, Josh Robbins, Joshua Middleton, Kevin Maloney, Wayne Bristol and Kamaria Laffrey. I was so amazed by each and every one of them. Each of these advocates are doing their own thing in order to help others. Kevin and I go way back to 2012 when we were at the International AIDS Conference which was hosted in DC. That even forever changed who I was and would become and I was glad that I got to share it with my friend!

I had been around Benjamin before while attending AIDS Watch however I had not taken the time to really get to known him. He is such an amazing guy who is really passionate about the work that he is doing. I also learned that his meme game is on point when it comes to twitter!

I especially loved meeting Bob Leahy for the first time. Bob actually gave me my very first interview when I started as an HIV activist. 

There is nothing that reenergizes me than being around other advocates who are simply working to make the world better. We do what we can with what we have.

7. My work will never be done until we all have better health!

Have you ever met amazing people and you know that they have been placed in your path for a reason? There has never been a statement that is more true with two amazing women pictured to the left! 

In full disclosure, I was considering not attending the small group dinners on Saturday since I was getting tired. I did and I am so thankful that I did. Jen Campisano and Ann Marie Otis were part of the group that I was assigned to that night. As we began to talk we shared our various health journeys.

 We laughed, we cried and by the end of the evening they said that felt empowered by me but I have to tell you that I was empowered by the both of them! It was by this point that I truly began to understand the theme of the weekend "deeply rooted connections". As we parted the weekend to head back to our homes, there was no doubt that the friendships and relationships which I had formed at Healthevoices 16 would be long-lasting. 

8. If you don't know who Britt Johnson is... look her up!

Britt Johnson, also known as the hurtblogger is amazing. She is not afraid to stand up and challenge the status quo in order for patients to be heard. Let me just say that I want Britt on my side any day of the week!

Final Thoughts...

So what did I take away from HealtheVoices16? I walked away knowing that I am not alone. There are others who are just like me in the world. There are people who are living with health conditions and they are simply doing their part to empower other patients to live the best possible lives that they can live. For me, healthevoices16 reminded me that I need to build time into my hectic life in order to care for myself and to love myself. 

Janssen thank you so much for an amazing weekend. I will definitely be at #Healthevoices17!!!

CDC Report Doesn't Tell the FULL Story...

Half of gay and bisexual black men and a quarter of gay and bisexual Hispanic men will be diagnosed with HIV in their lifetimes, the Centers for Disease Control announced in a first-of-its-kind study on Tuesday.

While the lifetime risk of a positive HIV diagnosis has fallen from 1 in 78 Americans overall in 2005 to 1 in 99 today, the decline has not been distributed equally among the U.S. population. For the foreseeable future, the CDC estimates that gay, bisexual, black and Hispanic people will continue to bear the brunt of the HIV epidemic. The new study is the first time that the CDC has estimated lifetime HIV risk based on race. This was part of a story which was reported on by Samantha Allen of the Daily Beast.

In the last 24-hours I have seen many people's opinions about what this means and going a step further to determine  why this is the case. This was part of a response which was provided by Charlay Banjee

"What I've been thinking is that no where in the CDC report does it point to the following as factors of HIV contraction for Black MSM: stigma, racist medical practices, heteronormativity, lack of self-efficacy, historical lack of cultural competency especially in consideration of intersectionality within msm populations, economic disenfranchisement, lack of Black-led health centers (non profits and hospitals/clinics included), HIV medicine-induced illnesses...

Also missing is how "msm" communities and practices therein have specific needs that no universal plan of action can "fix." The myopia of using "msm" as an all-inclusive label speaks to the laziness of the CDC in recognizing that Black queer- and straight- identified people are complex. Black DL men do not have the same concerns as openly gay Black men. Some "men" do not identify as men. The young do not live as the older. Those who try to claim risks for a community need to know the community. The CDC does not know.

Reports like this increase the anxiety that perpetuates the same behavior that puts ppl at risk for contacting HIV. Dr. Jeffrey McCune said it best that we need paired with these reports possibilities of getting toward a lower rate of contraction. Also, the panic over the 1 in 2 number, though understandable as we want fewer people contracting HIV, speaks to our overall internalized stigma of the virus and too shows rightfully so what little faith we have in current modes of prevention. It's a thin line: prevention for health's sake versus prevention for alleviating our own fear.

We can do the work but I'm not sure we know anymore what that work looks like because for so long it has been the antithesis of Black radical empowerment. I don't have the answers, and it's ok that we don't. We've yet to be honest enough."

As a person who has worked tirelessly regarding HIV education and prevention the statistic was not surprising. Additionally it is a known fact that HIV prevention occurs in cycles. The money and focus was on white MSM early on and then their numbers started to drop. Then the money and focus gets moved to the next group. We know that there are social inequalities which contribute to HIV exposure. Poverty, lack of education, drug use and the list goes on. What is the answer?

CDC data collection and reporting leaves a lot to be desired in every realm of epi-data. The purpose of the data which was reported at CROI was to sound an alarm, which those of us working in HIV prevention, has already known. Human behavior is very dynamic and complex. That being said, communities of color will have the best chance of tackling HIV rates in their own communities. "Nothing about us, without us." This is why we have been trying to engage the faith-based communities and leaders to take the lead on HIV. This has been something that many will not do. When was the last time that we heard Reverend Al Sharpton talking about HIV infection rates in the black community? 

Dr. Jeffrey McCune shared his thoughts regarding the announcement of the data by saying, "Scientific Racism is when scientists predict 50% of "black gay men will have HIV" before it even acknowledges that we exist outside a larger white gay paradigm. Consequently, suggesting something to the tune of "if you black and gay HIV is inevitable, just cause you black and gay." And to that point, scientific racism is when such predictions aren't immediately followed up with preventative measures to curb such probability. Finally, I am curious as to what such predictions do in terms of discouraging HIV-testing and conjuring all types of anxieties around sex and sexuality within the black gay community, as well as the impact of such salacious news within the communities in which they live, reside, and love."

Please let me know you thoughts regarding the release of this study and this data...

ICW issues call to action after recent murder of HIV positive woman.

FOR IMMEDIATE RELEASE

 

ICW calls for education of the public on HIV transmission routes and hindrance of violence against HIV positive women as a result of a monstrous murder in Texas, USA

 

ICW North America

June 24^th, 2014

Washington, DC

 

The International Community of Women living with HIV (ICW) and the North America (ICWNA)chapterare shocked to learn the news of the murder of Elisha Henson, an HIV positive woman from Texas, USA this past May.  Her murder was as a result of the ignorance of the murderers of the ways that HIV is transmitted and the overall social stigma towards HIV positive women.

According to several media outlets, Justin Welch and Rosalind Welch Smith, have been charged with Henson’s murder. Authorities believe that the alleged perpetrator, Justin Welch, killed Ms. Henson after learning her status following a virtually zero-risk transmission encounter: receiving oral sex, female to male.

ICW thereby call for massive action towards educating people of the possibilities of HIV transmission. This atrocious event teaches us that the lack of adequate information puts vulnerable people, especially HIV positive women, to extremely dangerous situations followed by stigma-fuelled reactions by the public.

“Enough is enough!” said Jessica Whitbread, ICW Interim Global Director, “The team at ICW, are absolutely appalled at the fact that there is not more outcry for such a horrific event. Our heart goes out to Elisha and her loved ones.”

Fear of the unknown, mainstream stigma and inaccurate facts can lead to an ignition of anger leading to violence in those where the potential already exists. As a community we should ensure that violence against women, violence based on a woman’s status, and violence based on ignorance of the facts and lack of mainstream education comes to an end.

“Accurate and easy to understand facts about HIV transmission needs to be infused into the minds of the general public via far-reaching media outlets and not just contained within the HIV community” added Karen Marcinczyk, ICWNA Coordinator.

We must end the criminalisation against positive women including disclosure laws which only encourage stigma and validate the idea that being HIV positive is a crime that must be prosecuted. We must stop criminalization to guarantee that other HIV positive women in the world do not suffer the same fate.

ICW asks that all communities, including the HIV community, the media and law enforcement begin to work together to eliminate violence against positive women, seek justice and provide responsible, accurate and stigma-free communication to the public which puts their trust in them.

For more information contact:

Karen Marcinczyk, ICW North America Coordinator
icwnacontact@gmail.com

Arinola Elizabeth Nite, ICW Communications Associate
icwglobalcommunications@gmail.com

__._,_.___

Insurer Says “Ryan White No Good”

The New Battle of New Orleans: Insurer Says “Ryan White No Good”

By Aaron M. Laxton

There is a new battle raging in the deep-south that without doubt could have implications for everyone living

with HIV/AIDS across the United States. Louisiana has found itself in a battle between those living with HIV/AIDS and insurance providers, namely Blue Cross/Blue Shield (BCBS) Louisiana.

The Affordable Care Act, which was enacted earlier this year, has served to leave patients living with HIV/AIDS in the cold. Transitioning from statewide AIDS Drug Assistance Programs (ADAP) and other assistance programs has been anything but seem-less. Blue Cross/Blue Shield Louisiana has arbitrarily decided to not accept third-party payments; this is generally how those living with HIV/AIDS obtain assistance through Ryan White Care Act. 

According to Robert Darrow who started the online petition, "The state's largest carriers is rejecting checks from a federal program designed to help these patients pay for AIDS drugs and insurance premiums, and has begun notifying customers that their enrollment in it Obamacare (The Affordable Care Act) will be discontinued."

 As outlined in a Press Release put out by Blue Cross Blue Shield Louisiana, the insurer states "Effective March 1, 2014, Blue Cross and Blue Shield of Louisiana will no longer accept third-party payments for our individual members' premiums. Only the policyholder or an immediate relative (by blood or marriage) or legal guardian of the policyholder (e.g. parent, spouse, sibling) can pay for that policyholder's healthcare premium." Three of the four health insurers in Louisiana offered through the state-ran Market Place will now essentially deny insurance to people living with HIV who need assistance to be insured.

Why should you be concerned about this if you are not living in Louisiana? The fear among advocates and AIDS advocacy organizations is that the trend that is being tested in Louisiana will set precedence which will become the new standard nationwide. Mark S. King, Kevin Maloney and Dorian Gray Alexander have all taken the fight directly to the insurer via an online media and a petition through Change.org. Additionally advocates in southern-border states are closely monitoring the situation. 

Should Blue Cross Blue Shield succeed the future of AIDS assistance programs for medical and prescription coverage could change for those who are the most vulnerable. If you have not done so already be take a moment to sign the online petition and let you voice be heard today.  

AIDS Discrimination in Louisiana Petition 

Harvard Law evaluation of Blue Cross Blue Shield's Decision on Third-Party Payments

Day 6: Fatigue and Tingling on Stribild

So today is day six on Stribild and for the most-part things have went as expected. Initially dreams had subsided however they have since returned. I am sleeping through the entire night and that is something that I was not able to do when I was on Atripla. On day 4 I started to experience severe fatigue. I actually haven't been that fatigued since I was first diagnosed and had a viral load of over a million. The best way to describe the fatigue is to say it feels like no matter how much rest I get I am still tired. To counter this I am just taking it really easy and trying to rest up.

Most of the symptoms come and go in waves so I just have to wait the symptoms out. There are times when concentration is extremely difficult and things are "cloudy". This is also coupled with moments where I simply do not feel well. Those moments come really quickly and disappear after a few minutes. Tonight I was laying on the bed and I started to feel tingling in my left arm, left side of my face, right lower back and right leg.

Around this same time I was also experiencing mild nausea. Again all of these symptoms come and go in waves. I have also had incidence of my headaches but I have simply taken Tylenol to treat the headache and they have went away.

I am not stressing over the side effects. I know that from taking Atripla that side effects generally subside as your body becomes adjusted to the medication. All in all the switch is going fairly smoothly and I am still glad that I chose to switch. I also got a letter in the mail today letting me know that my insurance would cover the cost of Stribild. I need to contact the specialty pharmacy tomorrow and arrange the shipment of my next months supply. I will be sure to blog about how that goes.

Aaron

Day 3: Stribild Rash

Day 3: Stribild Rash

Greetings! Well today marks the third day since I have switched from Atripla to Striblild. I can say that so far it has been uneventful. I have experienced almost no side effects that many others have experienced. I have however noticed that at times I have a headache that will come and go. I cannot say that this is exclusively because of the medication though. Tonight as I got out of the shower I noticed that I had developed a rash on my chest/abdomen that radiates across the width of my body to my flanks. I am not alarmed by this when I first start Atripla I developed a pretty bad Atripla-rash. I know that if they rash becomes bothersome that I can take Benadryl for it and I will keep an eye on it.

Regarding my sleep, I can tell a huge difference in my quality of sleep and I am no longer waking up in the middle of the night. The only other side effect that I might be experiencing is heart burn which means I need to eat more when I take the medication. I have not had any other problems though.

 <---- Here you can see the start of the rash. Eventually it will most likely spread over the entirety of my trunk.

When you look at them close up they it simply looks like hives
or areas of raised skin.                                               --------->

<----- Again it is across my trunk spreading L flank to R flank.

Negative Gay Men Consider Viral Load Before Unprotected Sex

 

Negative Gay Men Consider Viral Load Before Unprotected Sex
July 17, 2013- POZ.COM

HIV-negative gay men are much less likely to engage in unprotected anal intercourse with an HIV-positive partner if they perceive him to have a detectable viral load, the National AIDS Treatment Advocacy Project reports. Australian researchers looked at risk behavior in an ongoing study of 76 serodiscordant couples (meaning that one was HIV positive and the other HIV negative) and presented their findings at the 7th International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention (IAS 2013) in Kuala Lumpur.

Fifty-six (74 percent) of the HIV-positive partners had an undetectable viral load at the beginning of the study, and the remainder had a detectable viral load. Meanwhile, sixty-one (80 percent) of the HIV-negative partners believed their partner had an undetectable viral load, while the remainder believed their partner had a detectable viral load or didn’t know their viral load. This left a difference of five HIV-negative men who were either mistaken or uninformed about their partner’s viral load.

Fifty-five (72 percent) of the HIV-negative partners reported unprotected anal intercourse (UAI) with their partner. Among them, 48 (63 percent of the study group) reported insertive UAI—or being the top—while 32 (45 percent) reported receptive UAI (bottoming) without ejaculation and 19 (25 percent) reported receptive UAI with ejaculation. In other words, the HIV-negative partners were more likely to be the top during condomless anal sex.

Of the 61 HIV-negative men who thought their partner had an undetectable viral load, 49 (80 percent) had UAI in the previous three months. Of the 15 HIV-negative men who thought their partner had a detectable viral load or did not know his viral load, six (40 percent) had UAI in the previous three months.

Believing that a partner had a detectable viral load lowered the likelihood of UAI by 84 percent.

Murdered or Martyred: Spencer Cox's Final Contribution

Murdered or Martyred: Spencer Cox's Final Contribution
By: Aaron M. Laxton, HIV-Infected Queer Activist and Blogger

Weeks ago the status feed on my Facebook and other social media was captivated by one particular name... Spencer Cox. Throughout the days following his death activists from around the world shared stories and articles in reference to Spencer. As I opened up my email there was a plethora of condolence emails which all began something like this: "Loss of a pioneer...", most shared in what capacity the person sending the email had interacted with Spencer. 

As information regarding his drug addiction and personal struggle with post-traumatic stress became public, the world got a glimpse of the bruised and battered warrior who stood valliantly behind the armor. Spencer saturated himself in the science of HIV and is directly credited by Peter Staley, a fellow AIDS activist who was featured on "How to Survive a Plague", for saving the lives of over eight-million patients; a result of his efforts to standardize protocols which were adopted by the FDA (Food and Drug Administration) which brought about the protease inhibitor.

In the plague era, Cox found himself in a time before society had a name for what is now called AIDS. It first appeared as a rare cancer seen in eleven gay men, for a time it was called GRID (Gay Related Immune Deficiency) and finally would become AIDS (Acquired Immune Deficiency Syndrome). Friends and lovers were falling one by one at first and over time those numbers increased to staggering, alarming rates. Although everyone wanted to believe that they would live, the reality was that while death called upon a vast majority relatively quickly, others would be left forever scarred by pain, suffering and misery. Just as with any masscre or distaster the toll of the event is long-lasting and life-changing.

Political inaction which left those living, or rather dying, with AIDS was tantamount to  goverment-sanctioned death for patients during the plague years. Cox, a genius and pioneer was sentenced to death long ago by such politicians who turned a blind eye to an entire community that was being ravished by AIDS. Although today the political climate has, to a great deal, embraced HIV/AIDS, this certainly was not the reality of the plaque era. Cox and his fellow activists directly challenged not only the New York City Hall but also the White House and almost every major establishment in Washington, D.C. A politician's disinterest and lack of desire to become involved only further motivated activists such as Cox to blaze a trail into unknown territory. 

It was the introduction of the Denver Principes which boldly proclaimed that those infected were "AIDS patients" rather than "AIDS victims" and to this end Cox was no victim at least in the short-term. In the long-term Cox was merely the tip-of-the-iceberg regarding a marginalized and disenfranchised community who was viewed by politicians as "acceptable losses". 

There are followers and then there are leaders and those abilities are as much a gift as they are an art. Spencer Cox without doubt would forever changed the landscape of AIDS in the United States and Globally. His death however also serves as one last action. An action, like any successful action, brings to light an injustice and inequality through public awareness. An action also involves the potential for personal sacrifice through arrest, detention, or in this case... Death.

Much like the images we have seen of Tibetan Monks who set themselves on fire in one final act of protest, Cox so too has made a statement. A person who had been so instrumental is reforming how those living with HIV/AIDS received medications stopped taking his own. This was the equivalent of cutting an artery and allowing it slowly bleed out. The cestation of his medications meant one thing... death would finally come for this wounded warrior. For all of the things Cox stood for, such as empirical data, quantifiable-numbers and research, it was the latent-affects of living through the plague era which proved just as detrimental as the virus.

Our understanding of the psychological and emotional damage caused as a result of surviving the plague are not well understood. How many more Spencer Cox's are out there? How many more are survivors who through their own actions hasten death through self-destructive behaviors or attitudes? An addiction to crystal meth was merely the means by way Spencer self-medicated. The addiction was only a symptom of a greater problem that is not isolated to just Spencer. A greater problem that is running rampant throughout the gay community and within the AIDS community. I myself have battled with an addiction to Crystal meth as well as other self-destructive patterns of behavior. 

Why did he survive when so many others had died? The grief and grieving that seemingly over-shadowed being alive has been hidden away as a dark secret and is not spoken of near as often as it should be within our communities. What is focused on is improved drug therapies, longer life expectancies and "normal" lives however ignoring the catastrophic and debilitating emotional wreckage in plague-era patients is a travesty and it must be stopped.

Spencer Cox's death can be viewed as a murder which was sanctioned long ago but that only recently occurred or it can be viewed as the ultimate action and political statement to decry an injustice and inequality, only you can be the judge.

HIV will not kill you but your passivity and laziness will!

 

HIV will not kill you immediately but your passivity and laziness will!

By: Aaron Laxton, HIV-infected Queer activist and blogger

Last summer I had the amazing opportunity to speak at the ADAP Association Summit in Washington, DC. It was during my remarks that I posed the question, “If we simply provide medications to those living with HIV/AIDS yet we do nothing to improve their quality of life, what have we ultimately achieved?” The reality for those living with HIV is that quality of life is directly being threatened. It is being threatened and it must not be allowed to continue! Any meaningful existence for HIV/AIDS patients is directly being threatened in the form cost-containment measures with ADAP (AIDS Drug Assistance Program), reduction of HIV/AIDS program funding, increased HIV Criminalization efforts and outrageous pricing for new Anti-Retroviral Drugs in the name of research and development, just to name a few. In 2010 Gilead Sciences controlled at least 40 percent of the market share for HIV/AIDS therapies and showed profits of over $6.3 billion.

While some may call me an alarmist and radical, the fact remains that those of us living with HIV/AIDS are simply viewed as a “past-epidemic; a closed chapter- a black mark on our history marked by political-inaction, marginalization and demoralization”; take your medications and do not rock the boat is the current mentality! It is my opinion; big-pharma has bought the silence of a new generation of HIV patients thus quelling outrage over the lack of a CURE after thirty-two years. All of the advancements, therapies and medications we currently have came as a direct result of action from a generation that knew they would never be alive to see it. So please spare me the rhetoric that says, “We have never been closer to a cure as we are right now.” Where is the damn cure?

The Journal of the AIDS Society published new research that projected life-expectancies to approximately 69 years. One key challenge is that an aging population of patients living with HIV present researchers and clinicians with more questions than answers. Our understanding of AIDS-related malignancies has improving unfortunately patients that survived the earliest days of the AIDS epidemic are now staring a new insidious-challenge in directly in the face. Is it related to aging, anti-retroviral drugs, HIV/AIDS or all the above?

While aging populations of HIV/AIDS patients face significant challenges, the HIV/AIDS movement faces profound challenges which could prove fatal if not addressed. We must address philosophical questions regarding where we have been and where we are going if we are to ultimately achieve the Holy Grail, a CURE.

A previous HIV population had quite possibly the purest reason for fighting… a will to live. Today however, there is seemingly a lazy attitude among a younger HIV-community that directly translates into passivity and acceptance of the status-quo. Where is the fight?

Politicians will keep chiseling away at HIV/AIDS funding and programs until there is nothing! Twenty-five years ago, activists and AIDS Service Organizations would raise hell to stop this. Unfortunately many AIDS Service Organizations have lost their sense of direction and consequently no longer serve the populations that they were once determined to help. Those organizations which still have an interest in serving those living HIV are so afraid of advocating for specific issues lest their funding get cut.

We cannot depend on AIDS Service Organizations to place pressure on politicians on issues such as CURE Research, HIV/AIDS program funding cuts or issues such as HIV-criminalization. It is going to patients who are currently passive and lethargic to awaken from their dazed, lackadaisical-slumber and fight for their lives.  It you have ever heard me speak I always say the same thing… politicians do not change things out of the kindness of their hearts. They change because people place pressure on them and they do it out of self-preservation.

People living with HIV/AID need to let the world know that we are here.

I know what I am about to propose is radical and for that I will not apologize. Today, we find ourselves as people living with HIV/AIDS in a fight. This is a fight that has been raging for over thirty years however in recent years the battle cries have calmed as the cause lost leadership due to aging as well as from death as a result of complications of AIDS. We are in a fight even now as politicians cut funding and programs; we are in a fight as we strive to fight stigma. This is not just might fight and not simply the fight of those that are activist or considered radicals. This is the fight of every person that must hide their HIV status due to the fear of being discriminated against. This is the fight of every person who hides the fact that they are HIV positive from their family and friends due to the fear of rejection. This fight my friend is yours whether or not you ant to accept it not.

As I stood in front of the Washington Monument and the White House during the International AIDS Conference in Washington, DC I figured something out. People want to share their status and we need to. I need to stop hiding as if we have something to be fearful or shamed of because of a positive HIV status.

In thirty years we have seen many changes in our society. We have seen improvements in medications and increased life expectancy and quality of life and for that I am so thankful. That being said, does not mean that we can give up or stop fighting. We have to continue pushing forward in this battle that we are in. We have to ensure that funding continues to stream into programs that are working on innovative cure research as well as decreasing the costs of desperately needed medications to those who simply have a hard time surviving on a daily basis.

Yes, disclosing your HIV status is not easy and it is a very personal thing to do however we must all fight together. For some the sacrifice might be civil disobedience while for others it might be writing a strongly worded letter to a Senator or Congressman. The point if that we have to stand up and let the world know that we are here. HIV/AIDS is here and this is what it looks like. It looks like a friend, a family member or a coworker. We have never been as close as we are together to a cure and we must continue to push policy makers, corporations and big pharma to increase contributions to this technology.

I know what I am asking people to do and I would not ask anyone to do it if I had not done it myself. On an individual basis we can face negative consequences to disclosing our status however together, if we stand together we can change the world. This is bigger than any one individual person. I am asking that all people disclose their HIV status to their friends, family, coworkers and anyone else that you have not already told. It is only when we let people know that we are here will we fully reengage the conversation about HIV/AIDS. One thing that everyone can do is to simply take a photo with a sign that reads, "I AM HIV+" and post it online at "I AM HIV+" Photo Campaign Facebook.

I would ask you to consider this, is it better to live a life that is honest where you never have to hide who you are and are accepted for who you truly are or to live a lie? I would say that for me I chose a long time ago to never hide who I am. Although this might mean at times that I am discriminated against, beat down or yes even arrested; I choose to stand rather than to live on my knees.

ACT UP, FIGHT BACK, FIGHT AIDS! That is the chant that was being heard throughout the streets of Washington, DC and people had no choice but to hear us. We have improved medications to treat HIV/AIDS because of the sacrifice of activists, protesters and ordinary citizens that refused to simply live in silence. Yes this is a line in the sand and I am asking people to choose where they stand. Some might even say, if you are not with us then you are against us.

ACT UP, FIGHT BACK, FIGHT AIDS!

Aaron M. Laxton- AIDS Activist
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Whats the take away the International AIDS Conference?

Activists, Advocates and people from around the world converged on Washington, DC for the International AIDS conference. For those of us living with HIV it was a time to simply feel normal. Taking medication on a schedule, regular conversations regarding struggles with HIV were had and for all of us it was a time to refocus our efforts towards a cure.

With only a few days left of the conference we  all must ask ourselves what is the take away from this conference. Is the conference simply a time for us to travel or is it a time to reaffirm ourselves to fighting to reduce stigma and raise awareness surrounding HIV/AIDS? I would hope that the latter is the take away from this conference and for me it is!

I will forever hold this experience in a special place in my heart and the memories that I have made. Whether it be protesting and marching in front of the White House, special moments with Timothy Brown aka the "Berlin Patient" or living closely with a team of activists from around the world, this has been amazing. Many times this week I have compared this trip to that of civil rights activists who boarded buess and migrated to Washington, DC all in efforts to bring about social change.

I have marched this week; I have walked shoulder-to-shoulder with others who are as passionate about HIV/AIDS as I am and it was exactly what I needed. "ACT UP, FIGHT BACK, FIGHT AIDS" was the chant that could be heard by over thirteen thousand activists and I am proud to say that I was one of them. As I packed my car and made arrangements to come to DC the days prior to the conference I knew that this trip was going to be life changing however I could never have anticipated the utter importance of this trip. I knew that it was something that I had to do at all costs and though there were sacrifices, what I personally am taking away can never adequately be put into words.

Life long friendships were made and had that been the only thing that I achieved it would have been a success. The time that I got to spend with Timothy Brown has been priceless and I am so thankful for that. As I stood in a conference room awaiting the announcement of the Timothy Ray Brown Foundation that will focus on funding research for a cure, I knew that I was witnessing history. As I walked behind Tim as he walked into the conference room behind the line of sight of the media corp and in those moments we had a conversation and shared a hug. It was this interaction that a photographer from Reuters captured and would ultimately be spread across the Associated Press globally.

It was the shared moments that I had during this past week with activists who have fought the fight that I am now engaged in but when the HIV/AIDS movement was in its infancy. We are now thirty years and thirty-million dead globally into the movement now the demands from activists has evolved from treatment to a cure.

What was simply my desire to be who I am would also forever be documented by photographers and television stations around the world. The sign simply read "I am HIV+" and I stood in front of the Washington monuement and the White House with one desire... to let others know that I am here. Additionally I wanted to let others that are living with HIV/AIDS know that they do not have to hide who they are and that there is nothing to be ashamed of.

Protesting the Mayor of DC with Robert was another memory that was very spontaneous but ultimately is the shere definition of who we are. At the core of who we are we are wanting to change the world and the split minute decision to join our brother and sister activists was the right decision.

What can I say? The memories will forever remain in my heart and my mind as some of the best times of my life. It is not by chance that almost every photo of me taken during the conference show a huge grin on my face. Activism for me in not a romantic notion or simply something I do because I am bored, but rather because I know that I can be part of real change, not only within the United States but globally.

Aaron Laxton
314.610.0999
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My Journey to the International AIDS Conference 2012

Even as I write this I have so many emotions that are running through my body. Words cannot capture how I am feeling however I must try. As I pack my Jetta with luggage and electronic gear there is a sense that where I am headed is truly historic. I have said it many times this past week but I truly feel as if this is what activist and advocate must have felt like during the civil rights movement when they would board buses and make the intensive trip to Washington, DC.

Yes, I will be in a car for almost fifteen hours but at the very core of who I am I know that it is where I belong. I will be meeting up with Cyber-Activist and peers within the HIV/AIDS community that up to now were merely voices and email addresses. As with everything else in my journey with HIV I am going to document this because I know that it is historic and something that I will tell my children, "I was there."

My voice as an activist and advocate might only be heard by a few however in DC it will be united with tens of thousands of other people and together the world will see us. Whether it is marching on the capital or meeting with people in the Global Village there is one commonality, HIV/AIDS. I have made a sign that I am proudly going to carry. It is an AIDS ribbon on one side and on the other side it reads, "I am HIV +".

I friendships that I am going to make over the next week will most likely be like no other friendships. Myself and rest of the HashtagHIV team are going to be tweeting and doing various shows each day. WOW who would have thought that over two decades ago that the access of knowledge at one conference would so easily be able to navigate to the furthest points of the globe.

My hope is that through this conference attention will once again be directed to HIV/AIDS and those that are living with HIV/AIDS. I hope that the world will see that there is still stigma that surrounds HIV/AIDS however we refuse to be silenced and we will be heard! As I make this trip to Washington and I see things such as the AIDS Quilt I do so knowing that the names on the Quilt symbolize a life that was lost to a virus that I have in my body. As I make this trip to the International AIDS Conference I remember that fact that many of my brothers and sisters in the HIV/AIDS community who fought the hardest are no longer with us and it is now my fight!

I am excited. I am excited to share information with activist and dvocate from around the world. Without doubt I am forever going to be changed from this journey that I am on.

Aaron Laxton
www.youtube.com/laxtona
aaronlaxton@gmail.com
www.aaronlaxton.blogspot.com
www.facebook.com/myhivjourney

Where have all the HIV/AIDS activists gone?

Where have all the HIV/AIDS activists gone? Yes, I know that society has changed and so has the fight for HIV/AIDS. With the advent of the protease inhibitor and the decrease in death rates related to AIDS is there still a need for rallies, marches and protests? Do we still live in society where we need to carry coffins through the streets and stop traffic in order to make chalk outlines of people to represent those that will die or have already died?

A Generation Removed

One problem that exists today is that the memory of how AIDS ravaged our communities, country and world is quickly becoming just pages in a history book. They are stories that are told during times of rememberance but beyond that they seem to have no place in mainstream society or the fast-paced lives that we live. Yes, we have a quilt but that is not representative of the global devastation that HIV/AIDS has had. I have heard people say that during the time in which AIDS was at its peak that people would simply mark names off in their phone books, here one day and gone another. It makes me wonder what that would be like in todays society with Facebook. One day a person might have 1,000 friends and they slowly dwindle away two or three at a time. Would people even notice?

The more distance that we have between a younger generation and the actual face of HIV/AIDS the more people become less sensitive to the devastation of  HIV and AIDS. Today, there are ribbons for everything but let us never forget that the red ribbon, the AIDS ribbon was the first. Today people simply do not wear the red ribbon anymore; AIDS must no longer be an issue worth fighting for.

With the reduction of stigma has come another trend, the normalization of HIV/AIDS. To some degree it comparable to the relationship between a wild animal and humans. Once the fear of the animal is removed ultimately a human will get bit or worse yet killed. As an HIV positive person I am glad that people are not afraid to drink after me and touch the phone that I have used however we must find a way to stress the extreme importance and education, prevention and outreach. HIV/AIDS is still very much an issue that demands activism and advocacy unfortunately we are slowly seeing less and less.

AIDS Drug Assistance Program (ADAP)

One such reason for us to all rise up, protest and march is that funding is being cut or in jeapordy of being cut for the HIV/AIDS sector. There are several reasons for this that I will leave for another blog. We have to rise up and make those that set policy and budgets hear our voices.

Ryan White funding is up for reauthorization in 2013 and it will not shock most people working within the HIV/AIDS sector if funding is cut partially for this. It might be cut because there is less of a public out-cry or it might be cut because there is a perception that our country simply does not need to allocate that much funding to HIV/AIDS. People need to wake up and reignite this conversation about HIV/AIDS. We must continue the funding and we must continue to educate others in order to prevent HIV.

This past year the United States saw a near crisis as several states had wait-lists for the AIDS Drug Assistance Program known also as ADAP. This crisis was temporarily stopped and the wait list decreased however this cannot and must not be something that we wait to address until the moment of crisis. HIV/AIDS patients must unite and stand together and tell those that have authority that we want a cure now.

I challenge you to join with me in this fight of HIV/AIDS. Where have all the HIV/AIDS activists gone? Unfortunately many of our brothers and sisters have fought the fight and they are no longer with us. It is now our time to stand up and be counted. It is now our time to march and protest and to demand a cure. It has been thirty-years since HIV/AIDS first started to change the face of our society and if we do not fight it could very well be another thirty. We MUST march! We MUST protest! We can no longer sit silently in the back on society and merely taking our cocktails and one-pill-a-day regimens. If we continue to merely survive then we will never thrive.

Aaron M. Laxton
aaronlaxton@gmail.com
www.youtube.com/laxtona
www.facebook.com/myhivjourney.com

Has the Fight of HIV/AIDS become simply a profit-margin?

Have we become our own worst enemies in the fight of HIV/AIDS? Without doubt there have been huge advancements within the area of HIV/AIDS through the years, but I feel as if there is currently a disconnect between those that provide services and those in which the services are meant for. I write this blog as a person who is HIV Positive and during the last year has faced drug relapse, homelessness and unemployment. Through all of this however there has been one thing that has been constant; my activism/advocacy of HIV/AIDS. I am not alone with these struggles and unfortunately I am simply another statistic. I am very vocal about my story but there are many others out there that for one reason or another are not as vocal.

Have you ever tried to get a job with an AIDS Service Organization (ASO)? Let me just say that you would have an easier time getting an appointment to have tea with the Queen or a lunch date with the President. Over the past year I have applied repeatedly with AIDS Service Organizations (ASO) all over the United States simply to be dismissed or notified that I was not the best fit for the position. That begs the question, "Who is the best fit for the position other than people living with HIV/AIDS?" As I write this I know that people are going to call me an extremist or tell me that I am possibly jaded  and bitter. I am not jaded or bitter I am simply frustrated as hell that my voice is not being listened to in an effort to shape services provided to those living with HIV/AIDS.

To say that I have been frustrated with AIDS Services Organizations (ASO) lately would be a gross under-statement. Frankly, I am pissed off. Most, if not all, AIDS Service Organizations (ASO) were founded during a time in which our society was trying to make sense of this disease that we now know as AIDS. At that time it was termed as either G.R.I.D. (Gay Resistance Immune Disorder) or a Gay Cancer. Eventually people fought to have the name changed because it simply is not a gay disease. Over the years, family and friends of those infected and affected by HIV/AIDS created organizations and groups to provide services and education for those living with HIV/AIDS. Today however, we have progressed to a very different time in which these service organizations have forgotten that there are a group of activists and advocates that are living with HIV/AIDS;  the very clients in which they serve. We are a group of advocates and activists that for one reason or another simply cannot find work within this field even though we are subject-matter experts.

Yes it pisses me off that I can go into an AIDS Service Organization yet never talk to a single person that is HIV Positive or living with AIDS. The question that I have to ask is "What the fuck to do know about HIV/AIDS"? I am not saying that you must be HIV positive to be an effective advocate or activist however it certainly provides us with a unique knowledge that simply cannot be learned out of a book or through a graduate social work program. Wake up AIDS Service Organizations and realize that you have to engage those that you are suppose to be serving. Allow us to give back and to make a different in our own lives. People that are living with HIV/AIDS do not want to be dependant on programs but rather we want to be involved in every aspect of education, prevention and treatment.

Additionally what benefit is it for the HIV/AIDS movement to have publications and media if they do not represent the very least among us? I mean the ordinary stories of people who are fighting in their own towns yet never get their story told. I suppose that until it is profitable for an HIV/AIDS magazine or website to publish their stories it simply will not happen.

If it were not for YouTube and other social media tools my story would not be out there for the world to hear. Currently over 68,000 people have watched my videos and daily I get messages from around the world, from those living with HIV/AIDS to those that are newly diagnosed and those that are wanting to get involved.

If you are tired of simply being a statistic, stand up with me and tell AIDS Service Organizations and HIV/AIDS media publications that we have a voice. Force them to tell your stories, the real stories and not simply the ones that are profitable or meets a particular agenda.

Aaron M. Laxton
www.youtube.com/laxtona
aaronlaxton@gmail.com
www.facebook.com/myhivjourney