Are we cany closer, truly?

I have been writing in parts about my Highs and Lows from the IAC and DC Trip.  And I will continue those, but today I’m going to deviate and think in text for a while about a few things that are churning in my head.   They are actually parts of a running theme throughout this experience It would seem. 

The questions I have are regarding personal responsibility.  Prevention and Harm Reduction.  Community involvement in HIV/AIDS Policy planning.  Leadership.  And Understanding of “where the people are.” 

Let’s think about a few of these things…

I mentioned that while we are making great strides in the Global South(Sub-Saharan Africa, India, other poorer developing nations) in terms of new transmission and treatment.  We have learned that male-circumcision reduces risk of heterosexual transmissions. ( I do not know the science behind this and have yet to catch-up on the research).  We know that we can now treat mothers for their HIV, and offer Cesarean Section Deliveries, to help reduce the risk of Mother-to-child transmission to less than 2% chance of transmission.  We know that adhering to meds make HIV+ people more likely to get to  high CD4 counts and Low Viral loads, and the lower the viral load the lower the risk of sexual transmission.  Even though there are problems with availability and access to medications for Developing Nations (due mostly to pharmaceutical company greed) we are making great strides in achieving a slow-down of the Virus in the Global South.

So then, this begs the question, Why can’t we slow down these new infections in the American South?

Now let me be clear. I am not, by any means, a believer in the “care for those at home first” mentality.  I will never complain about the amount of money we spend on Foreign Aide, unless I’m complaining that its not enough.  People are people, and if we have enough and they don’t have enough then we give them what we have extra. Period. My mom taught me that as a child, and it holds true for individuals, families and nations.

But I *DO* have to ask.  What is going on here? We are able to reduce transmission rates in sub-Saharan Africa, with cultural and language barriers by the dozen. But we can’t get the rate of new infections in D.C. to slow down even a little bit?  Rates are sky rocketing in Georgia, Tennessee and Mississippi! What is going on down there in the South?  Why are Young black Men contracting HIV at enormous rates? When young African men are living longer without becoming HIV+? 

I ask about this because I think we need a clarion call from strong leadership to start approaching things differently.   We’ve been saying to people for over 20 years now, “the only 100% method is abstinence from Sex and Drug, and the next best thing is to have safer sex using dental dams, condoms.”  Is this news to anyone? No, I don’t think it is.  I think most, most adults have heard this somewhere by now. (I of course, do not think that we should stop, even for a second, continuing to fund programs and schools to spread this information everywhere they can.  We can’t let a single child slip into adulthood without hearing this information many times!  But, let’s be honest about this.  We’ve been spreading that message already, and there are plenty of people who know better. I am one of them.  I am not going to put myself into the category of people to whom we need to do better outreach, or change our message. I am clearly not.  But If I know better, and I’ve had unprotected sex, made mistakes, or made bad choices, with my relatively well educated and culturally connected background, then how are we going to approach those other younger MSMs (Men who have sex with Men, because they don’t’ all identify as Gay.) And Men of color who are increasing their transmission rates still?  Telling them to use condoms is not working. What else can we do?

We talk a lot, I feel, about personal responsibility.  And I have to wonder what part this plays in the HIV world.  Luckily I have removed most of the acquaintances I have, from my life (or taught them to be more compassionate) that have the “they did it to themselves” attitude.  I don’t expect to hear anytime soon, from friends or loved ones, “well they were slutty and they got HIV, that’s their problem.”  I am sure there are still people like this in the world, but I have no patience for them.  As anyone who knows me knows, compassion above all things.  Do all things with love.  But let’s think about personal responsibility.  What does it mean in the Age of HIV? What does it mean in the age of Undetectable Viral Loads, and higher CD4 counts? I saw a pair of underwear for sale from a Canadian organization in DC that said “I Party. I Bareback. I’m Positive. I’m Responsible. “I thought about it for a moment.  What does it mean, Party? I mean I know what that means in NM, but the language is different everywhere. And what could that mean, being positive, bare backing (the act of having unprotected sex, typically anal sex between two men, without condoms. ) and still being responsible?  Isn’t that precisely what responsibility is, protecting others from becoming infected? This begs questions about, does responsibility mean simply disclosing your status?  *surely this is more than a pair of underwear that state your HIV+, I for one, at that point in time, don’t stop to read the underwear very often. (Though I am looking into buying a pair, because they were super cute and why not ?!?!  I don’t drink Jaeger, but I wear that T-Shirt)  Does being responsible mean having a conversation about the role sexually (bottom VS Top – This I won’t get into because My mom reads this blog) and what the risk factors are?  (Your risk is decidedly lower if you are a top, and your partner is the positive one, when the partner/bottom is undetectable viral load etc…) 

The bigger question this brings to mind for me is, where are we headed in terms of “ending AIDS?” 

We talk about Community Planning Groups. And we talk about an AIDS Free Generation.  As my friend Javier recently commented on my FB post, this “AIDS free Generation” seem to be the agenda of politicians and scientists, not of the community. 

So then my question is, how do we decide what the community wants? And who is this community? Should we be talking only to those who are positive, about what we need? That seems unfair as it is as much my battle as a negative person as it is the positive friends and loved ones of mine.  I mean I am just as concerned with making sure I do not become Positive, and protecting my other loved ones, as I am alleviating the virus and its accompanying struggles for those who are.

So I ask, what do we do now?

How do we tackle responsibility? How do we determine the agenda? Is treatment really the primary goal? What does access to treatment mean in a world of STIGMA and SHAME? Transportation issues, healthcare affordability issues. Disclosure issues. Counseling and understanding issues. 

What is the next step?

I came back from DC excited about the promise of an END to AIDS. I was hopeful that “The Last One” Panel would soon be sewn onto the Quilt and that I would be covered with tattooed AIDS Ribbons, and the war would be over. They would simply be badges of honor, or scars of battle for my work and the memory of my loved ones. But now that I have reflected upon it, I have to wonder. Are we any closer, truly than we were a decade ago? Two? In 1984?

Part 2, DC follow up

Good Monday Morning!

In continuation of the conversations I started last week regarding the IAC and my trip, I’d like to address the next couple sets of Highs and Lows. 

High: the conference was back in the US for the first time in 22 years, because President Obama changed a US Visa policy with regard to people who are HIV Positive, allowing them to enter the country again.

Low: In the midst of new statistics showing that the “global South” is actually progressing in their fight against HIV/AIDS, we find a Major Pharma Company is challenging the Patent Laws of India to essentially REMOVE a generic version of a drug from the market, and increase the price of close to TEN TIMES what it is currently selling for.  This is the first time I’ve ever heard of a Drug company fighting to have a patent placed on a drug that has already expired and the generic version has already been made available.  (Imagine, if suddenly, tomorrow, Tylenol brand was able to stop Wal-Mart, Walgreens, Smiths, from making the generic version of their pain reliever and you HAD to go back to buying Brand Name Tylenol all over again!)

It was mentioned early, and It has been mentioned often since the decision was announced so many months ago. But I have to say how exciting and invigorating it was to be in a new era.  After a years long policy of prohibiting entry into the country for people who are HIV+; President Obama repealed this rule, and made it possible for the first time in 22 years to hold the conference here again.  22 years. The new generation of HIV/AIDS medications has been developed since then. The Number of estimated people living with HIV/AIDS went from roughly 6 million to 22million worldwide.  RENT was written and became a Broadway hit in that time period! These are just a few of the landmark things that have happened in this time period since the last time this conference was held here in the US.  I’m glad that the conference has not been in the US every year, all the time, saying to the world w are the center of everything.  But with all the new advancements, and the fact that the first one was held here; it is kind of sad that we went 22 years without.   I’m beyond glad that this opportunity was made to so many Americans, to be a part of the conference! 

Low: Generic drugs being pulled back off the market, due to trade deals and capitalism gone awry.

This is going to be the STRONGEST argument I have against unbridled capitalism ever.  I offer this.  People are people, and people suffering from deserve to be living with HIV. (This applies, really, to any chronic illness in my opinion but this is obviously my focus.)  What is the difference?  Well, in today’s medical world, there are amazing treatments for HIV that help curb the amount of the virus in your body, make it less susceptible to opportunistic diseases and provide longer healthier lives.    But not everyone who is positive has the access to such treatments.  Novartis, a company that manufactures medications, globally, has recently challenged India’s laws regarding patented medication and generic Medicines.    Essentially, without getting into the minutiae of Indian Patent Law, Novartis is challenging India’s ability under their own constitution to create a generic HIV medication that currently allows thousands of people to access cheaper medications.  If they win the country will have to go back to only using the brand-name medication, after the medication itself has been available generically since 2006. 

Capitalists are asking for MORE regulation to decrease competition in the market.  They are asking for an opportunity to make medications that save lives less accessible, in order to protect their monetary assets in one specific market.  I am constantly told that corporate greed isn’t such, and that unbridled capitalism is good for us, and that the market will sort itself out. Well, I’m inclined to believe, from things like this, differently.  I’d like to see the advocates of such unregulated capitalism explain to a woman in India that there is a larger picture for the greater good that will come out of making the cost of her medications ten times higher. 

I had a friend once who said she believed in a capitalist economy with a socialist conscience.  I’m learning now, such a thing is impossible to achieve.  All I can really say, is shame on these companies for looking only at their profit margins, I know that is the reason for businesses to begin with, but when the product or service you offer is necessary for the continued life of individual people, with families, children and parents, you owe society more than the bottom line.

Highs and Lows Part 1

The Opening Ceremonies for the Olympics are happening this evening.  This is a pretty big deal to lots of folks, and though I’m not an Olympics fan, or sports fan really, I can see and appreciate the value they bring to culture and international relations.

I have a friend who is trying to engage me in conversation about them for the last couple days since I’ve been back, but I have my mind totally enraptured in another set of international relations issues.  I’m still processing, analyzing and worrying about the things I heard learned and experienced while in DC for the International AIDS Conference and the last Display of The NAMES Quilt. 

What has been weighing most heavily on my mind are the extreme highs and lows with regard to progress around HIV, mostly those that are associated with this conference. In this post I will discuss the first pair of them, and continue tomorrow with more.

High:  Two new HIV positive people have been found to have no sign of the virus in their body for a consistent two years, after a stem-cell transplant to treat cancer.  This is great news, especially with regard to research for a “cure.”

Low: US Visa policies prevented a major population of high-risk individuals from entering the country, therefore participating in the Conference.

High: the conference was back in the US for the first time in 22 years, because President Obama changed a US Visa policy with regard to people who are HIV Positive, allowing them to enter the country again.

Low: In the midst of new statistics showing that the “global South” is actually progressing in their fight against HIV/AIDS, we find a Major Pharma Company is challenging the Patent Laws of India to essentially REMOVE a generic version of a drug from the market, and increase the price of close to TEN TIMES what it is currently selling for.  This is the first time I’ve ever heard of a Drug company fighting to have a patent placed on a  drug that has already expired and the generic version has already been made available.  (Imagine, if suddenly, tomorrow, Tylenol brand was able to stop Wal-Mart, Walgreens, smiths, from making the generic version of their pain reliever and you HAD to go back to buying Brand Name Tylenol all over again!)

High: The NAMES Quilt was accessible and viewable for so many people who might never have had any other chance to see the memorial honoring their loved ones; their friends and family, sisters and brothers, sons and daughters. 

Low: While we have slowed the number of panels that are added, because Medications are keeping people alive, and we are slowing infections in the “Global South” we are still seeing the same rates, sometimes higher rates of new infections in the US, indicating that we are not solving the problem we are merely making the prognosis more pleasant.

There are, of course, hundreds more highs and lows for this first IAC to be held in the US in 22 years, and one of the largest gathering of people from across the US and indeed the world that DC has seen in a long time.  These, however, are among the most impressive that have occupied my mind since returning from DC. 

High: New News for “Cure Development” Though not as headline –grabbing as the “Berlin Patient”, was pretty impressive for so many of us.  As an advocate, it was hard not to get overly excited about The Berlin Patient.  But I had to keep telling myself, that “Miracles happen” and that a one-time occurrence, is not scientifically solid yet.  After the news of these two new patients came out, I am more hopeful than ever that we are merely step away from a cure!

For those who don’t know, a basic over simplified 101 on the topic.  HIV (the virus that causes AIDS) inhabits Immune cells, and reproduces itself within them, killing the Immune cells; also stopping the immune cells from replacing themselves with other healthy cells.  The new medications, known as Anti-Retrovirals, help to reduce the amount of replications of itself the virus can make. (I said I would oversimplify it.) 

These patients, the two new ones, and The Berlin Patient, all suffered from some form of leukemia, as well as HIV.  The treatment for the Leukemia was eventually, a Stem Cell Transplant.  Stem cells are the root cells in our bodies, and they replicate themselves and become whatever cells necessary, but with a “clean slate” so to speak.  When the Stem Cells were introduced in the patient’s body, to replace the Cancer-ridden blood cells they also replaced the HIV-infected blood cells.  Since the patient was on Anti-retroviral Medications through the transplant (this was new, usually HIV patients went off their HIV meds to be treated for cancers). This means, that we now have at least one idea of how to pursue a Cure to the virus! (It should be noted, that the donors for all three patients were immune to the HIV virus, which is an incredibly small population and complicates things a small amount. )

Low:  While President Obama finally reversed a decades old policy prohibiting HIV+ person from entering the United States, finally allowing the Conference to be held here, Other outdated policies regarding immigration/visitation in the US prevented two major stake holding groups from coming to participate.  In many countries around the world, Prostitution is legal. In many places, it is highly regulated and Sex Workers have licenses or permits to practice their trade, much like barbers and Make-up artists or lawyers and doctors do here in the US. But the US has an immigration/Visitation policy that prohibits anyone who has a Sex Work license, or has any criminal history of Sex Work from entering the country. It is the same with regard to Drug use charges.  This ban was highly unhelpful for having real dialogue around HIV/AIDs on a worldwide scale.  Consider the two issues we’re talking about; Drug use, (intravenous which can be a guaranteed transmission source- and non IV, which can impair or change decision making abilities, analysis and rational thought) and Sex Work.  Trading Sex for money is probably the largest global industry in existence still today.  People want sex, and many people don’t have much luck getting it without paying. (this is not a moral judgment simply a fact stated) and others, prefer to pay for it. Sexuality is fluid; there are no rights and wrongs (within the scope of consent) and who are we to decide what two adults can or should do within the experience of their sexuality?

How can we really discuss with any truth or progress, the epidemic of HIV/AIDS when we aren’t willing to face truth, people are still using drugs, and people are still trading sex for money.  How can we ever expect to bring an End to Aids, if we aren’t willing to face the truths and make them a part of our planning and policy making?

I met a fabulous woman in the global village, who is a former Sex Worker, Trans woman, with a Drug Addiction background as well.  She gave a speech the next morning at a plenary session, about the need to include sex Workers and Drug Users (current and former) in the policy making and planning around an end to the virus. What a brilliant point to be made, how stupid that it needed to be made at all! Why would we even think twice, to include the breeders and keepers of cattle, in the planning around Mad-Cow policies? Or would we dare have a planning session to discuss policy and prevention of teen pregnancy without involving Teenagers? Well yes. In the 60s, or 80s. Maybe even in the 90s a little bit.  But this is 2012.  News flash. People have sex. People use drugs.  Ignoring them as people will not make them stop, refusing to talk to them, or with them, about the struggles they face and the activities they participate in, will not stop them from contracting and spreading HIV!  And most of all,  continuing to criminalize these people, and strip them of their dignity, is definitely not going to make their “problems” go away.  We have such a puritanical ideology around these things, these days.   We still seem to think we will stop Drug use in the US and around the world by incarcerating people, En Masse, for the behavior, for their addiction.  And taking the Condoms away from Sex workers in NYC, and L.A. or using them as evidence for sex trade, is certainly not helping the problem. 

I was blown away to realize that, most of all, we were having a Worldwide conference in HIV/AIDS to discuss Turning the Tide, and we are unable to, or unwilling to talk about what’s just under the surface of the water. 

I’m happy about the new research, the promise of tomorrow, and hope of an End to AIDS. But I’m highly disheartened at the thought that we are so arrogant, so absolutely full of hubris as to imagine we will end this pandemic without discussing two of the greatest contributing factors to   the spread of the virus today. 

I'm not ready, still...

I was listening to the names.  They were being read so monotone... it wasn't emotional really, not like id anticipated.  The weather has been bad so the grass is wet.  They aren't really letting the quilt touch the ground today... so this large group of people silently hold the quilt about waist height.
I was taking pictures, of people holding it and people under it and the stage. 
The names kept  goig, there are 93,000 so I don't know what kind of break or change of pace I expected...  I know the process, and I thought I was ready...

Here's the problem.  I keep thinking I'm ready.
I keep thinking I'm emotionally prepared or that I'm gonna be ok. 
I wasn't.
Like a soccer ball in the gut, I was hit suddenly by wave of grief.  I had waterworks and I couldn't breathe. My mind went fuzzy, my legs numb and I almost buckled my legs under me. 
It wasn't a specific name, it wasn't a panel, it was the realization, the non stop list, the material reminder... 93,000 that are represented...

We left for the morning.  I could take no more...

24 hours

In 24 hours I will be landing at Dallas Airport, ending the first leg of the flight to D.C.

What an amazing rush of feelings I’m experiencing right now at this moment.

The excitement I have for a trip to a city I love, and the fear I have about what I will face when I arrive. 

The joy of spending a week with one of my best friends ever, sealing a bond that has grown rapidly in the past few months, getting to know each other so much more and seeing what wonderful things we will enjoy together. 

The experience of witnessing, participating in and processing the Quilt, something I’ve wanted to see since I was a teenager. The sheer number of names and picture and personal items; toys and records and clothing that was dear to so many people who succumbed to this plague.

There is happiness flowing through me at the thought of seeing Brian, Colin, Karl, Jose, Danielle and Patsy and Anathea and Joaquin and so many others that I have missed!

There is anxiousness about meeting new advocates, and activist and doctors and nurses.

There is worry about participating in the ACT UP rally and the possibilities of that action, since there were 11 people arrested this morning for AIDS activism!

The feeling that is overwhelming through all of this is the gratitude that I have. For the friends who came to help me raise the money for this trip. The family that supported me in making this trip a reality and are taking care of me along the way.  I feel so incredibly loved. I have received messages from acquaintances and dear friends, lovers and “bar-buddies”(people I only see at the club really) all expressing excitement and well wishes for this trip. 

I know it sounds like I’m moving across the country, and I’m not sure if that’s far from the truth in the near future. But what I know now, is that this is the trip of a lifetime for me.

A friend went on his “trip of a lifetime” a couple years ago, and told me all about it. He clearly loved it.  His boss took him on a cruise for like ten days, through The Mediterranean.  I know he enjoyed it; I have no doubt that it was the trip of a lifetime for him. And I’m glad he got to make it.  (This is leading up to something I promise)

The fact of the matter, for me, is that I’m a nerd. 100% I always have been.  My dream vacations are occasionally a week on a beach with liquor and books. A few hot guys would help.  I enjoy camping for a day or so (not too long without a shower. ) every now and then.  But this trip is something different.  The history, and the power, the memories and the hope. The struggle of so many brothers and sisters that I never got to meet, got to know, the fire their families and friends carry with them today.  This trip is truly the trip of a lifetime for me.  An opportunity to carry with me the love and spirit of so many friends and family members in Albuquerque who can’t go with me, and to bring back to them photos, and stories and so much greatness. 

It is times like this that remind I am finally pursuing my true calling in life.  I can’t recall the last time I was this excited about any one thing.  No man, no friend, no movie or dinner or drag show or Election Day has had me as ramped up as this does.

I hope I am making my friends and family proud, knowing that I am embarking on what is bound to be a turning point for my life, as well as a tie in history where we will turn a corner on HIV/AIDS!

I hope you, my friends and family will check in periodically on my blog, on facebook on twitter.  I plan to share lots of pictures, short blurbs about what is going on, and take a few moments to write more thoughtful longer blogs about what the experience is like.  Please share this with me, and if you don’t do so every day, take a little time this day to send some loving energy to those in the afterlife who has have passed, and those living here fighting the fight, winning the struggle or losing it, they need our love! They are, after all, our Sisters and Brothers, our family. 

Preparation...

I am so tired from last night’s fundraising show; I struggled with being able to write today.  The show was mostly a success, not quite at our goal for fundraising efforts, but pretty close considering what we had to work with.

I felt so much love and pride and encouragement from my family of performers and friends in ABQ. It was an amazing evening without a doubt!

I am trying to prepare myself mentally for this trip. It is going to be difficult, to say the least.  I am so excited about seeing my Nugget, one of my best friends for so long and it has been too long since I’ve seen him! And the cute boys I know in DC and that are coming to visit from NYC, will be great fun.

But while performing my final number last night I was hit really hard by the reality of this trip.  I have always approached HIV from an advocacy perspective, and being Negative, that is the best place for me I think. But there is a secondary component that I and so many other Negative advocates and such can do as well. We can be friends, be lovers, be confidantes and be support systems.  I don’t’ know if I’m ready to face the reality, the numbers and the names, the faces and the toys that will be on the quilt. I’m not quite sure If I can process it all, and be well when I return home.  But one thing I’m clear about, this trip is necessary.  It is important to honor these people, and important to love them even after they are gone. And important to remember, that they are our Brothers and Sisters, every single one of them.