By now you should be very well aware of both PrEP and UequalsU. Within the past ten (10) years these two campaigns have literally changed the way we view and understand gay male HIV treatment and prevention. On this front alone, this is nothing short of amazing. But there is another angle, beyond medication, that needs to be discussed. Outside of slowing down, and potentially, stopping the spread of the virus that devastated an entire generation of gay males, they have the combined ability to heal the emotional and mental scaring that plagues us all.
Each and every gay male is either infected, affected or effected by HIV. None of us have been spared the trauma associated with this illness. But, some are definitely suffering more than others; Usually at the hands of their gay brothers.
We have three major obstacles to our healing process:
- Our collective history of trauma
- Our HIV/GLBT orgs
Quick trip through history:
As usual, we need to take a giant step back, to about four (4) decades ago. Before it was called AIDS, our community was being struck down by a new “gay cancer“. It spread fast and furiously from coast to coast and country to country, but not as fast as the fear and eventual stigma around those who were infected. In the beginning, because any gay man was at risk, or possibly was already infected, our community banded together and formed a sort of barrier against the hate. Then the test for HIV anti-bodies was invented and this changed everything.
Once there was a reliable test that was able to tell if someone was, or wasn’t infected with HIV, our community began to turn on itself. We created new, secret ways to announce that we were clean of the virus, and that we “planned to remain that way“. Negative stereotypes about those living with HIV were heard and read everywhere: They were dirty, whores, drug users, who did something to deserve being infected. So-called barebackers where the worst offenders in the eyes of many.
We stopped being care givers of those living with HIV, and became their worst enemies. We created a level of stigma, that was much greater than what straights had, because it was personal and came from within our own house. We turned on our brothers, in a vain hope of distancing ourselves from the illness that was stalking our community.
Fear of contracting HIV, then and even now, is not only normal but rational. To a point. In the decades prior, first there was no treatment, then one that was almost as bad as the disease, then a full cocktail of medications with lots of side-effects. But today, most are on a one (1) pill a day regiment, with few, if any, side-effects. In the bad ole days, most were given, at most, a year to live. Now, those on effective treatment are expected to live a normal life span. HIV has changed, and its time our community changed with it.
We have married these two campaigns because they are borne from the same medication and treatment. Gilead Sciences and their product Truvada, at one point, was the most prescribed HIV treatment in the world. It was also being used as a post-exposure prophylactic (PEP). But further research proved that this medication was also able to, not only, reduce the level of HIV virus within those infected to a level where they are no longer contagious, but it also was able to stop those who are negative from contracting the illness to begin with. One medication, two issues solved.
One would think the entire gay community would be rejoicing with these new facts, but four decades of fear and stigma are hard to shake off. Especially when it is promoted and stoked by our elders and leaders. We have spoken before about Larry Krammer’s shameful take on PrEP, stating in an article for the New York Times, “there’s something to me cowardly about taking Truvada instead of using a condom. You’re taking a drug that is poison to you, and it has lessened your energy to fight, to get involved, to do anything”.
Those most at risk, who saw the value in taking this preventative pill were called Truvada Whores by David Duran, but worst of all is Micheal Weinstein of AIDS Healthcare Foundation, who launched the largest and most expensive ad campaign against PrEP in history.
“LOS ANGELES (January 27, 2012) Earlier this week, AIDS Healthcare Foundation (AHF) launched an awareness campaign to educate employees and neighbors of Gilead Sciences, Inc. about Gilead’s seeming rush to seek FDA-approval of its blockbuster AIDS treatment Truvada as a form a ‘pre-exposure prophylaxis’ (PrEP) to prevent HIV transmission in uninfected individuals. The campaign, called, ‘Gilead: Squeezing Every Last Cent out of Truvada!’ includes advocacy post cards printed with that message and sent to 48,000 homes in the Bay area as well as appearing as newspaper sticky note ads attached to the San Jose Mercury News and which are being distributed on editions of the paper from January 24th through January 29th.”
“It appears that Gilead is trying to ram expanded use of Truvada as an HIV prevention pill through the FDA approval process—despite serious concerns about the drug’s safety and effectiveness,” said Michael Weinstein, AHF President. “Employees and the public should know that the multi-billion dollar profit Gilead is currently making on Truvada as an HIV treatment medication is not enough for them—Gilead now has its eyes on the billions of dollars that can be made by selling HIV drugs to people who don’t even have the disease. We see this is an act of desperation to protect Gilead’s unsustainably high profits from Truvada, which will go off patent in the next few years. Gilead knows it doesn’t have the pipeline to replace this blockbuster AIDS treatment, so it’s doing everything it can to squeeze out more profit—even if that means putting healthy people at risk.”
“It’s high time for Gilead to stop the greed and withdraw its FDA application for Truvada as pre-exposure prophylaxis (PrEP)—or HIV prevention pill—now,” added AHF’s Weinstein.
Just imagine all of the lives that have been negatively effected by this man’s words and actions. He convinced an untold number to reject PrEP as an option, without proof and continues to be a force against its usage. We think it is fair to hold him personally responsible for every infected gay male that read his posts and took him at his word.
In totally fairness to those mentioned above:
- None of these men are medical doctors or chemists trained in the field of HIV medication.
- They have made a living off of the infections of gay men for decades and have gotten used to the lavish lifestyle that comes with huge paychecks.
- Micheal Weinstein is an asshole.
Minority communities rely heavily on our so called leadership. They are supposed to be the best of the best from within our walls. They should be our greatest advocates and champion not only our rights but our collective will. This has not been the case regarding gay male healthcare. We are led by old, white men and women who are terribly out of touch with those they claim to want to help. They are stuck in a past that most of us have never lived through or have a direct connection. Their pain and trauma from the AGE of AIDS, is what drives them.
But also, they helped build AIDS inc.; The structure that controls and dictates how HIV prevention and treatment across the United States, and to some effect, around the world, operates. Their “skill sets” are seen as the model that best services those who are infected as well as affected by this virus. They created the structure, employment paradigm and culture that we are all forced to live under.
But, when we look closely behind the curtain, which we are told never to do, we see an outdated system that is doing all it can to stay relevant. Their failures are on display for any and all that are willing to pay even the smallest amount of attention.
Just take a look at the words of Mr. Weinstein about PrEP in 2012, regrading Gilead’s desire to stay relevant. They are clearly a Freudian slip about his own agency’s eventual demise. He knew then, and surely now, that Uequalsu and PrEP will put him out of business. His job is based on the high numbers of gay males, specifically Black and Brown ones, that contract HIV, not those who remain negative. And when guys living with HIV are healthy, they don’t need organizations like his to hold their hands.
We must take an honest look at who runs these organizations.
These are the people who supported and strongly encouraged those living with HIV take a “drug holiday“. The after effects were devastating on those who participated. Their viral load dramatically increased, and most were never able to get it back down to being undetectable again.
They championed having those who first tested positive for the virus, waiting until their T-cells dropped below 200 (AIDS territory) before treatment.
These are the organizations that convinced a generation that there was an HIV super virus stalking every gay man. And that those who are HIV positive still needed to use condoms because we would be dual infected with an untreatable strain.
They constantly talk about diversity, and push for it in corporate America, but show no desire to practice what they preach. In the old days, HIV orgs were staffed and run by gay males. Those who were living with the virus or most at risk. Their community participation is what made those orgs work. Now they are run by white women who cannot be any further from the greatest at risk population; young gay Black and Latino males. For them this is just another job that ends at 4:30pm.
“If we black SGL [same-gender-loving] men are excluded, then it’s no wonder why efforts are failing,” said Daniel D. Driffin, M.P.H., director of external affairs with THRIVE SS, based in Atlanta. “Health departments and community-based organizations must become uncomfortable and challenged on the disservices to this community. We also have to incorporate new ideas; the days of having clients come to a brick and mortar in most cases can be skipped simply by online media.“
Driffin added, “If systems are designed better, we could see increased services to black gay men.”
When we trust our treatment and prevention to those who make careers and large salaries off of our infection with this virus, why should we expect them to help us stay negative and healthy? They have zero incentive for closing up their shops once we have taken control over our healthcare.
PrEP and Uequalsu not only changes the game for us gay males, both living with HIV and negative, but also the organizations that have been formed to allegedly help us. This medication makes them obsolete, so they do all they can to make sure it stays out of our hands.
Just so you know that this is not all conjecture and hyperbole, ask yourself one small question. If these organization’s major clientele are young, poor white, Black and Latino gay males, why are they the only population within our community that hasn’t seen a significant drop in HIV infections. Why are there other white gay males, who never use their services, seeing the greatest drop in infection but also the highest usage of PrEP?
- The CDC analysis indicates around two-thirds of PrEP users are aged between 25 and 44, suggesting younger people from key populations are not accessing PrEP.
- Young people (aged 13-24) accounted for one in five (22%) new HIV infections in 2015, according to CDC.
- CDC found 7% of people eligible for PrEP received it in 2016. Despite black people having the greatest need for PrEP, 69% of prescriptions where race and/or ethnicity data was recorded went to white people, 13% to Hispanic people and 11% to black people.
- Most people (81%) being prescribed PrEP are paying for it through commercial health insurance schemes, while 12% are being funded through Medicaid. (Every HIV org in the U.S.A gets funding from Medicaid. So why aren’t their clients accessing it through their programs?)
Bruce Richman from Prevention Access in Brooklyn, New York City started the #Uequalsu campaign. One HIV positive gay man, on his own. Now, his message, and travel miles, have spread the world. Listed as one of the most powerful Gay Men in New York, he went against the huge and old HIV/GLBT orgs and won. He challenged their notions about HIV treatment effectiveness and forced them to spread the truth to their clients. His work has proven that we do not need large outdated organization to provide us with fact based information, because they won’t. It is not in their personal or financial interests. But, the truth is out there and we all have a responsibility to first listen, then believe, and finally share it.
Mr. Richman lives in New York City, ground zero for AIDS, but also of major HIV organizations like Gay Men’s Health Crisis (GMHC). With the super large budget they have, and the bloated staff, why wasn’t this issue proffered by them? Why didn’t they research and find facts to back up this concept? What would they have to lose? Oh, everything.
There is an emotional release that comes with the knowledge of UequalsU that negative people cannot understand. For so long we were told that we were dirty and unclean, unloveable and everything we touched would die at our hands. Our sex was to be sanitized behind latex and even then, non-disclosure to sexual partners was and still is a crime worthy of a long prison sentence.
If you are a long-term survivor, you remember the days when people didn’t want to eat from the same plate as someone living with HIV. Swimming pools were drained and cleaned after one young Black boy swam in it. Schools barred kids with HIV from attendance, and employers found every way they could to fire us. This was the reality of living with HIV. It was so much more than our sexual lives. It was our place in the world as humans that was disrupted and rejected. We were unwanted. Uequalsu can change that. If we let it.
Our collective need for this information is more than any straight person can understand. It is bigger than what a negative white woman can comprehend. It is a revitalization and return to life that only someone living with this virus, or at high risk of contraction can understand. But these are not the people who run our HIV organizations or provide us with healthcare information.
Gay men need to begin to believe the science and facts and move past our fears. We must ignore those who are not from our communities who stress their own agendas that don’t support our needs. We must stop our friends in their tracks when they say negative things about those living with HIV and make sure to check ourselves when we find ourselves judging or condemning those with the virus. We must be the change we need, because no one else will do it for us.
The fact is HIV is a gay man’s disease. Yes, others contract it, but this is our load to carry. Here are the latest stats from the American CDC.
- An estimated 632,300 gay and bisexual men had HIV at the end of 2015, representing 56% of everyone with HIV.
- By race/ethnicity, 240,900 were white, 201,800 were African American, 151,200 were Hispanic/Latino, and 38,400 were other races/ethnicities.
- An estimated 83% (526,456) of gay and bisexual men were aware of their infection at the end of 2015.
- Among all gay and bisexual men with HIV in 2015, 62% received some HIV medical care, 48% were retained in HIV care, and 52% had a suppressed viral load.
Our healing of trauma regrading HIV won’t just help our collective sexual lives. It will also heal our community’s soul. We no longer need to fear those living with HIV, and they no longer need to fear infecting anyone else with this illness. Four decades ago, we would have literally killed to have Truvada in our hands and in our mouths. Now, it is being debated, as if we really have other options.
PrEP has the ability to insure that those most at risk for contracting HIV remain negative. This is a simple concept to understand. Without this prevention medication, the lot of these guys would contract HIV anyway. PrEP doesn’t change behaviour or infect someone with HIV. It also has very low side-effects, especially when you consider the alternative. But, instead of supporting someone’s individual choices about his own life and sexual knowledge, we call them names and create another level of stigma around him, and thus our community. Why?
As AIDSmap reported:
“Nine gay men are known to have seroconverted since being put on a waiting list for pre-exposure prophylaxis (PrEP) at a single Manchester clinic, Dr Sally Jewsbury told the British Association for Sexual Health and HIV (BASHH) conference in Birmingham yesterday”.
“Similar cases are likely to have gone undocumented across England, as a result of there being no routine NHS provision of PrEP and the limited number of places available on the PrEP Impact trial, the demonstration project being run as a stop-gap measure while waiting for routine commissioning. Dr Jewsbury described access to PrEP in the UK as a postcode lottery”.
Any and all gay males who are sexually active are at high risk for contracting HIV. This is a fact. PrEP is an option that should be considered for all of us. We are not saying every negative guy should take it, but we are saying they should consider it, because you can either take PrEP and remain HIV free, or…well, you know the rest.
In the United States and U.K. gay Black men have the largest percentage of HIV infection rates but the lowest usage of PrEP. There has been much speculation and debate from both sides of the Atlantic about why, but issues of racism, lack of public healthcare services, medical mistrust and a net-work of HIV/GLBT orgs that are keeping them in the dark are high on the list. Other noted causes, of course, relate to stigma, as PrEP is seen as the “gay drug”.
But, even with these notions “long-awaited findings from HIV Prevention Trials Network study 073 (HPTN 073) were published Feb. 15 in Journal of the International AIDS Society. The study found that black men who have sex with men (BMSM) in three U.S. cities had very high adherence to pre-exposure prophylaxis (PrEP) when paired with culturally competent supportive services. This study is important in that it belies some of the common thinking that BMSM will not use PrEP and cannot maintain use enough to protect against HIV.”
“Furthermore, the people who were using PrEP were not likely to see an increase in other STIs, which has been a major concern of some STI prevention advocates and providers. TheBodyPRO previously reported the results of a study from HPTN 073’s STI findings.”
“HPTN 073 differed from previous PrEP trials in several ways. It was one of the few studies to solely enroll black MSM in the United States. Also, unlike other PrEP trials, HPTN 073 was led by black gay researchers from the community designing the study and coordinating the research.”
What this means is that if we are able to educate this population about the benefits of PrEP and how effective it is, their usage will increase and their infection rates will drop. Also of note is the need for diversity in HIV research and staffing. The mistrust for the medical community is also a code for the white medical community. We are all more open to information when it comes from those we trust. Those working at our organizations know this, but refuse to make changes that will help our community instead of their pocket books.
The dereliction of duty by our HIV organizations to combat HIV stigma within our community, has allowed it to fester and grow exponentially. Now, we must all work together to remove the fear based information out of our brothers’ head, and replace it with the truth. This makes our jobs so much harder.
PrEP is not a medication that anyone is advocating for our community to take like candy, or should be put in our bottled water supply. But, we all are at major risk for contracting this virus. If your actions have you concerned, then you need to buck what is being told to you and see if PrEP is right for you.
A Reset Button:
Our collective community healing begins with accepting the new facts of our reality. Uequalsu is a fact and PrEP works. These are not opinions or views, but hard evidence based on science and research.
Fear of each other and our sex lives has forced us into a corner. But now we can escape and resume the lives we would have had before this virus. We can stop being afraid of our sexual lives, and other gay males. We can stop spreading lies and fight against the stigma that has literally plagued us for four decades. We can be free. If we allow ourselves to be.
But, freedom will come at a price. Our HIV organizations have let us down and led us down a dark path that only benefits them. They are no longer staffed by our community members, so they have no idea what a night on Grindr can be like for someone living with HIV. They have no concept of what years and decades worth of ill-informed teachings have done to those living with HIV. Yes, they have helped some, but many more of us are damaged by their neglect.
As HIV has changed, so must we. It is time we move past the fear of HIV and AIDS and concentrate on gay male health as a whole. Who we are as males; physically and mentally as well as sexually. We can begin to look at our culture from a different vantage point, away from from the fear and with clear eyes. We can be gay. We can be happy. If we let ourselves be.
A new way forward:
The world is changing. The internet is growing everyday. And the days of brick and mortar HIV/GLBT organizations is over. They just don’t know it yet. This is our time to take back our healthcare power. We have the ability to fight back against those who have kept us in the dark about our well-being for decades and still continue to educate ourselves about our bodies.
We must look past HIV and begin a search for greater access to gay male healthcare. We are more than our sexual orientation and we deserve to be free of the burden of HIV as our defining factor.
All of this starts with each individual. All of us have the ability. The question is, what’s taking us so long to act?