Tag: activism

How I Contracted HPV and What I Did About It

This post is written by Tashia Amenerio, founder of the non-profit HPV Awakening. She writes from her personal experience why she is pushing for HPV be reportable- meaning sexual partners must legally inform each other of their status- and why she urges you to sign the petition to get the FDA to approve HPV testing for men.

(Un)Knowing HPV

Graph from the CDC. Fourteen million will become newly infected with HPV this year. This means that almost every sexually active person in the US will acquire HPV at some point in their lives.

When diagnosed with HPV, life as you know it is over. You face disturbing contradictions within the medical community . On the one hand, there are those who describe it as “this generation’s AIDS”. On the other side, you are faced with medical “experts” who don’t know their head from a hole in the ground and tell you that HPV is nothing to worry about.

Here is the kicker: Most HPV strands, like most cold or flu strands, really don’t do much of anything but chill out in your body having a viral party of genome development. The issue(s) arise when you get people who are knowingly infecting others with cancer causing strands- a crime of which I’m personally all too well aware. And then you have others who are unknowingly transmitting the STI. A major reason for this is because it is not standard practice to get tested for HPV- and there are no official tests made publicly available for males- despite the fact that HPV is the most prevalent STI in North America right now.

So What Can We Do?

www.hpvawakening.org.

Well, I started a nonprofit HPV Awakening Inc. I lecture all over the Florida and have done a few media interviews. I sit here now writing you about my experiences and I’ve launched a petition that needs 100,000 signatures by May 28th, 2013, so that it can go to the White House to get HPV male testing approved by the FDA. Sign the petition.

I have contacted several local media stations and sites. And I have tried moving my civil court case to a criminal one in order to have the state acknowledge the fact that HPV cancer strands should be taken as serious as AIDS/HIV strands.

The Miami DA has kindly informed me that, well, HPV isn’t mentioned in the Florida statute at all. Thus they can’t help me. This is in spite of the fact that my case is backed with the full support from the local police department that filed my report (Miami Gardens), and they are willing to facilitate the investigative work!

So here is where you the reader come in. What can you do? Well, if you have ever been diagnosed or know someone that has been- I can relate. It sucks and it isn’t easy. And fun (insert EXTREME sarcasm) questions and situations follow diagnosis.

From Why Me? To What I Will Do About It!

In my case, I had been a virgin with no sexual experience prior to my ex, so I didn’t have to go through the questioning phase of Who? But I did have to go through the constant questioning phase of Why? After I received my diagnosis and contacted my ex he kindly informed me that he had known but since it hadn’t directly impacted me he hadn’t cared.

But that wasn’t the only “Why”. The “Why me?” phase kicked in and it kicked in for several of my friends too. Because once you get sick, it isn’t just you. It’s you and those that care about you, or who know you in a caring light- family, acquaintances, associates, co-workers and strangers you disclose to- that are impacted.

I remember one conversation in particular with a friend of mine that went through a bad life phase (attempted suicide and was a bug chaser at one point in time) sitting on the stairs while we shared a smoke (a short lived habit I picked-up during that “Why be and Why bother” phase). He was crying because he couldn’t understand how “Good people like [me], who never do anything risky end up getting sick and people like [him], who have tried every way possible to be ill and die didn’t.” Easy answer: “I don’t know what a ‘good’ person is, but sometimes Shit Just Happens.” It is a matter of what you do with the situation that counts.

I finished the cigarette and realized that some habits aren’t worth starting or maintaining just to stay wallowing in self-pity.

For those of you that are still reading, I say Yay! Thank you in sharing in my past misery. It really does love company.

Please sign the petition to get HPV male testing approved by the FDA. Go to We The People to sign.

May 5, 2016
Why We Still Need #CondomWeek

What is condom week?

Condom week is a national campaign to raise awareness not only about the importance of safer sex, but also how condoms can add to your sexual pleasure. Yes, contrary to popular belief, condoms don’t make sex less good. Many studies have found that those who report condoms reduce pleasure are men and women who do not use condoms, or don’t use them often. In other words, people who use condoms often- because they approach it with a better attitude and because they’ve learned what condoms they like- report greater pleasure with protected sex. Attitude, condom education and experience all play a role in sexual satisfaction.

That, my friends, is why we need National Condom Week.

Condom Week lands at a time in our calendar when people are puckered up with Valentine’s sweets. From Valentine’s Day to February 21st, while the air is plush with intimacy, what better time to integrate safer sex into the national conscience and give out lots of free condoms!

Condom Week originally began at the University of California in the 1970s, and has grown into a educational event for high schools, colleges, family planning organizations, AIDS groups, sexually transmitted disease awareness groups, pharmacies and condom manufacturers. Planned Parenthood and Advocates for Youth are just a few of the hundreds of non-profit organizations who participate in Condom Week, setting up sex education booths at universities all over the country and distributing over 50,000 free condoms. These booths, as well as open public seminars, will discuss topics such as safer oral sex, using lube with condoms, internal condoms, consent, and how to talk safer sex with your lover.

So again, if National Condom Week has been celebrated to raise awareness since the 1970s, why do we still need it today?

Because…

– Only 19 states require that, if provided, sex education in school must be medically, factually or technically accurate. That leaves schools in 31 states without fact-based sex education oversight!

– Over 19 million people in the United States are diagnosed with an STI. That number increases dramatically if we account for those who do not know their status.

– Two-thirds of all individuals who acquire an STI are younger than 25.

– In 2013, 66 percent of sexually active male high school students reported that they or their partner used a condom at most recent sexual intercourse, compared to only 53 percent of females.

– More than 1.2 million people in the United States are living with HIV infection, and almost 1 in 7 (14%) are unaware of their infection.

– The United States continues to have one of the highest teen pregnancy rates in the developed world (68 per 1,000 women aged 15–19 in 2008)—more than twice that of Canada (27.9 per 1,000) or Sweden (31.4 per 1,000).

If I haven’t convinced you yet to celebrate National Condom Week, jump over to this article by Heather Corrina which debunks all the condom myths you’ve probably faced.

Do your part in public health and stay aware.

February 14, 2015
There Is No Cancer in #CondomTruth

Fear-based condom marketing is the real “cancer” here.

Last month, a new condom brand called Sustain began promoting a petition that demands the FDA to “Get Carcinogens Out of Condoms”. The possibility that condoms could cause cancer will scare the shit out of consumers and make them think twice about what condoms they invest in (that is, if they don’t turn away from condoms entirely).

And that’s exactly how Sustain wants you to react.

They center business principles around transparency, thus, making it their duty to educate the public of lurking dangers within the condom industry: “Fear not. Because their product is clean of any health risks. Want to avoid carcinogens? Sustain is your best and only option.”

Thankfully, these grand claims have not passively swept under the radar.

Melissa White’s investigation on RH Reality Check, Cigarrettes Cause Cancer, Condoms Don’t, reveals that the petition is based on a non-scientific, non-peer reviewed study, which is partly financed by Sustain themselves. Despite the fact the World Health Organization has never found any condom carrying health threatening amounts of nitrosamines, the study continues to favor Sustain over other condom brands; competitive brands which also profit in the vegan, fair-trade condom niche. As a result of White’s call-out, the group that conducted the study publicly clarified their findings stating that, indeed, there is no scientific proof that any condoms cause cancer.

Leave that worry to rest. Great! But the real issue at hand is the company’s irresponsible marketing and misuse of information.

Sustains efforts to “cleanse” the condom market of (unfounded) health risks is clearly motivated by business profit at the detriment of public health. In reality, to tout that “all other condoms except ours cause cancer” is a dangerous lie. As Melissa White states, Sustain’s marketing strategy has “the potential to unravel decades of committed work focused on saving lives through encouraging condom use and education.”

It’s completely unethical to skew consumer information with fear-tactics. The last thing we need is more lies to fuel safer sex stigma and condom hate. Hence we must to counteract.

Join the #CondomTruth campaign!

SHARE THE ARTICLE: Cigarettes Cause Cancer, Condoms Don’t http://bit.ly/1w5jzd3

TWEET: copy/paste these tweets or make your own

– Cigarettes Cause Cancer. Condoms Don’t. http://bit.ly/1w5jzd3 #condomtruth #bettercondoms

– I prefer my fiction at the library. Stop the misuse of safer sex information. http://bit.ly/1w5jzd3 #condomtruth

– Faulty studies & scare tactics risk lives http://bit.ly/1w5jzd3 #condomtruth #bettercondoms

– Misleading marketing hurts public health http://bit.ly/1w5jzd3 #condomtruth #bettercondoms

– Trust #science, not misleading marketing http://bit.ly/1w5jzd3 #condomtruth #bettercondoms

– Choose condoms with ethics not scare tactics http://bit.ly/1w5jzd3 #condomtruth #bettercondoms

TWEET at Sustain Condoms and share your thoughts with the campaign hashtag: #condomtruth

@sustaincondoms
@JeffHollender (Sustain’s Founder)
@missmeiks (Sustain’s co-founder)

Let’s take a stand and remind Sustain what true business transparency really means.

December 6, 2014
Shout out! New Collaborations in HIV Advocacy

New relationships of advocacy are vamped. Lara, an editor of Condom Monologues, explains what’s in store to help creatively support the HIV Disclosure Project.

Gay Pride, Toronto, 2011. Photographer Wayne Bristow. Posted with permission.

Hi there! As an editor at Condom Monologues writer’s collective, I am excited to announce my collaboration with the HIV Disclosure Project. I will be actively involved in their social media, mostly on Twitter (@sexpartnersHIV), helping promote their blog, their campaigns and continued dialogue with HIV networks and allies. I’ve teamed up with them because I fully support their work to re-frame the way HIV impacts interpersonal relationships.

The HIV Disclosure Project is

…designed by and for the HIV community to work through obstacles that prevent people living with HIV from disclosing their status to potential sex partners. Drawing from various tools in theater, humor, storytelling, photography and more, the project functions to address stigma that takes place on the dating scene. Everyone works together to educate the public and change perceptions of people living with HIV.

What we want is a world in which every HIV disclosure to sex partners is received with acceptance, understanding and tolerance.

Emphasis on story and lived experience is what bridges The Disclosure Project and Condom Monologues. Condom Monologues is a growing archive of personal narratives and story illustrations made collaboratively with the storyteller and graphic artists. As a collective dedicated to sex education through real life storytelling, I feel this partnership will sharpen Condom Monologues’ focus on HIV awareness and open our platform to respectfully listen to the concrete realities of managing stigma, disclosure in the dating scene, and navigating safer sex options without fear.

Watch Out For New HIV Public Messages

Also newly on board the HIV Disclosure Project is Wayne Bristow – HIV advocate, blogger for PositiveLite.com, Canada’s best online HIV information magazine and he is their social media coordinator. He has taken part in two of the CTAC Positive Sex – Train the Trainer workshops and recently facilitated one where he trained some of his peers through community engagement. Emanating such passion and advocate spirit, Wayne is an invaluable asset to the HIV Disclosure Project. He is currently planning the video production of HIV public service announcements for the HIV Disclosure Project. In his spare time Wayne is a hobby/freestyle photographer.

If you are interested or have questions about the video project contact wayne_bristow@hotmail.com

I am excited to help support and engage in such a crucial and progressive movement. Let’s keep the dialogue expansive and inclusive. Meet you on twitter!

Lara
Editor & contributor @CondomMonologues.com

May 29, 2014
#MySexPositivity with Erin McKelle

For this young e-activist, sex positive is a way of being in the flesh (and in the virtual). While her topics range from slut shame to reproductive health, she is most interested in how sex positivity manifests in our day to day interactions with each other. Through self-reflective vlogging and digital writing, Erin builds a bibliotech of critical feminist self-love. Her prolific writing is sure to inspire.

1) Identify one or two trends, or influential people in the Sex Positive community that you identify with (or are inspired by) and those trends which you relate to not-so-much.

Something I can really identify with is ending victim blaming and slut shaming. We’re all taught to view women as these sexual provocateurs who need to not tempt men with their bodies. Meanwhile the media is objectifying women’s bodies and glorifying the virgin/whore dichotomy. I remember growing up and being really confused by all of this. I was also very in touch with my body and sexuality from a young age; but I was hearing these “sex is bad, and especially bad for women,” messages all around me, which caused a lot of internal conflict. Sex positivity, for me, is to reject these ideas and cause society to question our gendered and sexist views of sexuality. And people are starting to listen. Take for example The UnSlut Project and the recent book Slut! Growing Up Female with a Bad Reputation by Leora Tanenbaum that are now making big waves.

Something I don’t identity with is Kink. I think it’s great that the sex positive community is busting myths and stigma around it, but it’s not something that I personally am interested in!

2) How do you define “sex positivity” for yourself and your work? In other words, what is your primary passion and how do you distinguish your writings and interests from other branches of thought within the sex positive movement?

Follow @ErinMcKelle

I define “sex positivity” for myself as a philosophy, a of way of being that is centered on the idea that sexuality is healthy, beautiful and courageous. This has in turn influenced my work- all of my activism, writing, and blogging is rooted in this core principal.

My primary passion is definitely reproductive rights. Without them, there’s no way that feminism could have ever made as much progress for women as it has! There’s also been a constant threat to those rights for the last 50 years, so it’s really important that this issue isn’t seen as already “won”. A recent example of this is the lawsuit that Hobby Lobby has filed to avoid covering contraceptives on their employee’s health care plans, that could result in employers deciding which contraceptives employers have access to, if they choose to offer birth control coverage at all. Another is the recent abortion restrictions that have been legislated throughout 2013 in Texas, Ohio, North Dakota and North Carolina, which beg the question of what right, if any, do we have to ‘choose’ anymore.

I mainly distinguish myself through my feminist spin that comes with all and any analysis that I do. Also, I tend to focus on how the dynamics of relationships work to reinforce patriarchal and oppressive social constructions. I believe that our day-to-day interactions with people really shape our interactions with the world and how we feel about ourselves. There’s always a lot of talk about large, institutional problems, like the lack of access to sex education in schools or the fact that in most States only heterosexual couples can get married, but never much talk about how our day-to-day relationships are central to our identities and oppression(s). I want to change that. My sex positive feminism gives me the critical tools to think through these seemingly “normal” and habitual daily practices.

3) What directions do you think sex positivity will take within the next 5 – 10 years? Or what topics and with what platforms would you like to see sex positivity develop more thoroughly within the next 5 – 10 years?

I think sex positivity will really start to embrace a lot more ideas from queer theory (not that it already doesn’t) and this will define more of the movement. Deconstructing the structures of sexuality that exist throughout society will act as a liberator for everyone and become more mainstream.

I would really like to see sex positivity collaborate with other social movements and make connections between other forms of oppression (like poverty, racism, environmentalism) and how they perpetuate sex-negativity. I think that most social movements are working under very similar philosophies and goals. The more we connect and collaborate, the more power and influence we’ll have.

Opinions shared are the author’s own. Want to participate in this interview series? What is your sex positivity?

January 2, 2014
Dear AIDS Service Orgs, your condom campaign isn’t working.

We need to question the efficacy of pushing condoms as the only safe sex choice. The condom campaign does not seem to be working anymore and people are not getting the message. Yet Aids Service Organizations (ASOs) continue with this message. Granted, with PrEP there is a shift in responsibility that goes beyond those already infected with HIV, to everyone engaging in sex. Yet this shift brings a lot of discomfort as people outside of the HIV community and within begin to see their own roles and responsibilities changing.

Sticking with the condom campaign is the safe route, (pardon the pun) for institutions as they begin to formulate and consolidate their position on PrEP. Is there fear that supporting PrEP could imply promoting unsafe sex and sexual behavior that is out of control? Is promoting the use of PrEP taking too much of a risk with funders and stake holders who are comfortable with the good old (but not tried and true) condom message? Is PrEP a tough sell as the general public remains in a state of fear and denial about HIV?

Let’s be honest. Who practices safe sex all the time? People make mistakes. People faulter. Who likes using condoms all the time? I don’t. I was in a long term relationship with an HIV negative person where “all conditions” were adhered to, meaning – we were monogamous, had no other sexually transmitted infections, I had an undetectable viral load and was on anti retroviral treatment. Also being a woman, the likelihood of transmitting the virus has been shown statistically to be low. Throughout this time my partner remained HIV negative. It was what Josh Kruger refered to as an “adult informed decision”.

But if I mention this to the general public or my local ASO the reaction would be one of horror. I would be handed a condom pack, with a corny safe sex message inside, and given a pat on the head and small lecture on safe sex with condom use as my only option. My job might be threatened too as I am not adhering to the organization’s policies.

In the meantime, I will continue to tow the party line, pretend that condoms are the only solution to reducing HIV transmission rates, while those of us in the know will continue to make responsible, informed decisions about bare backing. Are Aids Service Organizations, the Supreme Court of Canada and the general public in denial about the latest development in research and medical evidence? Who are the risk takers and who is going to take risks and acknowledge that condom use alone, as the safe sex message, is not working.

I choose to remain anonymous as I value my job and the funding that comes to the organization I work for.

Yours truthfully,

“Virgina”

Monologues are independent stories. The opinions shared are the writer’s own. To learn more about PrEP, ARTs, and other prevention measures, the Beta Blog is a great resource. What HIV sources do you recommend? Have you experienced fear of PrEP? What HIV awareness campaigns are working?

December 1, 2013
Youth-Made Announcements The Public Must Watch

The three videos presented here are like no other sexual health messages shared on prime time TV. They were made by HIV-positive youth from the Young Adult Program (YAP) at St. Luke’s and Roosevelt Hospitals’ Spencer Cox Center for Health. This video initiative, designed and facilitated by the consultancy group Connected Health Solutions Inc., has turned top-down approaches of traditional PSAs on its head.

Just “wear a condom every time”

For those of you who can’t remember, public service announcements (PSAs) from the late 80’s to ‘90s predominantly involved high profile personalities like Magic Johnson and Whoopie Goldberg telling you to “wear a condom every time”. Here’s young Whoopie (nostalgia!).

Babies with Hiv and Aids 1990s by NoHivNoAids

Some of these messages were groundbreaking for the time. Others were not so effective. In our interview with the founders of the HIV Disclosure Project, we discuss how early HIV awareness campaigns were based on fear, pushing condoms as the only option to avoid death. These messages were vague. They obscured real-life information about the different degrees of risks and how to manage those risks with options suited for the individual or relationship. You certainly didn’t see Growing Pains’ Kirk Cameron speaking about “fluid-bonded” couples, or how oral sex is risky for some STIs while less risky for others. Consequently, 30 years into the HIV pandemic, STI stigma and misconceptions about transmission are still perpetuated today.

But there is hope. The Young Adult Program (YAP) at St. Luke’s and Roosevelt Hospitals’ Spencer Cox Center for Health in partnership with Connected Health Solutions, Inc. (CHS), have changed mainstream top-down approaches of PSAs. They’ve cultivated a safe and critically reflective space for youth to produce their own public health messages. Upon contacting the project for an interview, however, I learned that their collaboration has been forced to stop due to loss of funding and state budget cuts.

#SpreadTheWordNotTheVirus

Depressing as this is, some of the youth who made the videos below are in the process of organizing an Indiegogo campaign to help continue the program. And not without celebrity pizazz and support from DJ Caroline D’Amore (whose mother died from AIDS-related causes). Watch this space for updates: SpreadTheWordNotTheVirus. And follow CHS facebook page.

YAP and CHS behind the scenes film production of “It’s Not Just a Guy Issue”

A New Era of PSAs

CHS has been working with at-risk youth from YAP for a couple of years. What’s novel about their work is in the production process. They collectively produce online PSAs that address issues relevant to the participants. Kenny Shults, president of CHS, explained in an email that over a period of a few month, participants would run through a series of group exercises all geared towards thinking critically about a social issue (such as HIV stigma) and develop an effective script. “We then spend about a month working together to complete all of the pre-production activities such as casting, props, locations, etc. and fine tuning the script. Then everyone shows up to the shoot (1 day per PSA) to make a movie. It is an incredibly fun, interactive, educational, and inspiring process,” Kenny explains.

What results is a number of original and thought-provoking messages. The PSAs presented here were made by HIV positive young adults from YAP. The first video conveys the message that people living with HIV can give birth to and raise healthy children, have a healthy family and lead fulfilling lives. Kenny highlights this video in particular, stating:

…a number of the youth who made the “Happily Ever After” campaign are now taking their meds after making this piece. One young woman says: “Every time I take my pill in the morning I picture Emma’s face” (Emma is the name of the actress in that PSA). We couldn’t have asked for a better outcome.

This is precisely the point. The significance of the workshops is not the glossy quality of the final product; rather, it is the process which matters most. Making a short film by and for the very population it represents, and finding a collective voice together cultivates a transformative power from within. Participants complete the PSA with a critical, self-reflective understanding of the issue and the social structures and institutions that influence such an issue. In effect, the participants’ attitudes have positively shifted.

The second PSA, “One Condition”, tackles HIV stigma by asking the audience “What would you do?” in the situation of HIV disclosure. It’s an important PSA because not nearly enough people understand that HIV is a manageable disease. Advancements in treatment mean that risks of transmission have changed dramatically, and so too must people’s attitudes and fears.

For more about the workshop process and theories that underpins their approach, read the company’s statement and Kenny Shult’s article at The Good Man Project.

What do you think of these PSAs? Do you feel they successfully address a lack in public discourse about living with HIV? What messages would you like to see more of?

An effective condom message

I end with this last video about the importance of safer sex. Unlike the PSAs of the 1990s, this video addresses real obstacles (like embarrassment of buying condoms) and conveys real choices. It offers an alternative ending to another video about condom use and brings light to the forgotten option of female condoms. We follow a guy throughout the day as he prepares for a date, yet at each point that a condom presents itself he is too embarrassed or uncomfortable to pick one up. When the moment comes he is unprepared. Lucky for him, condom use isn’t just a guy’s responsibility.

To view more videos campaigns made with CHS by teens, LGBTQ folk, high school bullies and more, check out the My Media Life playlist by CHS.

August 23, 2013
Protest Unjust HIV Prosecution! July 8th

On July 8th a woman is put on trial for aggravated assault (one of the most serious offenses in the criminal code) because she did not disclose her HIV status to her sex partner. In Canada, people living with HIV are legally required to disclose their status to their partner before having “sex” that involves “significant risk” of transmitting the virus (Canadian HIV/AIDS Legal Network). However, the law has prosecuted numerous cases in which sex posed no significant risk of HIV transmission, including the July 8th “JM” trial. Justice is being mismanaged.

The law has not kept up with scientific advancements and understanding about risks of HIV transmission. Courts do not routinely considered important information about exposure such as whether the person was taking antiretroviral treatment, what the person’s viral levels were at the time, whether protective barriers were used, and what sexual act occurred, as some involve less risk than others.

Support JM & Protest on July 8

According to activists at AIDS ACTION NOW, the charges of “JM’s” case refer to “oral sex with an undetectable viral load” and despite the extremely low risk (almost zero percent) the court “is refusing to drop the oral sex charges”. She is also being charged for allegedly engaging in unprotected vaginal sex. However, her viral load was “undetectable at the time and she claims a condom was used”. Read the full statement by AIDS ACTION NOW.

There will be a protest against unjust prosecution of people living with HIV at the courthouse in Barrie, Ontario at 13:00 on July 8th. For more info visit the event Facebook page or contact aidsactionnowtoronto@gmail.com.

Image from documentary film, Positive Women. Directed by Alison Duke; Executive Producer Canadian HIV/AIDS Legal Network. Available to watch online.

Want to learn more?

The issue of HIV disclosure is so complex and poisoned by stigma. One can live a happy, sexual life living with HIV. Yet this is seldom represented or discussed in public discourse. More stories need to be shared about peoples’ experiences with disclosure and being prosecuted.

We’ve launched a series of monologues about different experiences with HIV disclosure and safe sex, such as Virgina’s letter to her sex dam. Our interview with folks at the HIV Disclosure Project (Why Not Have Sex With Someone Living W/ HIV?) describes how people who disclose their status put themselves against enormous risks including risk of verbal and physical abuse, risk of rejection and isolation, risk of discrimination by being “outed”, and violations of basic human rights.

There is an important 45 minute documentary, Positive Women, which is free to watch. The film explores how the law of HIV non-disclosure actually fails to protect women and reinforces discrimination against people living with HIV.

For more information about HIV disclosure and criminalization visit Canadian HIV/AIDS Legal Network.

July 3, 2013
Why Not Have Sex With Someone Living With HIV?

“Positive Sex ideally would involve disclosure being met with acceptance and understanding, not rejection and stigma. Positive Sex would involve the elimination of terminology that is discriminatory on the dating scene and a shift within the public whereby people would consider dating a person living with HIV, without fear or stigma.”- Gail from the HIV Disclosure Project.

The HIV/AIDS pandemic of the 1980s led to a surge of condom campaigns. Now when we hear the term “safe sex” we immediately associate it with male condoms, the Pill, unwanted pregnancy, STIs. HIV transmission is discussed in sex education, but what’s neglected are the specifics about HIV as it is today: how it is manageable, what “undetectable” means, why terms like “clean” are harmful, what the hell is PReP (Pre Exposure) and PEP (Post Exposure Prophylaxis). And we certainly never discuss the possibility of having a healthy sexual relationship with a person living with HIV.

The reason is because, frankly, there is still fear associated with the virus. People like Gail, Jessica and Jolene, founders of the HIV Disclosure Project, know that HIV stigma persists just as it did 30 years ago. It permeates our fears of “death, dying, contracting the virus through protected sex, casual contact, fear of dating a person who is living with HIV as others may think they are positive as well (guilty by association). Fear that people living with HIV are highly contagious”, Gail describes in our interview. “Many people know the facts about transmission and yet are afraid that there might be some “unusual” accident which will lead to infection.”

The Stigma Cycle

Image from the HIV Disclosure Project Facebook Page

Safe sex messages have traditionally been built on fear and as a result, the campaigns have failed miserably; from that fear is born stigmatization and prejudice against people who are HIV-positive. People who choose to disclose their status risk being verbally and physically abused, risk rejection and isolation, risk discrimination by being “outed” (loss of control over who knows their status), risk discrimination in the workplace, schools, with housing, health care and violations of basic human rights. People are deterred from getting tested and treated regularly; it results in silence about one’s status; thus the virus continues to be transmitted. “It’s what we refer to as the Stigma Cycle,” Gail explains.

To fight the stigma born out of fear, the HIV Disclosure Project facilitates open discussions about how to make the dating scene more inclusive of people living with HIV. “We provide a safe, non-judgmental space for people living with HIV to role play, practice a variety of techniques for disclosing if they choose to, while aiming to empower individuals to have options, externalize stigma and challenge public perception of people living with HIV. We want to have PSAs (public service announcements) that ask the question – Why not have sex with someone who is living with HIV?”

The HIV Disclosure Project

The idea for the Project started with three colleagues- Gail, Jessica and Jolene -who saw a need for a supportive workshop where people living with HIV could “discuss, disclose, practice disclosure, find comfortable and timely ways to gauge when to disclose or not, and to process feelings that derived from stigma and rejection,” Gail says.

“People living with HIV also needed a space where they could challenge and change dating terminology which perpetuated stigma and fear of HIV, including terms such as “clean”, “disease free” and “dirty”. New terminology was needed to describe one’s status that excluded negative connotations and included acceptance, tolerance, and a willingness to consider dating a person who is living with HIV.”

At the time, there were no written manuals on disclosing HIV to sex partners. Granted funding from ACCM (AIDS Community Care Montreal), the three colleagues wrote a manual titled “Positive Sex” and designed a pilot workshop that resulted in much success. The Disclosure Project received further funding from the CIHR (Canadian Institute on Health Research) through CTAC (Canadian Treatment Access Council) where Jolene works as Program Manager. Workshops are now being implemented across Canada in collaboration with ACCM. Jessica facilitates these workshops.

I asked Gail how we might de-stigmatize sexual relationships for people living with HIV. The answer might seem controversial but it reflects upon the fear tactics that are often utilized in government supported sex ed programs and why we need to adopt Positive Sex frameworks in public health.

“What needs to be reinforced in the mainstream are the basic facts about HIV transmission and repeated public service announcements and education which tells the public that it is socially acceptable to have safe sex with a person living with HIV, that having sex with a person living with HIV does not mean they are going to contract HIV. There are many sero- discordant couples who have been in long term relationships where the HIV negative person remained negative.”

“Positive Sex” is the new “Safe Sex”

Image from http://www.ctac.ca/positive-sex

Gail, Jessica and Jolene bring up an important point about the meaning of “safety” that is taught in sex education. What’s often overlooked are issues of emotional safety, such as consent and self-esteem, that are both cause and effect of sex. Few curricula teach consent or communication in a way that is relevant to sexual diversity. Instead, outdated sex education shames discussions of sexual pleasure and desire, and the different types of relationships humans are a part. The Disclosure Project views this type of shaming in opposition to what is positive sex.

As Gail explains, “Positive sex to us means finding ways to successfully disclose one’s HIV status while not feeling threatened, stigmatized or experiencing any negative reactions while disclosing. Positive Sex also involves challenging and changing public perceptions of people living with HIV. In the past, safe sex campaigns were based on fear and as a result, thirty years into the pandemic, there are many misconceptions that perpetuate fear and stigma which need to be challenged.”

“Positive Sex ideally would involve disclosure being met with acceptance and understanding, not rejection and stigma. Positive Sex would involve the elimination of terminology that is discriminatory on the dating scene and a shift within the public whereby people would consider dating a person living with HIV, without fear or stigma.”

To learn more about The HIV Disclosure Project follow them on twitter @sexpartnersHIV. Like their Facebook Page for daily prose, thoughts and poems related to HIV and disclosure.

For information on HIV transmission, prevention, safety and risks refer to ACCM and CTAC. There are a lot of them, but other helpful resource are: CareXO.com, the YAHAnet (Youth, the Arts, HIV & AIDS Network) and The Life Foundation. There is also an excellent article by The Body.com with medical information about the risks HIV transmission when having sex with someone who has undetectable viral levels. Keep yourself informed!

June 10, 2013
How I Contracted HPV and What I Did About It

This post is written by Tashia Amenerio, founder of the non-profit HPV Awakening. She writes from her personal experience why she is pushing for HPV be reportable- meaning sexual partners must legally inform each other of their status- and why she urges you to sign the petition to get the FDA to approve HPV testing for men.

(Un)Knowing HPV

Graph from the CDC. Fourteen million will become newly infected with HPV this year. This means that almost every sexually active person in the US will acquire HPV at some point in their lives.

When diagnosed with HPV, life as you know it is over. You face disturbing contradictions within the medical community . On the one hand, there are those who describe it as “this generation’s AIDS”. On the other side, you are faced with medical “experts” who don’t know their head from a hole in the ground and tell you that HPV is nothing to worry about.

Here is the kicker: Most HPV strands, like most cold or flu strands, really don’t do much of anything but chill out in your body having a viral party of genome development. The issue(s) arise when you get people who are knowingly infecting others with cancer causing strands- a crime of which I’m personally all too well aware. And then you have others who are unknowingly transmitting the STI. A major reason for this is because it is not standard practice to get tested for HPV- and there are no official tests made publicly available for males- despite the fact that HPV is the most prevalent STI in North America right now.

So What Can We Do?

www.hpvawakening.org.

Well, I started a nonprofit HPV Awakening Inc. I lecture all over the Florida and have done a few media interviews. I sit here now writing you about my experiences and I’ve launched a petition that needs 100,000 signatures by May 28th, 2013, so that it can go to the White House to get HPV male testing approved by the FDA. Sign the petition.

I have contacted several local media stations and sites. And I have tried moving my civil court case Tashia Ameneiro vs. Zamil Xavier Lopez to a criminal one in order to have the state acknowledge the fact that HPV cancer strands should be taken as serious as AIDS/HIV strands.

The Miami Dade DA has kindly informed me that, well, HPV isn’t mentioned in the Florida statute at all. Thus they can’t help me. This is in spite of the fact that my case is backed with the full support from the local police department that filed my report (Miami Gardens), and they are willing to facilitate the investigative work!

So here is where you the reader come in. What can you do? Well, if you have ever been diagnosed or know someone that has been- I can relate. It sucks and it isn’t easy. And fun (insert EXTREME sarcasm) questions and situations follow diagnosis.

From Why Me? To What I Will Do About It!

In my case, I had been a virgin with no sexual experience prior to my ex, so I didn’t have to go through the questioning phase of Who? But I did have to go through the constant questioning phase of Why? After I received my diagnosis and contacted my ex he kindly informed me that he had known but since it hadn’t directly impacted me he hadn’t cared.

But that wasn’t the only “Why”. The “Why me?” phase kicked in and it kicked in for several of my friends too. Because once you get sick, it isn’t just you. It’s you and those that care about you, or who know you in a caring light- family, acquaintances, associates, co-workers and strangers you disclose to- that are impacted.

I remember one conversation in particular with a friend of mine that went through a bad life phase (attempted suicide and was a bug chaser at one point in time) sitting on the stairs while we shared a smoke (a short lived habit I picked-up during that “Why be and Why bother” phase). He was crying because he couldn’t understand how “Good people like [me], who never do anything risky end up getting sick and people like [him], who have tried every way possible to be ill and die didn’t.” Easy answer: “I don’t know what a ‘good’ person is, but sometimes Shit Just Happens.” It is a matter of what you do with the situation that counts.

I finished the cigarette and realized that some habits aren’t worth starting or maintaining just to stay wallowing in self-pity.

For those of you that are still reading, I say Yay! Thank you in sharing in my past misery. It really does love company.

Please sign the petition to get HPV male testing approved by the FDA. Go to We The People to sign.

May 5, 2013