I loved this article about a new TV show that totally misrepresented information about HPV (aka Human papillomavirus, if you prefer the long handle). I didn’t love the misinformation, but I loved the writer’s critique.

The summary of the piece is that a TV show character mixes up HPV and HIV (human immunodeficiency virus, again for the long handle lovers). She gets lousy information from her doctor and panics. Sounds like an argument for good sex education if I ever heard it.

Wonderfully, the writer shares the correct information on HPV and testing for other STIs (sexually transmitted infections). She also makes a valuable point about storytelling – while TV shows aren’t the best source for accurate information, they have great impact on viewers because the emotional impact of a story can easily override facts.

We know stories are important, especially when it comes to health. Shared experiences can be fantastic support. But shared misinformation can do a lot of harm. “Do you know what happened to Susie when she got [fill in the blank]?” Of course it’s bad news.

Don’t assume what you see about health related stuff in a TV show or movie is correct. While some shows do have scientists review what is presented (a welcome job to this chemist), not all do.  Mark Chichocki offers this as his list of best movies about HIV/AIDS, and given his nursing background, I trust it.   

End of the story is, don’t jump to health conclusions based on last night’s sitcom. And if you research your own health info online, which many people do, take information from “Dr Google” to talk over with your doctor(s). Take your time, ask questions if you’re not clear on something, get a second opinion if you want it.

Your health is yours alone, and not like that of a TV character.

- Janet

Photo: FreeDigitalPhotos.net

In Jacmel, Haiti, a program to prevent violence against women and HIV is generating change not only in the community participants, but in the facilitators as well.

“Let me use myself as an example,” says Marie Denise Casséus, an organizer with Rethinking Power, when asked about changes she’s seen as a result of the program.

“I’ve experienced two big changes. First, I have the capacity to speak with people and share ideas. And second, I have the ability to truly listen, suspend judgment, and be tolerant of others’ ideas.”

For others, the change involves recognizing power they may not have realized they had. A recent “exercise on male privilege evoked a big reaction from the staff,” explains Petit-Frère Christ-Roy, also an organizer with the program.

Haitian organization Limyè Lavi has adapted Rethinking Power from a violence prevention program first pioneered in Uganda called SASA! It is premised on the idea that when individuals analyze power and its ramifications, and are motivated to end violence, they can shift power imbalances in the community.

About 30 community activists—including a substantial number of men—have been training for over a year to become anti-violence leaders in their communities. When they meet, they discuss power and the reality of violence. They come with a lot of questions, which they examine together; the program facilitators don’t give them the answers.

“This is the difference from other organizations,” says Casséus. “This is what draws people.”

“The program creates exchanges on what to do to discover solutions together. Telling people what to do doesn’t work.”

As their understandings of violence change, community activists begin to see how domination affects children, families, neighbours, the community.

For example, says Casséus, if a husband beats his wife with a stick, he misuses energy in finding the stick and then using it. Afterwards, his wife needs to go to the hospital, which requires time and money. When children live in an environment like this, they can’t perform at school; they experience trauma and delinquency, act out on their peers, and become a larger danger for the community. By analyzing violence together, and sharing their own experiences, community activists “see the impact and the use of resources and ask what to do.”

What the community activists do is engage others in conversations about violence. Each person has a network and role in the community, says Christ-Roy. Or, as Casséus puts it, each has a circle of influence, extending to family, friends, community, and society. Community activists commit to two hours of work per week in their community, and they decide what form it will take. They can organize more formal gatherings, or they can chat with people they would see anyway, at the market, at school, at a friend’s home. (None of their time is paid—“their first motivation is to end violence,” says Casséus.)

They use visual materials provided through the program, such as posters or comics, to initiate conversations. One small comic shows a group of people aboard a tap tap (share taxi) who pass an HIV clinic and notice there are more women than men there. They talk about why that may be—is it because women have so many sexual partners? Or is it because women have less power, for example, to say no to sex and to use condoms? The comic ends with a man asking if the point is that women should have all the power, to which the other passengers respond that power needs to be shared.

Idealistic as the comic sounds, it’s not too far from what is actually happening as a result of Rethinking Power. Some women have been able to express for the first time the impact of their husbands’ behaviour on them. By listening to female participants speak about their experiences, some men have received information they couldn’t hear directly from their partners. And some participants have even seen reduced psychological and physical violence in their marriages.

“I’m seeing things I hadn’t seen,” says Christ-Roy. “I want everyone to rethink things too.”

- Erin

This is Part 2 of a series. You can find the first part here:
http://pwn.bc.ca/2012/04/sasa/

*Sigh.*

It was disheartening to read a piece on HIV funding that appeared in Xtra a couple of weeks ago. I could understand author Rob Salerno’s take on the challenging process that many HIV service organizations in Ontario faced recently in applying for funding under a tight deadline. Here in BC we faced it too, and there were supportive phone calls and emails back and forth between groups as we all wrote feverishly to meet said deadline. 

What I found disheartening was Salerno’s comment on one successful funding application. Instead of applauding it, he wrote, “ I’m unconvinced that a province-wide wellness retreat for HIV-positive women …. (is) the best use of limited public funding to fight HIV.”

You know, I’ve heard that before.

Positive Women’s Network has been around for over twenty years, and in that time we’ve had people bluntly ask us why we deserve funding. Why should services for women with HIV get money when so many more men are infected? The answer is this- women get HIV, and are doing so in increasing numbers. Their needs, experiences and lives are different than men’s. A sampling could list gender roles, biological vulnerability, women’s roles in their specific cultures, histories of gender-based violence and sexual assault. Women express the need for women-only services, as we heard over and over when we did a retrospective of our work. One type of organization doesn’t fit all.

We offer a range of services that include weekend retreats for women. These retreats provide health education on HIV, treatments and disease progression; leadership development, and peer support. Women tell us we’ve changed their lives and made a death sentence manageable. Some aren’t sure how they would have gone on if it weren’t for our retreats. If that can be offered to women in other parts of the country, bravo, I say.

Salerno despairs the lack of funding that compromises the work of support organizations, and I get that- there isn’t enough money to go around to everyone. Yet he also recognizes that the organization that successfully received funding has a client base that’s over one third women.

We are fortunate at PWN that many organizations and individuals we’ve worked with over two decades have abandoned their skepticism as they’ve seen the women we work with and the work we do.

HIV funding isn’t endless, as anyone who applies for it knows. But are we in this fight together or what? I’ve believed through the work of many that we are, but obviously there are folks who hold a different opinion.

- Janet

Here are a couple things I know:

1. Awareness campaigns about violence against women won’t end violence against women.
2. Awareness campaigns about HIV won’t end HIV.

For those who prefer succinctness, I can boil these two points down to one: Awareness campaigns have a very limited impact.

What is needed then to not only respond to violence and HIV, but to prevent their occurrence? I think, off the top of my head, that the answer is more comprehensive, long-term projects to stimulate broad cultural change beginning at the grassroots level.

So it was with much interest on a recent trip to Haiti that I met Sara Siebert, who has been involved in anti-violence work for over a decade, and learned of an innovative program to prevent violence against women and HIV. The program, called SASA!, was developed by an organization in Uganda called Raising Voices. It has had such unique success that Sara is now working to support the program’s implementation in a Haitian context.

SASA is a Kiswahili word meaning now. It also serves as an acronym for the four phases of the program: Start, Awareness, Support, and Action.

Here’s a description of the program from Raising Voices:

SASA! is a new methodology for addressing the link between violence against women and HIV/AIDS…. [I]t is meant to inspire, enable and structure effective community mobilization to prevent violence against women and HIV/AIDS.

SASA! is an exploration of power—what it is, who has it, how it is used, how it is abused and how power dynamics between women and men can change for the better.

SASA! demonstrates how understanding power and its effects can help us prevent
violence against women and HIV/AIDS.

…By changing the imbalance of power between women and men, we can prevent violence against women and its connection to HIV/AIDS.

Through SASA!, community activists who want to address violence receive training to initiate discussions about and ultimately change social norms in their communities.

Here are a few key characteristics I immediately like about the program:

• It’s long term, increasing its potential to build change that really takes hold.
• It focuses on power, which is at the heart of violence, and it uses the concept of power to explore inequality in gender relations.
• It looks at change within a community, not just within individuals.
• It involves people from the community, both women and men, and it doesn’t dictate to them what is right or wrong. Participants are encouraged to engage in discussions and come to answers themselves.
• Its creators want others to re-create and adapt the program, and to that end freely share materials.

I had an opportunity to see the program in action in Jacmel, Haiti, and to speak with participants and staff. I’ll talk more about that in the coming weeks!

- Erin

When we held our first health promotion conference we called it SpringBoard because that was the goal- to launch conversations about women’s HIV health so we might inspire change. Eight years later, we’re still talking – with HIV service providers, positive women, students in health care and sciences, and a wonderful group of people in HIV, mental health, addictions, and anti-poverty work. 

Every year we explore different themes- last year it was Aging Gracefully. A couple of years ago it was looking at Confines of Health.  This year’s theme is Living Out Loud, and like the others, it’s open to interpretation. Presenters will all have an interesting take on it-

• Dr Myles Blank will address mental health and HIV. He works with women at Oak Tree Clinic and SheWay.
• Micheal Vonn of the BC Civil Liberties Association will present the latest on court cases about HIV disclosure, including the facts from the pending Supreme Court decision.
• Glen Bradford of Positive Living BC will present on the theme as it plays out for peer support staff in the Patient Navigation program.
• Melanie Kuxdorf of CIHR Canadian HIV Trials Network will be looking at it as it relates to using social media to do community research.

A wide range of interpretations, yes. And once again, the hope is that we will spark inspiration for strengthening the many communities women with HIV inhabit.

Join us May 3, from 1030-230. Registration is free but you must register in advance. We look forward to seeing you!

- Janet

Condoms. Photo from iStock.

News that made me smile this week: an 81-year-old woman who educates seniors about sexual health is getting recognized.

According to the Sun Sentinel, Kate GeMeiner of Florida decided to engage with older populations about sex after learning there was a high incidence of HIV in seniors in the area.

She’s earned the nickname “The Condom Lady” for handing out condoms to seniors. Having had to strategically engage with older adults to get condoms into their hands, I appreciate her creativity in getting reticent seniors to take condoms home.

“I tell them when they write a letter or send a check to their grandkids in college, I tell them to send them a condom,” she said. “That’s how I get them to take the condoms.”

After all, she says, “Seniors who are retired, they have time to have sex.”

How great is that?

It’s especially heart-warming news given the rise in sexually transmitted infections among older populations in Canada and the US. Many seniors are having sex, and many are dating around, but they aren’t necessarily practising safer sex and they may not realize the risks.

It’s a potent reminder that people don’t outgrow the need for sexual health education. And they’re never too old to become the sexual health educators themselves.

- Erin

Super happy- I spent Wednesday at Health Care 2.0 Social Media Camp, an event presented by the BC Patient Safety & Quality Council. It was lovely to see people I’d met previously through the Healthcare and Social Media Canada community (#hcmsca on Twitter) and to meet new faces who are as keen as I am to share the word about the potential of social media tools to engage, build and support health communities.

Social media tools are used by many community groups to enhance their relationships with individuals and organizations. We’re active on Twitter and Facebook, and to a lesser extent, YouTube (there are only so many hours in a day). Social media tools can help reach organizations and individuals who don’t live in the Lower Mainland- wherever there’s Internet, there’s a voice.*  We share program information that helps women get connected with us and ease their isolation. We also share resources and research findings so women with HIV and the folks supporting them can get up to date information for the best care no matter where they are. 

The exciting element of social media is the “social.” It’s participatory, and everyone can have a voice through sharing, discussing, and reflecting on what’s posted. This can result in strengthening communities and visioning change where it’s needed. Ongoing throughout is the opportunity for conversations.

Those of us using Twitter in the HIV community in Canada connect through community hashtags- #HIVCan, #HIV, #AIDS, #AIDSlaw etc. (Here’s a list of the tags often used). We can get program and event information to each other immediately; and share info about local and international action. New findings about HIV, prevention and treatment news is shared far and wide. A lot of activism is also carried out online via petitions that go around the world.

Social Media Tools Perfect for HIV Connections

One of the fantastic things happening through social media tools is the opportunities for patient empowerment, peer to peer connection, and patient to healthcare provider communication- sound familiar?  This is what HIV activism has always been about, and social media streams a great way to carry it on. Now it’s crossing over into other health issues as well. Community development, patient empowerment and making change in how doctors and patients work together is a growing wave that is supported by the energy flowing through social media channels. 

For those of us in the wide reaches of Canada working with little money for meeting in person, social media tools are also a great way to get to know people. As Kat Dodds from Hello Cool World said “Social media is all about collaboration; connecting with the people you want to work with.”  The HIV community is rich with accomplishments and ripe with possibility.

Like any research you read, always consider your sources- there’s incorrect information out there.  Look for established AIDS support and research organizations, medical researchers, or places like the CIHR Canadian HIV Trials Network or BC Centre for Excellence in HIV/AIDS. You can start by looking at the lists we have on our Twitter feed. And if you haven’t already, think about joining conversations on Twitter about healthcare and social media. Here in Canada, use #hcsmca to find out more about it. If you’d rather look for HIV info, #HIV will get you lots of stuff. There’s a ton to discover.

- Janet

*Communities without reliable internet access are harder to reach, obviously. I hope this will change as systems are upgraded.
 

In a busy corridor, passersby line up to book a time for an HIV test. Thick black curtains section off a temporary testing clinic, and behind them individuals talk with health professionals and get the test started—a prick of the finger and a few drops of blood is all it takes. Within a minute the test yields either one or two dots, indicating whether HIV antibodies have been detected.

If you’re thinking this sounds a bit unreal, I have to agree. It’s not a scene I expected to find when I ventured out into the community a few weeks ago.

The Setup

The temporary testing clinic was an interesting setup. It was made up of curtains and tables and located in a high-traffic area, affording it visibility and attracting the gazes of those walking by—and also increasing the visibility of those getting tested. I wondered about the privacy offered by the arrangement, as well as the discussion taking place behind those mysterious curtains, and decided I’d check it out by getting tested myself.

What Happened

The people who registered me to be tested knew that I worked for an HIV organization. I don’t know if the person who tested me did.

The tester was kind, and I felt comfortable. I was surprised by how well the curtains blocked out sound; I did feel secluded within them. I was aware though that I’d have to emerge from them into a high-traffic area after the test. I tried to imagine what it would be like to test positive for HIV—if I yelled or cried, would people outside hear me? Would anyone notice that my test had taken longer than usual? What if I were teary and people saw?

Before getting blood, the tester covered basic transmission info briefly by listing the relevant bodily fluids. Sex work was highlighted as a high risk for HIV, and I was told that we don’t always know what our partners are doing.

Then the rapid HIV test was explained. I asked about what happened when a test was positive. The tester said that in the case of what is called a preliminary positive, blood is drawn and sent to a lab for confirmation of HIV. The blood work takes a few days, and in the meantime it’s important for the person to get support from friends and family.

The test itself really was rapid, and I was surprised by how quickly it was completed.

What Didn’t Happen

Here’s what didn’t happen, which in retrospect I realized I had been expecting:

• Introductory chat about what HIV is
• Statement that HIV cannot be transmitted through saliva
• Brief talk about sexual practices and condoms
• Brief talk about drug use and needles
• Post-test discussion on minimizing my risk

I’m not sure if this is usually part of the process, if perhaps the person who tested me had a different approach, if there were time constraints, if it was known that I worked for an HIV organization.

Testing and Taking Notice

Obviously it’s awesome that people were getting tested for HIV. (I’m curious about whether they were the type to test regularly or were new to it.) Those with HIV who are undiagnosed are a major source of transmission.

What was also awesome was that people were walking by and seeing that others were getting tested—hopefully putting us on the path to normalizing testing and increasing knowledge of HIV.

– Erin

Less than a month ago Janet posted about HIV disclosure and criminalization on this blog. It’s a complex social justice issue fraught with many, many shades of grey and I’m not going to step foot into that legal labyrinth at this point. I will, however, share my personal struggles with disclosure.   

I was diagnosed HIV positive in the spring of 1994. It was so traumatic I can remember the exact time – 12:42pm. The whole day is frozen in a capsule that I tend to pick up and inspect with far less frequency as the years pass. As you can well imagine, it was shocking news and in an attempt to get away from the grief in all my friends’ eyes I drove across Canada and set up a new life in Vancouver. I would soon learn the grief came with me, as I only needed to look in the mirror.

I made a lot changes to my life in those early years after diagnosis. Most of them were very healthful and empowering. I quit smoking, I engaged in therapy to address a lifetime of abuse, I delved deep into a spiritual discipline, I returned to university and perhaps the most impactful of my choices: I embraced celibacy. I remain celibate today. It has been 18 years.

Initially my choice for celibacy was in reaction to feeling terrified of infecting someone, and so, I closed myself off from any and all physical intimacy. As I began to educate myself about HIV and become more comfortable with the virus I grew more at ease with being positive yet I was still not ready for a physical relationship. As the years passed I settled into celibacy and it stopped being a conscious choice.

Celibate… or Not?  

The sting of HIV is mostly diminished in my life, but there are times when I am still haunted by it. Last year was one of those times. I was content knowing I would be single the rest of my life and I was certainly not looking for a partnership. You know where this is heading, right? Uh huh. I met someone who blew me away. He took me completely by surprise and all my dormant female hormones sprung into action. My chakras whirled in celebration.

We flirted but never took our attraction anywhere. It was over as fast as it began. Well, nothing between us even began. But I woke up and took notice of a different life! It had been a long time since I had connected to my alluring female energy. My goodness, fully inhabiting my body is amazing. You know what I mean? That amazing feeling of walking down the street with your head held high, with a gentle curve in your back, and your stride long and loose. You know it. The sway of your hips. The rise of your breasts. Blessed be. I love being a woman! I joyfully find myself ready to be with a man again.

And this is where I collide with the fact that I will need to disclose my status to the person I choose to be with. One of the benefits of celibacy is I don’t have to tell anyone. But now I’ve gone and complicated the plot because before I become sexually active I will tell my partner I’m HIV positive. You see, I was infected by a man who knew full well he was positive and he kept that knowledge from me. I will not do the same.

I think about that exchange I’ll be having in the future. I go over conversations in my head and with my friends. When do I disclose this information? Probably not really first date material. Second date? Maybe. I’ve been on a few dates recently and I can gauge a guy’s comfort with STIs generally and HIV specifically when I toss out what I do with my life. I sit on the board of directors for the Canadian AIDS Society and I work at Positive Women’s Network. Those two things open up a discussion. So far, I’ve been pleasantly surprised, but I haven’t had to have that difficult conversation to date.

Quite simply, the thought of disclosing to someone I care about and am interested in being with petrifies me; therefore I’m kind of thankful the situation has not presented itself. But it will. It’s inevitable and in that moment I will need to draw on all my HIV transmission awareness, my yogic breathing techniques and my unfathomable reservoir of courage. I keep reminding myself that when I do find myself ready to disclose it will be with a person that I have come to know and it will be with a person whom I already trust. I will still be shaking in fear, but I will disclose.
 

- Monique

photo: iStock 

I’ll admit I’ve been a bit distracted these past couple of weeks, pulled into the waves of info on the Supreme Court of Canada proceedings on the criminalization of HIV disclosure, and the continuing drama unfolding in the US between Susan G Komen for the Cure Foundation and Planned Parenthood over funding for breast cancer care.

Here are the nutshells if you don’t have them:

The Supreme Court of Canada is considering two cases about non-disclosure of HIV status in sexual relationships. Most people with HIV do share their status with potential sex partners, but in the cases where they don’t (or don’t before first sexual contact), criminal charges can be laid. Some of the many questions being debated –

• If a person doesn’t disclose their HIV status, can the “yes to sex” from their partner really be classified as “informed consent”?
• Other cases have argued there must be a risk for “significant bodily harm”. So what is a significant risk of harm and who determines it- the person with HIV? Their sex partner? The courts? 
• HIV treatment can significantly reduce the risk of transmission, hence the “treatment as prevention” concept. Will this new science figure into these cases?

The two cases under review are being considered by our country’s highest court, so these decisions will have oomph.

Breast Cancer Care is Women’s Health Care, but Komen Differs…

Then there are our neighbours in the US. Susan G Komen for the Cure, a foundation that calls itself “the global leader of the breast cancer movement” cut off funding to Planned Parenthood for breast cancer care provision a couple of weeks ago. Their explanations were inconsistent, but one was that Planned Parenthood is currently under investigation about the source of funds used for abortion care. Komen recently enacted a policy that no organization under investigation will be funded, and as far as I understand it, Planned Parenthood is the only organization affected by this policy so far. The power behind the new policy was Karen Handel, who prior to her work at Komen ran on the Republican ticket and was at that time criticized for not speaking out enough against abortion. Add that to the drama.

The reaction to the funding withdrawal was huge, the backlash against Komen was stunning. Komen has reversed their decision and now says Planned Parenthood can be eligible for funds. But this has not been without the internal turmoil of threats or actual resignations (Handel resigned) and a huge cost to Komen’s image as a promoter of women’s health.

The tale’s full of politics, positioning, and prejudice and the loser is women if they don’t get the care they need. That’s also one of the arguments about what HIV criminalization can do- if having HIV can potentially land one in jail, there’s a disincentive to test, and then get care. Without care, HIV has a chance to do its nasty damage to the immune system. And without HIV treatment as part of care, people are more likely to transmit HIV to sex partners.

See why it’s been quite a time?

All of this is still in process, but some links follow below if you want to dip into the tides.

- Janet 

Coverage of Supreme Court and HIV criminalization 

Vancouver Sun editorial that criminalization isn’t the right approach

Toronto Globe and Mail on necessity of disclosure

CBC Early Edition podcast with Micheal Vonn of the BC Civil Liberties Association explaining the issues

Good piece poses a question for everyone: do you discuss your sexual history with sex partners?

Komen/Planned Parenthood 

Explanation of why Planned Parenthood is under investigation

Does Komen apology seem credible?

Good piece on the inconsistencies of decision

Planned Parenthood response to cuts…  and their response to Komen’s reversal.

Komen says decision and says is not politically motivated