Earlier this week on my You Should Know Twitter feed, someone sent me a link reporting the results of a court case in the US-  a wrestler who knew his positive HIV status but didn’t disclose it to multiple sex partners that followed, putting them at risk for HIV infection. His defense was that he was a sex addict and couldn’t help himself.  Oh boy.

The question of sex addiction aside, let’s talk about the man’s failure to disclose his HIV status. This is a much debated topic in many fields these days- the law (obviously), public health, human rights, HIV prevention and education, health care, you name it. The Canadian HIV/AIDS Legal Network has some great information on the issues, and I’d urge readers to check it out. In particular, I’d urge you to look at their recent brief on an upcoming Supreme Court case.  Two important cases will be tried. 

Here at Positive Women’s Network the question of HIV and criminalization often comes up. We work with women who are infected with HIV, many of whom had no idea their sex partner had HIV. We’ve supported women going through legal proceedings where they are giving evidence against former partners that infected them. We’ve also supported women who themselves have been accused of non-disclosure. Our goal of supporting all women with HIV demands that we look at the issue of criminalization. We’ve been asked to develop policy that could be used by other organizations, as we’re one of only two organizations in Canada that focuses on women and HIV exclusively.

We’ve witnessed the pain and suffering for women on both sides of the criminalization fence.  To provide the most comprehensive support we can, here’s what we’ve come to about the issue at present.

There is no evidence that criminal law is effective at preventing HIV transmission.  People’s sexual decisions are dynamic, intimate and often spontaneous. Criminal laws and convictions haven’t changed that. For women in situations of abuse, coercion or assault, decisions can be about reducing harm, not enhancing it. (One of the cases to be heard February 8 involves a woman and her abusive former partner).

Criminalization may actually drive people away from public health initiatives like testing, counselling, and support. In this US case, the man knew he had HIV, but admits that he didn’t talk about it as he didn’t want his family to know. Why? Probably because HIV is still a highly stigmatized, misunderstood disease.  People with HIV often experience discrimination- even in this day and age when prevention, treatment and education are available.Criminalization can add to this, not diminish it. 

Criminalization gives people a false sense of security.  The idea that “he (or she) would tell me if they had HIV because the law says so” is obviously not the case.

We feel that a public policy response and public health laws are preferable to criminal law. How do we support people with HIV, and all people, to have comprehensive sex education and unbiased HIV prevention information?  How do we support people to gain the power to act on their knowledge and look after their sexual health? How do we address gender and relationship inequality to make this possible?

These are big issues and big challenges.

Their resolution isn’t likely found in a courtroom.

-  Janet

  Photo: IStock

Well hallelujah- I hope.

Earlier this week new US sex education standards were released. Benchmarks include knowledge of proper names for anatomy by the end of second grade (age seven or eight) as well as an understanding of the range of sexual orientation by the end of fifth grade (age ten or eleven). Add to that an emphasis that all kids know about inappropriate touch.

Good news, right? Well…. 

These standards are suggested, not required. And you know that the folks who support abstinence based education are all over it. The piece I read included a quote from the Executive Director of the National Education Abstinence Association who doesn’t agree with the new standards.

The Battle

Contention over sex education is always an issue. I read a piece a couple of days ago about Planned Parenthood being ousted from teaching sexual health in a school district where they’ve been teaching for 20 years. And then there’s the piece from youth counselors  begging for sex education for kids because misinformation is doing more harm than good, putting kids at risk for STDs including HIV, and pregnancy. 

We have the opportunity to teach our kids language and body integrity from the start. Following the old adage, “walking at one, talking at two,” picture a two year old. If your son is pointing to his elbow, you help him learn language by saying, “That’s your elbow, honey.” Obviously we value this body knowledge as a culture- there’s a kids’ song “Head and Shoulders, Knees and Toes,” which jauntily teaches body parts and calisthenics at the same time. So why wouldn’t we teach a kid the proper name for penis or vulva? I don’t think that “wee wee” or a similarly incorrect alternative is better, nor does it do anything positive for our kids.

The Goal

It is possible to teach children about their bodies and instill pride and understanding, rather than confusion. And it’s possible to teach about sexuality without “encouraging” relationships before kids are ready. This isn’t an either /or situation, and more importantly, it’s not a one-time discussion. Kids need to have ongoing sexual health information that’s age appropriate. Five year-olds deserve to know the proper names of their body parts. Eleven year-olds deserve to know about appropriate and inappropriate touching- it may already be too late for those who didn’t hear it beforehand.

Home vs School

Some of the argument about school based sex education is that it should happen at home, not at school. I totally think that parents should be talking to their kids about sexuality and sexual health at home, but not everyone does it. I know one parent at my kids’ school who doesn’t want to give her kid a sex ed “talk” (note the singular). She prefers the school do it, and I’m at least  grateful she hasn’t pulled her kid from the classroom.

We have to be adults here. And being adult is looking to the future of children- ours and others. If we want to raise sexually healthy kids who grow into sexually healthy adults, we need to start with the facts- body parts, body function. I believe in age-appropriate sexual health education for all kids. Lucky for B.C., there’s Saleema Noon. Ideally there’s someone in your locale who’s as sexual health-positive for girls and boys.

For many of us who grew up with limited and/or shaming sex education, we know the need for change. Let’s hope these new US recommendations develop legs, and walk into every classroom in the country.

- Janet 

It’s been an interesting year in HIV science.  The folks over at The Body and Poz have chronicled the year nicely, so I’ll draw on their work to look specifically at women.

In the big picture, microbicides are still an elusive target: a trial using tenofovir vaginal gel was discontinued when it didn’t show effectiveness. Oral pre-exposure prophylaxis therapy proved a disappointment too, although research continues on both. That’s good, because women represent 50% of infections worldwide (60% in Sub-Saharan Africa). Women also experience disease progression at lower viral loads than men do – another thing to consider when looking at treatment recommendations. There’s still a lot to be done in terms of stigma, treatment access and social issues. Women struggle with convincing partners of the necessity for condoms, and violence runs through many relationships, increasing HIV and other health risks.

In Canada, the contentious issue of supervised injection sites came to a head with the Supreme Court Appeal regarding InSite. The Court ruled in September that InSite could remain open, as the health benefits outweighed the potential harms. Criminalization of HIV continues to be a difficult issue, and media portrayals don’t help. See Erin’s “The HIV Party Woman” for a great analysis. Just recently, we heard that a Canadian vaccine candidate will go to human safety trials in 2012- could this be a turning point?

At home in BC, the team at Oak Tree Clinic is exploring whether the HPV vaccine will help women with HIV-  a partnership with researchers in Uganda reaching beyond our borders. The STOP project forges on, seeking those who are undiagnosed. A trial of serodiscordant couples found that those who delayed treatment were more likely to transmit HIV to their partners, underlining the benefits of early treatment and reducing transmission that STOP embraces.

Here at PWN, we hit the milestone of 20 years of supporting women with HIV and educating the communities that work with them just how different HIV is for women. It’s been an honour and a privilege. 

I am deeply appreciative of the folks I work with in this field and passion, and know my coworkers at PWN feel the same. To everyone in our communities, all the best for the coming year. May we work together to address the many pieces of the HIV puzzle and improve the lives of all communities.

Janet 

Photo: nokhoog_buchachon / FreeDigitalPhotos.net
 

I was at the most recent Antiretroviral Update offered by the BC Centre for Excellence in HIV/AIDS, where treatment research, case studies and good humour abound. It was an interesting day full of information, but I have to say that one presentation has continued to echo in my head beyond the others.

It starts with STOP, (Seek and Treat for Optimal Prevention of HIV/AIDS) the ongoing pilot program in the Lower Mainland and Prince George. It ends in many African countries- a long road, I know.

One of the goals of STOP is to increase the number of people being tested for HIV, as Health Canada predicts that up to 26% of Canadians with HIV don’t know they have the virus. Increasing testing across all populations, not just those “risk groups” that have been targeted in the past is one way to locate new positives. Once they’re identified, they can get on treatment if needed. Once they’re on treatment, they are less likely to pass on the virus.

Normalizing HIV Testing

Dr Reka Gustafson spoke about “Normalizing HIV testing.” She suggests that doctors can actually be the barriers to people being tested. Doctors don’t think to or don’t want to suggest testing to patients, lest it be interpreted as a judgment on behaviour. Gustafson said that not testing people results in late access to treatment. Sixty-five percent of people who test positive for HIV have disease progression that is already past the recommended starting point. In other words, their health is already compromised beyond where it needs to be.

Another one of her points is that with timely diagnosis and access to treatment, people diagnosed with HIV these days can live close or equal to a normal lifespan. That is amazing. But where can that happen? Here.

“Here” is a small place when it comes to treatment access.

It’s a dream for many people with HIV to imagine a “normal” lifespan. In countries already decimated by diseases other than HIV, but similarly deadly, “normal” is very different from here in North America.

Treatment Access

Treatment access is a complicated issue full of poverty and politics. Living well with HIV disease or living at all can depend so much on geography. Too many countries have thin resources when it comes to providing HIV treatment. Recent changes to the Global Fund will have serious impact on countries already pressed to provide treatment and care to massive numbers of citizens with HIV. Canada’s HIV/AIDS Legal Network notes that while Canada has committed to pay its portion to the Global fund, many others countries haven’t, compromising programs that need it most. In addition, this community care worker writes that women will be expected to bear the increasing burden of care. 

Normalizing testing for HIV, which can lead to treatment, which can save lives of many, is a great pathway indeed- one it would be great to travel on. But to do so, we have to continue to combat stigma of the disease, support treatment access for all, push for funding for comprehensive care. That way, more people might experience the impact of STOP.

- Janet

This is the final blog in our series: PWN at 20 which honours our twentieth anniversary providing support, education, community resources and networking for women with HIV and health care and social services communities.

It’s World AIDS Day, an internationally recognized time to remember the past and rally for the future. This year there are multiple themes, a reflection of the diverse issues presented by HIV. The UK National AIDS Trust says “Act Aware.” UNAIDS has set sights on “Getting to Zero.” Here at home, the Canadian AIDS Society urges Canadians to “Do Something.” There is still so much to be done.

Twenty years ago some visionary women set out to support women with HIV in the Vancouver area. They were women with HIV and women from various backgrounds- nursing, social work, and education. They knew something needed to be done for women specifically, and their first meeting in the common room of a housing co-op led to the nationally recognized organization we are today. One of the big themes talked about back then was the stigma that women face, especially as members of intricate family units that centre around them.

Stigma still exists everywhere for women with HIV. A Canadian study of women revealed that stigma figures highly in their day to day lives, as does sexism and racism.  Women the world over report this. There is stigma in having HIV, and stigma in “bringing it into the family” whether this was the actual case or not. Women who discover their HIV status during pregnancy often bear the brunt of blame, as they receive the diagnosis their husbands haven’t sought.  

But women challenge stigma, and challenge the destruction that HIV brings. The Grandmothers to Grandmothers  movement is a great example. Many grandmothers in African countries have to step back into parenting their orphaned grandchildren when adult children die of AIDS. Grandmothers here in Canada work to raise awareness of the need for this work and funds to support it through the Stephen Lewis Foundation. (Yes, that IS a plug to donate!)

Peer support is also an essential part of confronting HIV as it weaves through medical, political, socioeconomic, geographical, and intimately personal pieces of life. (True, that sentence is a challenge. – but so is living with HIV). Members at Positive Women’s Network say “PWN is a confidential and safe space created for women…it feels like a family, feels like going home.”

As another member puts it, “Women heal women.”

But women can’t do this work alone. Women and men need to work together to change the shape of what it’s like to live with HIV. Many courageous and strong people do just that. Here in BC, PWN is lucky to work alongside many organizations that recognize the unique need for women’s services and complement them with their own. We’re also grateful to groups and individuals we work with across the country.

As the PWN community contemplates the beginning our twenty-first year in “Challenging HIV. Changing Women’s Lives” we ask everyone to “Do something” on World AIDS Day. Learn about HIV; talk safer sex with those you care about, young and old. Share the humility that this could happen to any one of us – risk factors for HIV transmission are based on human vulnerabilities. Make sure you and your loved ones know how to prevent HIV and where to go for support should it be needed. Don’t deny- do something.

- Janet 

Another edit of this post is on You Should Know

photo: Kevin Rosseel/ Morguefile

(In this, our twentieth year, we’re featuring a monthly blog series, PWN at 20 that looks at PWN’s unique place in Canada. Last month we invited folks to Help Us Celebrate Resilience, our twentieth anniversary fundraiser coming up on October 16)

Challenging HIV.  Changing Women’s Lives.

These words guide us in our work. Since January we’ve been looking back at that work over the past twenty years. It’s been an amazing journey that we’ll celebrate together on October 16 at Resilience.

Pessimists might ask “What’s to celebrate about HIV?”

Well, the amazing community that has grown, for one. Evelyn, one of the founding members, said something one day many years ago that has always stuck with me:

“I don’t have acquaintances, I only have friends,” she said in her quiet voice.

She knew that some relationships would be more intimate than others, but she felt holding people at arm’s length did her no good. This was especially true as she faced the unknown of how HIV would unfold in her life. To her, everyone she met had a gift to share. In that way, everyone was a friend.

Most of the women who come to Positive Women’s Network don’t remember Evelyn, who died before the treatment changes of 1996. But it’s almost as if her words became part of the spirit of PWN, because friendships bloom all the time:

“Women at PWN have different experiences from mine, but we are all alike in so many ways— it’s always that one place we connect,” said one member.

Sangam, one of the Support workers, says “Watching a woman come to a retreat for the first time- often there’s a lot of fear. But women get to be with other positive women and so many of the myths that they’ve been living with themselves get dissipated in that weekend.”

Reflecting on what retreats offer, one woman said, “We can enjoy life instead of looking at HIV like a death sentence.

And there’s the resilience part. Women face incredible adversity, and not only the challenges of HIV. Many women are also up against violence, poverty, abuse, mental health and addictions. But women survive. They meet at PWN, give each other support and their perspectives change:

Summing up her experiences here, another woman said “I have hope for my life – I had no hope for my life before.”

So yes, community is something to celebrate. Resilience. Friends gather- here.

- Janet

Twenty years. Thousands of stories. Hundreds of laughs and certainly some tears. Bold voices. Caring support. Lifelong connections. Fantastic community.  This is what we’re going to celebrate on October 16.   

Resilience is a party, a fundraiser, and 360 degree look at Positive Women’s Network. At twenty we take the cake as the oldest HIV support organization for women in Canada and our work is constantly developing.  We started out as a handful of women (with HIV and concerned about it) who knew HIV would serve up some difference between men and women. They knew women would need their own place. Our first members were a few Vancouver women. Now we’ve grown into an organization that provides support to women across BC and health promotion resources to service providers nationally. Who knew we’d still be at it twenty years later?

Join us October 16 as we celebrate the road behind us and the paths to unfold. We’ll have live music, hors d’oeuvres, and a silent auction with tantalizing possibilities. Catch up with friends and allies in the community. Meet new people who are passionate about challenging HIV and changing women’s lives. If you can’t attend yourself, consider donating a ticket- alone or with a couple of friends.

All proceeds go to programs that provide support to women living with HIV. Medically, socially HIV remains a challenge. Our work isn’t done. Help us make it count.

I look forward to seeing you!

- Janet

  BUY TICKETS NOW

A new HIV drug is on its way, and it could change people’s dreams. On July 22, Health Canada gave a "Notice of Compliance" status to Edurant (rilpivirine). "Notice of Compliance" means that the drug meets Health Canada’s standards in terms of safety, efficacy and quality. The next step towards making Edurant available is the  Common Drug Review. This process looks at how the new drug compares with others of its kind, how it will benefit people, and whether it’s worthwhile for the money it costs.

Rilpivirine is a new NNRTI (Non-Nucleoside Reverse Transcriptase Inhibitor). NNRTIs work with other HIV medications to stop HIV from being able to make copies of itself. Edurant was tested for use in people who have never been on treatment before (known as “treatment naïve”). The goal was to test how well it worked and what kind of side effects or “adverse effects” were seen when compared with Sustiva (efavirenz), which is known for the wild dreams it can produce.

Good representation of women represented in studies

There were a good proportion of women in the testing of Edurant- 32%. This often isn’t the case when testing HIV meds. Women and men responded equally well to Edurant combinations, but the intensity of side effects was different for each group. Women were more likely to experience nausea and men were more likely to have diarrhea. Side effects that challenge one’s day-to-day functioning, especially when looking after kids, can be difficult. Ideally, side effects are largely resolved within the first two months of treatment.

Safety in pregnancy undetermined

Rilpivirine has been tested in animals (rats and rabbits) to see its possible effects in human pregnancy. There were no adverse (negative) effects in animal studies, and animals were exposed to 15 and 70 times higher the recommended dosage for humans. When Ripilvirine was approved for use in the U.S.,  the Food and Drug Administration (FDA) placed it in Pregnancy Category B, indicating “Animal reproduction studies have failed to demonstrate a risk to the fetus and there are no adequate and well-controlled studies in pregnant women”  In other words, we don’t yet know how Edurant might affect a human pregnancy, but animal pregnancies haven’t indicated need for concern. It should not be used in pregnancy unless the potential benefits outweigh the potential risks. (product monograph)

Target Population

Edurant will be used as a first line therapy for those who have never been on treatment. More studies are needed to see how it will fare in people who have been on HIV treatment already. It did have a higher incidence of virologic failure (didn’t control HIV reproduction) than Sustiva, but its adverse effects were lower. But of those who did fail, 50% experienced resistance, which can influence what other treatment options they may have later on. All this needs to be considered when starting HIV therapy.

The Common Drug Review of Edurant will take a number of months before it will be available on public formularies, although private health plans may cover it sooner. You can follow its progress at the Common Drug Review page that lists drugs that are approved and in process.

- Janet
 
Look for a more detailed version of this blog in our upcoming newsletter.  

In this, our twentieth year, we’re featuring a monthly blog series, PWN at 20 that looks at PWN’s unique place in Canada. Last month we looked at HIV in Aboriginal Communities.

There is power in partnerships. Our organization was a partnership from the start: HIV+ women and uninfected allies working together. We’ve benefitted greatly from the various viewpoints that partnerships offer. Learning from people, organizations and even landscapes has helped us improve services and resources for HIV+ women.

Partnerships connect people. Here’s a few of our wonderful partner projects over the years.

Oak Tree Clinic

Oak Tree Clinic, which is the province’s HIV care centre focussed on women and children, launched at BC Women’s Hospital in 1994. The idea behind a women-specific health centre was to include a place for women’s HIV care and a place where children were welcome and able to access treatment too. The planning committee was made up of doctors, social workers, and members of Positive Women’s Network, including the Executive Director, Marcie Summers.

The vision back in the 90’s continues in service delivery today, with comprehensive care for women that is provided by a multidisciplinary team of doctors, nurses, a pharmacist, dietician and social worker. Kids can come along to the play space, and if they’re infected themselves, they get care as well.

We also partner with Oak Tree in providing outreach, an important bridge for lots of women. Getting to medical appointments can be difficult, whether it’s because of travelling a long distance or because HIV itself has many challenges to body and spirit. Oak Tree’s Outreach Workers connect with women 1-1 and take them to their appointments to ease these challenges. One of the Outreach workers is part of the PWN staff team, an idea that was launched early on in the life of the Clinic. Having an Oak Tree staff person as a part of the PWN team means that information about services, programs and resources travels both ways between Oak Tree and PWN. Better awareness of options provides better support.

Physician Education Project

HIV is different for women than it is for men, a truth that still plays out today, but this was even more evident back in the 90’s when PWN started. The Physician Education Project took place at Grand Rounds sessions in hospitals. Doctors could provide the influence to get into the hospitals, and the team of doctor and positive woman would teach about medical and psychosocial realities of HIV+ women’s lives. This national demonstration project was offered around the Lower Mainland in 1995-1996 and presented at the XII International Conference on AIDS in Vancouver in 1996.

But our membership isn’t limited to the Lower Mainland. We approached several smaller communities in BC about the idea of taking physician education one step further. We didn’t want to just jump in with our experiences. We wanted to know what was happening for positive women locally in their communities, and how we could work together to improve things. The Healthcare Provider’s Education Project was a partnership of Positive Women’s Network, AIDS Prince George (now reshaped and renamed Positive Living North), ANKORS and AIDS Vancouver Island. We worked in each community to discover the issues. We expanded the project to include health care and social service providers beyond primary care or HIV doctors, because we were hearing that HIV phobia and stigma were also problematic outside the medical examining room. We trained local educators so they could make connections in the community that would benefit services and support beyond the end of the project.

Listen UP! Peers get WISE

Listen Up! was a multi-year project of peer driven research and peer-driven education. Positive women interviewed others about the risks that they felt had made them vulnerable to HIV and what resources might have helped them avoid it. Using the information gathered from the peer-research, PWN partnered with communities across BC to talk about the determinants of health and HIV risk for women. Small towns like Chetwynd, Williams Lake and Prince George and communities on Vancouver Island played host to the education team to present data and directions communities could take to support women.

A great project unfolded with YouthCO, Canada’s first youth-driven and youth-run HIV organization. We started together because young women were increasingly at HIV risk and underserved, which led to the Bases Covered awareness project. That evolved into two phases of Women’s Initiatives for Support and Education (WISE.  Peer-to-peer support and education resulted in resource development for young women infected and those who were at risk.

Transition Houses

Violence affects women with HIV significantly. Abusive partners can blame a woman for bringing HIV into the relationship, use it as a means to ensure she will stay in the relationship (“No one will love you now that you have HIV”). They can also control when she can or can’t access health care and support. Enter our partnership with the BC Society of Transition Houses. Many PWN members use transition houses to get out of abusive relationships, but fear they’ll not be welcome can hold them back. We’ve been delivering HIV education to staff at transition houses for years now. HIV transmission information, confidentiality and disclosure, universal precautions and advocacy issues all figure in the sessions.

We value our ongoing partnership with AIDS Vancouver for the Grocery program, and connect regularly with other member groups of the Pacific AIDS Network on committees and short term projects. We’re currently in partnership with Literacy Lives, a project sponsored by Simon Fraser University to increase health literacy of those living with HIV. And we’ve had a fantastic six months working with Tamara Landry, a PhD candidate from Universities Without Walls. Tamara has been interviewing members and community folks in documenting our 20th anniversary.

We believe that partnerships can create awesome possibilities. We’re grateful to the many we’ve worked with over the years, and definitely look forward to more. 

 - Janet 

I was heading towards the corner, hoping to catch the pedestrian light when I saw her. She was walking towards me, and I could see she had a huge black eye. It was not as vivid as it would have been at first, but it hadn’t reached the greenish stage yet. When we passed each other, she looked right at me, and lifted her chin a little.

I’ve seen too many eyes like that in my work here. HIV goes hand in hand with violence. Sometimes a guy will use a woman’s HIV status to toss her around. He blames her for bringing HIV into their relationship, whether his diagnosis came first or not (there’s always a way to twist it, I’ve discovered). Or he tells her that now that she has HIV, she’s worthless, and no one else will love her. She better stick with him.

Violence can lead to HIV too. Sex that’s forced can cause to tearing of vaginal tissue, and that is an opening for HIV and other STIs to get in. Even regular sex can cause tearing. The sexual violence of rape has been used to “control” women in peace and wartime, and still goes on the world over. Many women have been infected with HIV because of violence.

In our work here, we tell women they never deserve it. They have options. We assure them they deserve love and respect, not fists and knives. And we always respect when and how a woman leaves (or doesn’t leave) a violent relationship. Life is complex, relationships complex. There are many reasons to leave a violent relationship. But if you have no home, no money, no means of making any, and the word from your partner that he will hunt you down and kill you, why leave?

When that woman lifted her chin at me as if to say, “Yes, it’s there but I’m surviving,” I thought, right on. Right. On. 

- Janet