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

The first World AIDS Day was December 1, 1989 with the theme Our Lives, Our World – Let’s Take Care of Each Other. This shared responsibility theme has been recreated over many years on December 1, with a focus on different members of the world community. World AIDS Day is an opportunity to recognize the many ways in which AIDS challenges the world- medically, socially, emotionally and politically.

I’ve come across three different World AIDS Day messages so far. UK National AIDS Trust says Act Aware, UNAIDS is Getting to Zero and here in Canada, the Canadian AIDS Society urges us to Do Something. Over the next few weeks, we’ll be blogging on the different themes.

Act Aware

UK National AIDS Trust breaks down their awareness theme into personal, social and community building approaches:

• Personal:  Learn about HIV transmission and look after yourself and your sex partners
• Social: Educate yourself and others about HIV and raise funds for HIV services
• Community Building:  Share AIDS Day events you’re having or attending. what events you’re holding or being part of on the day itself

I admire their succinct goals, because awareness spans so many possibilities and prejudices. Under the umbrella of awareness, HIV activists have to combat homophobia, transphobia and many of the “isms”- sexism, racism, and classism among them. Awareness is not only a nation (or world) wide conversation; it’s a personal one with individuals-  from sex partners to politicians who’d rather ignore it. 

A Vancouver awareness campaign is the recently launched It’s Different Now. A tagline of the campaign says “We don’t think you’re special” and explains why routine HIV testing is a great idea for everyone who is sexual – putting them at risk for STIs including HIV. Offering tests to everyone rather than those in “at-risk” groups emphasizes the message that HIV is different than it used to be.

Aware is being in the present – in the bedroom or bar, in the emergency department, at the doctor’s. This World AIDS Day and every day, what’s your version of HIV awareness? 

- Janet

Photos: HIV/AIDS blocks: jscreationzs/ freedigitalphtos.net

Circle of friends: savit keawtavee / freedigitalphtos.net

A couple of weekends ago I checked out the Reel Recovery Film Festival, presented in Vancouver by the Orchard Recovery Center and Writers in Treatment. According to the website,

     We showcase local filmmakers and experienced pros who make honest films
     about addiction and recovery. It’s inspiring to gather with other individuals
     to share these new and classic films. The realistic portrayal of these issues in
     cinema is invaluable for the honest conversation that can occur.

I’ve posted on one of the films I saw, On the Corner, which is set in Vancouver’s Downtown Eastside. This week I want to talk about another film set in BC.

The Honour of All (1985) intrigued me because of its basis in real events: The Alkali Lake community in BC went from practically 100% alcoholism in the early 1970s to approximately 95% sobriety by 1985. What’s important to know going into the film—and what I didn’t learn until after viewing it—is that the community made it, and the lead characters were played by the actual people. So what viewers get is not a slick Hollywood production, or even a documentary, but a re-enactment by many of the original people.

The basic story goes like this: Alcohol is introduced to the Alkali Lake community in the 1940s through a trading post. By 1970 every adult is dependent on alcohol, with negative consequences including increased violence, drunk driving, and neglect of children. The sobriety movement begins with two individuals, Phyllis and Andy Chelsea. Phyllis stops drinking after her young daughter refuses to come home with her, and Andy follows soon after. For more than a year, they are the only adherents. Gradually others join them. The real push comes when Andy is elected chief: He clamps down on deliveries of alcohol, gets the RCMP involved in dealing with bootleggers, sets up a voucher system whereby people receive vouchers to trade at stores instead of cash, and sends people for treatment. Other ameliorative measures are introduced as well. For instance, traditional teachers from other communities are invited to share cultural knowledge and practices that have been lost at Alkali Lake, including the sweat lodge. And when people are away for treatment, their houses are repaired.

The Honour of All is lauded as a tool for the sobriety movement, because it is a film of hope and triumph. Yet perhaps because of this, it doesn’t look at the reasons people become dependent on alcohol in the first place, and why Indigenous people are more vulnerable to alcohol dependency. It doesn’t address a number of relevant issues, such as residential schools, loss of language, sexual and physical abuse, incarceration. It peripherally touches on, but doesn’t explore, the role of the Church and poverty and unemployment. (You can read more about Alkali Lake and some of these issues here.) In short, it doesn’t confront the larger story—the ongoing history of colonialism and racism. Issues stemming from this living history also intersect to create the conditions that result in higher rates of HIV infection for Aboriginal people. And, alcohol, for instance, is connected to unplanned sex and coerced sex.

The impacts of colonialism are intergenerational. Several members of the Alkali Lake community attended the film screening, including some who were children when the movie was made, and stated they were in recovery. The ongoing impacts are also evidenced by the upcoming National Aboriginal Addictions Awareness Week (November 13 to 19), as well as the recent release of Honouring Our Strengths: A Renewed Framework to Address Substance Use Issues Among First Nations People in Canada by The Assembly of First Nations, National Native Addictions Partnership Foundation, and Health Canada. A 2008–10 national poll also found that substance abuse was a primary concern among First Nations.

– Erin

It’s not surprising working in this community that people will die. Those who’ve passed on are too many, and most of them wouldn’t want their names associated with HIV even in death- disclosure is too much for unknowing family and friends left behind. But acknowledging the means of death is important because it goes beyond HIV.

Health

Advanced HIV disease, as it’s often called now, used to mean AIDS. And AIDS was a miserable ending. Some women lost their minds to dementia. Others got infections they couldn’t rid themselves of, no matter what. Most women figured they would die within a couple of years, and too many were right. An AIDS diagnosis was a progressive step closer to the end.

Then came 1996, and advances in HIV therapy. A combination of treatments could hold HIV at bay, and give the immune system a fighting chance. Researchers and doctors worked on fine tuning the treatments, developing new ones and learning about how to minimize the side effects of the drugs. The progress has been amazing- someone diagnosed with HIV in 2011 could live almost a normal life span. Triumph over HIV is possible to a great extent.

Yet for lots of women, it’s not just a triumph over HIV that’s needed to save lives.  

Home

Numerous PWN members experience violence in their relationships. Sometimes violence has led to their getting HIV, because the women didn’t feel safe enough to “demand” condom use. And sometimes it’s the other way, with HIV leading to the violence. A man controls and physically dominates his partner, saying that “her” HIV is the reason, and she better stick with him. “Who else would have you?” he asks. 

One member used to be thrown down the stairs on a regular basis by her partner. When our office was in another building with multiple HIV support organizations, we used to have to sneak her out the back when he was after her. She and others like her formed part of our decision to move to a more anonymous space where we could control safety more easily. Women are beaten and killed by their partners every day. We do our best to help women cope and leave should they feel able.

Community

Women are also at risk when they’re at their most vulnerable- on the street, doing survival sex work. Alienated, abused, often drug addicted or well on the way, girls and women end up on the street and support themselves through sex work. The attitude that no one seems to care about them, and if a few are beaten up or killed, it won’t be noticed is distressingly played out all the time. Sadly, the Missing Women Enquiry. supports this. 

PWN members are diverse in health, ethnicity, wealth, status. But all are women who live in cultural and societal circles that can devalue women- circles that can undermine their worth and survival.  At PWN we work with women who have HIV as a common ground, but so often there are other commonalities too- violence, discrimination, sexism. And so our community also unites over death. Our memorial corner has a memory book and a candle. People can sign it or read it as they wish.

Or leave it alone, just knowing that someone important will be missed. No woman goes unnoticed. 

- Janet 

Photo: Simon Howden/ FreeDigitalPhotos.net 

I’ll warn you now; this isn’t a topic that many people want to embrace: end of life planning. I was made well aware of that recently in a meeting when folks admitted their own discomfort with it, but jumped into discussion all the same. One of the folks involved shared a blog from Seattle Mama Doc, who dreads leaving her children when she dies, and knows the best thing is to “plan” her death. But even the good doctor hasn’t done it. 

Whatever health is at the moment- HIV or otherwise- we’re all going to reach the end of our lives at some point. None of us knows exactly when that transition will arrive, but when it does, don’t you want it to happen under your own terms?

I’m not talking assisted suicide- that’s a whole topic in itself. I’m thinking more generally about end of life planning. Do your friends and family know what you want? Do they know what kind of medical care you want to receive? Or what your health care team should do if you can’t communicate? Would you like to be on life support? Would you like to be resuscitated?

Unfortunately, life circumstances can override plans- a violent death, an accident. Too many women, particularly the marginalized, meet end of life this way. I know it’s a possibility, but still feel that thinking about end of life decisions can actually be empowering. So we consider our lives with dignity and grace. We all deserve it.

End of life planning can provide this information to your friends, family and health care professionals so they may care for you as you would like. So you have options even when you can’t speak for yourself. Senator Sharon Carstairs has been quoted as saying Canada is a “death denying society.”

It used to be with HIV, people felt pressured to think about the end immediately. Thank goodness that’s changed for many, but it doesn’t remove the fact that it’s still important to think about what will happen to your belongings, to your children if you’re a parent, to your healthcare if you’re dealing with decisions to be made.

No matter what your health is, it’s something we all should think about. Here are five questions to think about from the Engage with Grace Project. It was inspired by a 32 year old mom who had no idea she would die so young. 

Here in British Columbia, Representation Agreements* can cover a variety of issues you might need support with if your health is in question and you can’t speak for yourself.

- Janet

*Please note that if you had a Representation Agreement in place before September 1, 2011 when legislation changed, you may need to make some changes to it.) 

photo: 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

It’s been a rocky case, and it’s reached a new triumphant plateau for those of us working in health care. The Supreme Court of Canada has ruled that InSite, Vancouver’s controversial safe injection site, can continue to offer health services. The Federal Government’s appeal to the BC Supreme Court decision of 2008 that supported InSite has been defeated.     

InSite opened in 2003 under a special exemption to the Controlled Drugs and Substances Act, as InSite is partly a research facility, looking at the impact of safe injection on a number of factors in public health. The exemption was renewed several times, but in 2008, but the Federal Government balked at another and InSite was slated for closure June 30, 2008. BC Supreme Court Justice Ian Pitfield ruled in May of 2008 that InSite provides health services to addicts, and denying them services would contravene the Charter of Rights and Freedoms. The Federal Government decided to challenge that ruling. PHS Community Services Society, which operates InSite in conjunction with Vancouver Coastal Health, says that the closure would infringe on the rights cited in the Canadian Charter of Rights and Freedoms.

Which leads us to the decision today.

Health care for injecting drug users isn’t the most popular notion for the more conservative minded. Naysayers have said it won’t help people stop using drugs, that it will lead to increases in drug use and increases in crime.  Studies show the opposite.

InSite supports people to access a range of health options needed in the struggle with drug addiction. Abstinence is one option, but not the only one. More supportive options lead to better health outcomes. While one person may deal with their addiction by trying to go “cold turkey” another may not be able to, and a more comprehensive approach will have better and more long-lasting results.

InSite staff includes nurses, counsellors and peer support counsellors. InSite doesn’t supply people with drugs, but staff does help them learn how to use them more safely. Nurses teach about how to avoid getting injection associated illness and infections. They are also immediately on hand when and if an overdose occurs, although overdoses have decreased by a third since InSite opened. When a client expresses interest in going to detox programs, support and referrals are made. There’s also counselling, referrals to housing and social support services. Veteran injectors say it’s saved their lives. But the abstinence only mind of many politicians hasn’t allowed for the spectrum of what recovery and change can look like.

Those against InSite see it as a place of criminality. I see it as a place of health care. Thank goodness the Supreme Court has decided on that vision too. For more of today’s updates on this landmark ruling, follow hashtag #InSite on Twitter. 

- Janet