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 

I finally had a chance to take a look through a report that came out recently called HIV/AIDS Prevention for Women in Canada: A Meta-Ethnographic Synthesis.

It is the result of a research project developed by several universities and national AIDS organizations. The aim was to synthesize the findings of different research and make them available in one convenient source, thereby facilitating evidence-based decision making (always a good thing, right?) when it comes to HIV prevention for women. This is important because women account for an increasing proportion of people living with HIV, and Aboriginal women and African, Black, and Caribbean women face disproportionate rates of infection.

The most important message I gleaned from the report was one we should know already: Stop treating women as a homogenous group. We are not the same. This has long been known by women of colour, who have consistently pointed out that the white middle-class women who dominate feminist movements do not represent all women. Our experiences are different, yet we’re still fighting that beastly notion of the “universal woman.”

The report notes that “the importance of tailored programming and policy cannot be overstated”:

          When women are regarded and treated as a homogeneous group with
          identical HIV prevention needs, the ensuing prevention interventions lack
          the specificity to address the unique determinants of health among the 
          diverse populations of women in Canada.

In regards to ethnicity, it was observed that in general “HIV prevention services were usually not culturally-tailored or sensitive.” And when ethnicity was a factor, programs “often ignored the diversity within ethnic groups.”

Many Aboriginal women find it difficult to reconcile their traditional conceptions of health with the Western medical model. What struck me was that they “described needing to relate HIV to their traditional understanding of health and healing before they could move forward with their personal acceptance of their new HIV-positive identity.” They expressed a need for female staff who understand the historical violence wrought by colonialism and offer culturally appropriate services.

Although Black women are overrepresented among people living with HIV, fewer of them access HIV services than other women. Other issues, such as racism and unemployment, take precedence for them. Prevention messaging also isn’t reaching them, because it’s not directed at them: it’s not in an appropriate language or it focuses on risk groups, such as men who have sex with men and people who use drugs, that don’t seem relevant. Many Black women expressed a need for community leaders to start discussions about HIV, and the church, with its influence and reach, was seen as having great potential to educate about HIV. (There’s a push for this in the US as well.)

What does this mean for HIV prevention initiatives? It means thinking seriously about how to reach those women who are not getting the information they need and also talking and working with those women to figure out the barriers and develop more effective means of communication. It means focusing less on individual risk behaviours, and thinking more about inclusivity and accessibility. It means creating messaging that is relevant and comprehensible and that doesn’t further stigmatize a community. It means pushing beyond the easy, familiar, and comfortable.

It’s not necessarily simple, but it’s not necessarily complicated either. I just came across a neat example: the website of The Coalition Sida des Sourds du Québec, which offers services to people in the province who are deaf or hard of hearing. The website provides information on HIV and other sexually transmitted and blood-borne infections in English and ASL (American Sign Language), and French and LSQ (Québécois sign language).

- Erin

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’m not usually pulled in by the nitty gritty science of HIV. Beyond the basics, I’m easily dazed by the complexity and the jargon. But this week’s top story has piqued my interest a bit and led me to more questions than answers.

A new HIV vaccine has been approved by the United States Food and Drug Administration for human clinical trials, to begin in January 2012—next month!

Developed in Canada by Dr. Chil Yong Kang at the University of Western Ontario, with financing from the company Sumagen Canada, SAV001 is the first HIV vaccine to use a genetically modified killed whole HIV-1 virus, according to the press release. The vaccine is said to have “stimulate[d] strong immune responses in preliminary toxicology tests.”

An effective HIV vaccine has eluded researchers for decades, so this is a development to be both excited and cautious about. I’ve found that the news coverage—which has been heavily reliant on the press release—has left me, as a vaccine layperson, with several questions.  

A KILLED WHOLE VIRUS?

Let’s try to break this down. “Killed” means the virus is inactivated. In the case of SAV001, the virus is made ineffectual through genetic modification, as well as through chemicals and radiation. A live vaccine would have a live, but weakened, virus. Live vaccines tend to be more effective, lasting longer and requiring fewer doses.

“Whole” means that the entire virus is used in the vaccine, which makes sense given that it has been killed. Other vaccines use a piece of a virus, for instance a protein fragment, just enough to trigger an immunological response from the body.  

PRELIMINARY TOXICOLOGY TESTS?

What do those involve exactly? I have no details. I called Keith Marnoch, the director of media relations at the University of Western Ontario, and he told me that “a range of animal testing” was used for SAV001.   

HIV-1?

There are two major types of HIV: HIV-1 and HIV-2. The first is the more common, and the latter is found mainly in West Africa. What are the implications of developing a vaccine using the HIV-1 virus? Will it be ineffective against HIV-2? And given that HIV-1 has several subtypes, will that limit the effectiveness of the vaccine?  

SUMAGEN CANADA?

In addition to being a professor at the University of Western Ontario, Dr. Kang is Sumagen’s chief scientific officer. Sumagen Canada was established in 2008 as a subsidiary of the Korean-based pharmaceutical company Sumagen, which is a subsidiary of Curocom, which is involved in the provision of information technology services to banks. The development of an HIV vaccine is a business venture as much as it is a health initiative—and as we’ve seen with medication, this means that some people’s lives will be saved, while others are allowed to die. Sumagen Canada is ready to profit: It has already patented the vaccine in more than 70 countries.

- Erin

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

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

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 

(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