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
 

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

(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

The room was packed and the energy positive at the latest HIV Antiretroviral Update put on by the BC Center for Excellence in HIV/AIDS. The “big picture” of international and national issues was discussed, but so was the importance of the one to one relationship between patient and doctor. As it often is, the day was intense but full of interesting information to think over and share.

Women’s Risk factors for HIV

Dr. Neora Pick (new Medical Director of the Oak Tree Clinic) presented an update on HIV Infection in Women, starting with a global picture. Worldwide, women account for 50% of HIV infections. Here in Canada, women represent 22% (just over 1/5) of all HIV infections, but are 26% (a 1/4) of new infections. The highest risk category for women in Canada is heterosexual sex (71%) followed by injection drug use (29%).

Pick emphasized women’s biological risks for HIV (extended exposure to HIV-infected fluids and vulnerability of vaginal tissues). She also talked about the cultural factors that increase women’s risk. Expectations of how women “should” be sexually and limited control over condom use and other harm reduction options make preventing HIV difficult. Women also have to face economic inequality, violence, and forced sex. Young women in their first sexual relationships, often with older men, may not have the power or knowledge to insist on safer sex.

Women Stop Treatment More Often…

When it comes to treatment, there are differences in men and women. Women discontinue drug therapy more often than men due to side effects (“adverse events” in the medication handout lingo). Although doctors don’t have all the answers as to why women experience side effects differently than men, there are some ideas.

Women’s and men’s bodies are different and this could affect how medications work. Women generally weigh less than men and have more fat per pound of body weight than men do (a natural difference). Women have different hormone cycles (ups and downs) and women absorb (metabolize) medications differently than men.

Women on treatment are more likely than men to see changes in body shape, an issue that Pick pointed out is essential for doctors to consider. Some medications can have the side effect of gaining weight in the middle of the body and losing weight in the face, arms and legs. We live in a society where body image is emphasized, especially for women. Doing the best to make sure treatment is chosen to minimize the possibility of body changes is very important. Depression is also an issue for positive women. Pick cited a U.S. study showed that women with depression were less likely to take their HIV medications on the schedule their doctor advised (being adherent). This led to worse health outcomes.

… Yet Do Better Once They Find a Good Combo

Establishing a good treatment combination for women leads to better health. At the beginning of the AIDS epidemic, women did worse than men. But in the last two years, death rates are lower in women than in men. Although women discontinue drug therapy more often due to side effects, once a tolerable regime is established, women do better. Doctors don’t yet know why. Dr. Pick suggested that it could be that with aging overall, women tend to have better health (particularly cardiovascular health) than men.

Overall, the energy at the ARV Update was optimistic. There was recognition that there’s more research that needs to be done (as always) but the options out there are better than we’ve ever seen. Luckily, more than one of the doctors advocated that the medical treatment of HIV isn’t all that needs to be addressed. Stigma, treatment access, harm reduction, social and peer support all need to be in place as well. And that’s what everyone is working on.

- Janet

A more extensive version of this blog is in our July-September newsletter

Serious title of a serious post, yes. But today’s a big day: it’s the 30th anniversary of the first identified cases of what would eventually be called AIDS. The cases puzzled the doctors- seemingly healthy young men suddenly developing pneumonia and dying. What was going on? More cases appeared, and in 1984, the human immunodeficiency virus (HIV) was identified.

HIV attacks the very core of our body’s defence framework: the immune system. It takes over healthy immune cells and uses them to create more copies of HIV. This weakens the immune system over time, and when HIV positive people are exposed to infections or viruses, their body doesn’t have the oomph to fight. In those early days, people fell ill and died quickly with no effective treatment to battle HIV’s progression.

The Challenge for Hope

In 1996 the introduction of Highly Active Antiretroviral Therapy (thankfully shortened to HAART) or Antiretroviral Therapy (ART) began to turn the death toll around. Combination therapies meant multiple pills every day and difficult side effects, but it was worth it for life. For those starting medications now, side effects aren’t as severe or dramatic, but they are still present and nasty for many.

But medications are only available to a select few: those who are insured or live in places where governmental programs cover costs. Universal access is not a reality. And even if it were, would it affect the millions who don’t even know they have HIV? Lack of sexual health education and lack of HIV awareness means many wouldn’t even think to test.

Heads Up- It Could be Anyone

HIV was first diagnosed in communities of men having sex with men, but viruses don’t have brains to judge the morality of people’s sex lives, despite what many faith leaders pronounced. “God’s revenge on homosexuality” is an equal opportunity virus when given the chance.

HIV is transmitted via blood to blood contact, most commonly through unprotected vaginal and anal sex which exposes tender receptor cells in the anus and on the cervix to any number of sexually transmitted infections. It may also be passed from mother to child during pregnancy, but treatment reduces the risk to about 1 in 100 – if it’s accessible. It can also be passed through sharing drug equipment.

HIV is the leading cause of death in African American women aged 25-34. In Canada, Aboriginal women accounted for 49% of new infections among Aboriginal populations between 1998 and 2008. Maybe you don’t belong to either of these identities, but that doesn’t protect you. Learning about HIV can help protect you.

Healing

It’s true that treatment for HIV has improved significantly since 1996. Some people may have to take medication only once a day, a big improvement from the fistfuls multiple times a day. But this shouldn’t rank HIV as a minor detail in one’s health. There are still side effects to living with HIV and HIV treatments. There is still the big stigma. There are still challenges for women in insisting on condom use and safe sex with partners who have no interest in complying. We need prevention options like microbicides, but they’re not available yet.

For those who have not been touched with HIV and think it’s no big worry these days, I suggest think again. Working with HIV+ women tells me a different story every day. And for those who have been affected by HIV, either living with it or knowing someone in their lives who is, you know.

Look after yourself and your partners. Learn about preventing STI transmission and get regular sexual health checkups.

Please love well and live kindly. We’re not done yet.

- Janet

Cross posted at You Should Know

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 posted  ‘Of Course Women-Focused Includes Trans Women.’

As many women can tell you, parenting can be tricky ground. Women who aren’t parents, whether by choice or circumstance, can tell you about the pressure to be a mother or the sadness that they couldn’t become a mom, or what it feels like when they wonder if they should have. Women who do have children can tell you about the pressure to be perfect, the self blame when things don’t go well, the doubt about if they are getting it “right.” In other words, when many women think about children, a lot of emotion’s afoot. Now add HIV to the mix.

HIV and motherhood can be a heavy topic. Before doctors knew how to prevent mother to child transmission, the chances of having a baby infected with HIV if you had HIV yourself was about 1 in 4 (25%), although it depended on the pregnant woman’s health status. With the results of ACTG076 in 1994 that AZT could help prevent transmission during pregnancy, the rates of infection went down to about 8% (less than 1 in 10). These days, if combination therapy is taken as directed, the risk of transmission from mother to child hovers around 1% (1 in 100). 
But there were many women who had no idea they had HIV until their babies became very ill. Some babies died, and mothers mourned the loss of their children and the loss of the future they imagined.

HIV And Parenting Choices

Positive Women’s Network has always held the belief that women should be able to make their own choices about having children. We can provide a woman with information about how HIV can be transmitted from mother to child, but we won’t tell her what to do. Many women who have been positive for ten years or more say one of the first things they were told was that they couldn’t have kids. Time and research has shown that just isn’t true, and if a woman wants to have a child, she certainly can do it without feeling HIV should stop her. Oak Tree Clinic, the women’s specialty clinic for BC, doctors love to talk to women about planning pregnancies so women can go into it healthy and confident.

It’s absolutely great when women bring their new babies in and we all watch them grow and change. Moms will bring their kids to Tuesday lunch, and it’s lovely to have multiple generations around the table.

Not in Front of the Children

While its’ great for members and staff alike to see kids in the Drop-in, we’ve seen that weekend retreats need to be different. Children used to attend retreats with their moms back in the early 90’s. Volunteers held babies and provided activities for the older kids. Moms could rest assured and check in often with their kids. The kids who were old enough to understand their mom’s illness had the freedom to just be, and not worry about saying something that might give it all away, as they had to do at home.

Members always provide feedback on retreats so improvements can be made for ones that follow. When women talked about kids at retreats, a lot was said.

Women whose babies had died felt a resurgence of grief. Women who had lost their babies and children to the foster care system were hit with grief too.  Self-blame, regret, and sadness would arise, getting in the way of the support weekend retreats were designed to provide. 

Women said they felt they couldn’t talk freely about some of the most difficult parts of their lives with children around. In attempts to protect the kids from realities, women couldn’t explore their own.

Moms who left their kids at home wanted the relaxation a kid-free weekend could offer, yet didn’t get it. Some children who attended had HIV themselves, but didn’t know it, even though everyone else did. The secrets of HIV were caught up in time that was supposed to be free of hiding. Moms weren’t able to really let go, because their children might need them. Women who had been told they shouldn’t have kids because of HIV or felt themselves that they shouldn’t have kids had mixed reactions to having kids around. Sadness, anger, resentment, judgment could all come into play.

Space for Support

Ultimately, we realized that having kids at retreats wasn’t contributing to the kind of environment women wanted.  It was a tough decision, because we knew there were benefits to including kids. For a woman who was isolated and unable to find childcare for a whole weekend, bringing her kid was great. 

PWN pays for childcare, but doesn’t arrange it, so if there’s no one a woman can ask/ trust, the money doesn’t matter. We recognize that means some women won’t come to a retreat unless they can bring their kids. Unfortunately, the difficulties faced by the group outweigh the needs of these moms. It’s a decision that’s talked about every time a retreat rolls around. A few years back children attended the Aboriginal Women’s retreat, but at the latest one, space didn’t permit it.

Luckily things have changed for women who want to have kids. HIV treatment is so advanced that the likelihood of having an infected baby is very small. 

We want to provide the healthiest open space for women to connect, learn and share about living with HIV. Having the freedom to do that is important for every woman, whether she’s a parent or not. 

- Janet

To say that Drs. Jack Forbes and David Burdge have changed women’s lives is no exaggeration. As Co-Directors of the Oak Tree Clinic at BC Women’s Hospital, Forbes and Burdge have cared for thousands of women, babies and children living with and affected by HIV here in BC. On April 29, the community will gather in their honour to say thank you and goodbye as they move onto new chapters in their lives.

When Oak Tree Clinic opened in the early 90’s, the multi-disciplinary team provided the best care they could with the limited treatment options available at the time. For women who wanted to have children when prevention of mother to child transmission was mostly praying for luck (with a 75% chance the baby would be okay), Forbes and Burdge provided non-judgmental care, which was rare for positive women wanting to be moms. More often than not in those days, if women were pregnant they were told to terminate, and if they expressed interest in getting pregnant, they were told to give it up. Burdge and Forbes weren’t so quick with that advice, and provided medical and emotional support through joyous and difficult times for many women.

When I mention to members that the two are retiring, the tears and stories are immediate. These men have been great care providers to many.  They now have the satisfaction of seeing some of the babies they held in their arms at the beginnings of their lives become parents themselves. Oak Tree researcher Evelyn Mann smilingly says "The babies are having babies". It is testament to good medical care and support that the connections with Oak Tree have been lifelong, and continue now with the next generation.

While their direct care has been wonderful, they’re no slouches in research and leading peers in direct care guidelines. Forbes has been part of a research team that has worked for decades to better understand HIV infection in infants and children, so we may enhance quality and opportunity in their lives as much as possible. Burdge has contributed to therapeutic guidelines for HIV medications in BC, as well as national guidelines for HIV treatment to women during pregnancy.  

A celebration of their work will be held on April 29 at BC Women’s Hospital. Hopefully you will join us as we honour their legacy and wish them well as they launch into the future. Everyone welcome! Directions below.

Friday April 29, 4 PM

Where: Room D306, BC Women’s Health Centre
Room D-306 is down the hall and one floor below the Oak Tree Clinic

Directions: Come in off of Heather and 29th parking gate go straight and you will see a purple number 77. Enter through those doors, elevator to the 3rd floor; turn right off the elevator, down the hallway across from the washrooms.

- Janet

Five days … one week.  One week of listening, learning and discussing HIV research in Canada.  One week of the worst April weather Toronto has to offer!  This year, Bronwyn, Marcie, Melissa and I were all able to attend CAHR’s annual Canadian Conference on HIV/AIDS Research, as well as the 2-day pre-conference symposium called Toward the development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue.  This was my first CAHR conference and it meant a lot for me to be able to attend.  A good portion of the conference deals with research in basic science, clinical science and epidemiology, but there is also a social science stream that includes community-based research projects and allowed us to share some of our research and best practices (PWN presented three posters at CAHR).  I do have a tendency to find the “political” in almost anything, and as I said I’ve never attended CAHR before, but I think the other gals would agree that this conference had a particularly political tone.

Miriam Martin & Melissa Medjuck with two of PWN’s CAHR 2011 posters.

The four of us were pretty enamoured with Dr. James Orbinski (who was international president of Médecins Sans Frontières (Doctors Without Borders) when they won a Nobel Peace Prize in 1999).  His Mark Wainberg Lecture on Thursday night was heart-breaking, thought-provoking and inspiring all at once.  Of course, I had to run out right after the conference to buy his book – An Imperfect Offering: Humanitarian Action in the Twenty-First Century.  Orbinski argues that humanitarianism—including our efforts to end HIV/AIDS globally—cannot be apolitical:

“I would come to see humanitarianism not as separate from politics but in relation to it, and as a challenge to political choices that too often kill or allow others to be killed.”

A number of other speakers, including PhDs in scientific fields, called openly for an unapologetically political response to HIV.  Dr. Richard Wolitski presented HIV Prevention in the United States: At a Critical Crossroads – a crossroads where we can choose to go down a successful path of coordinated, evidence-based, cost-effective approach to prevention and treatment, or we can keep going the way we’re going … (this is Miriam’s paraphrase). This is the first time I have understood “cost-effective” in a positive light.  Wolitski is not arguing for cost-savings or profitability, but for a response that will actually work to actually defeat the epidemic.  A similar sentiment came out of the pre-conference Women’s symposium.  At that meeting, there seemed to be consensus that greater coordination and planning is needed, so that we are not neglecting some priorities while duplicating work in other areas.

Ontario activist Alex McClelland got some enthusiastic applause during the Ending the epidemic by 2020 panel discussion, when he called openly for political activism and asserted that our programs and research should be “agents of social change”.  Check out this awesome diagram McClelland used to illustrate his point (recreated by Miriam).  On the same panel, Dr. Ahmed Bayoumi said we need to stop apologizing for our harm reduction and equity approach, because it works (again, this is Miriam’s paraphrase).  He highlighted for example, the fact that Vancouver’s supervised injection site (InSite) has saved $14 million and 920 life-years over 10 years (find stat here).

Being at a National conference is always valuable and memorable.  It’s a chance not only to learn, but also to connect with others doing the same work in other places.  I was excited to be attending a conference with a research focus, and thrilled to find that it was also highly political.  As I sit in a café up the street from the Canadian Parliament buildings (yes, I am in Ottawa this week!), I am compelled to remind you to get out and Vote on May 2nd, and to do whatever research you need to do to be comfortable that you are voting to put HIV high on the Canadian agenda.

-Miriam