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

I read a beautiful piece earlier this week from a doctor who cared for a 90 year old gay man in a nursing home. He wrote about the isolation that elderly lesbian gay, bisexual, trans and queer (LGBTQ) people can face. Treating this gentleman who ultimately died alone caused the doctor to reflect on his own gay privilege. 

Coming of age in a time where gay visibility was more accepted, the doctor not only found a partner, he could be out about it, and expand his family to include children. Privilege indeed. And love. And community. Not something that all LGBTQ people have had, or can have.

The waves of homophobia that cause many people to hide or deny who they are haven’t receded completely. People in small towns and large cities still utter homophobic  threats. People still get beaten up or killed for their sexuality.

Things have gotten better in some parts of the world. In a few places, same sex marriage is a legal option. I’m happy to say that here in Canada, that’s the case, even though we’ve had our ups and downs about it. Not everyone was on the same page about it, shall we say. For those who want to have children, things have also improved both socially and clinically. For incidences of hate crimes, well… that’s still a problem the world over.

Those of us working in HIV prevention and support see the effects of homophobia all the time. The idea that gay men= AIDS is still out there. Oh we know that far more people than gay men are infected, and being queer doesn’t equal HIV infection. But many in the general public still see HIV/AIDS as just affecting gay men. It couldn’t affect a “nice” family.  But it can affect anyone. 

One of the gifts of my work at Positive Women’s Network is the community. We create a safe place here for our members, and we are part of a community that is constantly working to confront homophobia, AIDS phobia. I hope it contributes to less isolation and more connection. For everyone. 

- 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

Dear friends,

While I am excited about the opportunities that lie ahead, it is with great sadness that I leave Positive Women’s Network – the workplace and community that has felt like home for me for the last five years. This organization–its amazing staff, members and volunteers–have truly changed my life. PWN has played a key role in shaping who I am as a professional, as an activist, as a woman, and even as a mother.  

I will miss each and every one of you that I’ve had the honour to work with – especially the members and other folks I’ve worked closely with at PAN and CATIE, and the amazing social-networking community that I am just getting to know online (including my new friends at Positive Lite). I will not forget that it’s largely my experience at PWN and the inspiring work of the Canadian HIV/AIDS Legal Network that first got me thinking maybe I really could go to law school and become a lawyer. Thank you for all you’ve given me! I promise that I will be back and serving this community in various ways in future.Until then, keep in touch! Hopefully you will be able to find me on my blog Law School Poor and on Facebook, but I’m gonna be one busy student mom, so time will tell whether I can keep up with the social networking!

Sincerely,

Miriam Martin

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 

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

Facebook, Twitter, email, and post mail are great ways to connect. You can share information about resources, events and referrals. But if you have HIV, any of these connections can be scary. I was reminded of this when I read a recent blog from HIV activist Maria Mejia.

Maria tells the story of how some Facebook friends were afraid that a connection with her would imply they too had HIV. That was something they just couldn’t do. Maria wasn’t surprised, but she was disappointed. She writes about fighting the stigma of HIV both inside and outside the HIV communities.

This is something we’ve grappled with for years. Women feel comfortable and confident with different levels of connection and disclosure of their HIV status. Some members phone in for information and support because they don’t want to have their faces connected with walking through our door- it would indicate they have HIV. Some say they’ll come in and pick up their newsletter so their landlord or roommate doesn’t start to think anything to do with HIV.  (For the record, our envelopes have a return address only and say nothing about supporting women with HIV. But as soon as you punch the address into Google, our name comes up).

When we started our Facebook page, I had women contact me privately and say “I love what you’re doing but I can’t indicate a connection with Positive Women’s Network on Facebook. That’s too public.” I get it. And it makes me mad on their behalf.

Women can connect in whatever way works best for them. Members decide their own comfort level in telling other people they have HIV and in attending events. We’ve always supported that and we’ll keep at it. People can follow Positive Women’s Network on Twitter or like our page on Facebook. The important part is that people connect in the ways that make them most comfortable.

Stigma: still here. Still ugly.

And we’re still fighting.

– Janet